Caregivers of adults with intellectual disabilities

Caregivers of adults with intellectual disabilities

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Caregivers of adults with intellectual disabilities the relationship of compound caregiving and reciprocity to quality of life
Perkins, Elizabeth A
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[Tampa, Fla]
University of South Florida
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Developmental disabilities
Dissertations, Academic -- Aging Studies -- Doctoral -- USF ( lcsh )
non-fiction ( marcgt )


ABSTRACT: This study investigated the relationship between compound caregiving (i.e. multiple caregiving roles), and reciprocity to the wellbeing of older caregivers of adult children with intellectual disabilities. The study sample was composed of 91 caregivers with a mean age of 60 years. Participants were a convenience sample of caregivers predominantly residing in Florida. Care recipients' mean age was 29 years. Thirty-four were currently compound caregivers. Quality of life indicators used as outcome measures in this dissertation were life satisfaction, depressive symptomatology, physical health, mental health, and desire for alternative residential placement of the care recipient. Compared with the non-compound caregivers, the compound caregivers had increased desire to place their care recipient into residential care. They also spent an average of 12 additional hours per week undertaking the compound caregiving role.Between group differences were not detected in life satisfaction, depressive symptomatology, global physical health, or mental health. The role of reciprocity was investigated using tangible reciprocity (i.e. help with home chores), and emotional reciprocity (i.e. positive emotions). Overall findings indicated that caregivers reported giving more tangible and emotional support than they received, but considerable variability was evident. Relative disadvantage in tangible reciprocity was associated with increased depressive symptomatology, poorer mental health, and reduced desire for residential placement of the care recipient, but not with physical health or life satisfaction. Emotional reciprocity was not associated with any of the outcome measures.Tangible reciprocity and compound caregiving were assessed using hierarchical regression analyses, to investigate their predictive value, after controlling for caregiver demographic variables, care recipient characteristics, and caregiving stressor variables, for mental health, depressive symptomatology, and desire for residential placement. Compound caregiving status was found to predict greater desire for placement over and above the control variables. Tangible reciprocity did not explain any significant variance in any of the regressions. Overall, compound caregivers are more likely to desire residential placement for their care recipient, though no discernable difference existed between compound versus non-compound caregivers in the other outcome measures. Tangible reciprocity had little predictive utility in the present study. Compound caregiving research needs further refinement of more homogeneous groupings of compound caregivers.
Dissertation (Ph.D.)--University of South Florida, 2009.
Includes bibliographical references.
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by Elizabeth A. Perkins.

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Caregivers of adults with intellectual disabilities :
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h [electronic resource] /
by Elizabeth A. Perkins.
[Tampa, Fla] :
University of South Florida,
Title from PDF of title page.
Document formatted into pages; contains 97 pages.
Includes vita.
Dissertation (Ph.D.)--University of South Florida, 2009.
Includes bibliographical references.
Text (Electronic dissertation) in PDF format.
ABSTRACT: This study investigated the relationship between compound caregiving (i.e. multiple caregiving roles), and reciprocity to the wellbeing of older caregivers of adult children with intellectual disabilities. The study sample was composed of 91 caregivers with a mean age of 60 years. Participants were a convenience sample of caregivers predominantly residing in Florida. Care recipients' mean age was 29 years. Thirty-four were currently compound caregivers. Quality of life indicators used as outcome measures in this dissertation were life satisfaction, depressive symptomatology, physical health, mental health, and desire for alternative residential placement of the care recipient. Compared with the non-compound caregivers, the compound caregivers had increased desire to place their care recipient into residential care. They also spent an average of 12 additional hours per week undertaking the compound caregiving role.Between group differences were not detected in life satisfaction, depressive symptomatology, global physical health, or mental health. The role of reciprocity was investigated using tangible reciprocity (i.e. help with home chores), and emotional reciprocity (i.e. positive emotions). Overall findings indicated that caregivers reported giving more tangible and emotional support than they received, but considerable variability was evident. Relative disadvantage in tangible reciprocity was associated with increased depressive symptomatology, poorer mental health, and reduced desire for residential placement of the care recipient, but not with physical health or life satisfaction. Emotional reciprocity was not associated with any of the outcome measures.Tangible reciprocity and compound caregiving were assessed using hierarchical regression analyses, to investigate their predictive value, after controlling for caregiver demographic variables, care recipient characteristics, and caregiving stressor variables, for mental health, depressive symptomatology, and desire for residential placement. Compound caregiving status was found to predict greater desire for placement over and above the control variables. Tangible reciprocity did not explain any significant variance in any of the regressions. Overall, compound caregivers are more likely to desire residential placement for their care recipient, though no discernable difference existed between compound versus non-compound caregivers in the other outcome measures. Tangible reciprocity had little predictive utility in the present study. Compound caregiving research needs further refinement of more homogeneous groupings of compound caregivers.
Mode of access: World Wide Web.
System requirements: World Wide Web browser and PDF reader.
Advisor: William E. Haley, Ph.D.
Developmental disabilities
Dissertations, Academic
x Aging Studies
t USF Electronic Theses and Dissertations.
4 856


C aregivers of Adults with Intellectual Disabilities: The Relationship of Compound Caregiving and Reciprocity to Quality of Life by Elizabeth A Perkins A dissertation submitted in partial fulfillment of the requirements for the degree of Do ctor of Philosophy School of Aging Studies College of Behavioral and Community Science s University of South Florida Major Professor: William E. Haley Ph.D Matthew P. Janicki, Ph.D Cathy L. McEvoy, Ph.D Sandra L. Reynolds, Ph.D Brent J. Small, Ph.D Da te of Approval: November 4, 2009 Keywords: developmental disabilities, aging, caregiving, parents family Copyright 2009, Elizabeth A. Perkins


Dedication I dedicate this dissertation to my wonderful father Richard Arthur Brinsley Perkins 1941 2009 A lover of life, an adventurer, a man who believed anything was possible. So much of who I was, who I am now, and who I will be, both personally and pr ofessionally, is because of you.


Acknowledgments I would like t o convey my sincere gratitude to all my committee members : Dr. William E. Haley: A master mentor! Thank you for always challenging me to exceed my own expectations. I am forever gra teful to have been your student! Dr. Matt Janicki: Thank you for always respecting my opinions valuing my judgment, and supporting all my e ndeavors in the aging and intellectual disabilities field. Dr. Sandy Reynolds: For all your enthusiasm, interest, and support over the years. Dr. Brent Small: For your pragmatism, guida nce, and encouragement. Dr. Cathy McEvoy: Your office was always a safe haven during both good and bad times. Dr. Krista Kutash: For being a wonderful chair at my defense. Thank you to the faculty, staff, and students in the School of Aging Studies, and t he Department of Aging and Mental Health Disparities for your guidance, friendship, and support. Finally, You gave me such an enriching learning experience f r o m your willing ness to share the details of your li v e s I am also indebted to all those that helped to promote my study.


i T able of Contents List of Tables ................................ ................................ ................................ ..................... vi List of Figures ................................ ................................ ................................ ................... vii Abstract ................................ ................................ ................................ ............................ v iii Chapter One : Background ................................ ................................ ................................ .... 1 General I ntroduction ................................ ................................ ................................ 1 Overview of Intellectual Developmental Disabiliti es ................................ .............. 1 Developmental/Intellectual Disabilities T erminology ................................ 1 Historical Perspectives, Guiding Philosophies of Care, and the Impac t of D e instituti onalization ................................ ............................ 4 Demographic Trends ................................ ................................ .................... 7 Ramifications of Increased Longevity and Changes in Residential Status ................................ ................................ ................................ ..... 9 Chapter Two : Overview of General Caregiving Issues ................................ ..................... 1 0 The Scope of Caregiving in the USA ................................ ................................ .... 1 0 General Caregiving Research ................................ ................................ .... 1 1 Physical, Psychological, Social, and Financial Consequences of Caregiving ................................ ................................ ............................ 1 2 Positive Experiences of Car egiving ................................ ........................... 1 5 Family Caregiving for Adults with Intellectual Disabilities ................................ .. 1 5 Potentially Adverse Factors of Family Caregiving Aging, and Intellectual Disabilitie s ................................ ................................ ................................ ....... 16 Extensive Duration of Caregiving Role ................................ .................... 1 6 Additional Health Concerns Due to Aging Process in Care Recipient ...... 1 7 Fears About the Long term Care of the Care Recipient ........................... 2 0 Potential Beneficial Factors of Fa m ily Caregiving with Aging and I ntellectual Disabilities ................................ ................................ .................... 2 2 Normative Nature of Parental Caregivin g ................................ ............... 2 3 Expertise and Feelings of Mastery Gai ned From Long T erm Caregiving ................................ ................................ ............................ 2 4 Appl ication of the Stress and Coping Paradigm to Study Caregiving .................. 2 5 Car eg iving Interventions ................................ ................................ ........................ 2 8 Impact of Compounded Caregiving Duties on Aging Caregiver .......................... 3 0 Investigation int o the Function of Reciprocity ................................ ..................... 3 2 Previous Studies of Reciprocity ................................ ................................ 3 4


ii Typologies of Reciprocity ................................ ................................ .......... 3 7 Measure ment Issues ................................ ................................ ................... 3 8 Reciprocity and I ntellectual D isability Caregiving ................................ .... 4 0 Guiding Theoretical Model of Dissertation ................................ .............. 4 3 Research Question s ................................ ................................ .................... 4 4 Chapter Three: Research Method ology ................................ ................................ ............. 4 6 Study Design ................................ ................................ ................................ .......... 4 6 Participants ................................ ................................ ................................ 4 6 Recruitment Procedure ................................ ................................ .............. 4 6 Measures ................................ ................................ ................................ ................ 4 7 Independent Varia bles ................................ ................................ ............... 4 7 C are giver Demographic Information ................................ ............. 4 8 Care Reci pient Demographic Information ................................ ..... 4 8 Coresidency Status ................................ ................................ ......... 4 9 Independent Variables to Inv estigate Research Hypotheses .................... 4 9 Compound Caregiver Status ................................ .......................... 4 9 Reciprocity ................................ ................................ ..................... 5 0 Outcome Measures ................................ ................................ ..................... 5 3 Global Physical and Mental Health ................................ ............... 5 3 Depressive Symptomatology ................................ ......................... 5 4 Life Satisfaction ................................ ................................ ............. 5 5 Des ire for Residential Placement ................................ ................... 5 5 Statistical Approach ................................ ................................ ................... 5 5 Chapter Four: Findings ................................ ................................ ................................ ...... 5 8 Sample Characteristics ................................ ................................ ........................... 5 8 Caregiver Characteris tics ................................ ................................ ........... 5 8 Ca re Recipient Characteristic s ................................ ................................ ... 6 0 Compound Caregiver Char acteristics ................................ ........................ 6 1 Comparisons between Compound and Non Compound Caregivers ......... 6 2 Research Question 1 ................................ ................................ .............................. 6 4 Research Question 2 ................................ ................................ .............................. 6 5 Research Question 3 ................................ ................................ .............................. 6 6 Regression M odel Depressive Symptomatology ................................ ..... 6 9 Regression Model Global Mental Health ................................ ................ 7 0 Regression Model Desire to Place ................................ ........................... 7 1 Chapter Five: Discussion ................................ ................................ ................................ ... 7 2 Study Findings ................................ ................................ ................................ ....... 7 2 Other Relevant Findings ................................ ................................ ........................ 7 8 Study Limitations ................................ ................................ ................................ ... 8 0 Future Di rections ................................ ................................ ................................ ... 8 2 References ................................ ................................ ................................ .......................... 8 5


iii About the Author ................................ ................................ ................................ ... End Page


iv List of Tables Table 4.1 Sample C aregiver and Care Recipient Characteristics .............................. 5 9 Table 4.2 Mean and Standard Deviation for Main Outcome Measures .................... 6 1 Table 4.3 Issue ................................ ................................ ................................ ........... 6 2 Table 4.4 T Test Analyses Compound ve rsus Non Compound Caregivers ............ 6 3 Table 4.5 Chi Square Analyses Compound versus Non Compound Caregivers ................................ ................................ ................................ .. 6 4 Table 4.6 Compound versus Non Compound Caregivers in Outcome Measures ................................ ................................ ................................ .... 6 5 Table 4.7 Correlation Matri x for All Study Variables ................................ ............... 6 8 Table 4.8 Hierarchical Reg ression Analysis Predicting Depressive Symptomatology ................................ ................................ ........................ 6 9 Table 4.9 Hierarchical Regression Analysis Predicting Global Mental Health ......... 7 0 Table 4.10 Hierarchical Regression Analysis Predicting Desire For Place ment ......... 7 1


v List of Figures Figure 1 .1 Stress and Coping: A Balancing Act ................................ ......................... 2 8


vi C aregivers of Adults with Intellectual Disabilities: The Relationship of Compound Caregiving and Reciprocity to Quality of Life Elizabeth A. Perkins ABSTRACT This study investigated the relationship between compound caregiving (i.e. multiple ca regiving roles), and reciprocity to the wellbeing of older caregivers of adult children with intellectual disabilit ies. The study sample was composed of 91 caregivers with a mean age of 60 year s Participants were a convenience sample of caregivers predominantly residing in Florida. C 29 years Thirty four were current ly c ompound caregivers. Quality of life indicators used as outcome measures in this dissertation were life satisfaction, depressive symptomatology, physical health, mental health, and desire for alternative residential placement of the care recipient Compared with the non compo und caregivers, the compound caregivers had increased desire to place their care recipient into residential care. They also spent an average of 12 additional hours per week undertaking the compound caregiving role. Between group differences were not detect ed in life satisfaction, depressive symptomatology, global physical health, or mental health. The role of reciprocity was investigated using tangible reciprocity (i.e. help with home chores), and emotional recipro city ( i.e. positiv e emotions). Overall fi ndings indicated that caregivers reported giving more tangible and emotional support than they


vii received, but considerable variability was evident. Relative disadvantage in tangible reciprocity was associated with increased depressive symptomatology, poorer mental health, and reduced desire for residential placement of the care recipient, but not with physical health or life satisfaction. Emotional reciprocity was not associated with any of the outcome measures. Tangible reciprocity and compound caregiving were assessed using hierarchical regression analyses, to investigate the ir predictive value after controlling for caregiver demographic variables, care recipient characteristics, and caregiving stressor variables, for mental health, depressive symptomato logy, and desire for residential placement. Compound caregiving status was found to predict greater desire for placement over and above the control variables. Tangi ble reciprocity did not explain any significant variance in any of the regressions. Overal l, compound caregivers are more likely to desire residential placement for their care recipient, though no discernable difference existed between compound versus non compound caregivers in the other outcome measures. Tangible reciprocity had little predict ive utility in the present study. Compound caregiving research needs further refinement of more homogeneous groupings of compound caregivers.


1 Chapter One: Background General Introduction The central theme of this dissertation wa s to explore fa ctors that may impact the quality of life outcomes for aging caregivers of co residing adult children with intellectual disabilities (ID) In order to provide a comprehensive background of the ex tant literature several areas need consideration. The backgr ound information describe s terminology, historical perspectives and demographic trends within the ID field. The next section provide s an overview of general caregiving issues including positive and negative physical and mental health outcomes noted in th e broader caregiving literature, followed by ID specific caregiving issues The Str ess and Coping paradigm, is introduced as the guiding theoretical model for this dissertation, and its applicability to the design of caregiving intervention studies will be noted This dissertation study addressed two important and unanswered questions in the field namely the relationship of reciprocity and multiple simultaneous caregiving roles to the well being of caregivers. Overview of Intellectual/Developmental Disabil ities Developmental/ Intellectual Disabilities Terminology Within the field of developmental and intellectual disabilities there are a number of key terms that require definitions and clarification before proceeding any further. The federal definition o f d evelopm ental d isabilities (DD) as defined by the


2 Developmental Disabilities Assistance and Bill of Rights Act of 1990 (PL98 527), refers to a severe, chronic disability of a person 5 years or older that 1. is attributable to a mental or physical impair ment or combination of mental and physical impairments; 2. is manifested before the person attains age 22; 3. is likely to continue indefinitely; 4. results in substantial functional limitations in three or more of the following areas of major life activit y: (a) self care, (b) receptive and expressive language, (c) learning, (d) mobility, (e) self direction, (f) capacity for independent living and (g) economic self sufficiency; sciplinary, or generic care, treatment, or other services that are lifelong or of extended duration and are individually planned and coordinated. Generally, some common conditions that are considered developmental disabilities include cerebral palsy, epil epsy, autism, and intellectual disabilities. Approximately 2 3% of the population is comprised of individuals with DD (Crocker, 2006) Though the terms developmental and intellectual disability are often used synonymously, there is a notable difference. I ntellectual disability refers specifically to a subset of the population with developmental disabilities, whose major functional limitations is predicated primarily by intellec tual and cognitive limitations. Thus, it is p ossible for a person to have a deve lopmental d isa bility, but not necessarily an


3 i ntellectual d is ability, such as a person with cerebral p alsy who has normal intellectual functioning. However, a person with ID always has a DD. The American Psychological Association (APA) in the Manual of D iagnosis and Professional Practice in Mental Retardation defines m ental r etardation (i.e. ID), as (a) referring to significant limitations in general intellectual functioning; (b) significant limitations in adaptive functioning, which exist concurrently; a nd (c) onset of intellectual and adaptive limitat ions occurred before the age of 22 years ( Jacobso n & Mulick, 1996). Traditionally the level of intellectual disability present has been described in terms of mild, moderate, severe and profound ( Jacobson & M ulick, 1996 ). These levels were primarily linked with the assessed IQ level where ID was apparently manifested, normally at 2 or more standard deviations (SD) of intellectual functioning from the population mean on standardized IQ tests Also, the number o f concurrent limitations in domains of adaptive functioning (AF) is also considered There are three major domains of adaptive functioning ; conceptual, social and practical Mild ID has IQ scores within the ra nges of 5 5 70 domain s in AF). For moderate ID, IQ is within 35 54 AF ) For severe ID, IQ falls between 20 34 3 d omains of adaptive f unctioning), ( Jacobson & Mulick, 1996) According to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM IV TR; A merican Psychiatric Association (APA) 2000) i 85% ha ve mild ID, 10% have moderate ID, 2 4% have se vere, and 1 2% have profound ID. The true prevalence of intellectual d isabilities has been difficult to determine, but is


4 estimated in the DSM IV TR to be approximately 1 % of the population This equates to app roximately 3 million people in the USA. Historical Perspective s, Guiding Philosophies of Care and the Impact of D einstitutionalization The residential status of persons with ID has varied considerably over time often reflecting the predominant guiding p hilosophy of care Segregation in large scale institutions was once the norm due to overt medicalization of conditions associated with ID. This was a time when a generic plan of care w as provided to persons with ID, and was not effective at recognizing in dividual differences. P ersons with ID were routinely removed from their family home and community with the encouragem ent of professionals specialized medical setting s Unfortunately, most of thes e institutions were geographically isolated from their surrounding population leading them to become (Heaton Ward, 1975) It is not unreasonable to assert that t his s egregation actually fostered further stigma and misunderstanding of p eople with ID. Major changes in the last 30 40 years have been the result of a seismic shift in advocating for the fundamental and basic civil liberties that should be afforded to persons with ID. A major catalyst for this change was the United Nations D eclaration of the Right s of Mentally Retarded Persons in 1971 as well as the philosophies of normalization in which were demanded for all persons w ith ID ( Wolfensberger, 1983, p.234). The major themes of the UN d eclaration and normalization philosophies, were that persons with ID have the same rights as all other human beings, have the right


5 to education, t raining and therapy, have the right of econ omic security and access to meaningful occupation, and should live with their own families and participate in community life These principles were also guided by the notion that as long as persons with ID were segregated from mainstream community, they w ould be perpetually stigmatized. Institutionalized living was not normal community living, and without living within the community, full participation and inclusion within the community would never be achieved. Though these rights seem basic and self evi dent, one must pause to consider that conditions in long term institutions were, for the most part, deplorable and inhumane. Expos s of instituti onalized life, both fictional ( e.g. Kesey, 1962) and factual ( e.g. Blatt & Kaplan 1966) helped to publicize su ch atrocities where access to education, occupation, personal relationships, personal development and choice and autonomy over was practically non existent. E ven basic choices for food, clothes, haircuts, leisure activities and adornme were either denied or seriously curtailed A n important influence of normalization was that persons with ID are not sick per se but do require lifelong care and support over their lifespan. The developm ental model was pr esen ted as stark contr ast to the medical model that vie wed intellectual disability as an incurable medical issue (Wolfensberge r, 1976). As described by Wolfensberger the s t rong negative value. Even if severely retarded, he is perceived as capable of growth, d ( 1976, p. 44)


6 Th e result of the changes i n philosophical approaches to the care and rights of persons with ID, led to the closure of many la rge institutions (i.e. deinstitutionalization) and extensive resettlement programs to community housing. S maller more home like community based settings with access to specialist medical/social services when required became widely advocated. The provisio n of community based residential homes has been implemented very successfully over the last few decades. Persons with ID now live in a s many varied residential settings as the non ID population. Many alternatives now exist, including independent supported living, small group homes, and staying within the family home. In fact, due to supports available to families, including access to special education and occupational opportunities, there has been a tremendous increase in the number of persons with ID who r emain living at their parental home for their entire lifetime Recent figures from 2006 suggest that of the 4.7 million persons with I/DD in the USA, 2.8 million were residing with family caregivers (Braddock, Hemp, & Rizzolo, 2008) Furthermore, 715,000 w ere residing with family caregivers aged 60+ ( Braddock 1999 ; Fujiura, 1998; U.S. Census Burea u 2007). Generally, the percentages for where persons with ID reside have remained fairly stable over the past decade Around 60% live with a parent caregiver, 15 % live with their spouse, 13% live independently, and 12% live in a supervised residential facility (Fujiura, 1998; Braddock,1999; Braddock, Hemp & Rizzolo, 2008). Among t hose who reside in residential facilities, around 20% live within type residential facili ties ( state institutions and nursing homes that are serving 16 or more persons) and the majority reside in smaller group homes numbers ( Braddock, He mp, & Rizzolo, 2005). Between 1977 2005 the population within state


7 institutions n ationwide dropped 74%, an indicator of the success of resettlement policy nationwide (Lakin, Prouty, & Coucouvanis, 2006). Forensic considerations aside, it is a failure of current funding/support systems that there are still persons with ID who reside in an institutionalized setting. This happens when there is no state provided, agency provided or family provided residential alternative in their geographic locale to adequately serve their needs. Current i nstitutionalized populations are usually persons wi th severe / profound ID with considerable psychiatric or physical comorbidities and/or severe challenging behaviors However, regardless of severity of ID and comorbidity, the vast majority of the ID population could be successfully supported in community s ettings, if there was sufficient care/funding mechanisms in place to meet their needs. Presently, i t is also the case that alternative residential placements are subject to considerable waiting lists as demand currently outstrips current capacity due to re stricted funding and lack of physical accommodation (Prou t y Smith, & Lakin, 2003). Nevertheless, t he residential status of persons with ID is one place where monumental change has been evidenced from guiding philosophies being embraced and implemented by policy and stakeholders. It is clear by far that now the major residential status of the majority of the population with ID. Demographic Trends As with the general population, the life expectancy of persons with ID has risen s ubstantially during the last century. Indeed, the increase in the ID population has been greater, and has occurred more recently and more rapidly. The development and implementation of holistic, individualized and proactive care philosophies has


8 undoubte dly factored into the striking increase in longevity (Haley & Perkins, 2004). This is largely due to improvements in medical treatment of commonly associated comorbidities, such as cardiac problems and epilepsy (Haley & Perkins, 2004) as well as successfu l treatment of recurrent respiratory infections that was responsible for many premature deaths in childhood In terms of life expectancy there is still disparity between the general population, persons with ID and persons with Down syndrome (Janicki, Dal ton, Henderson & Davidson, 1999), but the gain in the latter two populations has been substantial. To illustrate, b etween the 1930's and the mean age at death for persons with ID increased 47 years, from 18.5 years to 66.2 years (Braddock, 1999). Persons with Down s yndrome do still have a reduced life expectancy compared with others in the ID population but, nevertheless, they too have a much more extended lifespan In the early owitz, 1990 ). From 198 4 to 1993, mean age of death for those already 40 and above, had reached 55.8 years (Janicki, Dalton, Henderson & Davidson, 1999). Due to genetic and endocrinological factors, people with Down syndrome (DS) are likely to retain their reduced life expecta ncy as their aging process is more precocious. I t is evident that the aging population of people with ID has risen at a greatly accelerated rate compared to the general population. Indeed, it has been suggested that for all other adults with ID, particu larly those without serious associated physical/medical conditions, the disparity between their life expectancy and that of the general populatio n will continue to decrease (Janicki, 1996).


9 Ramifications of I ncrea sed L ongevity and C hanges in Residential S tatus I ncreased life expectancy and changes in residential status have transformed the lives of many persons with ID. Persons with ID a re now a visible part of the community, and live predominantly with their families Historically, it was the norm for m any parent s to survive their child with ID but it is now apparent that more persons with ID are aging into older adulthood Therefore this increases the likelihood of older adults wi th ID, who will outlive their parents. T he following crude comparison se rves to illustrate this emerging trend T o argue this case effectively, one must also consider that increases in life expectancy (L.E.) has occurred in parents too. In both cases, the assumption is made that the parent has a child with ID, at age 25. A p arent born in 1910 (L.E. = 51.5 years ; Arias, 2006) who had a child in 1930 (L.E. = 18.5 years ; Braddock, 1999) would themselves expect to live until 1961, but their child would have already died in 1953 Thus the average parent would have outlive d their child by 8 years. If we now consider a parent born in 1970 (L.E. = 70.8 years; Arias, 2006 ), who had a child in 1995 (L. E. = 66.2 years; Braddock, 1999), the parent would expect to die in 2040. However, their child would live to 2061 Therefore, an ave rage child with ID born in the 199 5 w ould now be expected to outlive their parent by 21 years. Thus it appears that many adult children with ID will remain living within their family home receiving care and assistance from their aging parents and increa singly face the prospect of ultimately outliving the se exceptional caregivers Research into caregiver quality of life is particularly significant as more of these caregivers look set to devote the entirety of their life to this role.


10 Chapter Two: Overview of General Caregiving Issues The Scope of Caregiving in the USA The focus of this dissertation wa s the physical and mental well being of family caregivers of adult s with ID. It is useful to consider general findings about the caregiv ing experience as a precursor to the consideration of the caregiving experiences in the ID population. T he importance of caregiving can not be more succinctly expressed than by the following quote by former first lady Rosalynn Carter, s of people in this world: Those who have been caregivers, those who currently are caregivers, those This quote hints at the pervasive nature of being a caregiver, knowing a caregiver, or needin g a caregiver. Indeed, 44 million (over 1/5) of the US population are currently actively providing unpaid informal caregiving tasks to a relative or close friend age 18 and older (Na tional Alliance for Caregiving & AARP, 2004 ). This figure does not include the substantial number of people who have previously undertaken caregiving responsibilities that have ceased either due to transfer to long term residential/nursing care, or from the death of the care recipient. The care and responsibil i ties undertake n by caregivers on a daily basis is considerable, both in economic terms and its sociological impact. Perhaps the most important aspect of family caregiving is that it helps to maintain family structures, enable s care recipient s to remain in their home env ironment, and enjoy the benefit s of


11 receiving individualized attention (Perkins, Lynn, & Haley, 2007 ). After all no one is more familiar with personal likes, dislikes and mannerisms than their own family members who become their caregivers It has bee n estimated that if the informal unpaid services undertaken the family caregivers were provided by staff requiring remuneration, the cost would be a staggering 306 billion dollars a nnually (National Family Caregivers Associati on & Family Caregiver Alliance 2006) Informal and unpaid f amily caregivers actually provide 78% of long term care in the United States (Thompson, 2004). Compare this with those cared by combinations of formal and informal long term care providers (14%) and formal providers (8%) alone (Thompson, 2004) Caregivers undoubtedly provide the mainstay of care, saving the economy billions of dollars, while maximizing the amount of time that care recipients can stay within their own home. G eneral Caregiving Research Given t he ubiquitous natur e of the caregiving experience, considerable research has been undertaken to study the health impacts and quality of life issues that a caregiver encounters. Although caregiving research predominantly arose out of the study of caregivers to those with dem Bach Peterson, 1980; Haley, Levine, Brown, & Bartolucci, 1987) it has rapidly broadened its sphere of inquiry to investigate the caregiving experience for a variety of illnesses and chronic cond itions, such as as cancer (e.g. Vanderwerker, Laff, Kadan Lottick, McColl, & Prigerson, 2005), Acquired Immune Deficiency Syndrome (Folkman, Chesney, Cooke, Boccellari, & Collette, 1994), stroke (McCullagh, Brigstocke, Donaldson, & Kalra, 2005), multipl e sclerosis (Cheung & Hicking, 2004) and


12 Martn et al., 2005). Furthermore, unique subpopulations of caregivers to those with lifelong chronic impairment or disability have also received research interest. These include caregi vers for adult children with severe mental health problems (McDonell, Short, Berry, & Dyck, 2003), and the subject of this dissertation, caregivers of adult children with intellectual disabilities (e.g. Chen, Ryan Henry, Heller, & Chen, 20 01; Haley & Perk ins, 2004). Physical, Psychological, Social, and Financial Consequences of Caregiving Even though research has generally broadened to look at the issues that caregivers encounter from particular conditions or subpopulations discussed above one is able to identify four common domains that have been noted to lead to adverse consequences across most caregiving sit u ations The y are the physical impacts of caregiving, the psychological impact s of caregiving, the consequences of caregiving on and social life, as well as the financial implications of performing a caregiving role long term. These domains can transpire irrespective of the particular idiosyncrasies of each caregiving circumstance. Regarding physical health, e arlier studi es were quick to identify that the considerable stress of caregiving can lead to wellbeing in clinically measurable ways Caregiving stress can result in blood pressure elevations (King, Oka, & Young, 1994) and increased i nsulin levels ( Vitaliano, Scanlan, Krenz, Schwartz, & Marcovina, 1996), and greater risk of developing cardiovascular disease (Lee, Colditz, Berkman, & Kawachi 2003). Caregiving stress can lead to compromised functioning of the immune system (Kiecolt G laser, Dura, Speicher, Trask, & Glaser, 1991), and more specifically, increase the healing time for standardized wounds (Kiecolt


13 Glaser, Marucha, Malarkey, Mercado, & Glaser, 1995) The stress of being a caregiver own immune system to function optimally, making the caregiver more susceptible to infections and illness. One of the most disturbing findings in this line of research was that merely being a highly strained caregiver was found to be an independent risk fac tor for significantly elevated mortality over several years (Schulz & Beach, 1999). The potential adverse consequences of car egiving on psychological health have also been investigated. Caregivers have been noted to have an increased risk of d eveloping depressive disorders (approximately 30%) or suffering from significant depressive symptoms (55%), when they are compared matched control groups and population norms 1999). Caregivers also report significant decrements in other indicators of psychological well being. Compared with noncaregiving controls, caregivers report increased feelings of stress, lower levels of self efficacy and lower levels of subjective well being (Pinquart & S rensen, 2003). Physical and psychological impacts aside, c aregiving has also been acknowledged to have very serious implications for the quality of relationships and cohe siveness between the caregiver and other family. One notable consequence is that performing caregiving duties can drastically reduce the amount of time available for the caregiver to interact with their other family members, and friends (NAC & AARP, 2004). S upervision of a care recipient often leads to subs tantial reductions in the vacations, hobbies, and leisure activities that a caregiver can


14 independently undertake a consequence that may worsen over time as the care recipient becomes increasingly incapacitated (NAC & AARP, 2004). Furt hermore, as social contacts become increasingly difficult to be adequately nurtured, and social interaction and participation in social activities declines caregivers are unsurprisingly, at greater risk for increasing social isolation, often resulting in a substantial redu ction in social support over time (Haley & Bailey, 1999; Robinson Whelen, Tada, MacCallum, McGuire, & Kiecolt Glaser, 2001). The fact that the time when caregiving duties are getting more demanding, is likely to coincide with less social support being read ily accessible, is one of the most unfortunate social outcomes of the caregiving experi ence (Perkins, Lynn & Haley, 2007). Finally, the decision to undertake caregiving duties can result in substantial fi nancial penalties to the primary caregiver and their family (Langa et al., 2001). Financial difficulties can arise from being unable to fully participate in the workforce, due to inflexible scheduling demands and the inability to undertake work outside of the home setting. Another factor is that the level o f supervision and care provided depending upon the caregiving scenario can be unpredictable, again leading to difficulty in securing continuous employment with benefits or cessation of employment due to increased caregiving responsibilities (e.g., Schulz et al., 2003). A further consideration is that an alternative caregiver is required to fill i n for the primary caregiver. I f a formal caregiver is employed, then the financial benefit derived from the outside employment is reduced. Otherwise, one has to fi nd an alternative caregiver who is someone who also has the


15 time and resources to freely commit to the caregiving duties in the absence of the primary caregiver. The caregiver can span many years and therefore the earning capacity of a prim ary caregiver, coupled with out of pocket expenses that can accrue with caregiving, can greatly interfere with the financial status of the primary caregiver and indeed the rest of their family This can place a chronic financial strain on the caregiver, wh ich can lead to an inability to invest for their current personal and future retirement needs or even the abandonment of planned retirement in response to the caregiving role Positive E xperiences of C aregiving Even though the foregoing could be stated t o depict the worse case scenarios for adverse outcomes for caregiving, it should also be acknowledged that being a caregiver can and does bring intrinsic rewards. The role of caregiver can be very empowering to a, Tempelaar, Sanderman, & van den Bos, 1999). C aregivers report that the role of caregiver makes them feel useful and needed, increases their appreciation of life in general, helps them actually develop a more positive attitude, and often helps strengthe n the bonds of their relationships (Tarlow et al., 2004). Family Caregiving for Adults with Intellectual Disabilities Potentially Adverse Factors of Family Caregiving, Aging, and ID Although aging family caregivers of adults with ID are likely to have sim ilar challenges as those in the general caregiving community, neverthel ess, they are also a unique group of the caregiving population that also face distinctively different circumstances from caregivers of persons that have developed illnesses or disabili ties that have arisen from accident or trauma. The extended duration of the caregiving role,


16 additional health i ssues of the aging care recipient and anxiety for the future well being of the care recipient are three factors that need to be considered (Ha ley & Perkins, 2004). Extensive duration of the c aregiving r ole The average caregiving career, i.e. the period of time that a caregiver provides assistance to a spouse or older family member with a chronic illness is approximately 4.3 years ( National All iance for Caregiving & AARP 2004 ). However, caregiving for a child with ID is unless interrupted by alternative residential placement, a lifelong endeavor which spans many decades. Indeed, these caregiver s may never have any period in their life free from caregiving responsibilities and roles. One can say that a parent is a parent for their lifetime, but in the vast majority of cases, at some point children become financially independent, co residence ceases, and children will forge their own direction in life and start their own families, independent of their parents. For the majority of persons with ID, residence with family caregivers will continue until either alternative residential placement is sought, either for upholding a sense of independence for the adult with ID, or when the caregiver is no longer willing or able to perform their role due to illness or disability in either or both caregiver and care recipient. C aregiving for people with ID may result in increased vulnerability and social is olation purely because of the extended period that caregiving is undertaken. Seltzer, Greenberg, Floyd, Pettee and Hong (2001) analyzed data from the Wisconsin Longitudinal Study (WLS) of parents who had a child with ID compared to non ID control parents The WLS has tracked 10,000 adults and interviewed them at age 18, 36, and 53 54 years. Seltzer et al. found that parents of children with ID reported significantly lower rates of social participation compared with control parents (2001).


17 Todd and Shea rn (1996) recognized the importance of cognitive appraisals expressed by parents of children with ID regard ing their caregiving role an important consideration given its potential lifelong duration Todd and Shearn categorized parents as being either "cap tive" or "captivated". Captivated caregivers endorse the fact that they have embraced their role, and found much contentment and purpose because of it. On the other hand, c aptive caregivers feel trapped in their role, and that their own life ambitions have been overshadowed. T hese categories were utilized in a study of the quality of life of ID parental caregivers and it was reported that captive parents reported significantly higher levels of parental stress, and pessimism (Walden, Pistrang & Joyce, 2000) One fundamental difference noted between the captive and captivated parents was that the children of captive parents exhibited significantly more challenging behavior s Challenging behavior has long been noted in previous research to be associated increa sed stress and burden in caregivers of persons with ID (Black, Cohn, Smull, & Crites, 1985; Dumas, Wolf, Fisman & Culligan, 1991; Grant & McGrath, 19 90; Heller & Factor, 1993). In the ID field c hallenging behavior s refer to a set of problematic behavio rs that place both the caregiver and their care recipient at risk for adverse outcomes for their health, safety and welfare (Emerson, 2001) as well as often resulting in social isolation. In particular, challenging behaviors include aggression, destructiv eness, overactivity, self injury, inappropriate sexual contact/conduct, bizarre mannerisms, and eating inappropriate objects/substances (i.e. pica) ( Emerson, 2001). Additional health concerns due to aging process in care r ecipient Over the course of their caregiver may have already faced an array of medical crises and might be well adapted to coping with changes in associated


18 physical disabilities and health conditions that have arisen over the years. However, physical changes due to ag ing, or aging related health conditions can present the ID ca regiver with a number of addition al challenges. As Evenhuis Henderson, Beange, Lennox, and Chicoine (2001) noted, greater longevity can also bring additional functional impairment, morbidity, an d mortality from early age onset conditions, from both their progression over the lifespan, and also their interactions with older age onset issues. For example, s ensory impairment s are particularly problematic to the aging ID population (Wilson & Haire 19 90; Warburg 1994; Schrojenstein Lantman de Valk et al. 1997). Generally, aging related changes in vision (presbyopia) and hearing (pre s by cusis) may be present in rates similar to those in the general population, as are age related patholog ies of vision (e. g. cataracts, m acular degeneration, glaucoma, and diabetic retinopathy), but the impact is often more severe due to higher rates of pre existing, childhood onset of visual and auditory pathology (Schrojenstein Lantman de Valk et al. 1994; Evenhuis 1995a, b). Musculoskeletal issues also arise more frequently. By t he age of 60, around 30% of people with ID will have significant mobility and gait issues and by 75 years, 60% will (Evenhuis, 1 999). Issues such as endocrinological dysregulation and hypotonia i n persons with DS, and musculoskeletal deformities and limitations that restrict weight bearing exercise in persons with cerebral palsy results in increased prevalence of osteoporosis and furthermore the overall ID population also has higher risk of osteo porosis compared with the general population (Center, Beange & McElduff, 1998). Furthermore, although musculoskeletal abnormalities may not cause pa in during child and early adulthood, persons with cerebral palsy are much more likely to develop


19 osteoarthr itis at a younger age. This is due to restricted patterns of movement, as well as abnormal contact and compression between joint surfaces. Adults with D S are at a significantly greater risk of developing disease One statewide study reported a prevalence of 56% of adults with Down syndrome over age 60 had dementia, compared to only 6% of all other adults with ID (from various etiologies) over age 60 (Janicki & Dalton, 2000) The latter group having prevalence rates the same as those reported for the general population (World Health Organization, 2001). Various treatment modalities that are utilized over the lifespan can also have long term consequences (Evenhuis Henderson, Beange, Lennox, & Chicoine (2001) Bone mineralization problems can dev elop from chronic use of some anticonvulsants (Phillips, 1998), and particularly troublesome tardive dykinesias can arise from long term neuroleptic use (Haag et al. 1992; Wojcieszek 1998). The foregoing is just a small sample of many aging issues that c an arise with this population. A cumulative effect of long term caregiving may also result in an increased risk of adverse health outcomes in the caregiver due to the physical performance of some caregiving tasks. Those caring for people who are immobile, or are in other ways high ly dependent in achieving the basic activities of daily living may be especially susceptible. Indeed, there has been recent controversy regarding a prepubescent girl with ID, who is being treated with growth attenuation drugs, t o prevent her from reaching biological puberty as well as having a hysterectomy Her parents were fully supportive of her treatment claiming that stopping further growth would make their future lives as long term caregivers more manageable and reduce the risk of out of home placement The


20 ethical debate this ignited led to a position statement against the practice being released by the American Association on Intellectual and Developmental Disabilities (2007 ) The debate still continues, but is a direct result of the recognition of potential hardship in being physically able to maintain caregiving duties over time that prompted this course of treatment. The care recipient is not the only person that has t o deal with the onset of aging related health conditions. A ging caregiver themselves can also be affected by the increased incidence of aging related chronic illnesses of later life. Increasing medica l demands of the care recipient can also coincide with similar issues occurring in the caregiving tasks, at a time when the care recipient is becoming more dependent. Fears a bout the future long term care of the care recip ient. C aregiver s of advancing age at some point needs to address two major questions r egarding the ir future needs of their child, especially in the event of their own death s T wo major questions facing aging parents are ive after I am gone Grant (1990) noted that a common reaction is for parents to essentially freeze up with indecision when considering the future especially when viable solutions do not appear to be readily available due to prohibitive costs, long waiting lists, or unsuitable residential alternatives One study that specifically asked aging mothers (aged 58 87) whether they had made the necessary residential plans for their children, found that less than 50% had actually done so (Freedman, Krauss & Seltzer, 1997) It appears that lack of future planning is quite widespread.


21 Essex, Seltzer and Krauss (1999) reported that fathers of adults with ID are much more pessimistic than their wives about the ir child It was note d that such pessimism may be the result of considering themselves to have primary res ponsibility for providing the financial means for future care provision Kelly and Kropf (1995) noted two aspects that can impact the finan cial stability of a family in these circumstances. First ly caregiving can result in a substantial loss to overall household income, due to caregiving duties impacting earning potential Secondly, the loss of earning capacity may have drastically impacted the ability for saving and inves tments for the future retirement needs of the whole family. For example, using data over a 35 year period from the WLS, it was found that both paren ts, especially mothers, had significantly lower rates of employment, and wh en they were employed, experienced difficulties due to conflicting commitments to family and work ( Seltzer et al. 2001) A later study using the same data set looked at income differentials over the same period (Parish, Seltzer, Greenberg & Floyd, 2004). It was found that when compared to non ID parents, ID parents mean annual household income by the time they were 53 years old, was 31% lower. In terms of savi ngs, parents of children with I D had mean savings 36% lower ($132,700) than the $181,000 for co ntrol parents Not only does ID caregiving have an impact on the earning capacity of the family, it also incurs substantial additional economic expenditures to the family in terms of transportation, medical costs, and other specialized services More sp ecifically, these include respite care, specialized therapies, home modifications and adaptive technologies, medications and occupational/educational services (Parish, Seltzer, Greenberg, & Floyd, 2004). O ne study estimated expenses to average 16.9% out of total


22 household income (Fujiura, Roccoforte & Braddock, 1994). More recently, it has been found that even middle income families of children with ID, suffer considerable financial hardship (Parish, Rose, Grinstein Weiss, Richman, & An drews 2008). Although persons with ID who meet strict disability and income criteria are able to receive Supplemental Security Income (SSI) payments, it is widely recognized that SSI is usually inadequate to cover the expenses accrued (General Accounting Office, 1999). The foregoing highlights that caregivers of persons with ID can have substantial reduction in their earning capacity, when at the same time, the child with ID presents additional financial costs that are not adequately met by government an d state provided funding sources. Chronic financial strain over substantial periods of time is a s tark reality for many of these caregivers. As these caregivers age, their financial circumstances may result in delaying their own retirement Thus, fear of t he future due to uncertainty of future residential opportunities, as well as financial insecurities can weigh heavily, particularly upon aging caregivers for whom these particular issues are increasingly imminent Potentially Beneficial Factors of Family C aregiving with Aging and ID The foregoing can p aint a very pessimistic picture but it is also the case that caregivers do derive personal benefits Some researchers have long asserted that there has been too much importance placed upon caregiving as a pat hological issue while ignoring the gratification that can be gained from the experience (Grant, Ramcharan, McGrath, Nolan, & Keady, 1998). T hough there is just cause for concern from the issues tha t challenge caregivers of persons with ID, there are severa l mitigating factors that may positively impact the ID caregiving experience. The normative nature of car ing for ones


23 own child and expertise gained from lifelong caregiving are most notable (Haley & Perkins, 2004) Normative nature of parental caregiving. Caregivers of parents or spouses, especially those with dementia, are thrust into roles that for many would certainly require some period of adjustment for both caregiver and care recipient Obviously, the quality of the relationship prior to undertaking caregiving responsibilities can greatly impact the caregiving experience. There are often fundamental changes in the dynamics of the relationship that evolve with increasing dependency and loss of autonomy of the care recipient Some caregivers find it ea sy to provide care in the earlier stages, until the care recipient becomes increasingly incapacitated These caregivers may be good supervisors and errand runners, but are very uneasy with the thought of having to provide more intimate and personal care ne eds, such as washing bathing or toileting the care recipient or chang ing incontinence pads. The spousal caregiver, or the adult child caregiver, in many respects take on a parenting type of persona. They become increasingly responsib le for arrangin g and providing all aspects of care, as well as maintaining the home environment. Conversely, p arents caring for an a dult child find themselves in a more normative and familiar territory than those caregivers for a parent or spouse. The re are no new fundamental role dynamics at play, merely continuation of a relationship dynamic that has existed and developed over decades Though many caregivers of persons with ID might also face changing medical ne eds of the care recipient, they are also the same car egivers that have already had a lifetime of providing highly specialized personal care.


24 Expertise and feelings of mastery gained from long term caregiving. When a caregiving career has spanned several decades, there has no doubt been many challenges t hat have been faced and dealt with. Indeed, many caregivers gain extensive knowledge and expertise from facing these challenges and familiarity of their circumstances and the needs of their care recipient. There is no doubt that even for caregivers that ha ve difficulties, they have successfully adapted and adjusted to their roles over time ( Townsend, Noelker, Deimling & Bass, 1989). It is possible that a s ense of mastery through experience, bestows an advantage on older caregivers when dealing with fresh ch allenges. Heller, Rowitz and Farber (1992) found caregivers of adults aged 30 years and older reported significantly less burden than caregivers of those younger. Hayden and Heller (1997) also found that older caregivers report l ess burden, despite there being no significant differences in support services received, or the size of their social networks The foregoing background information has provided a broad picture of the general factors which can impact ID caregiving experiences Many of the stresso rs that affect caregiver well being tend to be unmodifiable, i e. care recipient characteristics such as challenging behavior, level of support/assistance required, secondary h ealth conditions that commonly arise in those with ID, early onset aging related illnesses financial status. There is also the issue that in most caregiving scenarios, it is a time limited endeavor, whereas in ID caregiving, the se stressors are not only unmodifiable, but are of prolonged duration However, the diffic ulty in modifying certain stressors can be offset by applying the stress process model to caregiver interventions aimed at improving caregiver well


25 being. The general philosophy of the stress of a stressor, and t he resources available to cope with stressors, rather than approaching the issue only by efforts at reducing or eliminating the stressor. This is particularly effective for caregiving stressors that are not in themselves amenable to change. Application of the Stress and Coping Paradigm to Study Caregiving The outcomes of caregivers have long been studied under the theoretical guidance & Bartolucci, 1987; Harwood, Ownby, Burnett, Barker, & Duara, 2000; Pearlin Mullan, Semple, & Skaff, between the person and the environment that is appraised by the person as taxing or exceeding his or her resources a nd endangering his or her well The perception that an individual may experience in response to a particular situation/event (i.e. potential stressors, e.g. caregiving duties) is classified under the model as being irrelevant, benign, or str essful. If a caregiver perceives some aspect of their role as stressful, they make a subjective judgment or appraisal. Depending upon the circumstances, an individual can appraise the situation /event as either challenging, harmful, or threatening S ubjecti ve appraisals ultimately guide the individual re sponse to stress therefore this explains diverse react ions from people when faced with the same set of stressful circumstances. The individual appraisal of a stressful situation describes how an individua l views a potential stressor. However, the real utility of the stress coping model is that it describes coping strategies that can be utilized in order to confront the potential stressor According to Folkman and Lazarus (1980) there are two major types o f coping, emotion


26 and problem focused coping. The function of e motion focused coping is to regulate distressing emotions an example of which is finding empathy in a support group. Problem focused coping is when direct action is undertaken to change the di stressful situation (e.g. utilizing behavioral techniques to address challenging behaviors of the care recipient ). C hronic strains and stress that can accompany caregiving may not always be eased by using emotion focused or problem focused coping In suc h cases, p s ychological distress can ensue, and stress can proliferate over time Despite seemingly intractable situations, it was recognized that some caregivers are very resilient, even when it seems that neither emotion focused nor problem focused coping strateg ies are effective. This finding prompted the addition of meaning based coping to the s tress and c oping model (Folkman, 1997). Examples o f meaning based coping include spiritual beliefs reevaluating the caregiving experience as a period of great personal growth and r s to regain purpose and control (1984) model essentially emphasizes the importance of individual appraisal of stress rather than the occurrence or severity of the potential stressor p er se. Lazarus and Folkman (1984) categorized coping resources as being either internal (e.g., use of benign appraisals, sense of m eaning, problem solving skills, previous experience personality ) or external (e.g. appropriately modifying an environment social support, money ). Internal resources are inherent within the person themselves, whereas external resources are accessed by changing the environment or utilizing assistance from others.


27 Caregiver s tress and coping can be considered to be a delicate balancing act (see F igure 1) in which high levels of stressors can increase the likelihood of negative caregiver outcomes, while high levels of resources can help to decrease the likelihood of caregiver distress (Perkins, Lynn, & Haley, 2007) Pearlin, Mullan, Semple, and Skaff (1990) view caregiving as being an activity that has primary and secondary stressors. They d escribe the day to day care tasks (e.g. managing challenging behavior bathing, feeding, dressing the care recipient etc ) as primary str essors. Secondary stressors are spillover effects from the primary caregiving role, and include marital disharmony, stress in other family relationships, and issues with occupational roles. Caregivers are also not immune from other life stressors and stra ins outside of their primary caregiving role (e.g. bereavement, house relocation) Interventions for caregivers can enhance caregiver well being by minimizing stressors (e.g. implementing a behavioral program to minimize challenging behavior), improving i nternal resources (e.g. altering appraisals, teaching alternative coping skills), or enhancing external resources (e.g. modifying the physical environment, increasing the level of social support). When assessing stressors that can impact caregiver well b eing, it is important to consider not only primary and secondary, and other life stressors, but how caregivers actually appraise these stressors, and the internal and external coping resources that they utilize.


28 Figure 1. 1 Stress and Coping: A Balancin g Act (from Perkins, Lynn & Haley, 2007). Caregiving I nterventions The ultimate goal of caregiving research is to provide evidence based interventions to alleviate the stress and burden of caregivers and improve quality of life outcomes, though there is often debate on what type of intervention is most beneficial. Srensen, Pinquart, and Duberstein (2002) conducted a meta analysis of the efficacy of 78 caregiver intervention studies across many caregiving scenarios to investigate this issue. Overall, the best results were found when using individualized and well structured interventions. In particular, psychotherapy and psychoeducational interventions were the two most effective types, with positive improvements occurring in five clinically relevant domai ns of caregiver well being and patient functioning These were ability/knowledge, well being, depression burden, Cognitive Behavioral Therapy was the most common type of psychotherapy used in interven tion studies and included counseling on challenging negative thinking and


29 assumptions, increasing pleasant activities, and teaching effective time management skills Psychoeducational interventions were undertaken in group settings, and disseminated info rmation regarding a care as well as providing training an d resources to manage particular issues (e.g. challenging behaviors). The information was presented in structured formats including formal lectures, supplied written mate rials as well as group discussion. Education was the major component of both psychotherapy and psycho educational therapy. In psychotherapy the focus of intervention w as d irected towards increasing self knowledge In the psychoeducational a pproach the aim is to increase disease and symptoms. The stress coping model incorporates many of the attributes that are found to improve caregiver well being in interventions For example, psychoeducational interve ntions are an example of problem focused coping that increase internal resources (i.e. by providing strategies to deal with different aspects of caregiving roles). Psychoeducational interventions also improve access/knowledge to external resources that car egivers may benefit from. Cognitive behavioral therapies work by modifying the cognitions (i.e. appraisals) of caregivers, and thus enhancing internal resources. Stress and coping models emphasize that the ability to successfully combat caregiving stressor s is a function of enhancing the coping resources of the caregiver, rather than the apparent vulnerability of a caregiver (Vitaliano, Zhang, & Scanlan, 2003). This is an important aspect of intervention efficacy, because the ability to improve caregiver we ll being depends more on improving coping resources, rather than minimizing vulnerabilities of caregivers that may actually differ dramatically within each intervention group.


30 As the literature on caregiving research has provided numerous examples of effec tive ca regiving interventions that are theoretically guided on the stress process m odel, this dissertation investigate d two aspects of ID caregiving that have received little research attention. In reviewing the literature, there are several gaps in the kn owledge of ID caregiving that have yet to be adequately investigated. However, given the utility of the stress process model to provide a sound theoretical basis for effective caregiver interventions, it would appear that variables that can be investigate d under this model would ultimately provide potential effective targets for future intervention studies As such, t his dissertation focused on both sides of the caregiving balancing act (see F igure 1) I t assess ed the impact of a chronic strain/life event that older parent caregivers may be particularly more exposed to i.e. the fact that aging ID caregivers are sometimes having to undertake multiple caregiving roles for their own parents. This is an example of life event that may adversely magnify caregivi ng stress. There had been little investigation of the function of reciprocity (i.e. the feeling of a mutually beneficial exchange that occurs in all relationships). Reciprocity may potentially be regarded as a stressor (if lacking) or a coping mechanism. Impact of Compounded Caregiving D uties on Aging Caregiver An aspect that could adversely affect well being in older caregivers is their experiences as sandwich caregivers. Sandwich caregiving refers to those people who undertake caregiving responsibilitie s for older adults while still having parenting duties to their own (usually teenage or older) children. Some of the major factors that make simultaneous parenting/caregiving an issue is the financial drain of a child, errand


31 running, and maintaining resp onsibilities for non coresiding children (due to divorce or school attendance) (Loomis & Booth, 1995). These circumstances may actually not be too taxing in many cases, and, indeed, there is considerable controversy between researchers as to whether the sa ndwich does indeed exist. Furthermore, it appears that the period of time when som eone can be a sandwich caregiver is increasing, due to the combined effect of baby boomers having delayed child 2005). Rogerson and Kim state that baby boomers are actually having a child rearing and increased life expectancies) will also result in the children of baby boomers being sandwich caregivers for even longer. Though there remai ns argument regarding the relative impact of sandwich caregiving overall, one scenario that h as not been adequately explored is unique to ID considerable caregiving responsibilit ies for their own child with ID, who subsequently become s a primary caregiver for an other family member (Perkins, in press ) What make s these compound caregivers significantly different from traditional g for highly dependent children, when the additional caregiving role is adopted. Furthermore, a recent case study has highlighted that periods of compound caregiving may occur several times, and may include caring for older parents, parent in laws, and sib lings, in some cases (Perkins, in press ). The same


32 case study also reports that such periods can be extremely stressful, partly because many difficult decisions about prioritizing caregiving tasks had to be made. Previous studies have, understandably foc used on the caregiving experience and tasks in terms of dyadic relationships. There has been little attention paid to assess whether the primary caregiver had responsibility for other care recipients either currently, or in the past or indeed, whether the y are anticipating a likelihood of additional care recipients in the future. This previous omission though understandable, deserve s further exploration especially as compound caregiving is likely to be an increasingly common scenario for ID caregivers gi ven the increased life expectancy of people with ID, and the general population. Research is required to identify compound caregivers, to determine the frequency of compound caregiving, and quality of life outcomes for compound caregivers during the compo und caregiving episode, and long term ramifications of these highly demanding periods. I nvestigation into the Function of R eciprocity Social exchange and equity theories explain why and how relationships are formed and maintained. At the most pragmatic le vel, it emphasizes that exchanges or relationships are formed between two parties in which both are seeking to maximize the benefits, while minimizing the costs (Adams, 1965; Cook, 1987; Molm & Cook, 1995; Walster, Walster, & Berscheid, 1978). Equity t heory is more concerned with the affective component of social exchanges. Therefore, it proposes that feelings of well being are dependent upon individuals feeling equitably treated (i.e. they give and receive in proportional amounts) ( Walster, Walster, & Berscheid, 1978). If balance is not achieved then it can lead to


33 feeling of distress, but can happen when people feel that they are receiving too much (over benefit) as well as too little (under benefit) from the relationship (Walster et al.) If people f eel they are receiving too much, they may feel guilty, whereas a person who feels they are not receiving enough, may be come angry or resentful. Basically, there is the feeling that fairness should permeate relationships, and that adjustments are made to re ctify perceived im balance s Equity theory can be applied to all types of relationships, from occupational, employer/employee, to more intimate social relationships. Most social relationship s operate under the norms of reciprocity in that there is a mutual exchange of emotions/services that is beneficial to both parties which helps to initiate, but more importantly, fosters the maintenance of social ties (Levi Strauss, 1964). These reciprocal exchanges occur both in the context of normal familial intergen erational assistance, and family caregiving (Walker & Pratt, 1991). However, Gouldner (1973) assert ed that reciprocity is not unconditional, and that the status of those engaged in a reciprocal relationship can affect the function of the reciprocity. Gould ner thus argued that reciprocity may not apply to certain groups of people the elderly frail being a particular population he cites. In the case of older adults, he suggests that the norm of beneficence is at play, whereby assistance is offered to help th ose in need, and that recipients offer gratitude to their caregiver s but no reciprocity is evident. However, as previously reviewed earlier, caregivers do derive personal bene fits from their caregiving role. Thus, even if the norm of beneficence is initi ally responsible for initiating caregiving duties reciprocity in caregiving may override benefic ence as the mechanism which actually maint ains the caregiving function. Therefore it can be argued that many of those who initially undertake caregiving duties do so because they feel


34 compelled to help a relative who needs assistance. However, not all caregivers are able to cope and continue with their role, so despite their best intentions, beneficence alone, does not explain how someone becomes a successful ca regiver. Indeed, reciprocity may be a mechanism that contributes to both successful and sustained caregiving. Previous s tudies of r eciprocit y The positive association between reciprocity and well being has been found in several studies regardless of the type of relationship, including occupational relationships ( e.g. Bunk, Doosje, Jans, & Hopstken, 1993 ), and close friendships ( e.g. Buunk & Prins, 1998; Rook, 1987) In a study that tested whether r eciprocity or social support that was given or social sup port received reduced symptoms of stress, it was found that reciprocity from family members was a significant predictor, but not the social support measures (Jung 1990). Reciprocity was also noted to be an important factor in explaining within family var iation in support that mothers provided differentially to their own adult children (Suitor, Pillemer, & Sechrist, 2006). In marital relationships there ha ve been conflicting results One study did find a positive association of reciprocity to well being (e.g. Buunk & Mutsaers, 1999 ), whereas balanced reciprocity within marriage had no association to the improvement of general health (Vnnen, Buunk, Kivim ki, Pentti, & Vahtera, 2005). However, a large scale epidemiological study that investigated the im health (Kawachi, Kennedy, & Glass, 1999), did find that people who trusted that those closest to them would engage in the norms of reciprocity, were 1.7 times more likely to


35 have good or very good self rated health, compared with those who did not believe this would be the case. Within the caregiving context, e arl y studies have also indicated that the level of reciprocity a caregiver perceives is a n important consideration in their well being. For example Hirschfiel d (1983), f ound that when a greater sense of mutuality and reciprocity was expressed by caregivers, it was associated with increased sense of coping with the responsibilities of their role, and decreased their desire to consider institutionalizing their ca re recipient Neufeld and Harrison (1995) in their study of dementia caregivers, found that the caregivers actually monitored the give and take in their relationship to the care through monitoring and incl who were able to construct such reciprocity with the care recipient were more satisfied and content with themselves, i.e. experiencing a sense of reciprocity actually help ed to bolster their self esteem. Carruth, Tate, Moffett, and Hill (1997), reported that reciprocity accounted for significant variance in family satisfaction reported by caregivers of elderly parents. A more recent study, by Reid, Moss and Hyman (2005) also found that those with higher levels of reciprocity reported reduced caregiver burden. Similarly, as one would expect if one considers that equity theory suggests that reciprocity helps to maintain balance, a few studies have taken into account care re recipients have reported significantly less depressive symptomatology when they have reported greater reciprocity ( Pruchno, Burant, & Peters, 1997; Wolff & Agree, 2004). According to Gouldner (1973), frail care recipients could do little but offer grati tude, not reciprocity, but would offering gratitude alone explain


36 reduction in depressive symptoms? If care recipients were only able to offer gratitude, caregivers may still perceive imbalance within the relationship, and such imbalance s are thought to le ad to greater distress Though many of the previous studies discussed seem to indicate that more emotional types of reciprocities have been associated with improved sense of well being, there are also reports of caregivers experienc ing lower levels of stre ss and burden, when their care recipient is able to provide actual tangible help with various chores (Dwyer & Miller, 1990; Dwyer, Lee, & Jankowski, 1994) T his would also seem to contradict Gouldner. The actual amount of tangible reciprocity received may significant. Even the most minor task may have significant benefit on the feeling of reciprocity that a caregiver expresses. Perhaps the mere act of the care recipien t trying to As far as studies of reciprocity for caregivers of persons with ID, it is an aspect that has only been briefly acknowledged. Heller, Miller and Factor (1997) did to predict perceived caregiving satisfaction. Even after controlling for other forms of informal support, caregiver/care recipient health variables, and challenging behaviors, sup port from the adult child still accounted for significant variance in caregiving satisfaction. Heller et al. noted that the adults with ID provide d their parents with an enduring source of companionship and constructive help with household tasks. Though t here is certainly not an extensive literature on reciprocity, there appears to be m ounting evidence of the benefits of assessing reciprocity given that it is associated with posit ive outcomes for caregivers Furthermore, a lthough t he re is far less research


37 that has studied c are recipient well being, the indication is that high levels of reciprocity are also associated with better outcomes. Typologies of r eciprocity Although the above gives a general summary of the outcomes associated with reciprocity in the literature, one needs to review the different approaches researchers have used to conceptualize and measure reciprocity. Several t yp es of reciprocities are identifiable, and noteworthy. One of the earliest example s of consideration of multiple recipr ocities was described by Sa h lins (1965) He asserted that reciprocity can be negat i ve ( i.e. to obtain something for nothing), balanced (i.e. equality within the exchange, and payment provided swiftly ), or generalized (i.e. an expectation of material return but not governed by specific time limit, quantity, or quality of the return). By and large though reciprocity between family members is also generalized across the life span and need not rely upon equivalent or specific exchanges of services or goods (H orwitz, Reinhard, & Howell White, 1996). Finch and Mason (1993) note d that in kin relationships there can be differential ability to reciprocate specific services and support, but balance is maintained by exchanging different types support Th e idea of al ternative reciprocities in family relationship s is especially relevant to caregiving scenarios as a care recipient may be unable to provide material support but can maintain a balanced relationship by offering other alternatives such as providing compani onship and symbolic expressions of support (Horwitz, Reinhard, & Howell White, 1996). This view was reporte d in a study of caregiving in families with seriously mentally ill members. Horwitz et al., found that the reciprocity of the care recipients was


38 mo stly symbolic (i.e. expressing affection, providing companionship participation in family activities ) rather than material (i.e. financial assistance) or instrumental (i.e. providing help with chores). Horwitz and colleagues assert that the fundamental aspect of reciprocity is that the caregiver and care recipient actually percei ves that the other is doing all they can to maintain a balanced relationship, while taking into account the constraints of each others abilities. An intriguing finding was that there was a positive association between the amount of symbolic reciprocity given by the care recipient, and the amount of caregiving aid that the caregiver provided. Thus, when the opposite occurs, when low reciprocity is associated with less caregiving aid, this may have a valuable practical utility as a potential warning indicator that the caregiving relationship is under severe stress, or may soon collapse. Such a measure may help to prioritize services to distressed caregivers Measurement i ssu es. In reviewing the literature, it is apparent that there have been studies that have used the term reciprocity, as a global measure, and then there have been others where reciprocity has been subdivided as a type, i.e. symbolic, emotional, tangible, etc. There have been studies that have utilized as little as one, but as many as 4 statements that are quantifiably assessed using L ikert type ratings. Others have used a ctual comparison s to what has been given, compared to what has been received this tends to w ork well if there are more rigidly defined roles (e.g. in occupational settings), but does n o t work as well in caregiving scenarios. One must acknowledge that the very caregiving function itself results in differential expression of reciprocity that is al ready acknowledged by caregivers (who are aware of the limitations that their care recipient s ha ve ) and


39 (depending on their level of awareness and cognitive ability ) the care recipient s themselves. T he measurement of reciprocity has not yet seen the deve lopment of a widely validated and extensively used scale. This is because reciprocity has been measured in a variety of contexts that have not been generally conducive to translational adaptation. For instance occupational reciprocities are very different from more intimate social relationships, including caregiving. In some cases, as reciprocity is seen as an assessment of balance of exchanges, it has often been measured by a tally of these exchanges One scale that has been developed is the Caregiver Re ciprocity Scale (C arruth, 1996). The Caregiver Reciprocity Scale (CRS) is described as being able to measure the collective expression of exchanges and balance in the transactions between a caregiver and their elderly parent over 4 subscales There are a total of 22 items, scored on a 5 point Likert scale. The subscales are warmth and regard, love and affection, intrinsic rewards of giving, and balance of other family relationships within family caregiving. Warmth and regard measures exchange of emotions including empathy, esteem, gratitude, care, and concern. love in the relationship. The i ntrinsic rewards of caregiving scale assesses the motivation of the caregiver to perform their duties includi ng their willingness to sacrifice to benefit their care recipient. The balance scale measures whether the caregiver feels they are balancing the requirements of their caregiving role, with their other commitments in other family relationships. T he CRS is the only validated scale that has been used in other studies of caregiver reciprocity (e.g. Reid, Moss, & Hyman, 2005) It has also undergone revision i.e. Caregiver Reciprocity Scale II (Carruth, Holland, & Larsen, 2000).


40 However, due to concern regardi ng two of the subscales being conceptually similar, this warmth and regard and can both be considered to reflect positive emotional states 0.79, and the authors concede that only partial discriminant validity was demonstrated between these two factors when testing the measure. Furthermore, expectation of love can differ if the care reci pient is a spouse, sibling or a child of the caregiver. Undoubtedly there is an emotional content to reciprocity, but this scale over emphasizes it. B alance within other family relationships is not a ctually a direct measurement of reciprocity, reciprocity is strictly exchanges in two parties not what is give n and receive d to others in another relationship. In those relationships external to the caregiver/care recipient relationship, reciprocal adjustments are probably made, because of knowing the demands of the primary caregiving role Furthermore, there is no assessment of more tangible forms of reciprocity. As this scale was designed for caregivers of elderly parents, it might be assumed that they have functional limitations that prevent tangible recipr ocity. However, for caregivers of adult children with ID, tangible reciprocities have been reported to exist (H eller, Miller & Factor, 1997 ) Therefore th e CRS and CRS II scale s were not utilized as a measure of reciprocity in this study. Reciprocity and I ntellectual Disability Caregiving As referred to earlier, reciprocity has not been well investigated in caregivers for people with ID. To recap, the Heller, Miller and Factor study, (1997) did find that


41 caregiving satisfaction. Heller et al. stated that adults with ID provide d their parents with an enduring source of companionship and constructive help with household tasks. Given this finding, it is surprising t hat reciprocity has not received further research attention. Reciprocities can be reported on objective recordable behaviors i.e. tang ible reciprocities (i.e. affection display ed) are more subjective, a personal perception rather t han the observable congruence between responses given by dyads of caregivers and care recipients, particularly with the tangible reciprociti es, though this was beyond the scope of this present study However, perceived reciprocity reported by a caregiver still remains an interesting issue, given its apparent relationship to positive well being. Reciprocity may be a significant coping mechanis m in long term caregiving scenarios that are experienced by caregivers of adults with ID. One question that should be addressed is whether perceived reciprocity of caregiver s is associated with their sense of overall well ass ociated with decreasing burden and increasing caregiver satisfaction. As c aregiving satisfaction and burden are quite specific domains, it was pertinent to investigate whether more global and clinically meaningful measures of physical and mental health can also be predicted by reciprocity. Reciprocity has been investigated using various typologies as previously reviewed. Fundamentally, some of these typologies evolved from recognition of the different aspects of social support that caregivers received fro m others (Krause, 1995;


42 Krause & Borawski Clark, 1995). Social support research has identified that emotional social support helped caregivers receive comfort and concern from others regarding their caregiving role, tangible social support is assistance fr om others for housework, and transport etc., and informational support is receiving problem solving advice and information (Krause, 1995; Krause & Borawski Clark, 1995). In reciprocal exchanges, the essential difference is that such support is both given a nd received whereas social support is concerned with assistance provided to the caregiver, with no emphasis on what the caregiver does in return (if anything) for the person providing the support. A lthough reciprocity has been categorized in several wa ys, there are two types (drawn directly from the literature on social support) that are particularly relevant to ID caregiving scenarios whe n the respective abilities of the caregiver and care recipient can vary widely due to communication difficulties, s ensory impairment, physical disabilities, and psychological/behavioral issues. These are e motional reciprocity (e.g. providing companionship, displays of affection), and tangible reciprocity (e.g. help with household tasks). It is also appealing that these typologies fit well within the stress process models as different types of coping resources. Emotional reciprocity, which is a subjective perception, may be considered an internal coping resource, whereas tangible reciprocity, can be considered an externa l coping resource. As previously mentioned, i nternal resources are inherent within the person themselves, whereas external resources are accessed by changing the environment or utilizing assistance from others. Tangible reciprocity actually provides a mec hanism for the caregiver to receive assistance T he fact that it is from the care recipient does not negate its utility or diminish its impact as an


43 There is not only the question of whether reciprocity might be a possible predictor for global health outcomes, but are different types of reciprocity (i.e. emotional versus tangible) differentially associated with caregiver well being? Is it that in cases where the care recipient is highly dependent for example, and tangible tasks are u nlikely/unable to be reciprocated, does an increase in perceived emotional reciprocation serve to counteract that imbalance? Perceived emotional reciprocity can be viewed as a form of cognitive appraisal that may ultimately be a coping mechanism of dealin g with a dependent relationship over a lifespan. Alternatively, lack of reciprocity may also be viewed as a stressor. Either way, avenue for a stress alleviation intervention for improving caregiver well being from removal of lack of reciprocity as a stressor, or as a potential form of coping mechanism There is also another side to this research that determining the level of reciprocity will answer. It will help identify how much tangible reciprocity adults with ID provide in assisting their aging parents. Again, this is an area where little information is known. For persons with mild to moderate intellectual disability, it may be that as their parents age, the distinction between who is t he caregiver/care recipient becomes decidedly blurred and that role reversal in task allocation occurs. Guiding Theoretical Model of Dissertation This study was conducted with reference to the stress and coping paradigm as discussed previously. The tw o major aspects investigated with this study are compound caregiving and reciprocity. Emotional and tangible reciprocity, and compound caregiving are both potential asp e c ts in coping with stress of ID caregiving that have not been widely studied.


44 Researc h Questions T his dissertation is focus ed on three major research questions. Research Question 1 I s compound caregiving associated with adverse quality of life outcomes when compared with non compound caregivers ? Hypothesis : Compound caregiving (a chro nic strain/life event) increases the likelihood of poorer quality of life outcomes (i.e. greater depressive symptomatology, reduced life satisfaction, poorer global health, and increased desire to place their care recipient in alternative residential accom modation ) R ationale: This question assesse s the im portance of this new variable as an independent stressor in the stress and coping paradigm. Research Question 2 Is increased reciprocity associated with better quality of life outcomes for ID caregive rs ? Hypothesis : Caregivers who report higher levels of reciprocity in their caregiving relationship, will be associated with better quality of life outcomes (i.e. reduced depressive symptomatology, increased life satisfaction, better global health, and d ecreased desire to place) Rationale: This question investigates the utility of reciprocity as an independent predictor of caregiver quality of life


45 Research Question 3 Do these relationships between compound caregiving reciprocity and quality of lif e outcomes remain after controlling for other important variables in the stress process model? Rationale: Th e incremental contribution of these variables is examined, in respect to stress and coping in ID caregivers, beyond more commonly studied measures o f stressors and internal and external resources.


46 Chapter Three : Research Methodology Study Design This study u tilized a cross sectional design Data was acquired from semi structured interviews utilizing survey instruments Participa nts who were located near to the Tampa Bay area were interviewed in their own home or another venue that was requested by the caregiver For those located elsewhere or otherwise requested by the caregiver, the interview was conducted by telephone. Partici pants The study use d a c onvenience samp le of parent caregivers In cases where there was more than one parental caregiver, the caregiver with primary responsibility, in terms of tasks and time spent with the care recipient, was interviewed. Parent caregiv ers were required to meet 3 eligibility criteria for inclusion in this study Firstly, the m inimum age of the parent caregiver was 5 0 years. Secondly, t he minimum age of inc lusion for the ir care recipient with intellectual disability was 18 years. Thirdly the caregiver and care recipient needed to be co residing. The presence of intellectual disability in the care recipient was determined by confirmation from the parental caregiver of previous medical diagnosis of ID, or receipt of Agency for Persons with Disability Services, or previous /current attendance within the special education system Recruitment Procedure The research protocol was approved by the Institutional Review Board at the


47 University of South Florida. Caregiver s w ere recruited from local agencies throughout Florida a s well as networking with local parent groups, and word of mouth referral Flyers descri bing the criteria for the study were widely distributed using a variety of sources. These included state and local internet groups, parent support groups, posting to listserves and websites as well as physical distribution of paper flyers, and parent to parent referral. C aregivers were instructed in the flyer to make contact via telephone or email, to register their interest, at which point their eligibility for the study was confirmed. Further details regarding the study were then discussed, and for those who were interviewed in their home, an appointment was made. The in home interviews beg an with discussion of the informed consent procedu re, and subsequent signing of the informed consent form followed by the interview itself. In most cases, the interviews averaged approximately 1.5 hours. For those who were interviewed by telephone, the informed consent form was explained, and then a pack age was mailed which included informed consent forms and also a copy of the survey interview. Upon return of the signed informed consent, the caregivers were then contacted for an appointment at a convenient time. As the interview was conducted over the te le phone, and the caregivers already had the questions, usual time of the telephone interviews w as 45 minutes. Measures Independent Variables The following variables were included to provide detailed descriptive and demograp hic information of the caregi ver s to enable thorough analysis of the overall sample characteristics Care recipient demographic and descriptive information that have


48 been previously associated with i ncreasing stress and burden in ID caregivers were incorporated, so that they could be controlled for in subsequent analyses. Caregiver d emographic i nformation Each participant was asked to provide details regarding their age (in years) gender income (combined household income) education (years in education) ethnicity and current c omorbidities Comorbidity was assessed using the self report comorbidity scale developed by Bayliss, Ellis, and Steiner (2005). This scale has a checklist of 23 chronic medical conditions and determines both the presence of the condition, as well as a 5 p oint Likert type scale to report the level of interference each of these condition s had on regular daily activities. The participants were specifically asked whether a medical doctor has ever diagnosed them with each health condition Examples include con gestive heart dise ase, diabetes, osteo arthritis, osteoporosis cancer, and stroke A total count of comorbid conditions, as well as comorbidity interference score s were obtained. Care r ecipient d emographic i nformation A ge, gender, i ntellectual disability level (i.e. mild, moderate, severe, profound, as p reviously determined by government agency/ psychological educational testing) and ID etiology w ere noted. Challenging behavior s were assessed using the 8 item Maladaptive Behavior subscale, of the Scale s of Independent Behavior Revised (Bruininks, Woodcock, Weatherman, & Hill, 1996). For this study, the total number of challenging behaviors present were noted, as was the total sum score of the severity of each behavior as a problem specific ally perceive d by the caregiver Functional ab ility of the care recipient was measured using the widely used Activities of Daily Living (Katz, Ford, & Moskowitz, 1963), and Instrumental Activities of Daily Living (Lawton & Brody, 1969).


49 These aspects are primary careg iving stressors that have previously been identified with increasing caregiver stress. Activities of Daily L iving (Katz, Ford, Moskowitz, 1963) were assessed by 6 items with yes/no responses to questions that determine whether functions such as bathing, dr essing, and feeding oneself, are able to be done The total score can range from 0 6, with lower scores indicating that greater assistance is required with activities of daily living. The Instrumental Activities of Daily Living scale (Lawton & Brody, 1969) is comprised of 8 items that assessed the level of independence in a variety of areas including use of telephone, shopping, using transport ability to manage finances etc. The total scores can range from 0 8, with a lower score indicating less independence. Coresidency s tatus The caregiver was asked if their care recipient had continuously lived with them since birth. There were only two occurrences where the care recipient was reported to have had lived apart from the caregiver, one was prior to adoption (at a young age), the other occasion was for less than 2 years in a care recipient who was aged 30+. Therefore for the purposes of this study, it was established that the caregi vers had all been lifetime caregivers. Independent Variables t o Investigate Research Hypotheses Compound caregiver s tatus Current compound caregi ving status was determined by caregiver response to the nd responsibilities to another family member, other than your child? This definition of compound caregiving was purposefully broad, as to capture the full range of possible multiple caregiving roles that


50 may be undertaken. Compound caregivers include s sa ndwich caregivers (i.e. primary caregiver who is now responsible for older adults), but also include d primary caregivers looking after any other family member, including another of their own children or grandchildren with special needs In addition, the fa mily relationship of who the compound caregiving duties were being provided for, and the duration of time that these simultaneous caregiving roles had existed, was noted The caregiver was also asked approximately how many hours per week they spen t underta king the additional compound caregiving duties and the major health condition or needs that is the reason that caregiving duties are undertaken. Previous history of compound caregi ving periods were also noted including which family member was cared for and the major health issue or disease that resul ted in the caregiver undertaking All caregivers (i.e. both compound and non compound caregivers) were asked if they a nticipated any future caregiving responsibilities for oth er family members in the future. Reciprocity This dissertation study us e d its own measure of reciprocity. This was assess ed by a questionnaire that was comprise d of 12 items The scale is based on the premise that reciprocity is an exchange, so the scale must allow for the caregiver to assess each item in terms of giving to and rec eiving from the care recipient. Questions regarding what the caregiver felt they gave to the relationship were asked earlier in the interview and questions asking what they felt they received w ere administere d at the end so as to minimize the potential of socially desirable responses The items were also chosen to be parallel across both caregiver and care recipient. The emotional reciprocity items were :


51 1 a) How much companionship (i.e. spending quality tim e together) do you g ive your care recipient? 1 b) How much companionship (i.e. spending quality time together) do you receive from your care recipient? 2 a ) How much verbal and non verbal expression s (e.g. smiles happy v ocalizations ) of positive emotion do you give y our care recipient? 2b ) How much verbal and non verbal expressions (e.g. smiles happy vocalizations ) of positive emotion do you receive from your care recipient? 3a) How much physical expression of affection (e.g. hugs, kisses) do you give your care recipient? 3 b) How much physical expression of affection (e.g. hugs, kisses) do you receive from your care recipient? T he tangible reciprocity items were: 4a) How much help do you give your care recipient with laundry related tasks (e.g. placing dirty clothes in laundry basket, using washing machine/dryer, putting away clean clothes in drawers/closet changing bed linen ) ? 4b) How much help do you receive from your care recipient with laundry related tasks (e.g. placing dirty clothes in laundry basket, using washing machine/dryer, putting away clean clothes in drawers/closet, changing bed linen) ?


52 5a ) How much help do you give your care recipient with cleani ng tasks around the home (e.g. vacuuming, dusting and polishing, general tidying up, help with yard work) ? 5 b) How much help do you receive from your care recipient with cleaning tasks around the home (e.g. vacuuming, dusting and polishing, genera l tidying up, help with yard work)? 6 a) How much help do you give your care recipient with preparing drinks, snacks, and meals (e.g. preparing sandwiches/cereals, cooking, using microwave, toaster, kettle, dishwasher, stovetop/oven, making hot/cold drinks) ? 6b) How much help do you receive from your care recipient with preparing drinks, snacks, and meals (e.g. preparing sandwiches/cereals, cooking, using microwave, toaster, kettle, dishwasher, stovetop/oven, making hot/cold drinks)? The q uestions were answered with a 5 point Likert type scale with responses to either how much they gave/received for each item, namely none (1 ), some (2 ), quite a bit (3 ), a lot (4 ), a great deal (5) Initially f our scores were derived emotional given, emotional received, tangible given and tangible received Overall difference scores for both emotional and tangible reciprocity w ere calculated by subtracting the total received from the total given. The range of each scale was 12 to + 12, with 0 begin ba lanced recipr ocity. Negative scores indicate that more is received than given indicating a relative advantage in reciprocity and positive scores indicate more is given than received i.e.


53 relative dis advantage Cronbach for emotional reciprocity was .75, and .93 for tangible reciprocity. Outcome Measures There were five variables used as outcome measures; global physical health, global mental health, depressive symptomatology, life satisfaction, and desire to place. Global physical and mental hea lth wa s important to ascertain whether stress and burden of caregiving actually impacts physical and mental functioning. Subjective perceptions of health are particularly useful especially in older adults, where it has been found to be a strong prospective predictor of mortality, above and beyond the effects of other variables that assess health (Benyamini & Idler, 1999). Depressive symptomatology and life satisfaction en sure d that the study investigated positive and negative aspects of psychological well b eing. This is important as positive and negative psychological states are not considered to be mere inverse functions of each other. They do have different antece dents, functions, and correlates, that require that they are independently measured (Lawton, 1 983; Diener & Emmons, 1984; Watson & Tellegen, 1985). Finally desire to place was important to determine from both a clinical and strategic planning and policy standpoint, as it indicates the level to which caregivers are actually consider ing ceasing their caregiving duties G lobal p hysical and m ental h ealth Overall physical and mental health of the caregiver was measured using the Medical Outcomes Study Short Form (SF 36). This is a 36 item instrument and has been widely validated as a summary measure o f health related Q uality of Life (Ware & Sherbourne, 1992 ). The SF 36 has two major subscales, the physical component


54 summary (PCS) and mental component summary (MCS) which are the scales used to assess global physical health, and global mental health in this study Each component scale is derived from 4 minor subscales. For the PCS, the subscales are physical functioning, role physical, bodily pain and general health perceptions For the MCS, vitality, social functioning, role emotional and mental he alth are individually assessed. Each subscale is scored from 0 to 100 with 100 being the most favorable score (e.g., higher scores indicate better functioning for physical functioning social functioning role emotional, and general health and less pain an d limitations for the limitation subscales). Scores are transformed and are reported in a standardized t score metric, i.e. mean = 50, standard deviation 10. For both PCS and MCS, a mean of 50 is interpreted as average health status for the overall US p opulation Cronbach alpha for the PCS was .91, and .87 for the MCS. Depressive s ymptomatology Depressive symptomatology was assess ed by the 20 item version of t he Center for Epidemiologic S tudies Depression Scale (Radloff, 1977). Particip ants were asked to report how often various feelings or behaviors were experienced during the past week, and their responses were rated on a 4 point likert scale. The categories are presented in the time" and "most or all of the time". Scores can range from 0 (indicating no depressive symptoms) to 60 ( indicating severe depressive symptoms). Scores of 16 or higher on the Center for Epidemiologic S tudies Depressio n Scale (CES D) are typically viewed as clinically significant and evidence of probable depression (Andresen, Malmgren, Carter, & Patrick, 1994). .89 in the present study.


55 Life s atisfaction The Life Satisfaction Index Z is the 13 item short form version of a measure designed to indicate levels of self perceived morale and general life satisfaction (Wood, Wylie & Schaefor, 1969). Participants were asked whether they agree, disagree or unsure one way or the other, to statements in cluding and Scores range from 0 26 with higher scores indicating greater life satisfaction. in the present study was .77. D esi re for resident ial p lacemen t. This variable was an adaptation of the Desire to Institutionalize Scale by Morycz (1985). your son/daughter, which of the following best describes you? A cont inuum of responses ask the caregiver the level to which they have either considered, discussed with their son/daughter the possibility, or with o ther family members, through to actively seeking it, and making steps to finding alternative residential plac ement. Scores range from 1 6, with 6 indicating greatest desire to place. In order to make the scale suitable and sensitive to the ID population, the wording of items was altered so as to not cause potential offense Statistical Approach All v ariables w ere checked for normality of distribution using skewness and kurtosis indicators, and all variables were found to be in acce ptable range and required no further transformation. There were no missing data in any of the variables utilized in


56 this study. Descriptive analyses were conducted of all independent and dependent variables An alpha level of .05 was used for all tests of statistical significance. The data was analyzed by initially assessing Pearson Product Moment correlations between the independent variables and the outcome measures. Any of the demographic, caregiver characteristics, or care re cipient characteristics that were associate d with the outcome measures were included and controlled for in the subsequent hierarchical regression analyses. The specific statistical method to answer each research question is detailed below. Research Question 1 Is compound careg iving associated with adverse quality of life outcomes when compared with non compound caregivers? I ndependent sample t tests were conducted to compare sample characteristics of current compound caregivers with non compound caregiver s For categorical var iables, square tests were used. T o specifically asse ss quality of life differences between the two group s, independent sample t test s were conducted in global health functioning (MCS/PCS) depressive symptomatology, life satisfaction, and de sire for re sidential placement. Research Question 2 Is increased reciprocity associated with better quality of life outcomes for ID caregivers? Pearson Product M oment b ivariate c orrelations were conducted between tangible reciprocity and emotional reci procity a nd the quality of life outcomes, global health


57 functioning (MCS/PCS), depressive symptomatology, life satisfaction, and desire for residential placement. Research Question 3 Do these relationships between compound caregiving reciprocity and q uality of life outcomes remain after controlling for other important variables in the stress process model? The predictive value of compound caregiving status and reciprocity was assessed using hierarchical multiple regression s The s t ress coping paradigm provide d the guidance for the regression model s Firstly, demographic and significant caregiving stressors at univariate level w ere entered Secondly, compound caregiving, an example of a chronic life event/strain was a dded to the model. R eciprocity was t hen added last to each model


58 Ch apter Four: Findings Sample Characteristics Caregiver Chara c teristics A total of 91 caregivers participated in the study. The caregivers averaged just over 60 years of age but there was considerable range. There were 47 caregivers who were interviewed over the telephone, and 44 who were interviewed in their home. T he majority of this sample (78 caregivers) w ere recruited from throughout Florida in particular the greater Tampa Bay area, Miami Dade, Pensacola, and Fort Myers area. However, due to internet recruitment, caregivers f rom other states were also recruited This included 5 from New Jersey, 4 from Georgia, and 1 each from Maryland, Oklahoma, South Dako ta, and Nevada The caregivers were predominately white and female. Those who identified in the non white category included 4 caregivers who were African American/ Black, 2 who were Hispanic /Latino and 1 Pacific Islander. The caregivers were highly educate d, with the average participant having completed a few year s of college education. With respect to compound caregiving status, over a third of the sample were currently undertaking compound caregiving duties. Furthermore there were many who if not current a compound caregiver, had been in the past. Regarding the possibility of becoming a future compound caregiver for other family members (regardless of their present compound caregiving status), approximately one third responded that they were


59 anticipating that would be a likely scenario. Table 4.1 presents both c aregiver and care recipient characteristics. Table 4.1. Sample Caregiver and Care Recipient Characteristics (N = 91) a N = 63 Mean or % SD Range Caregiver Characteristics Demographic Age (years) 60.8 8.5 50 92 Education (years) 15.1 2 .4 12 22 Gender (Female) 91% Race/Ethnicity (White) 92% Household Income (>$50,000) 78 % Health Total Comorbidities 5.1 2.9 0 13 Comorbidity I nterference 9.2 7.9 0 35 Caregiving Total c aregiving hours per week 39.4 21.3 7 88 Compound Caregiver Now (Yes) 37% Compound Caregiver Ever (Yes) 68% Anticipated Future Caregiving (Yes) 34% Care Recipient Characteristics Demographic Age 29.7 9.5 18 54 Gender ( Female ) 40 % Health and Functional Abilities Activities of daily living (ADL) 4.6 2.1 0 6 2.3 1.7 0 6 Intellectual disability level 2.0 0.8 1 4 Challenging behaviors (total) 2.9 2. 5 0 8 Challenging behaviors (severity) a 6.1 6.0 0 26


60 Care R ecipient Characteristics Th ere were 55 male and 36 female care recipients and thei r mean age was 29 years, with considerable variation Etiology of intellectual disability was Down syndrome (28), U nknown etiology (18) Autism Spectrum Disorders ( 15), Others (14), Cerebral Palsy (12), Fragile X (4). Within the category of others there were two with Tuberous Sclerosis, one care recipient with Prader Willi Syndrome, another with Williams syndrome. Unknown etiology refers to intellectual disability of unknown origin after a formal diagnosis of a chromosomal disorder, or physical condition/disease precipitating the intellectual disability has not been me dically determin ed. Overall, this was quite a diverse sample in terms of etiology. The majority of care recipients had a moderate level of intellectual disability. Overall, 27 care reci pients were in the mild ID cate gory, 44 in the moderate cate gory, 12 we re severely intellectually disabled, and 8 had profound ID. The means, standard deviations, and ranges for all care recipient demographic details are also detailed in Table 4.1 The quality of life outcome measures for the entire sample are presented in Table 4.2. For PCS and MCS, a mean of 50 indicates average health status in the general US population. Overall, caregivers reported poorer physical health, as the mean for the PCS scores were over 0.5 of a standard deviation lower. Global mental health wa s also reported to be slighter lower (.2 of a standard deviation below).


61 Table 4 2. Mean and Standard Deviation for Main Outcome Measures (N=91) Compound Caregiver Characteristics Table 4.3 presents the major types of relationships between compound caregivers and their care recipients. The largest categories of compound caregiving recipients were for mother s father s and spouses. Table 4.3 also presents the major health issue of the In terms of duration of caregiving, there were several compound caregivers in sample that had been compoun d caregivers for many years These outliers inflated the mean duration of caregiving to 77 months with a range from 3 504 months However the median duration was 36 months, and the modal response was 24 months Outcome Measure Mean Standard Deviation Range Range of Instrument Life Satisfaction (Life Satisfacti on Index) 17.38 6.57 3 26 0 26 Depressive Symptomatology (CES D) 1 1.98 9.45 0 40 0 60 Global Physical Health (PCS of SF 36) 43.61 10.50 17.1 65.9 0 100 Global Mental Health (MCS of SF 36) 48.29 11.36 17.1 64.5 0 100 Desire to place 2.9 1.75 1 6 1 6


62 Table 4.3 Comp ecipient Relationship and Health Issue ( N = 34 ) Relationship N % Mother 1 3 ( 38.2 %) Father 4 (11.8%) Spouse 4 (11.8%) Sibling 3 (8.8%) Aunt/Uncle 3 (8.8%) 2 nd Child with Intellectual Disability 3 (8.8%) Moth er in Law 2 (5. 9 %) Grandchild with Medical Needs 1 (2.9%) Major Health Issue 7 (20.6%) Elderly Frail 4 (11.8%) Advanced Macular Degeneration 4 (11.8%) Cardiovascular Disease 4 (11.8%) Intell ectual Disability 4 (11.8%) 2 (5.9%) Cancer 2 (5.9%) Chronic Mental Disorder 2 (5.9%) Hip Fracture/ Replacement 2 ( 5.9 %) Stroke 1 (2.9%) Diabetes 1 (2.9%) Post Operative Convalescence 1 ( 2.9%) Comparison s between C ompound and Non Compound Caregivers Using independent sample t tests (Table 4. 4 ) (Table 4.5 ) caregiving variables, and care recipient characteris tics were compared with non compound caregivers Overall, compound caregivers were very similar to their non compound caregiving counterparts, with three exceptions ; caregiving hours, caregiver ethnicity, and care recipient gender With respect to the tim e spent in their primary caregiving role, there was no appreciable


63 difference, but when the additional compound caregiving hours were added, c ompound caregivers weekly tally increased to around 52 hours The compound caregivers were all Table 4.4 T Test Analyses Compound versus Non Compound Caregivers. Compound Caregiver Non Compound Caregiver M SD M SD df t Caregiver Characteristics Demographic Age (years) 58.8 7.9 61.1 8.9 89 1.22 Education 14.7 2.29 15.4 2.53 89 1.26 Health and Caregiving Total C omorbidities 4.79 2.96 5.42 3.01 89 .97 Comorbidity I nterference 8.68 8.66 9.52 7.47 89 .494 Total C aregiving hours 38.66 20.82 39.84 21.89 89 .253 Caregiving hours + CCG hours a 51.60 26.34 39 .84 21.88 89 2.30* Care Recipient C haracteristics Demographic Age 28.38 8.91 30.51 9.80 89 1.03 Health and Functional Abilities Activities of daily living (ADL s ) 4.88 1.93 4.47 2.12 89 .92 Instrumental ADL s (IADL s) 2.64 1.91 2.21 1.52 89 1.20 Intellectual disability level 1.94 .91 2.05 1.52 89 .577 Challenging behaviors (total) 3.44 2.57 2.68 2.42 89 1.04 Challenging behavior (severity) 5.62 6.73 6.47 5.62 61 .540 a CCG = Compound caregiving p< .05 (2 tailed). white. Regarding gender of the care recipients, the distribution of compound care recipients was fairly equal, but for non compound caregivers male care recipients predominated. A final chi square analysis was conducted on the e tiology of intellectual disability between the groups and no significant difference arose.


64 Table 4.5 Chi Square Analyses Compound versus Non Compound Caregivers. Compound Caregiver Non Compound Caregiver % % N df Caregiver Characteristics Demographic Gender (Female) 91% 91% 91 1 .00 Ethnicity (White) 1 00% 86% 91 1 5.23* Income (>$50,000) 82% 75% 91 1 .59 Care Recipient C haracteristics Demographic Gender (Male) 47% 68 % 91 1 4.06 * p < .05 (2 sided). Research Question 1 Results Was compound caregiving associated with adverse quality of life outcomes when compared with non compound caregivers? The results of the independent samples t tests between compound caregivers and non compoun d careg ivers are presented in Table 4.6 Compound caregivers did not statistically differ from non compound caregivers in four of the outcome measures; life satisfaction, depressive symptomatology, physical and mental health. However, their desire to place their primary care recipient with intellectual disability was significantly higher than their non compound caregiving counterparts. The top 2 items of the scale, i.e. placem currently at that level, compared with only 10% of the non compound caregivers.


65 Table 4.6 Compound versus Non Compound Caregivers in Outcome Measures Compound Caregiver Non C ompound Caregiver M SD M SD df t Life Satisfactio n (Life Satisfaction Index) 17.05 5.81 17.58 7.03 89 .3 6 Depressive Symptomatology (CES D) 10.94 9 .3 0 1 2. 61 9.65 89 .8 5 Physical Health (PCS of SF 36) 4 4 51 11 28 43.09 10.07 89 .62 Ment al Health (MCS of SF 36) 4 7 66 11.22 48.67 11.53 89 .41 Desire to place 3 61 1 72 2 49 1.63 89 3. 11 * ** p< .01 ( 2 tailed) Research Question 2 Results Was increased reciprocity associated with better quality of life outcomes for ID caregivers? Th e mean score for tangible reciprocity was 4.7, and the range was 9 to 12. The mean for emotional reciprocity was 1.6, and the scores ranged from 8 to 12. Therefore in this sample, caregivers reported greater disadvantage of reciprocity, i.e. they felt th at they gave more to the relationship in both emotional and tangible terms than was received However, the disparity in tangible reciprocity was greater than emotional reciprocity The bi variate correlations between a ll five dependent variables and emot ional and tangible reciprocity are presented within the correlation matrix in Table 4 7. Bivariate


66 correlations between tangible reciprocity and the outcome variables resulted in several significant associations. Higher relative disadvantage in tangible re ciprocity was associated with increased depressive symptomatology scores. Higher relative disadvantage in tangible reciprocity was also associated with poorer global mental heath (MCS). Higher relative disadvantage in tangible reciprocity was also associat ed with reduced desire to place scores. Emotional reciprocity was not significantly correlated with any of the outcome measures. Life satisfaction and physical health were not significantly correlated to either tangible or emotional reciprocity scores. Re search Question 3 Results Did the relationships between compound caregiving reciprocity and quality of life outcomes remain significant after controlling for other important variables in the stress process model? For all hierarchical multiple regress ions, the conventional formula for determining adequate sample size is 50 + 8M, where M represents the number of independent variables that are examined (Tabachnick & Fidell, 1996). With due consideration to the constraints of the current sample size and l imiting the number of variables that were entered into the hierarchical regression analyses, only predictor variables that were significantly associated with the outcomes variables were included. Therefore, compound caregiving status was only included as a predictor variable in the regression model for desire to place. Regarding the outcome variables, as neither emotional reciprocity, tangible reciprocity, nor compound caregiver status, were found to be associated at univariate level for global physical he alth, and life satisfaction, further multivariate


67 analysis was not conducted. Correlations between all study variables and outcome measures that were significant were incorporated into the regression models. Depressive symptomatology and global mental h ealth were both associated with total challenging behaviors and challenging behavior severity. These two variables are also highly correlated, (r = .79, p < .01). T o reduce the possibility of multicollinearity, and to help restrict the number of predictor variables due to the sample size, only the variable challenging behavior severity was entered hierarchical regression analyses. This was because the severity score had slightly higher correlations with the outcome measures than the total number of challeng ing behaviors present. Similarly, with comorbidity interference and total comorbidities, the correlation between these variables was high (r = .76, p < .01), and therefore as both variables were associated with depressive symptomatology, comorbidity inte rference was entered into the regression, as the correlation was more significant.


68 Table 4. 7 Correlation Matrix for All Study Variables 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 1. Desire For Placement .14 .01 .09 .01 .05 .04 .0 2 .09 .14 .20 .02 .41** .34** .19 .06 .18 .03 .23 ** 2. Global Physical Health .11 .16 .26* .38** .12 .1 4 .65** .66 ** .10 .36** .02 .07 .95 .11 .06 .03 .04 3. Global Mental Health 70** .48** .28** .03 .0 3 .16 .31** .29** .31** .10 .23* .02 .52** .57** .05 .24* 4. Depressive Symptomatology .59** .11 .01 .1 8 .22* .41** .29* .14 .11 .21* .01 .32** .42** .14 .29** 5. Life Satisfaction .07 .28** .18 .24* .38** .24* .03 .08 .12 .03 .26* .35** .14 .18 6. Caregiver Age .13 .45 ** .33** .13 .11 .78** .12 .04 .03 .39** .27* .00 .07 7. Caregiver Education .25 ** .16 .05 .26* .33** .08 .12 .18 .06 .02 .04 .14 8. Caregiver Income .1 8 09 .0 8 .32** 11 10 .0 4 .1 6 11 13 .0 1 9. Total Comorbidities .76** .10 .35** .02 .05 .01 .04 .06 .08 .03 10. Comorbidity Interference .20 .07 .02 .00 .10 .17 .29* .05 .10 11. Total Caregiving Hours .15 .54** .50** .47* .34** .21 .19 .45** 12. Care Recipient Age .10 .07 .03 .51** .50** .08 .05 13. ADLs .63** .63** .19 .18 .16 .64 ** 14. IADLs .61** .36** .34** .06 .69** 15. Intellectual Disability L evel .08 .06 .26* .57** 16. Challenging Behaviors Total .79** .10 .31** 17. Challenging Behavior Severity .03 .23 18. Emotional Reciprocity .20 19. Tangible Reciprocity *p<.05, **p<.01, ***p<.001


69 Regression M odel Depressive Symptomatology For depressive symptomatology, (see Table 4.8), the regression model accounted for 37.5% total variance in the scores. The demographic and caregiving stressors predicted a significant amount of variance, with higher levels of comorbidity interference being a significant individual predictor variable in the model. The addition of tangible reciprocity as a coping resource, did not predict any additional s ignificant variance in the model, and comorbidity interference remained the only significant predictor in the combined model. Table 4.8 Hierarchical Regression Analysis Predicting Depressive Symptomatology Variables Standardized Beta Coefficients R 2 R 2 Model 1: Demographics & Caregiving Stressors Instrumental ADL s of CR .155 Challenging Behavior Severity of CR .231 Comorbidity Interference .401*** Total Caregiving Hours .058 .350 .350*** Model 2: Model 1 + Reci procity (Coping Resources) Tangible Reciprocit y .206 .375 .025 ***p<0.001 (2 tailed).


70 Regression Model Global Mental Health In the hierarchical regression model to predict global mental health (see Table 4.9), 40.4% of the variance in t he scores was accounted for. Significant variance was again predicted by demographic and caregiving stressors. In particular higher scores in challenging behavior severity, and higher comorbidity interference were significant predictors of global mental he alth. However, the addition of tangible reciprocity, as a coping resource, did not add any further variance to this model. Table 4 9 Hierarchical Regression Analysis Predicting Global Mental Health Variables Standardized Beta Coefficients R 2 R 2 Model 1 : Demographics & Caregiving Stressors Caregiver Age .109 Care Recipient Age .022 Instrumental ADL s of CR .001 Challenging Behavior Severity of CR .437** Comorbidity Interference .267* Total Caregiving Hours .07 2 .404 .404*** Model 2: Model 1 + Reciprocity (Coping Resource) T angible Reciprocity .004 .404 .000 *p<.05 (2 tailed) **p<.01(2 tailed), ***p<0.001 (2 tailed).


71 Regression Model Desire to place The regression model to predict de sire for residential placement accounted for 25.9% of the variance in scores (Table 4.10 ) Caregiving stressor variables accounted for significant variance, with higher level s of activities of daily living being a significant individual predictor. When com pound caregiving was added to the model as a chronic stressor, significant additional variance was also added, and compound caregiving status was a lso a significant predictor variable. Therefore those who were compound caregivers were more likely to desir e residential placement for their primary care recipient. When tangible reciprocity (a coping resource) was added, there was no significant increase in the variance explained. Activities of daily living, and compound caregiving status remained significant predictors in the model Table 4 10 Hierarchical Regression Analysis Predicting Desire For Placement Variables Standardized Beta Coefficients R 2 R 2 Model 1: Demographics & Caregiving Stressors Activities of Daily Living (CR) .326 I nstrumental ADL s (CR) .131 .177 .177*** Model 2: Model 1 + Compound Caregiving (Chronic Stressor) Current Compound Caregiver .270** .249 .071** Model 3 : Model 2 + Reciprocity (Coping Resource) Tangible Reciprocity .149 .2 59 .010 *p<.05 (2 tailed) **p<.01(2 tailed) ***p<0.001 (2 tailed).


72 Chapter Five : Discussion As t his study was exploratory, it yield ed some interesting finding s that were not central to the th ree specific research questions addressed in this disse rtation study. Therefore the discussion will first focus on exploring the findings with regard to the of the study and future directions will then be explored Stud y Findings The first research question was to determine whether compound caregivers had poorer quality of life outcomes compared with their non compound caregiving counterparts. In the present study, compound caregiving was not found to be associated with poorer outcomes in terms of life satisfaction, depressive symptomatology, physical or mental health as hypothesized. However, the hypothesis that c om pound caregivers were more likely to have a greater desire to seek alternative residential placement for their care recipient was supported This may well be that the very act of being a compound caregiver has bestowed upon these parents will happen to my son/daug hter if I type of scenarios. It could also be argued t hat they are experiencing more strain, and thus are more willing to cease their primary caregiving duties. with the non compound caregivers.


73 The majority of compound caregivers were looking after their parents spouses, or in laws with chronic health conditions, so such questions may be more pressing in their own mind as well as the aging process Therefore, it would seem reasonable to suggest that compound caregivi ng status does serve to galvaniz e the discussion about care recipients living elsewhere in some of these families. dep ressive symptomatology, or their life satisfaction was not significantly different from the non compound caregiver there may be two possible explanations. Firstly, older caregivers have a lifetime of caregiving experience, and become experts at their care giving role (Haley & Perkins, 2004) T herefore an additional caregiving role may not be too onerous a burden for these highly experienced caregivers. Indeed, many compound caregivers commented that it was natural that they undertook the compound c aregivin g roles. A lifetime of caring for a child with special needs, may certainly better equip these lifetime caregivers with the knowledge, skills, and empathy required to do so. Therefore, it may be an easier transition to a compound caregiving role, than it is for those who are not previous caregivers within the immediate family thus a type of natural selection, indeed even self selection process manifests. However, in some cases it was expressed that there was an obvious expectation from others in the family that this person take on the extra caregiving role Indeed it may be a possibility that subtle coercion may also operate as some caregivers commented that other siblings had made remarks that it may be easier for the caregiver to look after Mom/Da d etc, as they were already doing it for their Son/Daughter! Sometimes,


74 especially if the caregiver s were already spending considerable time in the primary c aregiving role at home, there was a perception that additional caregiving responsibilities could b e more easily undertaken and be less disruptive to the caregiving routines already established. Another possible explanation of lack of difference in present compound compound caregivers, is that duri ng the compound caregiving episode, one actually becomes adjusted to the task in hand, and may minimize the physical or mental effects that may be manifesting. If one currently has caregiving responsibility for two care recipients, then it might become a c oping mechanism, to suppress any thoughts of ill heath. As one compound caregiver The second research question in this dissertation was to investigate whether reciprocity was associated with better quality of li fe outcomes for ID caregivers. Relative disadvantage in reciprocity (i.e. indicating the caregiver gives more than they receive ) was found to have significant correlations with depressive symptomatology and global mental health as hypothesized. Therefo re, if a caregiver feels like there is considerable negative imbalance in the exchange of duties within the caregiving relationship (e.g. that one is giving much more than one is getting) poorer mental health outcomes are associated. Relative disadvantage in reciprocity indicates that the care recipient has significant needs thus is unable to provide tangible help to their parent in any meaningful way for maintaining the family household This raises the question of whether the number of other able co habitan ts, and tangible help available from others, needs to be


75 ascertained in assessments of reciprocity. If a caregiver has adequate support from others, then the issue of tangible reciprocity is less important. However, if tangible help is not readily availabl e, relative disadvantage in reciprocity in caregivers who live alone with their care recipient, is likely to assume much greater importance in its role as an external coping resource. An interesting finding and opposite to what was hypothesized, was th e finding that relative disadvantage in tangible r eciprocity was associated with a decreased desire for residential placement. It would appear in this study, that caregivers of those with greater needs are less likely to want to place their son or daughter into residential care. However, this may be that such caregivers are more committed to looking after their son/daugh ter with highly dependent needs rather than considering the alternatives of other residential placements. There were several caregivers in the current study with very severely or profoundly intell ectually disabled children, who required considerable attention due to their associated secondary conditions (e.g. severe epilepsy, PEG feeding from dysphagia, respiratory therapy, hemiplegia and qua driplegia, congenital blindness/deafness limited communication skills ) These caregivers were quick to assert that they felt the most qualified to look after their care recipient even when they were receiving personal companion/assistance services. Indee d, there were several caregivers that did not feel comfortable leaving their son/daughter in the company of in home personal companions in some cases, because they felt that the care workers were not as adept in the care of their son/daughter. Others remar ked that the very fact that their son or daughter was highly dependent on them, made them unsuitable candidates for alternative


76 residential placement. The notion of the care recipient living elsewhere was asserted by so me, to be a better option only for th ose people with intellectual disabilities, who are were more able, verbal, and independent. There was considerable apprehension from some caregivers that highly dependent care recipients do not fare as well in such settings, another possible reason that ma y explain the finding of relative disadvantage in tangible reciprocity reduced desire for placement in this study. Life satisfaction or physical health was not associated with tangible reciprocity. Emotiona l reciprocity was not associated with any outcome measure. This was somewhat surprising given the relative importance of the primary caregiving role that emotional benefits derived from the relationship did not manifest any significant associations Overall, caregivers reported to feeling that emotional reciprocity was reasonably equitabl e. Lack of significant results may be a result of the items the emotional reciprocity scale used Considerable thought was given to the wording of such items, so as to take into account the wide range of communication a bilities that would exist in the care recipient s in this study However, i t may be the case that the items were too broad or lack the sensitivity to truly capture emotional reciprocity because of this emphasis on making the items applicable to all Fu r ther more, tangible reciprocity does not incur inherent value judgments about a relationship in the same way that emotional evaluations do. Caregivers may have a found it difficult to accurately evaluate their relationship in such a manner, or else emotional re ciprocity is still perceived to be very evenly balanced in circumstances where little or no reciprocity is markedly evident to the observer. That is not to deny


77 there are those c are recipients that despite physical neurological, or behavioral issues that may interfere somewhat in their ability to emotionally connect with others nevertheless, rapport, and emotional exchanges can still be achieved. Oftentimes, i t is just more dependent on more subtle body language, and gestures R eciprocity therefore seem s to have some element of appraisal in it, e.g. caregivers may also incorporate a judgment that includes some consideration of the capacity of the other person to give back. Items that may be more discriminating of emotional reciprocity might need to in clude more objective indicators and consider such things as time spent in mutually enjoyable activities. Fundamentally, the greatest is sue may be that when emotional reciprocity is assessed between a non intellectually disabled person and their adult son/d aughter who continues to live in the parental home, there is the obvious fact that these relationships are cherished by caregivers. Thus it would be interesting to see whether emotional reciprocity between parents and adult children with intellectual disab ilities are not as equal when they live apart Research question three investigated the utility of compound caregiving status and reciprocity as predictor variables that can account for variance in scores over all other study variables. In the present st udy, tangible reciprocity was not found to be a useful individual predictor. However, c ompound caregiving status was found to be a significant predictor of desire for r esidential placement, even after control ling for other predictor variables.


78 Increased desire for placement can have t w o possible reasons, there is either depletion in ones coping resources, that result in a caregivers increasing desire to discontinue the caregiving role. Alternatively, there is increased openness to the prospect of their so n/daughter to living elsewhere. To err on the side of caution, it would seem reasonable w ith limited available resources, and state budget deficits that have necessitate d long wait ing lists for services to adults with intellectual disabilities, that compou nd caregiving roles should be an integral part of the assessment process. Compound caregiving status should definitely be a factor for prioritizing services. Even though the current study found no appreciable difference in q uality of life compared with ot h er non compound caregivers, there remains the distinct possibility that the continued demands of compound caregiving, or multiple episodes of compound caregiving, may well lead to poorer outcomes over the long term. Therefore, timely assistance to t he prim ary caregiving role, in terms of additional support may actually delay placement. This may i ndirectly save substantial costs that arise from providing alternative residential care indeed, potential crisis intervention in some cases, rather than increasin g in home supports, or even respite care during compound caregiving periods O ther Relevant Findings It appear s that compound caregiving is actually quite commonplace. As this study is one of the first to isolate compound caregivers in this manner there was little expectation on just how many compound caregivers would be identified. Indeed, it was a possibility that if insufficient numbers within the sample had not been interviewed, that compound caregivers were to be oversampled. This proved not to be n ecessary. Whilst


79 this was a convenience sample, nevertheless, 37% of the caregivers were subsequently found to be compound caregivers during their interviews. F urthermore, study recruitment materials did not specifically mention this particular aspect of t he study, i.e. that there would be questions regarding caregiving for others in addition to their primary caregiving role. Furthermore, 6 8 % were either a current or had previously been a compound o common a factor for it to be predictive of many fundamental outcomes. To add further weight to this argument, irrespective of current compound caregiving duties, when asked whether any future caregiving for a family member was an ticipated, 34% of the sample be expected in most circumstances. Therefore perhaps greater attention should be focused on compound caregivers who have had multiple ep isodes of compound caregiving. In a case study of a compound caregiver by the dissertation author, the caregiver had 4 separate episodes of compound caregiving duties (Perkins, in press) with the fourth caregiving episode resulting in considerable distres s In the present study, questions were asked regarding the current, and up to two previous episodes of compound caregiving. The sample actually had 6 participants that were currently compound caregivers, and who had on two previous occasions been compound caregivers to other family members in the past. There were also 5 triple caregivers, i.e. had caregiving duties to their son/daughter with intellectual disabilities, and two other family members concurrently. Unfortunately, these particular caregiving gr oups were too small, even if combined, to allow for independent analysis to answer the specific research


80 questions of the present study. However, to illustrate that multiple caregiving responsibilities is likely to be seriously detrimental to quality of life, caregivers, a quick comparison is quite illuminating. T he mean depressive symptomatology score for the sample was 1 2.0 but for triple caregivers it was 18.2 (indicating that this was a significantly depressed group of individual s ). Furthermore their life satisfaction score was only 12.4 (5 points lower than the sample mean of 17.4). Even with the obvious limitation of the small sample size nevertheless the contrast is quite apparent. This study also highlighted the fact that, thou gh their numbers may be small, there are caregivers who have more than one child with intellectual disabilities and the issues of being a lifelong caregiver to two children are doubtless magnified. With regards to emotional reciprocity, only one variabl e in the entire study was significantly correlated, intellectual disability level of the care recipient (r = .26, p = .013). Therefore, the greater the severity of intellectual disability, the higher the relative disadvantage in emotional reciprocity. Th us there does seem to be some appraisal of limitations imposed through increasing communication difficulties, of what is emotionally given to what is received, but some inherent mechanism overrides the impact. Perhaps at some level there is cognitive disson ance about true emotional reciprocity that serves to protect the caregiver from feelings of inequity, and possible lack of emotional nourishment that is derived in the relationship. Study Limitations The present study has a number of limitations that nee d to be acknow le dged. Firstly, this was not a randomized sample, and the convenience sampling methodology


81 can present several biases in the results. First, it may be that healthier caregivers were more willing to participate, whereas caregivers who did not volunteer may have more adverse health outcomes. This may lead to data that suggests more positive outcomes than actually exists in the population. Another possibility is that the participants in this sample were very well educated and affluent, and thus more likely to be knowledgeable and resourceful in their own health and wellbeing, as well as accessing resources that are available to them, their primary care recipients and their compound caregiving recipients. The parent to parent referral that was use d to recruit some participants, may also have biased the sample to include more caregivers who greatly benefit from durable support networks with other parents. Conversely, p revious research has also indicated that caregivers who are more depressed are li kely to participate in studies if they are offered the alternative of in home interview (Dura & Kiecolt Glaser, 1990) therefore the present study may inadvertently have captured more caregivers who felt compelled to tell their story. Randomized sampling w ould help minimize such bias. It is important to mention that both telephone and in home interviews were utilized in the present study however it was necessary in order to maximize the sample size. There are some design issues that also warrant discussi on. In particular, the cross sectional design limits interpretation to the assessment of one time point only. L ongitudinal changes in caregiver well being, especially during periods of high stress that may be experienced during compound caregiving would al low the investigat ion of the potentially long lasting ramifications to health that can arise. Similarly, a diminishing


82 sense of reciprocity over time may help to indicate periods of increasing strain and tensi on with the caregiving role. This study also r elied on self reports of well being. Though it would be advantageous to include objective clinical measurements of physical health, time and budget constraints prevented this possibility. The sample size and comparison groups may have reduced the stat istic al power of th e analyses conducted in this study, and it is possible that Type II error s have occurred that have obscured the detection of smaller or moderate statistically significant difference s Future studies would benefit from an increase in study par ticipants to overcome this particular limitation. Due to time/budget constraints, the current proposal d id not utilize a non caregiving control group. The rationale that led to this decision was that the two exploratory aspects (i.e. reciprocity and compou nd caregiving) would be better served by investigating a larger sample of caregivers, rather than devoting time and resources to a separate control group. The results of the present study have provided valuable pilot data that can guide more methodological ly rigorous studies in the future. Future Directions Although limited by sample size and cross sectional design, this study has helped to identify several avenues for future research. Compound caregiving is more common than anticipated and the lack of f inding any significant quality of life decrements compared with other caregivers might have been exacerbated by heterogeneity of the compound caregivers used in the current sample. More robust differences may be


83 detected in compound caregivers grouped in m ore homogenous categories, such as those episodes of compound caregiving, to those that have more than one child with intellectual disabilities. This study has highlighted th e need to consider several different compound caregiving scenarios and refinement of criteria that describes compound caregiving. Other factors that may be need to be assess ed are the composition of the family household (i.e. who lives with the compound ca regiver ), and whether the compound care recipient also lives in the family home or elsewhere. It is possible that some caregivers may live alone with two care recipients. Investigation of specific issues that can arise in compound caregiving, such as prior itizing caregiving task s difficulties maintaining employment, feeling stressed, feeling physically and emotionally drained, availability of adequate help, are just a few examples of pertinent problems that may arise. Further research as to the exact mecha nism of why compound caregivers are more likely to seek placement is also warranted. This dissertation found that emotional reciprocity was unrelated to quality of life. The items used for emotional reciprocity may benefit from being mo re objectively qu antified items that focus on shared activities, and other aspects that can indicate the emotional quality of the relationship This might include having f un and laughter together shared hobbies mutual friendships with others Tangible reciprocity may ben efit from inclusion of more specific chores and inclusion of how often these chores are done on a regular basis. It may be that rather than grading the recipr ocity items separately as was done in this study (i.e. what the caregiver felt they gave was asses sed at


84 the start of the interview, and what they received was given at the end) an alternative scale that one judges across a continuum of given versus received may increase the accuracy of response. Furthermore, emotional reciprocity may actually diff er between parents whose son/daughter with ID currently lives in an alternative residential setting, compared with those caregivers whose son/daughter lives at home. Another interesting avenue would be to determine the level of congruence between the excha nge of reciprocity that exists, as reported by dyads of caregiver and care recipient especially in tangible reciprocities This would also be interesting in caregiving scenarios in general, and not just limited to ID caregiving. Overall, it is hoped that this dissertation study will have some practical utility in emphasizing the commitment that lifelong caregivers of adults with intellectual disabilities make on a daily basis to improve the quality of life of the most vulnerable in our population. It is a testament to these parents, that so many of them also assume the mantle of compound caregiver, and provide care and compassion to other members of their family when their primary caregiving role is already a substantial undertaking. Proper recognition of the extent of their caregiving roles and commitments by clinicians, service providers, policymakers, stakeholders, and indeed, in some cases, their own family members, is long overdue. It is hoped that this dissertation will, in some small way, be part of the essential groundwork that sets the stage for further large scales studies in this new area of caregiving research.


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Abo ut the Author Elizabeth A. Perkins is a Registered Nurse Mental Handicap (RNMH) from the Hereford and Worcester College of Nursing and Midwifery England from 1992. She als o has a (Summa Cum Laude) in Psychology from the University of South Florida from 2003. She previously worked in clinical and managerial roles in residential care of both older adults and persons with intel lectual/developmental disabiliti es in England. She entered the Ph.D. in Aging Studies program at the University of South Florida in 2003. While in the Ph.D. program at the University of South Florida Ms. Perkins was employed as a Graduate Teaching Associate, teaching undergraduate Physical Changes and Aging, and Psychology of Aging c ourses. She co authored five peer reviewed journal articles one book chapter, and one textbook. She has presented her work at several national conferences including the Ge rontological Society of America and the American Association on Intellectual and Developmental Disabilities.


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