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Hope and quality of life in hospice patients with cancer
h [electronic resource] /
by Cynthia Brown.
[Tampa, Fla.] :
b University of South Florida,
Thesis (M.S.)--University of South Florida, 2005.
Includes bibliographical references.
Text (Electronic thesis) in PDF format.
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Mode of access: World Wide Web.
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ABSTRACT: Hope is considered to have a positive influence upon health. Cancer patients may enter hospice care after a rigorous course of medical treatment, having hoped for a cure or long remission. While the hope for cure is important, hope is no less important at the end of life when the goal of care is quality of life. This study examined the relationship between hope and quality of life in hospice patients with cancer. Thirty-one patients with cancer, who were alert, oriented, living with a caregiver, and aware of their diagnosis were sampled from a hospice program. The instruments used were the Herth Hope Index (HHI) and the Hospice Quality of Life Index (HQLI). The HHI total scores and the HQLI total scores were significantly positively correlated (r = .356; p = .049). This finding suggests that hope is a different concept than quality of life but that these concepts are related. A high level of hope (mean of 42.84 out of a possible 48) was maintained by subjects.The HQLI subscale of social/spiritual well-being and the total HHI scores were also positively correlated (r = .51; p = .003) suggesting that hope can be influenced by this aspect of quality of life which includes a relationship with God, support from family, friends and healthcare providers, and spiritual support from the healthcare team. The findings of this study underscore the importance of the healthcare provider in promoting hope at the end of life, and suggests that hope is not taken away by admission into a hospice program.
Adviser: Susan C. McMillan, PhD, ARNP.
t USF Electronic Theses and Dissertations.
Hope and Quality of Life in Hospice Patients with Cancer by Cynthia Brown A thesis submitted in partial fulfillment of the requirements for the degree of Master of Science College of Nursing University of South Florida Major Professor: Susan C. McMillan, PhD, ARNP Lois Gonzalez, PhD, ARNP Janine Overcash, PhD, ARNP Date of Approval: October 11, 2005 Keywords: pain, nursing care, end-oflife care, suffering, spiritual well-being Copyright 2005, Cynthia Brown
i Table of Contents List of Tables iii Abstract iv Chapter One: Introduction 1 Problem Statement 2 Research Questions 2 Definition of Terms 2 Quality of Life 2 Hope 3 Significance to Nursing 3 Chapter Two: Review of Literature 4 Conceptual Model 4 Quality of Life 4 Hope 5 Review of Research 6 Hope and the Psychophysiological Domain 6 Hope and the Functional Domain 7 Hope and the Social/Spiritual Domain 8 Hope, Quality of Life and the Temporal Dimension 10 Nursing Interventions to Increase Hope in the Patient With Cancer 12 Summary 14 Chapter Three: Methods 15 Setting 15 Sample 15 Instruments 16 Hospice Quality of Life Index 16 Validity 16 Reliability 16 Herth Hope Index 17 Validity 17 Reliability 18 Demographic Data Form 18 Data Collection 18
ii Chapter Four: Results, Discussion and Conclusions 20 Results 20 Demographic Data 20 Research Objective One 22 Research Objective Two 22 Research Objective Three 22 Hope Index Scores, Worst Pain and Pain Relief 23 Discussion 24 Demographic Data 24 Research Objective One 26 Research Objective Two 26 Research Objective Three 27 Hope Index and the Subscales of th e Hospice Quality of Life Index 27 Hope Index Scores, Worst Pain and Pain Relief 28 Conclusions 29 Recommendations for Future Research 29 References 30 Appendices 33 Appendix A: Martocchio and Dufault (1985) Hope Model 34 Appendix B: Permission for use of Herth Hope Index 35 Appendix C: Hospice Quality of Life Index-Revised 1998 36 Appendix D: Herth Hope Index 40 Appendix E: Demographic Data Collection Form 41 Appendix F: Consent Form (with IRB stamp) 42
iii List of Tables Table 1 Types of Cancer in Sample 21 Table 2 Correlations Between Quality of Life, Subscales and Hope Index Scores 23 Table 3 Correlations Between Hope Index, Worst Pain and Pain Relief 23
iv Hope and Quality of Life in Hospice Patients with Cancer Cynthia Brown ABSTRACT Hope is considered to have a positive in fluence upon health. Cancer patients may enter hospice care after a rigor ous course of medical treatm ent, having hoped for a cure or long remission. While the hope for cure is im portant, hope is no less important at the end of life when the goal of care is quality of life. Th is study examined the relationship between hope and quality of life in hospice patients with cancer. Thirty-one patients with cancer, who were al ert, oriented, living with a caregiver, and aware of their diagnosis were sampled from a hospice program. The instruments used were the Herth Hope Index (HHI) and the Hospice Quality of Life Index (HQLI). The HHI total scores and the HQLI total scores were significantly positively correlated (r = .356; p = .049). This finding sugges ts that hope is a different concept than quality of life but that thes e concepts are related. A high level of hope (mean of 42.84 out of a possible 48) was maintained by subjects. The HQLI subscale of social/spiritual wellbeing and the total HHI scores were also positively correlat ed (r = .51; p = .003) suggesting that hope can be influenced by this aspect of quality of life which includes a relationship with God, support from famil y, friends and healthcare providers, and spiritual support from the healthcare team.
iv The findings of this study underscore the importance of the healthcare provider in promoting hope at the end of life, and sugge sts that hope is not taken away by admission into a hospice program.
1 Chapter One Introduction Cancer is the second leadi ng cause of death in the Un ited States. The estimated number of cancer deaths for 2004 was 563,700 (American Cancer Society, 2004). For 2003, the National Hospice and Palliative Care Organizati on (NHPCO, 2005) reported that 930,000 patients were se rved by hospice programs. A pproximately 49 percent of these patients were admitted into hospice w ith a diagnosis of cancer. Hospice care is offered when life expectancy is six months or less. Modern hospice care has its origin in the work of Cicely Saunde rs, a nurse, social worker and physician, who founded Saint ChristopherÂ’s hospice in England in 1967 (Clark, 1999). Hospice care bega n in the United States in the 1970Â’s. The philosophy of hospice espouses death with dignity, at home, surrounded by fa mily, and free from uncomfortable symptoms. It has become an alternative to dying in a hospital. Hospice care is delivered by an interd isciplinary team, often comprised of physicians, nurses, home health aides, cl ergy and trained volunteers (NHPCO, 2003). Rather than focusing on the disease and cure, hospice care focuses on the quality of life of the patient and family. Goals are defined in terms of patien t comfort, and quality of life takes precedence over quantity of life (Ega n & Labyak, 2001). Patients entering hospice care, if mentally competent, must give informed consent. Hospice patients are aware of both their diagnosis and prognosis.
2 Problem Statement Many cancer patients enter hospice care after a ri gorous course of medical treatment that provided hope for a cure or long remission. Hope in this case seems to be in the hands of physicians who offer it in the form of te chnical interven tion (Eliott & Olver, 2002). There may be a loss of hope experienced by those for whom continued treatment is no longer appropr iate (Nekolaichuk & Bruera, 1 998). The goal of end of life care is quality of life, and hope is considered to have a positive influence upon health. Hope has been viewed in terms of hope s for cure, however, there are few published studies regarding hope in hospice care in the research literatu re. The purpose of this study was to examine the relationshi p between hope and quality of life in terminally ill hospice patients with cancer. Research Questions The proposed study explor ed the following res earch questions: 1. What is the mean level of quality of life in hospice pati ents with cancer? 2. What is the mean level of hope in hospice patients with cancer? 3. Is there a significant positive relationship between quality of life and hope in hospice patients with cancer? Definition of Terms For the purposes of this study, the following terms are defined: 1. Quality of life (QOL). Quality of life is subjective a nd can only be determined by the patient. Quality of life is individualized a nd is more aptly described as a Â“quality of beingÂ” (Benner, 1985 p. 5). Cella (1995) notes that quality of lif e encompasses those domains which are associated with well-being. McMillan and Weitzner (1998)
3 conceptualized quality of lif e to include three domains: psychophysiological, functional and social/spiri tual well-being. 2 Hope. Dufault and Martocchio (1985, p. 380) conceptualized hope as Â“a multidimensional dynamic life force char acterized by a confid ent yet uncertain expectation of achieving a future good which, to the hop ing person, is realistically possible and personal ly significant.Â” Significance to Nursing While the hope the cancer person holds while seeking a cure is important, hope has been found to be no less important at the end of life (Hall, 1990). Hope is a vital coping mechanism for the cancer patient (H erth, 1989) and is a constant subjective resource within each person (Dufault & Martocch io, 1985). A vital role of hospice is to reframe the meaning of hope and help the person find meaning in the face of his or her illness, therefore improving the quality of life (Hall, 1990). Results of this study may shed light on the importance of hope at the end of life and therefore support the role of nursing in promoting hope.
4 Chapter Two Review of Literature The review of literature details the characteristics of hope explicated in the research literature. This chapter focuses on the quality of life framework (McMillan & Weitzner, 1998) and the con ceptual model of hope (Duf ault and Martocchio, 1985). Studies related to the domains of quality of life and hope ar e analyzed and applied to the quality of life framework. Fo llowing a review of the domains of quality of life in relation to hope and a review of the temporal dime nsion of hope, research involving nursing interventions to promote hope in cancer patients are reviewe d. A series of studies have been conducted, and these are discussed within the QOL framework developed by McMillan and Weitzner (1993). Conceptual Model Quality of Life The Hospice Quality of Life Index (HQLI) was developed by McMillan and Weitzner (1998) after review of QOL literature and consultati ons with hospice staff. The quality of life framework was concep tualized to includ e three domains: psychophysiological, functional and social/spiritual well-being. The psychophysiological domai n of the quality of li fe framework includes anxiety, pain, worry, anger, sleep, sex life, br eathlessness, constipati on and the concept of hope. The functional domain includes the ability to concentrate, social life of the patient
5 and family, and the ability to maintain a sense of indepe ndence. The soci al/spiritual domain includes support from fam ily and friends, healthcare team, a relationship with God (however God is defined for the person) an d meaning in life. The factor structure of the HQLI was validated in a samp le of home care hospice patien ts with cancer (n = 255). Included in the psychophys iological domain is the co ncept of hope (McMillan & Weitzner, 1998). However, others have measured hope as a completely separate concept. Rustoen Wiklund, Hanestad, and Moum ( 1998) randomized newly diagnosed patients with cancer into a nursing intervention group designed to increase hope, a second group into a standard coping program, and a third into a control group. The hope group had increasesd in levels of hope (p = .020), but no increas e in quality of life. The investigators concluded that hope and quali ty of life are separate phenomena. Hope Dufault and Martocchio (1985) studied hope in 35 cancer patients who were 65 or older. The data was then genera lized to other terminally ill a dults with various diagnoses. They defined hope as both generalized and particularized. Generalized hope is not encumbered by time or the particulars of sp ecific goals, whereas particularized hope is specific in regards to time and goals. Bo th generalized and pa rticularized hopes are multidimensional and comprised of six dime nsions: affective (emotions), cognitive (imagination, thinking, state of being), behavioral (actions taken to achieve a hope), affiliative (relationships), te mporal (past, present, future and being), and contextual (context of life) (Appendix A).
6 Review of Research Hope and the Psychophys iological Domain Chen (2003) evaluated the ef fect of pain on hope in a convenience sample of patients with cancer (n = 226). The subjects were divide d into two groups, one group with pain (n = 91) and one gr oup without pain (n = 135), in or der to measure the effect of pain upon both levels of hope and the pe rceived meaning of pain. Instruments administered were the Percei ved Meaning of Cancer Pain Inventory (PMCPI), the Herth Hope Index (HHI), a pain assessment fo rm developed by Che n, and the Karnofsky Performance Scale. Chen (2003) correlated th e level of hope to th e meaning of cancer pain. The PMCPI was sens itive to a perception of the cance r pain as challenge, loss or threat. Those who perceived th eir pain as a challenge had higher hope scores, and those who saw their pain as a threat or loss had lower hope scor es. Therefore, assessment of pain must include an assessment of the mean ing of the pain. Lin, Lai and Ward (2003a) compared a c onvenience sample of 484 patients with cancer, who were with pain (n = 233), and without pain (n = 251) to examine how cancer pain affects performance status, mood and levels of hope. Inst ruments included the Profile of Mood States (POM S), the HHI, the Brief Pain Inventory (BPI) and the Karnofsky Performance Scale. Sign ificant findings in this stud y were that levels of hope did not differ in those with or without pain ; however, the impact of how pain interfered with daily life did negatively correlate with levels of hope (r = -.31, p = .001). The investigators postulated that cancer pain al one does not im pose as great an impact on levels of hope as the effect of cancer pain on oneÂ’s ability to perform activities of daily living.
7 Hope and the Functional Domain A study by Herth (1989) correlated levels of hope with levels of coping in cancer patients (n = 120) who were receiving chem otherapy. Instruments used were the Herth Hope Scale (HHS), the Jalowiec Coping S cale (JCS), and a dem ographic data form which included three items as king about job and family re sponsibilities and religious beliefs. Herth (1989) found a moderately strong (r = 0.80, p = .001) relationship between the HHS and the JCS with a 64% co-variance, reflecting that high le vels of hope related to high levels of coping. Signifi cant findings from the study were that a loss of ability to fulfill family responsibilitie s but not job responsibilities could influence hope or coping. Those who had strong religious beliefs had higher levels of hope and coping than those with a weak or no faith. Lin, et al. (2003b) designed a cross-sectional study of oncology patients (n = 124), of whom 21% were unaware of their cancer diagnosis. This study occurred in Taiwan where it is considered ethically acceptable to withhold a diagnosis from the patient and reveal it to fam ily members only. The instrument s used were the HHI and a demographic and disease data collection sheet. Those who desc ribed their disease process as either benign tumor or other, as opposed to cancer or malignancy, were considered unaware of their diagnosis. Levels of hope in the subjects were evaluated at 3, 6, 12 months and greater than 12 months after patient s had been told their diagnosis. The study revealed that the 79% who knew their diagnosis maintained higher levels of hope than the group without cancer diagnosis disclosure. It may be inferred from the study that withholding a hospice referral in an attempt not to disclose or discuss the te rminal illness will not promote hope.
8 Hope and the Social/ Spiritual Domain OÂ’Connor, Wicker, and Ge rmino (1990) analyzed the randomly selected interview data of thirty newl y diagnosed patients with cancer Consistent themes emerged from the interview data as havi ng importance in the search fo r meaning in patients with cancer. Six themes emerged, with some patie nts identifying more than one theme. Six themes were identified: pers onal significance, consequenc es of diagnosis, changes in outlook on life, living with cancer, review of oneÂ’s life and hope. The definition of hope was consistent with Dufault and MartocchioÂ’s (1985). The hopes of participants were on a future event such as taking a trip, attendi ng a wedding or awaiting a birth. Some placed hope in treatments and doctors. For 30% of the subjects, religion and God were sources of hope. One subject had hope for a peaceful death and another was encouraged that others had quit smoking because of his lung cancer. A descriptive, correlatio nal study by Ebright and Lyon (2002) evaluated the effects of social support, se lf-esteem and religious beli efs on levels of hope. The convenience sample consisted of recently diagnosed brea st cancer patients who had completed breast surgery (n = 73). At 1 to 3 months after diagnosis and 10 to 12 months after surgery, subjects completed the HHI, an emotional and apprai sal measurement, a social support questionnaire, the Rosenberg Self-Esteem Scal e, and a one-item question regarding religious beliefs. The results demons trated that coping, se lf-esteem and social support were contributors to hope. Raleigh (1992) examined how people with chronic illnesses maintained hope. The sample consisted of an oncology group who had comp leted treatment and had no metastases (n = 45) and a group with chronic illnesses (n = 45 ). Explored were sources of
9 hope, and differences in levels of hope and future orientatio n between those with cancer as opposed to other illnesses. The instrument used was the Sources of Support Interview Schedule developed by the investigator. Th e questions were desi gned to guide the interview process toward the subjectÂ’s illne ss experience and ways th e subjects were able to support their hopefulness. Study outcomes re vealed religion, family and friends as supports which helped patients maintain a positive outlook in the face of illness. Having people visit, talk with, or he lp with physical needs such as activities of daily living were identified by subjects as ways ot hers help to maintain hope. A study by Ballard, Green, McCaa and Logs don (1997) compared levels of hope in newly diagnosed cancer patients (n = 20) and those with recurr ence (n = 18). The instrument used was the 30 item HHS. An open-ended question also was added: Â“What gives you the most hope at th e present time?Â” (Ballard, et al., p. 899). There were no statistical differences betwee n the groups except in sources of hope. The newly diagnosed placed their hope in health care professionals, whereas thos e with a recurrence of cancer placed their hope in their faith, as reflected in this respons e: Â“Â…IÂ’m a Ch ristian. I know that doctors can only go so farÂ—there is higher po werÂ” (Ballard, et al., p. 903). Herth (1990) studied 30 termin ally ill adults in orde r to further explore the meaning of hope in the dying. Elev en of the participants were diagnosed with cancer. The Herth Hope Index, interview and Background Data Form (BDF) were the instruments used in a method of methodological triangula tion. Five questions were used in the interview in order to elicit from subjects their thought s on the meaning of hope. The questions related to the mean ing of hope, what is hoped for, sources of hope, and how each person maintained hope. The background data collected included demographics and
10 an item on fatigue and activity level to c ontrol for these variab les in the study. The subjects identified six hope-fostering st rategies. These aspects of hope were Â“interpersonal/connectedness, lig ht-heartedness, personal at tributes, attainable aims, spiritual base, uplifting memori es and affirmation of worthÂ” (Herth, p.1254). The subjects also identified thr eats to hope. These incl uded uncontrolled pa in, abandonment and isolation, and threats to dignit y. Physical debility was not iden tified as a threat to hope. Hope was identified as an inner power and was active in all subject s. Ten subjects were followed longitudinally until their death in or der to monitor the stability of hope. As death approached, the sources of hope narrowed to relations hips, attainable aims and spirituality. To be able to experience an inner peace was also conveyed as a hope of subjects nearing death. Hope, Quality of Life and the Temporal Dimension Herth (1993) investigated insight into hope time frames and quality of life in the elderly is gleaned in a crosssectional study of people age 60 and older living in either a private home, housing facility or long term care facility (n = 60, cluster sampling). The sample was further stratified into an old-old group (over 80), and the young-old (65-80). The investigator used a methodological triangulation approach with the same instrumentation as the previous study in 1990 and added an intervie w question that asked how the person regained hope when levels of hope were low. To cont rol for the potential negative influence of holidays and extreme winter weather, the study was conducted in April, May and June. The findings revealed different focu ses of hope based upon age, place of residence and health. Those 65 to 80 years ol d who lived in their own homes with good
11 health and function had hopes that were self-fo cused and goals that we re projected over a 1 to 3 year period. Those who were over 80 and living in th e senior citizen housing with good health and function had hopes focused upon others and goals projected into the nearer future (weeks to mont hs). Those who were living in the long-term care facility with poor health and function had hopes focused on friends a nd their caregivers and on the very near future (days to weeks), and any hopes for them selves were in a life after death. As the person neared d eath, the focus was found to be on the present, an example of the concept of being which Dufault and Martocch io (1985) described. Hope could be inhibited for the subjects by the Â“hopelessness in othersÂ” such as friends, caregivers and hea lthcare profession als (Herth, 1993, p. 147). Other hope inhibiters were loss of pe rsonal energy, uncontrolled pain and suffering, and a loss of cognitive ability. The ov erall hope scores were similar with the exception of the subjects living in a long-term care facility and experi encing fatigue. Through the interviews, eight hope fostering strategies were identified: Â“interconnectedness with self/others/world; purposeful activities; up lifting memories; cognitive stra tegies; hope objects; refocused time; lightheartedness; spir itual beliefs and practicesÂ” (Herth, 1993, p. 148). The most significant category of hope promotion in all of th e subjects was found in the interconnectedness with others and God. A study by Rustoen and Wiklund (2000) was conducted to ev aluate the levels of hope for patients (n = 131) w ho had a recent diagnosis of can cer and a life expectancy of at least one year. Sixty-one percent were r eceiving treatment at the time of the study. The Nowotny Hope Scale, quality of life ques tionnaires and a demogr aphic questionnaire were mailed to the homes of the subjects. Fi ndings indicated that neither time since the
12 diagnosis nor the age of the pa tient had an effect on levels of hope. Addi tionally, those who lived with someone had higher levels of hope. Nursing Interventions to Increase Ho pe in the Patient with Cancer A study was designed by Herth (2000) to evaluate whether a nursing intervention designed to promote hope coul d positively influence levels of hope in patients receiving cancer treatment following a first recurren ce of cancer. Patients (n = 115) were randomized into one of thre e groups. Group one, the hope in tervention group, received a nurse-led intervention designed to promote s upport and nurturing in the small groups of 8 to 10. Group two focused on cognitive understan ding of cancer, and received information only and was an attention group designed to control for the va riable of attention. Group three, the control group received no inte rvention other than standard care. The instruments used were the HHI, Ca ncer Rehabilitation and Evaluation SystemsÂ—Short Form (CARES-SF) for measuring quality of life, and demographic data. Data was collected before the interventions were administer ed to the hope and attention groups. Both the attention and the hope gr oups received eight, two-hour sessions. The hope intervention was based upon the Hope Process Framework (Farran, Herth, and Popovich, 1995) and focused upon creating a supportive and caring environment through sessions designed to enhan ce the awareness and expressi on of the thoughts, feelings, relationships, goals and spirit uality of participants. Follo wing completion of the hope and attention interventions, all subjects co mpleted the HHI and the CARES-SF. The instruments were again administered at th ree, six and nine months following the interventions.
13 The results of the study rev ealed that the hop e intervention group reflected higher levels of hope in each data collection period. Those in the in tervention group also reflected increasing levels of quality of life from the ba seline before th e intervention, while those in the control and attention groups reflected decreas es in quality of life. This study lends evidence to the significance of the nurseÂ’s role in influencing hope and hopeÂ’s influence on increas ing quality of life. Rustoen, et al. (1998) desi gned and implemented a hope promotion intervention by randomizing patients recently diagnosed wi th cancer (n = 96) into three groups: control group, cancer info rmation group, and hope pr omotion group. Before the intervention, the subjects completed the Nowotny Hope Scale (NHS), Ferrans and Powers Quality of Life I ndex and Cancer Re habilitation and Evaluation Systems (CARES) questionnaires. Pre-in tervention hope scores revealed moderate hopefulness in all subjects. Dufault and Mart occhioÂ’s (1985) model of hope supports the idea that when specific hopes are not attained, then generalized hopes wi ll continue the maintenance of hope which will allow a person to cope with stre ss. Rustoen, et al. also surmised that the high levels of hope could have been due to denial (a c oping mechanism with a cancer diagnosis). The intervention administered to th e hope intervention group was created by Rustoen and Hanestad (1998), who develope d a nurse-led interv ention for hope. The intervention focused on eight tw o-hour sessions to streng then the nature of hope: believing in self, emotional reactions, relationships, active involvement, spirituality and faith, and acknowledgement that there is a future. Two we eks following completion of the intervention, all of the subjects completed the NHS, the Ferrans and Powers Quality
14 of Life Index and the CARES. This was completed again at six months following the intervention. Significant findings of the study included that thos e who were in the hope promotion group had much higher levels of hope th an the control or cancer information group two weeks following th e intervention. At six mont hs Rustoen, et al. (1998) readministered the scale and a ll groups had the same levels of hope. The dynamic nature of hope may require a hope in tervention as an ongoing proce ss rather than a one-time event. Summary Both hope and quality of lif e are multidimensional conc epts of importance to the cancer patient. Quality of life, as co nceptualized by McMilla n and Weitzner (1998) includes three domains of we ll-being: psychophysiological (a nxiety, pain, worry, anger, sleep, sex life, breathlessness, constipation and the concept of hope); fu nctional (ability to concentrate, social life of the patient and family, and th e ability to maintain a sense of independence); and social/spiri tual (support from family a nd friends, healthcare team, a relationship with God, and mean ing in life). The relationshi p of quality of life and hope in each of these domains is bor n out in research studies whic h explored levels of hope in relation to pain, functional ab ility, social support and God. Hope was identified as an inner power and was active in all subjects. Nursing interventions to increase hope reflected increasing levels of hope and quality of life in the nurse interv ention group in comparison to those in the co ntrol groups experiencing decreas es in quality of life.
15 Chapter Three Methods The relationship between quality of life and hope in the hosp ice cancer patient was evaluated using a non-experimental, correl ational design. This chapter discusses the setting, the sample, the instruments, th e procedures, and th e data analysis. Setting The setting for this study was Hernando-Pasco Hospice, located in two counties north of Tampa. The hospice has an average daily census of 650 patients. Thirty-five percent of the patients are ad mitted with a cancer diagnosis. Patients are cared for by this hospice in their home, nursi ng home, assisted living facility, foster home, and hospice house or hospice inpatient unit. Sample The sample size was determined using pow er analytic techniques. With alpha of .05 and power set at .80, a sample of 88 would have been need ed to reveal a moderate effect size. It would have been desirable to increase to 100 to account for those who withdrew from the study. The sample was a convenience sample of hospice cancer patients. The inclusion criteria were: stage IV can cer, home patient with a caregiver, alert, oriented, and aware of diagnosis and predicte d prognosis. The subjects were also able to
16 read and understand English. Exclusion crit eria included those who would experience respondent burden and those wi th uncontrolled symptoms, such as dyspnea and pain. Instruments This study used two instruments: The Hospice Quality of Life Index, and the Herth Hope Index. Verbal permission was gran ted for use of the Hospice Quality of Life Index in this study from McMi llan. Herth granted written pe rmission for the use of the Herth Hope Index (Appendix B). The Hospice Quality of Life Index The Hospice Quality of Life Index (HQLI) is a three-factor sc ale comprised of 28 items designed to capture the quality of life status of hospice patients with cancer (McMillan & Weitzner, 1998). Each item is rated on a 0 to 10 scale with items summed for a total score ranging from 0 to 280 (Appendix C). The subscales are psychophysiological, functional and social/spiritual well-being. Validity. Validity for the HQLI was evidenced by factor analysis that yielded 3 subscales. In addition, correlation with the Eastern Cooper ative Oncology Group Performance Status Rating re sulted in the expected relati onship (r = .26, p < .05). Finally, the response of healthy adu lts as compared to hospice cancer patients showed a significant difference. Reliability The Cronbach alpha for the total scale was r = .88, and the Cronbach alpha for each subscale was r = .84, supporting the reliability of the HQLI. The HQLI is reliable with strong internal c onsistency. The hospice patients were not subjected to testretest reliability due to the advanced illness of hospice pa tients and because the changes
17 in condition which hospice patients under go would make a test -retest impractical (McMillan & Weitzner, 1998). Herth Hope Index The Herth Hope Index (HHI) is a clin ical-setting adaptation of the Herth Hope Scale (HHS) (Herth, 1992). The HHS consists of 30 items that are related to the six dimensions of hope, which we re conceptualized by Dufault and MartocchioÂ’s Model of Hope (Dufault & Martocchio, 1985). Herth then combined the six dimensions into three subscales: cognitive-temporal; affective-behavioral; and, affiliative-contextual (Herth, 1992). The HHI is shortened from the HHS to a 12-item instrument for clinical applicability (Appendix D). The items in the HHI are in a Likert-format scale from 1 to 4, with 1 being strongly disagree and 4 being strongly agree. Th e HHI is divided into three subscales (as is the HHS). The total scores of the HHI coul d range from 12 to 48, with a higher score equating to a high er level of hope (Herth, 1992). Validity The face and content validity was secured thr ough a panel of experts (Herth, 1992). The construct va lidity of the HHI was eviden ced by factor analysis that yielded a significant loading of the HHI scale on one of the three original subscales of the Herth Hope Scale (HHS). Th e three subscales were tem porality and future, positive readiness and lastly, interconn ectedness. Further construct va lidation of the HHI included correlations of the HHI with th e HHS (r = 0.92), the Existential WellBeing Scale (r = 0.84) and the Nowotny Hope Scale (r = 0.81). Finally, th e HHI was correlated with the Hopelessness Scale for dive rgent validity (r = 0.73).
18 Reliability The HHI was tested with a conven ience sample of 172 ill adults. The alpha coefficient was 0.97 w ith a test-retest reliabili ty after two weeks of 0.91. Demographic Data Form The demographic data form (Appendix E) served as a guideline for the collection of information about each subj ect. The information included: years of education; age; race/ethnicity; religion and degree of partic ipation; diagnosis; length of time since diagnosis; length of time sinc e last chemotherapy or radi ation treatment; and a social support item asking Â“overall, in the past mont h, how satisfied have you been with support from others?Â” Data Collection This study involved several procedural steps. The firs t step was approval from Hernando-Pasco Hospice to conduct the study, followed by Institutional Review Board (IRB) approval from the Univ ersity of South Florida. Following approval, eligible subjects were identified for inclus ion through weekly team meeting participation by the researcher in which admitte d patients were reviewed by the hospice team. Once identified, potential subjects were approached regarding study participation. If the subject ag reed to participate, the study was explained, and the subject had the opportunity to ask que stions. A signed consent (Appen dix F) was obtained with a copy given to the subject. Follo wing signed consent to partic ipate, the Herth Hope Index, the Hospice Quality of Life Index and a de mographic data form were administered. Data Analysis The data analysis involved two steps. The first step was an analysis of demographic data using descrip tive statistics. The form is composed of interval data
19 except for nominal data items regarding r ace/ethnicity and religion. Step two involved answering the research questions: 1. What is the mean level of quality of life in hospice pati ents with cancer? 2. What is the mean level of hope in hospice patients with cancer? 3. Is there a significant positive relationship be tween quality of life and hope in hospice patients with cancer? After examining frequencies and descriptive da ta for the first two re search questions, the data were analyzed using a PearsonÂ’s corr elation to answer research question 3.
20 Chapter Four Results, Discussion and Conclusions This chapter presents the findings of th e study. Included in th is chapter are the study results with a discussi on of the results, conclusi ons, and recommendations for future research. Results Demographic Data The sample consisted of 31 patients ( 20 males and 11 females), ages ranging from 43 to 90 with a mean age of 70.2 (SD = 12.3). Years of education ranged from 7 to 22 years with a mean of 12.5 years. The majority of patients (n = 29) were white. All of the patients claimed a religious af filiation, with 8 Catholics a nd 23 Protestants. The mean level of involvement with religion indicated occasional religious involvement. The social support item, which asked about the patientÂ’s overall satisfaction w ith the care they had received from family and frien ds in the past month, was scored at a mean between satisfied and very satisfied. The types of cancer vari ed with lung cancer the mo st commonly reported. Other cancers reported commonly were breast esophageal, non-HodgkinsÂ’ lymphoma and colorectal (Table 1). The le ngth of time since chemotherapy or radiation ranged from 1 week to 60 months, with a me an of 6.37 months. Thirteen pa tients (41.9%) elected not to
21 be treated with chemotherapy or radiation. Th e range of pain res ponses was from 0 as no pain, to 10 as the worst pain. Th e mean pain intensity was 5.2. Table 1 Types of Cancer in Sample Cancer Diagnosis________________ n_____ Percentage Lung 8 25.8% Breast 4 12.9% Esophageal 3 9.7% Non-HodgkinsÂ’ Lymphoma 3 9.7% Colorectal 3 9.7% Prostate 1 3.2% Head and Neck 1 3.2% Pancreatic 1 3.2% Renal Cell 1 3.2% Bladder 1 3.2% Pharyngeal 1 3.2% Gastric 1 3.2% Brain 1 3.2% Liver 1 3.2% Ovarian 1 3.2% _________________________________________________________________
22 Research Objective One To answer research objective one, what is the mean level of quality of life in hospice patients with cancer, a mean scor e was calculated. The mean level of the HQLI scores was 207.3 (SD = 30.2), representing 74.9 % of the highest possible score of 280. The range of scores reported was 154 to 271. Research Objective Two To answer the second res earch objective, what is the mean level of hope in hospice patients with cancer, a mean scor e was computed. The mean level was 42.8 on the HHI scores, representing 89.3% of the highest possible sc ore of 48. The range of HHI scores reported by the subjects was 34 to 48. Research Objective Three To answer the third research objective, is there a significant positive relationship between quality of life and hope in hospice patients with cancer, the HQLI scores were correlated with the HHI scores using Pears onÂ’s correlation. The corr elation was weak to moderate, but significant (r = .356, p = .049). Hope Index and the Subsca les of the Hospice Quality of Life Index Further discovery of th e relationship between hope and quality of life was achieved by a correlation of HHI scores wi th the scores of the three HQLI subscales (Table 2). A statistically significant re lationship was found between psychophysiological well being and hope (r = .37, p = .040). Ther e was not a statisti cally significant relationship between functional well being and hope (r = .07, p = .730). The strongest relationship, at a statistically significant level, was the corre lation between social/spiritual well-being and the HHI sc ores (r = .51, p = .003).
23 Table 2 Correlations Between Quality of L ife Subscales and Hope Index Scores Functional Social/ Spiritual PsychoPhysiological HQLI Total Hope Index r = .07 p = .730 r = .51 p = .003 r = .37 p = .040 r = .36 p = .049 Hope Index Scores, Wors t Pain and Pain Relief Within the psychophysiological domain of the HQLI is a question about how completely pain was relieved, on a scale of 1 to 10. The mean level of pain relief was 9.2 (SD = 2.6) out of a complete pain relief total of 10. Ther e was an additional item which asked how bad pain was at its worst. The me an level of worst pain was 5.2 (SD = 2.7). Each of these was correlated with the HHI scores (Table 3). The item regarding the level of pain relief correlated with the HHI score at a statistically significant, moderate level (p = .37, p = .043). The item rega rding the worst pain experi enced negatively correlated with the HHI at a low, st atistically insignificant le vel. (r = -.27, p = .140). Table 3 Correlations Between Hope Inde x, Worst Pain and Pain Relief Worst Pain Pain Relieved__________ Hope Score r .27, p = .140 r = .37, p = .043 _____________________________________________________________________
24 Discussion After IRB approval from the University of South Florida, data collection began in August, 2004 and continued through December. During a two-month time period (August, 2004 through October, 20 04) four hurricanes affected the communities in which this study took place. Preparations and re covery from each storm may have created unique circumstances that affected accrua l into the study. Additionally, screening by patient caregivers who did not want patients subjected to questions about pain, anger, sadness, loneliness or the meaningfulness of life created barriers to accrual. Some caregivers offered to answer the questions fo r the patient in order to participate. The investigator declined these of fers. Two patients who had agre ed to the study then became too debilitated to participate in the study, a nd two patients died between giving telephone consent and the investigatorÂ’s arrival for the scheduled interview. Several potential patients did not meet the inclusion criteria of being able to speak a nd understand the English language. The difficulties in accruing hospice patients along with the na tural phenomena of inclement weather, facilitated new goals fo r accrual. Though the init ial goal for accrual was 88 patients, the PearsonÂ’s correlation is a robust method, and sufficient power was obtained with a sample of 31 to achieve a st atistically significant correlation between the hope and quality of life scores. Demographic Data The sample consisted of a convenience sample of 31 hos pice patents with cancer who were invited to take part in the study. There were le ss women (35%) in the sample than men (65%) which is inconsistent with the NHPCO statistics reporting 54 percent
25 men and 46 percent wome n. This may be accounted for by the exclusion of nursing home patients from the study. The patients were alert a nd oriented, and aware of th eir diagnosis and terminal prognosis. The patients also spok e, read and wrote in English. After an explanation of the study and an opportunity for part icipants to ask questions, in formed consent was obtained (Appendix F). Several patients requested that th e investigator read the questions and mark their responses due to the patientÂ’s poor vision, hand tremors, or paresthesias secondary to brain metastasis These patients were given a copy of the instruments to look at while the questions were read. Limitations to this study are noted. Firs t, this was a conv enience sample of hospice patients stable enough in their disease process to participate and agreeable to answering questions. The sample was mostly Caucasian, Christian and elderly. This study does not include those patients whose caregivers screened the investigatorÂ’s questions and would not allow the patient to be as ked about sadness, loneliness, anger or meaningfulness of life. This suggests that those who pa rticipated may have always maintained high levels of hop e in the face of difficultie s and that th ey, and their caregivers were prepared to disc uss difficult issues at the end of life due to a consistent level of hopefulness in the face of difficulties. This also su ggests that those patients who were not prepared to discuss end of life issu es and who were generally less hopeful were the patients who did not agree to participat e in the study, biasing results. In addition, these patients were able to interact with the investigator in a meaningful way and had caregivers. Again, this study is missing data from those patien ts who could not interact or who did not have caregivers.
26 Research Objective One The total quality of life score was determined through the HQLI, a self-report 28-item questionnaire. Subjects had a mean score of 207.3, which represents 74% of the highest score of 280. It is noted that these patients were able to interact with the investigator in a meaningful way and were pain and symptom free dur ing the time of the interview. Further, caregivers blocked some patients from part icipating. It is also possible that the hospice was providing excellent end of life care. All of these circumstances could have influenced the high levels of qual ity of life in the patients interviewed. Research Objective Two The total hope score wa s determined through the HHI a self-report 12-item questionnaire. The mean of the total scores represents that the subjects had a score of 89.3% of the highest score of 48, reflective of a high level of hope which is contrary to what may be expected when one is faced wi th a life-limiting c ondition. The high scores support the theory of Dufault and Martocchio Â’s (1985) model of hop e, which posits that hope is a constant trait which exists on two levels, one leve l being particularized hopes and another being generalized hopes. Particularized hopes ar e specific in regards to the specific time frames and detail s of the attainment of a fu ture good. Generalized hope is not encumbered by the details of specific goals or timeframes, but is a trait which is an inner resource and is not out side of the person to be given or taken away by the biophysical model of medicineÂ’s ability to cu re or not. Dufault and MartocchioÂ’s (1985) model relates that when one's sp ecific or particularized hopes (i.e. cure) are not attained, then generalized hopes will con tinue which allows the person to cope with the stress of a life-limiting illness. However, ot hers have considered the hope of the terminally ill to be
27 an indication of denial, whic h is considered a coping mechanism for people experiencing the losses associated with a te rminal cancer diagnosis (Rusto en, et al., 1998). It must be noted here that the patients for this study were screened by the in vestigator for their awareness of their diagnosis a nd prognosis and all clearly stat ed cognizance of their lifelimiting disease process. Research Objective Three The correlation between the scores of the HQLI and HHI was weak to moderate, but significant. This indicates that hope is a concept separa te from quality of life, though related at a statistically significant level. The quality of life model constructed by McMillan & Weitzner (1998) included hope as a phenomenon within the psychophysiological domai n, rather than as a separate item. However, Rustoen, et al. (1998) measured hope as a comp letely separate concept. In order to identify the domain within the HQLI subscale which is correlated at the strongest, most significant level with the HHI total scores, each of the three subsca les scores within the HQLI (Table 2) were correlated with the HHI scores and further evaluated for significance. Hope Index and the Subsca les of the Hospice Quality of Life Index When the subscale of HQLI social/spiritual scores was correlated with the HHI, there was a statistically meaningful correlat ion at a moderate leve l (r = .510, p = .003). The items within the social/spiritual subscale are: support from fam ily and friends, physical contact with those on e cares about, improved sens e of well-being related to oneÂ’s surroundings, physical care received, em otional and spiritual support from oneÂ’s healthcare team, identifying that oneÂ’s life has meaning and satisfaction with oneÂ’s relationship with God. Though this study did not assess whether each patient had been
28 exposed to social/spiritual in terventions, the high hope scores in this study could be explained by the focus of hospi ce care on the physical, spirit ual, social a nd psychological well-being of the patient to which each st udy participant could have been exposed. An example of how hope and the social/spiritual items are interrelated occurred during data collection. While a patient was answering the it ems on the Herth Hope Index that measured the level of deep inner strength and level of faith that gave comfort, the patient discovered that he did not perceive that he had an inner strength nor a faith that gave him comfort. This realization caused him to notify his hosp ice clergy person for counsel. The following day this patient was bap tized into his faith. Th e need for a deeper spiritual experience, reconciliation with G od, and the experience of inner peace, is a significant source of hope in those with a life-limiting dis ease (Ballard et al., 1992; Herth, 1990). Hope Index Scores, Wors t Pain and Pain Relief Within the subscale of psyc hophysiological well being, the item of how well pain is relieved was correlat ed with hope at a stat istically significant leve l, though the level of worst pain was not meaningfully related to levels of hope (T able 3), suggesting that the relief of pain has a greater influence on hope th an the level of pain experienced. This is related to the findings of Li n, Lai and Ward (2003a) who fou nd that levels of pain were not as significant as how the pain interfered with activ ities of daily living. The treatment of pain as well as the reassurance receive d from healthcare providers who acknowledge and treat pain may be more mean ingful in regards to levels of hope than the pain itself. One of the key edicts of hospice is the unrelenting endeavor to keep the patient pain and symptom free within an interdisciplinary a pproach. This framework manages distress in
29 the physical domain, as well as psychological, social a nd spiritual domains. This intensive management of pain may provide another explanation for the high levels of hope in the hospice pati ents who were studied. Conclusions Interventions designed by nurses to pr omote hope reflect th at nurses influence levels of hope (Herth, 2000; Rustoen, et al., 1998). It may be concluded from the results of this study that admission in to hospice does not equal a lo ss of hope. Rather, instead of seeking hope in the form of treatments for cure, hope ma y be discovered through the quality of life items which in clude relationships with others and God, realization of the meaning of oneÂ’s life and care which provides pain relief. Further, the quality of life scores were also high in th e study participants, and it app ears that the most hopeful patients also have the best quality of life. Recommendations for Future Research Although this study had some important fi ndings, further research is needed. A study that compares patients who decline hospi ce admission with thos e who elect hospice admission could provide more information regarding the eff ect of hospice on quality of life and hope. In addition, a re peated measures study could be designed to follow hospice patients weekly to determine the continuum of levels of hope from hospice admission until death. Finally, an interventional study focu sing on the spiritual and social needs of the patient as well as pain and symptom management coul d be implemented in a hospital setting. The intervention would include a standardized care pl an designed especially to provide guidelines for nu rses who are not trained in end of life care. The purpose of this study would be to find out if pa tients and families of those w ho die in a hospital benefit
30 by experiencing hope from domains outside of a one-dimensional biophysical model of medical care.
31 References American Cancer Society (2004) Cancer facts and figures, 20 04. Retrieved on June 20, 2004 from: http://www.cancer.org/downloa ds/STT/CAFF_finalPWSecured.pdf Ballard, A., Green, T., McCaa, A., & Logsdon, M.C. (1997). A comparison of the level of hope in patients with newl y diagnosed and recurrent cancer. Oncology Nursing Forum, 24 899-904. Benner, B. (1985). Quality of life: a phenomenological perspective on explanation, prediction, and understanding in nursing science. Advances in Nursing Science, 8, 1-14. Cella, D. F. (1995). Measuring quality of life in palliative care. Seminars in Oncology, 22 (3), 73-81. Chen, M. L. (2003). Pain and hope in pati ents with cancer: A role for cognition. Cancer Nursing, 26 61-67. Retrieved January 18, 2004, from OVID Database. Clark, D. (1999). Â‘Total painÂ’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Social Science & Medicine, 49 727-736. Retrieved February 20, 2004 from Elsevier database. Dufault, K., & Martocchio, B.C. Sym posium on compassionat e care and the dying experience. Hope: its sp heres and dimensions. Nursing Clinic of North America, 20, 379-391. Ebright, P.R., & Lyon, B. (2002). Understandi ng hope and factors th at enhance hope in women with breast cancer. Oncology Nursing Forum, 29 561-568. Egan, K.A., & Labyak, M.J. (2001). Hospice car e: A model for quality end-of-life care. In B.R. Ferrell & N. Coyle (Ed.), Textbook of Palliative Nursing (7-26). New York: Oxford University Press. Eliott, J. & Olver, I. (2002). The discursive proper ties of Â“hopeÂ”: A qua litative analysis of cancer patientsÂ’ speech. Qualitative Health Research, 12 173-193. Ersek, M. (2001). The meaning of hope in th e dying. In B.R. Ferre ll & N. Coyle (Ed.), Textbook of Palliative Nursing (339-351). New York: Oxford University Press. Farran, C.J., Herth, K.A. & Popovich, J.M. (1995). Hope and Hopelessness: Critical clinical constructs. Thousand Oaks, CA: Sage.
32 Ferrell, B.R. (1995). The impact of pain on quality of life. Nursing Clinic of North America, 30 609-616. Hall, B.A. (1990). The struggle of the diagnosed terminally ill person to maintain hope. Nursing Science Quarterly, 3 177-184. Herth, K. (1989). The relations hip between level of hope an d level of coping response and other variables in patients with cancer. Oncology Nursing Forum, 16 67-72. Herth, K. (1990). Fostering hope in terminally ill people. Journal of Advanced Nursing, 15 1250-1259. Herth, K. (1992). An abbreviated instrume nt to measure hope: development and psychometric evaluation. Journal of Advanced Nursing 17 1251-1259. Herth, K. (1993). Hope in ol der adults in community and institutional settings. Issues in Mental Health Nursing, 14 139-156. Herth, K. (2000). Enhancing hope in people with a first recurrence of cancer. Journal of Advance Nursing, 32 1431-1441. Retrieved January 18, 2004 from Blackwell Science Database. Lin, C. C., Lai, Y. L., & Wa rd, S. E. (2003a). Effect of cancer pain on performance status, mood states, and level of hope among Taiwanese cancer patients. Journal of Pain and Symptom Management, 25 29-37. Retrieved January 18, 2004, from OVID Database. Lin, C. C., Tsai, H. F., Chiou, J. F., Lai, Y. H., Koo, C. C., & Tsau, T. S. (2003b). Changes in levels of hope after diagnost ic disclosure among Taiwanese patients with cancer. Cancer Nursing, 26, 155-160. Retrieved January 18, 2004, from OVID Database. McMillan, S.C., & Weitzner, M. (1998). Quality of life in cancer patients. Cancer Practice, 6, 282-288. National Hospice and Palliativ e Care Organization (2003). What is hospice and palliative care? Retrieved on June 20, 2004 from: http://www.nhpco.org/i4a/pages/index.cfm?pageid=3281 National Hospice and Palliative Care Or ganization (2005). NHPCO facts and figures. Retrieved on September 16, 2005 from: http://www.nhpco.org/files/pub lic/Hospice_Facts_110104.pdf Nekolaichuk C.L., & Bruera, E. (1998). On the nature of hope in palliative care. Journal of Palliative Care, 14 36-42.
33 OÂ’Connor, A.P., Wicker, C.A., & Germino, B.B. (1990). Understa nding the cancer patientÂ’s search for meaning. Cancer Nursing, 13 167-175. Raleigh, E.D. (1992). Sources of hope in chronic illness. Oncology Nursing Forum, 19 443-448. Rustoen, T. & Wiklund, I. (2000). Hope in newly diagnosed patients with cancer. Cancer Nursing, 23, 214-219. Retrieved on January 23, 2004 from Ovid database. Rustoen, T., Wiklund, I., Hanestad, B. R., Moum, T. (1998). Nursing intervention to increase hope and qu ality of life in newly diagnosed cancer patients. Cancer Nursing, 21, 235-245. Retrieved January 18, 2004 from OVID Database. Rustoen, T., Hanestad, B.R. (1998). Nursing intervention to increase hope in cancer patients. Journal of Clinical Nursing, 7 19-27. Retrieved on January 23, 2004 from Ovid database.
35 Appendix A: Dufault and Martocchio (1985) Hope Model Appendix B PERMISSION TO USE HERTH HOPE INDEX Affective: Confidence about goals Affiliative Relationships (others, pets and God Temporal: Goals in relation to past present and future Behavioral Actions taken to achieve goals Context Of loss or potential loss Cognitive: Understanding of reality and resources available E GENERALIZED HOPE SPECIFIC HOPE
36 Appendix B: Permission fo r use of Herth Hope Index From email@example.com Sat Mar 13 12:06:22 2004 Cynthia, I appreciate your interest in hope and in the Herth Hope Index. I have attached a copy of both the Herth Hope Scale and the Herth Hope Index along with scoring instructions. Both scales are currently being used in research studies by a number of investigators primarily with adults. I have enclosed several reference lists I have compiled on hope. You have my permission to use either the Herth Hope Index or the Herth Hope Scale in your proposed research project. If you decide to use either of my tools in your research study, I would like to request that you send me an abstract of your completed research and any psychometrics pertaining to my scale. There are no charges connected with the tools. I am excited about your proposed study exploring the correlations between hope and quality of life in hospice cancer patients and look forward to hearing more about your work. If I can be of any further assistance, please do not hesitate to contact me. Dr. Kaye Herth Kaye A. Herth, Ph.D., R.N., F.A.A.N. Dean, College of Allied Health and Nursing 124 Myers Fieldhouse Minnesota State University, Mankato Phone: 507-389-6315 Fax: 507-389-6447 firstname.lastname@example.org -----Original Message----From: Cynthia Brown [mailto:email@example.com] Sent: Saturday, March 13, 2004 9:45 AM To: Herth, Kaye A Subject: Herth Hope Index Dear Dr. Herth, I am writing to ask for your permission to use the Herth Hope Index in my research project which is part of my graduate nursing program at USF. I am researching correlations between hope and quality of life in hospice cancer patients. Thank-you Cindy Brown Graduate Student Oncology Nurse Practitioner Program University of South Florida Tampa, FL
37 Appendix C: Hospice Qualit y of Life Index-Revised 1998 HOSPICE QUALITY OF LIFE INDEX-REVISED 1998 The questions listed below will ask about how you are feeling at the moment and how your illness has affe cted you. Please circle the number on the line under each of the questions, that best shows what is happening to you at the present time. 1) How tired do you feel? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 2) How well do you sleep? not at all 0 1 2 3 4 5 6 7 8 9 10 very well 3) How breathless do you feel? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 4) How well do you eat? poorly 0 1 2 3 4 5 6 7 8 9 10 very well 5) How constipated are you? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 6) How nauseated/sick do you feel? extremely 0 1 2 3 4 5 6 7 8 9 10 not at all 7) For Men: How masculine do you feel? For Women: How feminine do you feel? not at all 0 1 2 3 4 5 6 7 8 9 10 extremely
38 Appendix C: (Continued) 8) Do you have enough physical contact with those you care about? (Touching, holding hands, hugging or other physical contact) none 0 1 2 3 4 5 6 7 8 9 10 a great deal 9) How sad do you feel? very sad 0 1 2 3 4 5 6 7 8 9 10 not at all 10) Do you believe that each day can still hold some good? not at all 0 1 2 3 4 5 6 7 8 9 10 believe strongly 11) How worried do you feel about what is happening to you? very worried 0 1 2 3 4 5 6 7 8 9 10 not at all 12) How worried do you feel a bout your family and friends? very worried 0 1 2 3 4 5 6 7 8 9 10 not at all 13) How angry do you feel about what is happening to you? very angry 0 1 2 3 4 5 6 7 8 9 10 not at all 14) How lonely do you feel? very lonely 0 1 2 3 4 5 6 7 8 9 10 not at all 15) How satisfied do you feel with y our ability to concentrate on things? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied
39 Appendix C (Continued) 16) How meaningful is your life? not at all very meaningful 0 1 2 3 4 5 6 7 8 9 10 meaningful 17) How much enjoyable activity do you have? none 0 1 2 3 4 5 6 7 8 9 10 a great deal 18) How satisfied do you feel about the amount of usual daily activi ties you are able to do? (job, housework, chores, child care etc.) very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 19) How satisfied are you with your level of independence? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 20) How satisfied are you with the s upport you receive from family and friends? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 21) How satisfied are you with your social life? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 22) How satisfied are you with the p hysical care that you are receiving? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied
40 Appendix C: (Continued) 23) How satisfied are you w ith the emotional support you get from your health care team? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 24) How satisfied are you with your relati onship with God (however you define that relationship)? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 25) How satisfied are you with the spiritua l support you get from your health care team? very very dissatisfied 0 1 2 3 4 5 6 7 8 9 10 satisfied 26) Do your surroundings help impr ove your sense of well-being? not at all 0 1 2 3 4 5 6 7 8 9 10 very much 27) How much do you worry about your living expe nses/finances? a great deal 0 1 2 3 4 5 6 7 8 9 10 not at all 28) If you experience pain, how completely is it relieved? no relief 0 1 2 3 4 5 6 7 8 9 10 complete relief How bad is your pain when it is at its worst? no pain 0 1 2 3 4 5 6 7 8 9 10 worst possible
41 Appendix D: Herth Hope Index HERTH HOPE INDEX Study No.____ Listed below are a number of statements. Read each statement and place an [X] in the box that describes how much you agree with that statement right now Strongly Disagree Disagree Agree Strongly Agree 1. I have a positive outlook toward life. 2. I have short and/or long range goals. 3. I feel all alone. 4. I can see possibilities in the midst of difficulties. 5. I have a faith that gives me comfort. 6. I feel scared about my future. 7. I can recall happy/joyful times. 8. I have deep inner strength. 9. I am able to give and receive caring/love. 10. I have a sense of direction. 11. I believe that each day has potential. 12. I feel my life has value and worth. 1989 Kaye Herth 1999 items 2 & 4 reworded
42 Appendix E: Demographic Data Collection Form DEMOGRAPHIC DATA COLLECTION FORM PLEASE DO NOT INCLUDE YOUR NAME Years of education: Age: Race/ethnicity: Religion: Degree of participation in re ligion (circle number) Very Occasionally Seldom Never Involved Involved Involved Invol ved Involved (1) (2) (3) (4) (5) Diagnosis: Length of time since diagnosis: Length of time since last chem otherapy or radiation treatment: Overall, in the past month, how satisfied have you been with support from others?Â” (circle number) Very Satisfied Satisfied Not Very Sa tisfied Extremely Unsatisfied (1) (2) (3) (4)
43 Appendix F: Consent Fo rm (with IRB stamp)
44 Appendix F: Consent Form (Continued)