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The relationship between nurses' anxiety and attitude related to pediatric hospice

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Title:
The relationship between nurses' anxiety and attitude related to pediatric hospice
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English
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Hoover, Teresa Lyn
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University of South Florida
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Anxiety
Attitude
Nurses
Pediatric
Hospice
Dissertations, Academic -- Nursing -- Doctoral or Masters -- USF
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ABSTRACT: To lose a child is a profoundly emotional experience. even if it is not your own, the experience involves deeply held beliefs about death, the quality of death, ethics, and perhaps personal experience. Left unexplored, these beliefs and the anxiety they may produce, can become barriers to providing quality end-of-life care for children with life limiting conditions and their families. The purpose of this study was to explore the relationship between hospice nurses' attitudes toward providing pediatric hospice care and the level of anxiety they may experience related to pediatric hospice care. A self administered questionnaire was completed by 30 hospice nurses. the 20-item state anxiety questionnaire from the state-trait anxiety inventory was used to rate the nurses' level of anxiety related to pediatric hospice care. The nurses' attitudes toward pediatric hospice care were measured using a modified version of attitudes about care at the end of life among clinicians scale . State-anxiety refers to the reaction or process taking place at a given time and the level of intensity related to the situation. the possible range of scores was 20-80 with the higher score indicating greater levels of anxiety. The actual range was 20-65, with a mean of 35.9 (sd = 12.1). The possible range of scores for the total attitude score was 12-60, with a higher score indicating a more positive attitude toward pediatric hospice. The total attitude score had a mean of 31.0 (SD=5.2). Attitude was further divided into three attitude subscales: comfort in discussing pediatric hospice with parents, perceived benefit of pediatric hospice and attitude toward physician involvement in pediatric hospice. The possible range for each subscale was 4-20, again with higher scores indicating a positive attitude. The comfort subscale had a mean of 8.3 (SD=2.8). The benefit subscale had a mean of 9.3 (SD=2.5). The physician involvement subscale had a mean of 13.7 (SD=2.1). The resultssuggeste d the presence of some amount of anxiety experienced with pediatric hospice. The total score on the attitude portion of the survey indicated a generally positive attitude toward pediatric hospice in general. Additionally, the subscales of comfort in discussing pediatric hospice, the benefit of pediatric hospice and the attitude toward physician involvement demonstrated a positive attitude as well. While there was no significant relationship found between the total attitude score and anxiety or between the comfort and benefit subscales, there was asignificant relationship (p < .01) found between the physician subscale and anxiety. This may indicate a desire for more physician involvement or the belief that physician involvement decreases anxiety. This study revealed self-knowledge and pediatric specific hospice training as areas for future research and education.
Thesis:
Thesis (M.A.)--University of South Florida, 2006.
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Includes bibliographical references.
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by Teresa Lyn Hoover.
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Document formatted into pages; contains 38 pages.

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The Relationship Between Nurses' Anxiety And Attitude Related To Pediatric Hospice by Teresa Lyn Hoover 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 S. Mcmillan, Ph.D. Lois Gonzalez, Ph.D. S. Joan Gregory, Ph.D. Date of Approval: July 19, 2006 Keywords: anxiety, attitude, nurses, pediatric, hospice Copyright 2006 Teresa Hoover

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i Table of Contents List of Tables iii Abstract iv Chapter I Introduction 1 Statement of the Problem 2 Purpose 3 Research Questions 3 Definition of Terms 3 Significance to Nursing 4 Chapter II Review of Literature 5 Case Studies 5 Quantitative Research 9 Summary 14 Chapter III Methods 15 Sample 15 Instruments 15 State-Trait Anxiety Inventory 15 Attitudes About Care at the End of Life Among Clinicians 16 Demographic Form 16 Procedures 17 Data Analysis 17 Chapter IV Results, Discussion and Conclusion 18 Results 18 Sample 18 Anxiety 18 Attitude 20 Relationship Between Attitude and Anxiety 20 Discussion 21 Sample 21 Anxiety 22 Attitude 23

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ii Relationship Between Attitude and Anxiety 23 Conclusion 25 Future Research 25 References 27 Appendices 29 Appendix A: Letter of Permission to Use the STAI 30 Appendix B: Letter of Permission to Use the Attitude Scale 31 Appendix C: State Trait Anxiety Inventory 32 Appendix D: Attitudes About Care at the End of Life Scale 33 Appendix E: Demographics Form 35 Appendix F: Letter of A pproval From Lifepath Hospice 36 Appendix G: Letter of Approval From USF IRB 37

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iii List of Tables Table 1. Age and Gender of Sample 18 Table 2. Description of Sample Demographics 19 Table3. Attitude and Anxiety Scores 21 Table 4. Attitude and Anxiety Correlations 21

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iv The Relationship Between Nurses’ Attitude and Anxiety Related to Pediatric Hospice Teresa Hoover ABSTRACT To lose a child is a profo undly emotional experience. Even if it is not your own, the experience involves deeply held beliefs about death, the quality of death, ethics, and perhaps personal experience. Left unexplore d, these beliefs and the anxiety they may produce, can become barriers to providing qua lity end-of-life care for children with life limiting conditions and their families. The purpose of this study was to explore the relationship between hospice nur ses’ attitudes toward provi ding pediatric hospice care and the level of anxiety they may experience related to pediatric hospice care. A selfadministered questionnaire was complete d by 30 hospice nurses. The 20-item state anxiety questionnaire from the St ate-Trait Anxiety Inventory wa s used to rate the nurses’ level of anxiety related to pediatric hospice care. The nurses’ attit udes toward pediatric hospice care were measured using a modified version of Attitudes A bout Care at the End of Life Among Clinicians Scale. State-anxi ety refers to the reac tion or process taking place at a given time and the level of intensit y related to the situa tion. The possible range of scores was 20-80 with the higher score indi cating greater levels of anxiety. The actual range was 20-65, with a mean of 35.9 (SD= 12.1). The possible range of scores for the total attitude score was 1260, with a higher score indicati ng a more positive attitude

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v toward pediatric hospice. The total attitude score had a mean of 31.0 (SD=5.2). Attitude was further divided into three attitude subs cales: comfort in discus sing pediatric hospice with parents, perceived benefit of pediat ric hospice and attitude toward physician involvement in pediatric hospice. The possi ble range for each subscale was 4-20, again with higher scores indicating a positive attitude. The comf ort subscale had a mean of 8.3 (SD=2.8). The benefit subscale had a mean of 9.3 (SD=2.5).The physician involvement subscale had a mean of 13.7 (SD=2.1). The results suggested th e presence of some amount of anxiety experienced with pediatric hospice. The total sc ore on the attitude portion of the survey indicated a generally pos itive attitude toward pediatric hospice in general. Additionally, the subscales of comfort in discussing pediatric hospice, the benefit of pediatric hospice and the attitude towa rd physician involvement demonstrated a positive attitude as well. While there was no significant relations hip found between the total attitude score a nd anxiety or between the comfort a nd benefit subscales, there was a significant relationship ( p <.01) found between the physicia n subscale and anxiety. This may indicate a desire for more physician involvement or the belief that physician involvement decreases anxiety. This study revealed self-knowl edge and pediatric specific hospice training as areas for fu ture research and education.

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1 Chapter I Introduction A report from the Institute of Medicine (2003), When Children Die states that approximately 55,000 children up to age 19 die in this country annually. However, less than 1% of the children who need hospi ce care receive it (Children's Hospice International, 2003). A study conducted by Child ren’s Medical Services of Florida in 1999 (as cited by Children’s Hospi ce International, 2005) stated that 50% of the hospice programs in Florida reported that the needs of terminally ill children were not addressed to their satisfaction. At that time, only 18 Florida hospice programs of the 36 surveyed provided a full hospice program for children. Nationally, on any given day, approximately 8,600 children could benef it from hospice care (Rushton, 2004). It is unclear why the needs of termina lly ill children are not achieved more adequately. In the researcher’s clinical experience, the comm only stated reasons for lack of pediatric hospice are: economic s, lack of a pediatric hospice model, parents’ beliefs about hospice care, and nurses’ attitudes to ward providing hospice ca re to children. The Children’s Hospice International Program for All-Inclusive care for Children and Their Families (CHI PACC) is beginning to address both the economic issues and the need for a pediatric model of end-of-life care. The beli efs of families as well as nurses’ attitudes can be changed through education. For hospice nurses to educate patients or th eir families, they must first educate themselves on the topic at hand. This educat ion begins with identifying beliefs and attitudes regarding hospice care for children as well as any anxiety related to the hospice care experience. Children’s Cancer Center in Tampa Florida holds a support group for parent’s who have recently lost their children to cancer. During these meetings the

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2 parents often share their hospice experiences with each other. Some shared that they were without hospice care altogether, others stated that their hospice experience was marred by the hospice nurses’ poor attitude, lack of compassion, or emotional breakdown, and thankfully a few told of the supportive comp assionate care they received from a hospice nurse. Clearly, the needs of the parents and thei r terminally ill children in this particular setting were not met. Andersen, Seeharan, and Toce (2004) noted that most health care providers are not sufficiently trained to deal with death in the pediatric populati on. Nurses are trained to perform the tasks required of care regime ns and how to operate medical devices, but little if any training involves nurses sorting out their persona l beliefs and their attitudes toward death, particularly the death of a child. Many emotions come into play when nurses are faced with the potential death of a child. A nurses’ inability to deal with those emotions might give the appearance of poor attitude or a lack of compassion. A nurse might become overwhelmed by those unchecked emotions and fail to support the patient and the patient’s family. The anxiety produ ced when these factors are combined can become a barrier to providi ng pediatric hospice care. Statement of the Problem To lose a child is a prof oundly emotional experience. Ev en if it is not your own, the experience involves deeply held values about death, the quality of death, ethics, and perhaps personal experience. Left unexplore d, these beliefs and at titudes can become barriers to providing quality e nd-of-life care for children w ith life limiting conditions and their families. If the nurses’ attitudes a nd beliefs are negative the nurse may also experience anxiety. There are several areas of concern related to providing qua lity end-of-life care for children. Economic policies and appropriate m odels of care are not enough in and of themselves to bring about change. The correct model and the funds to support it are of little use if there are too few trained hos pice nurses to provide the needed care. A

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3 conscious effort must be made to change th e attitudes and beliefs of nurses who care for terminally ill children (Rushton, 2004). That tr ansformation begins with research into the underlying attitudes and anxieties that effect hospice nurses when faced with the care of a dying child. Purpose The purpose of this study was to identif y the relationship between hospice nurses’ attitude toward providing pedi atric hospice care and the leve l of anxiety they experienced related to pediatric hospice care. Research Questions 1. What are the attitudes of nurse s toward pediatric hospice care? 2. What is the level of anxiety of nurses providing pediatric hospice care? 3. Is there a significant relationship between at titude toward pediatric hospice care and anxiety in nurses caring fo r pediatric hospice patients? Definition of Terms The following questions guided this study: 1. Pediatric Hospice care A philosophy of car e, which addresses the physical, social, emotional, and spiritual needs of childr en and adolescents with life-threatening conditions and their families. (Child ren’s Hospice International, 2005) 2. Palliative care Intervention that focuses primarily on reduction or abatement of the physical and psychological symptoms of terminal illness. (Children’s Hospice International, 2005) 3. End-of-life (EOL) care Refers explicitly to the final weeks of life when death is imminent. (Ferrell & Coyle, 2002) 4. State Anxiety – Refers to a transitory emotional state characterized by subjective feelings of tension that may vary in intensity over time (Spielberger, 1983) 5. Attitude – behavior based on conscious or unconscious views developed through cumulative experience that influences behavior (Cramer, 2003)

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4 Significance to Nursing The purpose of this study was to explore the nature of the hos pice nurses’ attitudes toward hospice care for children and the anxiet y experienced when aske d to participate in pediatric hospice care. To provide quality care for dying children and their families requires a personalization of car e and an attentiveness to patient and family values, wishes and cultural preferences ; the art of nursing requires one to ask, listen, and respond (Feudtner, 2004). In order for hospice nurses to be attentive, to listen and to respond appropriately, they must first overcome any em otional barriers they might have including a less than positive attitude toward pediatri c hospice or excessive anxiety. Identifying nurses’ attitudes toward pediatric hospice will provide an additional focus for hospice nurse education and training. Determining th e level of anxiety experienced by nurses providing hospice care to children will be he lpful to educators in planning appropriate training for this population of nurses. This knowledge will assist in supporting the emotional health of the hospice nurses, allo wing them to identify and address potential areas of anxiety and stress.

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5 Chapter II Review of Literature This chapter reviews and summarizes some of the current em pirical literature on the attitudes and perceptions of healthcare providers regard ing pediatric hospice care. Due to the limited published research involvi ng pediatric hospice care this review includes articles on the related subject of att itudes toward adult hospi ce care. This review also contains findings regarding health care professional’s anxieties related to pediatric hospice care. Research on this topic and hospi ce care in general is primarily qualitative in nature, and includes descriptive studies, case st udies, and scholarly non-research articles. The quantitative studies incorporate multiple variables; however for the purpose of this review only the findings related to anxiety and attitude are presented. Case Studies Rushton (2005) presents two case studies comparing two very different treatment models. The first model is perhaps the most common, with a focus on the disease and a cure at any cost attitude. The second model takes a more holistic view of the patient, treating the patient as a whole person rather than individual systems or symptoms. The first case study involved an elev en-year-old boy, Jason, who was diagnosed with acute myelogenous leukemia (AML). He was treated first with chemotherapy and after a period of remission, he relapsed. The treatment team discussed options for further intervention with the family as well as the likelihood of su rvival. It was decided that Jason would undergo bone marrow transpla nt (BMT). Jason suffered several lifethreatening complications and each time aggres sive therapies were performed to prolong his life. Palliative care and hos pice were not mentioned to the family. From the time of the first complication until his death Jason wa s ventilator dependant heavily sedated and

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6 unable to communicate. He died in the PICU and the family was distraught because they did not have an opportunity to say goodbye. The second case study involved a twelve-yea r-old girl, Melinda, also diagnosed with AML. Melinda’s treatment however was w ithin an integrated holistic model of care including palliative care from the time of diagnosis. Th e palliative care team talked with the family and Melinda about the usual course of the disease, treatment options, the goals for treatment, symptom management, and pa in management. The team provided physical, emotional, and spiritual support throughout the course of her illness. Like Jason, Melinda achieved remission after chemotherapy and late r relapsed. They too made a decision to undergo BMT. The palliative care team again talk ed with the family and patient; this time regarding what matters most in Melinda’s life according to both Melinda and her parents, their fears, and regarding at what point might the burden of treatment become too great. Before starting the transplant Melinda and her family made a video and some special mementos. Following the transplant Melinda developed graft-versus-host disease and despite aggressive support she continued to deteriorate. Th e team and the family later agreed that the quality of Melinda’s remaining time took precedence over further treatment. The treating team weaned Melinda from sedation and removed her from ventilation. Melinda was able to interact with her family briefly and then died peacefully with her family around her. Comparing these two cases clearly demonstrates the benefits of a holistic palliative care approach for the patient a nd the patient’s family. Rushton (2005) also describes the nursing attitudes needed to provide quality care at the e nd of a child’s life and the foundation of that care requiring att unement and presence. According to Rushton, attunement is based on self-awareness, which begins with understanding the influence of one’s experiences and responses. She descri bed presence as requiring the healthcare professional to deepen self-knowledge in orde r to let go of the desire to control the uncontrollable. Attitudes are developed thr ough experiences and as responses to those

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7 experiences. Clearly recognizing and addressing those attitudes is part of cultivating selfawareness. It would seem to follow that an increased self-awa reness would produce a more positive attitude and thereby decrease anxiety. Rushton considers the challenge to be making peace with conflict, not elimin ating it and views the challenge as an opportunity to change. In another case study, Rushton (2004) a ddressed attitudes and beliefs surrounding the ethical issues of pediatric palliative care. This case is about David who was born prematurely at 24 weeks gestation and ove r the course of his 30-month life was hospitalized six times for a total of more than 45 week s. With each hospitalization David’s condition worsened and significant de velopmental delays became more apparent. Each time the parents insisted on aggressive treatment. The treatment team made every effort to help his parents understand the trajectory of David’s condition and the consequences of the decisions they would need to make. While trying to do the best thing for David, the members of the care team struggled with their own grief and ethical beliefs. The team members had developed particular attitudes regard ing discontinuing life-prolongi ng treatments, based on their years of experience. The anxiety in this inst ance was related to the inability of the team members to do what they believed was the ri ght thing for their patient. The ethical conflict between the parents and the treatment team became more a pparent as the team reiterated its recommendation that the family limit life-prolonging interventions. David’s parents finally agreed to a DNR order, but conti nued to resist the idea of hospice because they believed that would mean giving up on their son. The team members’ ability to share their positive att itudes and experiences about the holistic and supportive focus of hospice care allowed the parents to co me to terms with David’s inevitable death. Identifying and discussing the attitudes of the family and those of the team members decreased anxi ety on both sides. David’s parents took him home and

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8 effort was made to ensure his comfort. He th en spent his last few days in his parent’s arms. Hinds, Oakes, Hicks, and Anghelescu ( 2005) reported on a case study involving a six-year-old boy with leukemia. The family was struggling with two opposing issues: the desire to be what they considered good pa rents by limiting their son’s suffering and the desire to interact with him as long as possible. Sufficient pain relief caused their son to be greatly sedated, so the family requested pain medication be limited. As noted in previous case studies, the focus of car e was not only palliative suppor t for the patient but also support for the family. Supporting the family’s wishes in this case caused the staff to suffer, because they would have preferred to reduce the patient’s pain. The staff also experienced grief during the c ourse of care and in anticipat ion of their patient’s death. This study, like the previous ones, points out the dilemmas that can arise as a result of conflicting ethical beliefs. Again th e attitudes of the team members were based on years of positive experience, experience that the parents do not have. There were increased anxiety levels on bot h sides due to the staff’s goa l of pain relief and the parent’s goal of interacting with their son as long as possible. Acco rding to Hinds et al. (2005), prolonged unresolved conflicts can emoti onally debilitate clinicians and affect their commitment to providing patient care. Gr ieving affects staff emotionally as well and has additional physical, mental, and spiritua l repercussions. If these conflicts are not addressed a healthcare provider could develop compassion fatigue. Hinds et al. described compassion fatigue as similar to grief w ith symptoms including lower frustration tolerance, dread of care-giving, diminished sense of purpose, depression and loss of hope, diminished capacity to listen and communi cate, and loss of confidence. Education regarding these intense feelings and attitudes enables nurses to identify and address issues as they arise thereby decreasing the possi bility of long term adverse effects.

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9 Quantitative Research Vejlgaard and Addington-Hall (2005) c onducted a cross-sectional retrospective survey of Danish doctors and nurses regarding attitudes and issues related to palliative care. The survey was constructed from other questionnaires and studi es identified from a literature review. Three hundred forty seve n nurses and doctors working in a Viborg county hospital, home care, and related services responded to the survey. The responses were compared using chi square statistics and chi square for trend. One of the questions posed by Vejlg aard and Addington-Hall (2005) was, “Dealing with a dying patient makes one aware of one’s own feelings regarding death” (p.122). Ninety-seven percent of nurses and eigh ty percent of doctors agreed with this statement. Another question related to att itude was, “I reflect a lot upon existential matters (thoughts about the meaning of life a nd death)” (p.122). Ninety percent of nurses and sixty-three percent of docto rs agreed with this statement. Again this question and the majority response, demonstrates the profund ity of feelings and attitudes addressed by nurses in a palliative care setting. In addition to revealing the nature of the feelings experienced by nurses, Vejlgaard and Addington-Hall (2005) also posed the question, “It is primarily the task of the nurse to deal with patient s’ reactions to death” (p.122). Fifty-nine percent of nurses agreed with this statement. So, not only are nurses dealing with thei r own feelings toward death, they shoulder the majority of the burden of dealing with the patients’ reactions as well. This study gives clear direction for th e areas that could be included in nursing training to better prepare nurses for dealing with their attitudes toward death and the anxiety produced when working with dying patients. Sahler et al. (2000) gathered a group of physicians together for the purpose of identifying opportunities for, and barriers to, me dical education about end-of-life care in the pediatric setting. One of the barriers iden tified by the group was the simple fact that in the county where this study was conducted, relatively few children die, which limits

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10 the exposure health professionals have to the intense emotions associated with the death of a child. If not dealt with, f eelings of anxiety and negative attitudes related to pediatric death, may cause physicians and nurses to re act by pulling away both emotionally and physically. Helping nurses while in training to recognize and c onsider the affects of these emotions through self-reflection would increas e professional satisfac tion and quality of the relationship with the patient and their family. Another barrier discovered by Sahler et al. (2000) was the difference between curative and palliative care in congenital diseas e. With congenital disease a child may live many years without the possibility of cu re. As time passes, the focus of care may change from life-prolonging to comfort measur es and back again se veral times during the child’s life. If palliative care is considered pa rt of the care paradigm from the time of diagnosis, the transition from one focus to the next is done gradually and intuitively, thus decreasing the psychological and emotional burden. An additional barrier discovered by Sahler et al. (2000), also rela ting to attitude, is the caregiver’s response in EOL care. While death is expected to provoke an emotional response, the death of a child can bring f eelings of powerlessne ss, unfairness, and personal vulnerability (Sahler, 2000). In this country there is an e xpectation that children will grow to adulthood and become the foundation for the next generation. The possibility of this hope not coming to fruition produces great anxiety. Cramer, McCorkle, Cherlin, Johnson-Hur zeler, and Bradley (2003) conducted a study of 180 nurses in order to describe the ch aracteristics, attitude s, and communications of nurses regarding hospice and caring for terminally ill patients. A cross-sectional design was used and data was collected from se lf-report questionnaires. Thirty nurses were randomly selected from each of six randomly selected Connecticut hospitals n=180. Cramer and colleages (2003) included sta ff nurses employed at least 6 months prior to the study and assigned to the cardiac, pulmonary, or oncology units. The sample was primarily female (94.8%) and white (94.2%). Th e inquiry was based on the belief that the

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11 potential influences on nurses’ practice include both fixed and modifiable characteristics. Three fixed and three modifiable areas we re identified. Three modifiable domains pertaining to attitude were st udied. Responses to a set of statements about the care of terminally ill patients and hospice were used to assess attitudes toward hospice via a Likert type scale. The thr ee attitudinal scores had a possi ble range of 12 to 60. Higher scores indicated a more positive attitude toward discussion of hospice, the benefit of hospice and perception of physician responsib ility in hospice care. The original instrument, from which these attitudinal items were derived, was tested in a pilot study in which the instrument showed good test-retes t validity and good c onstruct validity. The outcomes and independent variables were assessed using t tests. Multiple logistic regression was used to analyze a separate fi nal model for each of the three modifiable domains. The researchers found that the modi fiable characteristics of self-knowledge, hospice training, and attitude had a positive association ( p< .05) in the nurses’ comfort in discussing hospice and its benefits with hospice patients and their families. A study by Andersen, Seecharan, and Toce (2004) researched the perceptions of nurses and physicians regarding quality of death for their pediatric patients. The study was conducted in a faith based tertiary children’s hospital in Missouri where the participants worked as part of the palliativ e care team. Self-administered surveys were mailed to seventy-one physician/nurse pairs identified as the primary care providers for the same child. The surveys consisted of clos ed-ended questions rega rding the quality of care in the areas of pain, physical, psychosocial, and spiritual support, as well as provider perceptions. The questions were derived fr om provider focus group feedback. Analysis comparing nurse and physician responses was performed using simple chi square in dichotomous and nominal categories and chi square for trend statistics. Anderson, Seecharan, and Toce (2004) noted that both nurses and physicians in the categories of anticipatory guidance, symptom and pain management, and quality of death reported a high level of agreement. Nurses and physicians believed that a quality

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12 experience during the dying process was achieve d if these needs were met. A difference was noted in the roles of nurses and physicians however. Nurses were more likely to talk with the family about sibling, psychosocial, and religious is sues, while physicians were more likely to talk with families about decision-making. Based on these results, regardless of the role the provider plays it ap pears that there is a positive association between a palliative care approach and pos itive nurse and physician attitudes regarding the quality of death. When healthcare professi onals can feel positive about their ability to provide a quality death for a patien t, the anxiety level is decreased. To determine the core competencies and educational needs for EOL care, White, Coyne, and Patel (2001) conducted a survey of nurses belonging to the Oncology Nurses Society in Georgia, Virginia, Washington, a nd Wisconsin. The researchers developed and mailed a descriptive survey containing open-ended questions to 2,334 nurses and received 760 responses. Nearly all of the res pondents reported that EOL care was part of their practice and that co ntinuing education was impor tant. Despite the reported importance of continuing education, one third of those surveyed stated that they had less than two hours of continuing education in the previous two-year period. Among the top rated core competencies were: how to talk to patients and families about dying, pain control, comfort measures, pall iative treatments, and dealing with personal feelings. This study points out the perceived need among hospi ce nurses that feelings or attitudes are a critical topic of education. Amery and Lapwood (2004) utilized a desc riptive quantitative study and qualitative survey to identify and explor e the educational needs of ch ildren’s hospice doctors in England. They developed a selfadministered questionnaire from an analysis of existing children’s palliative care literature. In a ddition to the survey they also asked the participants to keep a preformatted educa tional diary. All doctors caring for pediatric hospice patients (n=55) were approached, a nd 35 responded. The surveys were designed

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13 to assess the doctors perceived educational needs and the diaries were to be used in practice to identify unmet educational needs. Amery and Lapwood (2004) found a discre pancy between the educational needs derived from the surveys and the needs desc ribed in the diaries. The questionnaires revealed that the doctors most wanted edu cation in clinical areas such as symptom control. The diaries however, revealed that ed ucation in areas of higher order, such as personal coping strategies and communicati on was of most impor tance. Statistical analysis was not reported. Amery and Lapwood (2004) found that the participants felt significant personal burden when working dying children, the particul ar concerns were the ability to handle their own emotions, their sense of isolation, and the crucial n eed to find peer support. The researchers believe that the diaries reflect the actual learning needs of the learner in their day-to-day practice as opposed to the lear ner’s perceived learning needs (Amery and Lapwood, 2004). The participants in this study imply a need to d ecrease anxiety through support and a means of dealing with the emotions common to pediatric hospice. With the purpose of improving care for dying patients Bradley, et al (2000) conducted a study to develop and test an easy to use instrument for measuring the attitudes of clinicians working with terminally ill patients. After a review of the current literature and interviews with both nurses and physicians three attitu dinal constructs were identified; professional responsibility in car ing for dying patients, efficacy of hospice and communication about dying. From those constr ucts, 25 items were developed to measure the constructs qualitatively. The items were then tested, unclear items were eliminated and additional items were added, resulting in a 12 item Likert type scale. The 12 item scale was then tested for validity and reli ability and shown to have good test-retest validity and good construct validi ty for all twelve items combined was reported at 0.86. Bradley, et al (2000), stated that because cl inicians are such an essential part of the patient care decisions made at the end of life, their attitudes are also essential to directing

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14 that care. One of the reported weaknesses of this study however, was that the clinicians participating in the study were caring for a more elderly population and that clinicians caring for children might have a very different set of attitudes. Summary Throughout the literature ther e is a consistent theme of how attitude affects the disposition of the nurse, the quality of car e, the ability to communicate and even the quality of the child’s death. Though not always stated directly, there is a sense of underlying anxiety produced by a less than posi tive attitude. The majority of attitudes and beliefs held by health professionals seem to be based on personal rather than work experiences, and most nurses stated that they felt inadequately trained to deal with the issues surrounding death, especi ally the death of a chil d. Further complicating the problem is the difficulty or inability to iden tify and express particular attitudes. Another area of concern noted in this brief review was the challenge of resolving conflicts between nursing staff and parents with opposing attitudes and the anxi ety these situations produce. While key attitudes regarding pe diatric hospice care and the anxieties experienced have been documented to some de gree, what is lacking is a clearly stated connection between those attitudes and the leve l of anxiety. It is possible that a more positive attitude might help to decrease the level of anxiety.

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15 Chapter III Methods The methods of research are presented in th is chapter, including a description of the participants, the instruments of measuremen t and the variables studied. The procedures for data collection and method of analysis also are included. Sample A convenience sample of registered nurses currently working at Lifepath Hospice and Palliative Care was used to obtain an a ppropriate number of par ticipants. The criteria for inclusion were (a) regist ered nurse providing hospice ca re; (b) ability to read and write in English. The sample size was estima ted using power analy tic techniques. With r = .30 and an alpha of .05, it was determined that a sample size of 83 was needed to achieve a power of .80. Instruments The State-Trait Anxiety Inventory (Spielbe rger, 1983) was used to rate the nurses’ level of anxiety related to pediatric hospice care. Nurses’ attitudes were measured using a modified version of Attitudes About Care at the End of Life Among Clinicians (Bradley et al., 2000) Permission to use these in struments was obtained (Appendix A and B). State Trait Anxiety Inventory Anxiety was measured using the state a nxiety portion of State-Trait Anxiety Inventory (STAI), a widely used measure of anxiety (Spielberg er, 1985). The 20-item inventory consists of 10 anxiet y-present items and 10 anxietyabsent items. Participants responded to each of the items on a four point summated rating scale, with options ranging from (1) not at all to (4) very much. Summing the responses provided a state

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16 anxiety score ranging from 20 to 80 with the hi gher scores indicating a higher state of anxiety. The state and trait portions of th e STAI have well established psychometric properties, with an internal consistency coefficient [al pha] reported as 0.89-0.94. This form can be seen in Appendix C. Attitudes About Care at the End of Life Among Clinicians The Attitudes About Care at the End of Life Among Clinicians (Bradley et al., 2000) instrument was modified to reflect attitudes re lated to a pediatri c population rather than the adult population for which it was orig inally designed. The original instrument was a 12-item survey designed to assess thr ee attitudinal construc ts. The first concept refers to one’s level of comfort in discussi ng hospice with the parents of a terminally ill child. The second concept involves views re garding what roles and responsibilities medical professionals have in caring for terminally ill children. The third concept refers to the degree to which one believes hospi ce is beneficial compared to conventional medical care. Participants respond to each of the items on a five point summated rating scale, with options ranging from (1) strongly agree to (4) strongly disagree. Summing the responses provides a picture of the nurse’s at titudes toward hospice care with higher scores indicating a more positive view. The original instrument, from which these items were derived, was tested in a pilot study (B radley et al., 2000) and showed good testretest validity and good construct validity for all twelve items combined was reported at 0.86. This form can be seen in Appendix D. Demographic Data Form Demographic information on each participant was collected using a demographic data form. This form included: age, gender, years of hospice nursing experience, number of years in nursing, pediatric hospice expe rience, ethnicity, highe st level of nursing education and amount of any of training in pediatric hospice. This form can be seen in Appendix E.

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17 Procedures Approval was obtained from the bioethic s committee at Lifepath Hospice and Palliative Care as well as the University of South Florida Institutional Review Board (Appendix F and G). A description of th e study was provided during several team meetings at the hospice offices. Nurses were invited to participat e and questions were answered. Consent was implied if the particip ants completed the survey and to protect privacy the surveys were filled out anony mously. The study survey was distributed during several staff meetings, completed i ndependently and returned immediately upon completion. Data Analysis Demographic data were analyzed using frequencies, percentages, means, and standard deviations. Means and standard deviations were calculated for research questions one and two. And finally, Pearson’ s correlation was used to analyze research question number three. 1. What is the level of anxiety of nur ses providing pediatric hospice care? 2. What are the attitudes of nurses toward pediatric hospice care? 3. Is there a significant relationship between at titude toward pediatric hospice care and anxiety in nurses caring fo r pediatric hospice patients?

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18 Chapter IV Results, Discussion, and Conclusion This chapter presents the result s of the study. The study’s strengths and weaknesses are discussed, as well as its imp lications for nursing. Suggestions for future research and for overcoming this st udy’s limitations are also discussed. Results Sample Thirty surveys were distributed to nurse s working at a local hospice during several staff meetings. All of the surveys were retu rned completed. The surveys were completed anonymously in an effort to achieve the most accurate information. The majority of respondents were white females over the age of 45 (Table 1). Nearly sixty-seven percent of the respondent s had been working in hospice for greater than one year, however only 27% were curren tly working with pediatric patients. Eighty percent of the respondents had greater than ten years of nursing experience (Table 2). Table 1. Age and Gender of Sample n Mean SD Frequency Percentage Age 30 46.6 8.5 Gender Female Male 30 27 3 90 10 Anxiety The state anxiety portion of the STAI was used to measure the first research question regarding the level of anxiety nurses experience when providing pediatric

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19 hospice care. The participants were instructed to answer each of the twenty questions in relation to how they feel when working with pediatric hospice patients. State-anxiety refers to the reaction or process taking place at a given time and its level of intensity, in this case when involved with pediatric hospice care (Spielberg er, 1983). The possible range of scores is 20-80 with the higher sc ore indicating greater le vels of anxiety. The actual range was 20-65, with a mean of 35.9, a standard deviation of 12.1 and a median anxiety score of 35.0 (Table 3). Table 2. Description of Sample Demographics n Mean SD Frequency Percentage Years of Nursing Experience 30 2.7 .70 Education Level LPN Diploma ASN BSN MSN 30 3 1 13 8 5 10.0 3.3 43.3 26.7 16.7 Hospice Experience < 1yr 1-5 yr >5 yr 30 10 12 8 33.3 40.0 26.7 Pediatric Hospice Experience In Past Presently 30 16 8 53.3 26.7 Training Yes CEU only 30 8 7 26.7 23.3 Ethnicity White Black Hispanic 30 23 4 3 76.7 13.3 10.0

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20 Attitude The second research question addressed th e attitudes of nurses toward pediatric hospice care and was measured using the The Attitudes About Care at the End of Life Among Clinicians questionnaire (Bradley et al., 2000). This instrument measured overall attitude and breaks attitude into three subscal es of attitude using a 12-item questionnaire with 4 questions for each subscale. The possibl e range of scores for the total attitude score is 12-60, with a higher score indicati ng a more positive attitude toward pediatric hospice. The total attitude score had a mean of 31.0, a standard deviation of 5.2 and a median attitude score of 32.0 (Table3). The range for each subscale was 4-20, again with higher scores indicating a positive attitude. The first subscale measures the level of comfort in discussing hospice and hospice related issues with the parents of a terminally ill child. The mean for this subscale was 8.3, the standard deviation 2.8 and the median was 8.0. The second subscale measures the views of nurses regarding th e roles and responsib ilities of medical professionals caring of terminally ill child ren, specifically physician involvement. A higher score in this case indicates that nur ses feel positively about physician involvement. This subscale had a mean of 13.7, a standard deviation of 2.1 and a median of 13.0. The final subscale measures the perceived bene fit of hospice verses conventional medical care. A higher score indicated the nurses believe hospice is more beneficial than conventional medical care in meeting the needs of terminally ill children and their parents. The mean for the benefit subscale wa s 9.3, with a standard deviation of 2.5 and a median score of 9.0 (Table 3). Relationship Between Anxiety and Attitude Pearson’s correlation was used to analy ze the third research question exploring the relationship between attit ude toward pediatric hospice care and anxiety in nurses caring for pediatric hospice patients. There was no significant relationship found between the total attitude score and the total anxiety sc ore, or the comfort and benefit subscales as

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21 correlated with the total anxiety score. Th ere was, however, a significant relationship ( p <.01) in the physician involvement subscale as compared with the total anxiety score (Table 4). Table 3. Attitude and Anxiety Scores n Possible Range Actual Range Mean SD Median Attitude Total Anxiety Total 30 30 12 – 60 20 -80 21 – 45 20 65 31.0 35.9 5.2 12.1 32.0 35.0 Subscales Comfort 30 4 20 4 15 8.3 2.8 8.0 Physician 30 4 20 11 20 13.7 2.1 13.0 Benefit 30 4 20 4 15 9.0 2.5 9.0 Table 4. Attitude and Anxiety Correlations n r P Attitude Total Score 30 .159 NS Comfort Subscale 30 .053 NS Physician Subscale 30 .481 .007 Benefit Subscale 30 -.131 NS Anxiety Total Score 30 .159 NS NS = Not significant Discussion Sample This survey was limited to one hospice with a small sample size of only 30 participants and therefore th e findings may not reflect th e total population of hospice nurses. Ninety percent of th e participants were female, 76.7% were white and almost

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22 60% were over the age of 45, making this a fairly homogenous group. Another weakness may be the fact that such a large number ( 73%) of the participants were not currently working with pediatric hospice patients. Future studies should be more diverse and have a larger sample size. The line between the other weaknesses and the strengths of the sample are not as clear. Well over half (66.7%) of the participants had been working in hospice for more than one year, with 26.7% of those having more than five years of hospice employment. As a weakness this may create a positive bias toward hospice and a decrease in overall anxiety. However this may also be considered a strength because the participants were speaking from experience not conjecture. Si milar arguments can be made of the nurse participant’s overall nursing experience. Ninety -three percent of them had greater than 5 years of experience, 80% of those had more th an 10 years of experience. In light of these limitations the results are nonetheless food for thought. Anxiety The results reveal a disparity between the respondents’ self-rated anxiety level and the anecdotal information that prompted th e study. Conversations with both nurses and the parents of terminally ill children prior to the study indicated a very high level of anxiety related to pediatric hospice. Scores be low fifty on the STAI indicate a lower level of anxiety. The mean score was 35.9 indicating a trend toward low to moderate levels of anxiety, with one participant scoring a very high 65. A larger sample size may have given a better picture of the actu al anxiety level experienced by most hospice nurses. There may be other reasons for the discrepancy betw een the researcher’s c linical experience and the outcome of the study. Since the surv ey was given during a staff meeting, the participants may not have been able to place themselves in the appropriate mindset, thus minimizing the anxiety level they might expe rience in the pediatric hospice setting. In addition, in order to avoid bias the investigator administer ing the survey did not give instructions that would have led the participants in any way. Participant self-bias may

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23 have played a role as well. Despite assu rances that the results were completely anonymous, the participants may have attached a negative connotati on to high levels of anxiety and therefore scored themselves lower to appear more positive. Attitude The total score on the attitude portion of the survey indicated a generally positive attitude toward pediatric hospi ce in general, with lower scor es indicating a more positive attitude and a mid-point score of 44 dividing positive attitude from the more negative. The mean score was 31. The subscales of co mfort in discussing pediatric hospice, the benefit of pediatric hospice and the attitude toward physician involvement had a smaller range of 4 to 20 possible. The attitude towa rd the benefit of pe diatric hospice scored comfortably on the positive side with a mean of 9.0 as did the co mfort subscale with a mean of 8.3. The physician involvement subscale is scored in reve rse significance with higher scores indicating a more positive attitude toward physician involvement, so with a mean of 13.6 this subscale again demonstrat ed that the nurses in the sample had a positive attitude related to physician involve ment. While the overall attitude toward pediatric hospice was expected to be positive, pa rticularly toward the benefits of pediatric hospice, the attitude toward comfort in discus sing hospice with the parents of terminally ill children was anticipated to be more negativ e, based again on the previous experience of the researcher. Perhaps the participant nur ses were considering th eir comfort level in discussing hospice in general, rather than specifically pediatric hospice. Relationship Between Anxiety and Attitude While there was no significant relationship found between the to tal attitude score and anxiety or between the comfort and be nefit subscales, there was a significant relationship found between the physician s ubscale and anxiety. Given the positive attitude scores in total as well as in the comfort and benefit subscales, it would seem to follow that the anxiety level would be lower. This assumes that a more positive attitude would positively affect (lowe r) the nurse’s level of anxiet y. The cause of the significant

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24 relationship ( p <.01) between attitude toward physic ian involvement and level of anxiety is unclear. Perhaps the nurses in this sample desire more physician involvement than they currently have. Since most of the nurses in this study did experience some level of anxiety related to pediatric hospice they ma y view physician involvement as a way to help decrease anxiety. This study revealed implications for hospi ce nurse training relate d to attitude and anxiety. Nurses cannot be trained to change th eir attitude or ignore their anxiety, but they can be given the skills needed to help them identify and deal with their attitudes toward death and the anxiety produced when working w ith dying patients, particularly terminally ill children. Cramer and colleagues (2003) f ound that self-knowledge, hospice training and attitude had a positive asso ciation with nurses’ comfort in discussing hospice and its benefits. In a country where relatively few ch ildren die, experience alone is not enough for nurses to gain insight into their attitude s toward the death of a child. Therefore, techniques for gaining self-knowledge could be one of the skills taught during training. Fifty-nine percent of the nurses in th e Vejlgaard and Addington-Hall (2005) study believed that nurses shoulder the majority of the burden when dealing with the patients’ reactions to death. The patients’ reaction c oupled with the nurses’ personal attitudes and anxiety can become overwhelming. If not iden tified and dealt wit h, these attitudes and anxiety may cause nurses to react by pulling aw ay both emotionally and physically. This further emphasizes the need for self-knowledge at the time of traini ng, so that pediatric hospice nurses are from the time of their firs t assignment, able to perform the physical tasks required while emotionally supporting the dying child and the child’s parents. The need for training in general was revealed in the demographic data. An overwhelming majority (73.3%) of the participan ts in this survey had received no training in pediatric hospice at all. Further research into specific educationa l needs of pediatric hospice nurses is indicated, with the results us ed to develop a model for pediatric hospice training. This study did not compare the lack of pediatric hospice training to the nurses’

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25 level of anxiety. Additional research into this area would provide more support for pediatric specific hospice training. There were limitations to the study instrume nts. The conflicts described in the case studies presented in the liter ature review could not be a ddressed with this attitude measure. Developing a tool to measure the si gnificance of those conflic ts and their effect on anxiety would enhance future studies. Th e anxiety instrument, although very reliable as a measure of state-anxiety, may not have given an accurate picture of the level of anxiety related to specific pediatric hospice situations. A tool cont aining both the aspect of pediatric hospice being meas ured and the corresponding leve l of anxiety might give a more accurate result. Increasing the sa mple size and including several hospice organizations would help to overcome some of this study’s limitations as well. Conclusion The results of the study demonstrated a generally positive attitude toward pediatric hospice including the specific areas of comfor t in discussing pediatric hospice, the benefits of pediatric hospice and the attitude toward physic ian involvement in pediatric hospice. Some level of anxiety was indica ted by the nurses in the study, although most scored themselves on the lowe r end of the anxiety scale. The disparity between the respondents’ stated leve l of anxiety and the anecdotal findi ngs of the researcher might be rectified with a stronger study. Unfortunate ly, not enough information was gained to develop a teaching tool directly from these results. However, the study does give some direction for future research and the devel opment of more specific methods of measure. Future Research Future research into the issue of nursing anxiety and attitude toward caring for pediatric hospice patients should: Include larger samples from multiple hospices, Include a more diverse sample, Be conducted immediately prior to performing pediatric hospice care,

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26 Compare nurses’ level of pediatric hospice traini ng to level of anxiety, Work toward developing a tool that is sp ecific to the anxiet y-producing aspects of pediatric hospice

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27 References Amery, J., & Lapwood, S. (2004). A study into the educational n eeds of children's hospice doctors: a descriptive quant itative and qualitative survey. Palliative Medicine, 18, 727-733. Andersen, E. M., Seecharan, G. A., & Toce, S. S. (2004). Provider perceptions of child deaths. Achieves of Pediatric and Adolescent Medicine, 158, 430-435. Bradley E. H., Cicchetti, D. V., Fried, T. R., Rousseau, D. M., Johnson-Hurzeler, R., Kasl, S. V., et al. (2000). Attitudes about care at the end of life among clinicians: a quick, reliable, and valid assessment instrument. Journal of Palliative Care 16, 6-14. Children's Hospice International. (2003). About children's hospice, palliative care and end-of-life care Retrieved June 23, 2005, from http://www.chionline.org/resources/about.phtml Children's Hospice International. (2005). Current Programs: Florida Retrieved August 15, 2005, from http://chionline.org/states/fl.phtml Cramer, L. D., McCorkle, R., Cherlin, E., J ohnson-Hurzeler, R., & Bradley, E. H. (2003). Nurses' attitudes and practice related to hospice care. Journal of Nursing Scholarship, 35 (3), 249-255. Ferrell, B. R., & Coyle, N. (2002). An overview of pa lliative nursing care. American Journal of Nursing, 102 (5), 26-31. Feudtner, C. (2004). Perspectives on quality at th e end of life. Achieves of pediatric and adolescent medicine, 158, 415-417. Hinds, P. S., Oakes, L. L., Hicks, J., & A nghelescu, D. L. (2005). End-of-life care for children and adolescents. Seminars in Oncology Nursing, 21 (1), 53-62. Rushton, C. H. (2004). Ethics and palliative ca re in pediatrics: when should parents agree to withdraw life-sustaini ng therapy for children? American Journal of Nursing, 104 (4), 54-63. Rushton, C. H. (2005). A framework for integrat ing pediatric palliati ve care: being with dying. Journal of Pediatric Nursing, 20 (5), 311-325. Sahler, Olle, J. Z., Frager, G., Levetow n, M., Cohn, F. G., & Lipson, M. A. (2000). Medical education about endof-life care in the pediat ric setting: principles, challenges, and opportunities. Pediatrics, 105 (3), 575-584.

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28 Spielberger, C. D. (1983). In (Ed.), State-Trait Anxiety Inventory Manual (pp. 1-70). Mind Garden City: Redwood. Spielberger, C. D. (1985). Assessment of state trait anxiety: conceptual and methodological issues. The Southern Psychologist, 2, 6-16. Vejlgaard, T., & Addington-Hall, J. M. (2005). Attitudes of Danish doctors and nurses to palliative and terminal care. Palliative Medicine, 19, 119-127. White, K. R., Coyne, P. J., & Patel, U. B. (2001). Are nurses adequately prepared for end-of-life care? Journal of Nursing Scholarship, 33 (2), 147-151.


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The relationship between nurses' anxiety and attitude related to pediatric hospice
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ABSTRACT: To lose a child is a profoundly emotional experience. even if it is not your own, the experience involves deeply held beliefs about death, the quality of death, ethics, and perhaps personal experience. Left unexplored, these beliefs and the anxiety they may produce, can become barriers to providing quality end-of-life care for children with life limiting conditions and their families. The purpose of this study was to explore the relationship between hospice nurses' attitudes toward providing pediatric hospice care and the level of anxiety they may experience related to pediatric hospice care. A self administered questionnaire was completed by 30 hospice nurses. the 20-item state anxiety questionnaire from the state-trait anxiety inventory was used to rate the nurses' level of anxiety related to pediatric hospice care. The nurses' attitudes toward pediatric hospice care were measured using a modified version of attitudes about care at the end of life among clinicians scale State-anxiety refers to the reaction or process taking place at a given time and the level of intensity related to the situation. the possible range of scores was 20-80 with the higher score indicating greater levels of anxiety. The actual range was 20-65, with a mean of 35.9 (sd = 12.1). The possible range of scores for the total attitude score was 12-60, with a higher score indicating a more positive attitude toward pediatric hospice. The total attitude score had a mean of 31.0 (SD=5.2). Attitude was further divided into three attitude subscales: comfort in discussing pediatric hospice with parents, perceived benefit of pediatric hospice and attitude toward physician involvement in pediatric hospice. The possible range for each subscale was 4-20, again with higher scores indicating a positive attitude. The comfort subscale had a mean of 8.3 (SD=2.8). The benefit subscale had a mean of 9.3 (SD=2.5). The physician involvement subscale had a mean of 13.7 (SD=2.1). The resultssuggeste d the presence of some amount of anxiety experienced with pediatric hospice. The total score on the attitude portion of the survey indicated a generally positive attitude toward pediatric hospice in general. Additionally, the subscales of comfort in discussing pediatric hospice, the benefit of pediatric hospice and the attitude toward physician involvement demonstrated a positive attitude as well. While there was no significant relationship found between the total attitude score and anxiety or between the comfort and benefit subscales, there was asignificant relationship (p < .01) found between the physician subscale and anxiety. This may indicate a desire for more physician involvement or the belief that physician involvement decreases anxiety. This study revealed self-knowledge and pediatric specific hospice training as areas for future research and education.
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