Transformative Aspects of Caregiving at Life s End

Transcription

1 Vol. 29 No. 2 February 2005 Journal of Pain and Symptom Management 121 NHPCO Original Article Transformative Aspects of Caregiving at Life s End Jennifer R. Salmon, PhD, Jung Kwak, MSW, Kimberly D. Acquaviva, PhD, MSW, Katherine Brandt, MS, and Kathleen A. Egan, MA, BSN, CHPN School of Aging Studies (J.R.S., J.K.), Florida Policy Exchange Center on Aging, University of South Florida, Tampa, Florida; School of Medicine and Health Sciences (K.D.A.), The George Washington University, and The George Washington Institute for Spirituality and Health (K.D.A.), Washington, DC; Professional Leadership & Consumer and Caregiver Services (K.B.), National Hospice and Palliative Care Organization, Alexandria, Virginia; and The Hospice Institute of the Florida Suncoast (K.A.E.), Largo, Florida, and The Center for Hospice, Palliative Care & End-of-life Studies (K.A.E.), University of South Florida, Tampa, Florida, USA Abstract We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life s end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life s end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience. J Pain Symptom Manage 2005;29: U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Caregivers, hospice care, adaptation, psychological, palliative care, stress, psychological, terminal care Address reprint requests to: Jennifer R. Salmon, PhD, School of Aging Studies, Florida Policy Exchange Center on Aging, University of South Florida, USF #30437, Tampa, FL 33620, USA. j.salmon@cas.usf.edu. Accepted for publication: December 7, U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Introduction Hospice improves the quality of life of those near the end of life and decreases the stress of family caregivers. 1 The effect on caregivers involved with patients at the end of life has received relatively little attention in the hospice /05/$ see front matter doi: /j.jpainsymman

2 122 Salmon et al. Vol. 29 No. 2 February 2005 and caregiving research literature. 2-4 Consequently, we do not know to what extent these caregivers needs are being met by care providers and whether caregiving at life s end can be a positive experience. Caregivers experience health problems due to physical tasks and emotional stressors 5, 6 and higher-than-average rates of depression, anger and anxiety. 7-9 Caregivers of patients at the end of life experience higher levels of distress and family strain that may be due to psychological strain, restrictions on a caregiver s own life, and anticipated bereavement. 10,11 In contrast, studies of other types of caregivers report many benefits of caregiving, such as an increased sense of meaning and self-worth, closer family ties, and increased self-efficacy in caregiving tasks Understanding the potential for positive aspects of caregiving at life s end may help practitioners to support the continued developmental growth of these caregivers. 16 Caregiving At Life s End is a three-year project of The Hospice Institute of the Florida Suncoast, funded by the Administration on Aging National Family Caregiver Support Program. The purpose of the Caregiving At Life s End project is to assess caregiver needs and then to design, implement, and evaluate a curriculum, Caregiving At Life s End: The National Train-the- Trainer Program. 17 The current study reports on the results of the national needs assessment. The conceptual framework for the study is based on the Hospice Experience Model of Care, 18 a model that facilitates a more meaningful and supportive experience for the patient and caregiver in the face of suffering. One dimension of the model adapts Byock s developmental landmarks and taskwork for life completion and life closure for patients 19,20 to support the experience of caregivers. 21 We collapsed ten developmental landmarks and tasks 19,20 into three transformative domains self-acceptance, meaning, and closure and added a fourth domain, comfort with caregiving, based on other research. 3,4,22 Self-acceptance is when one accepts both positive and negative attributes, comes to terms with one s past and present actions and behaviors, 23 and accepts one s own strengths and limitations. 24 It helps caregivers to accept the decisions and behaviors of others 24 and to navigate the challenges faced in caring for a loved one near the end of life, as well as during bereavement Finding meaning in caregiving is an alternative model to the stress/adaptation model of caregiving. 28 Understanding the relationship of the benefits and burdens of caregiving may better explain simultaneous feelings and extend the stress/adaptation model further. 13 Caregivers who help a family member who is near life s end experience many processes prior to letting go and feeling a sense of role completion or closure They may come to accept the reality of the diagnosis, struggle to maintain a sense of control in the presence of an uncontrollable life event, and let go of the need to control the outcome. Caregivers assist their family members to prepare for death, while preparing for the impending loss and considering their own future. 32 Caregivers who are able to let go are able to live in the present, set boundaries, and maintain self-care, such as meditation and exercise. As a result, caregivers can show increased emotional wellness. 29 Caregivers may maintain control by choosing to let go in the latter stages of caregiving 30 and recognizing when it is appropriate to ask for help. Finally, caregivers express a need for information on patient care 3,4,22 and how to communicate with professionals. 3 Bereaved caregivers who had critical roles in carrying out many patient care tasks at home experienced feelings of inadequacy and incompetence. 4 Education about these tasks increased knowledge and confidence of family caregivers and was also important for teaching about the physical changes to expect and how to arrange advance directives. 4 We test three hypotheses based on this model (Figure 1): 1) current and bereaved caregivers will be similar in age, gender, race, but their family members will be different due to our sampling procedure (which included current caregivers of patients receiving services for two weeks or longer); 2) the three transformative domains (self-acceptance, meaning, and closure) and comfort with caregiving will be associated with lower burden and increased gain; and 3) these domains will mediate between stressors and feelings of burden and gain. Methods Procedures The research study received approval from the Institutional Review Board at the University

3 Vol. 29 No. 2 February 2005 Caregiving At Life s End: Transformative Aspects 123 Fig. 1. Analytical model for national needs assessment of hospice caregivers. of South Florida s Office of Research, Division of Research Compliance for the study of human subjects (IRB #100397). Caregivers were sampled using a two-stage procedure. A random sample of hospice and palliative care organizations was mailed a package of materials with directions for randomly selecting current and bereaved caregivers and mailing the appropriate questionnaire in a prepaid envelope. Current caregivers had a family member or friend who had used hospice or palliative care services for at least two weeks and was alive at the time of the mailing. Bereaved caregivers were those whose family member or friend died while under hospice care between six months to one year prior to receiving this survey. Hospice and palliative care organizations received postage-paid reminder post cards to be mailed to participants one week later. Sampling Hospice and palliative care organizations were selected from a member list provided by the National Hospice and Palliative Care Organization (NHPCO). We retained main service centers and excluded corporate or branch offices (n 1,841). One-third of these organizations were selected at random (n 627). The sample was faxed information about the study and a form to provide daily census and annual number of clients. Non-responding hospices were called by phone. Nearly all provided information (n 505; 87%). Those that were branches (and not eliminated earlier) or no longer in business were removed from the sample (8%). Another 36 organizations (6%) declined to participate in the study before the materials were mailed out and the remaining 37 (6%) did not respond after repeated contacts but were kept in the sample. A total of 578 hospices were in the final sample, although just 542 were mailed materials since 36 had declined prior to mailing. Of the 578 hospices, 56% responded (n 323) after adjusting for hospices that were not appropriate for the study. They were representative in terms of size of all organizations in the NHPCO database. Participating organizations mailed 1,524 Form A (current caregivers) and 1,505 Form B (bereaved caregivers) questionnaires (Table 1). Of these, 953 responded for an overall response rate of 32%, including 526 current caregivers (35%) and 427 bereaved caregivers (28%). Due to the low response rate, we tested for response bias between early (7 days or less) and late (18 days or later) responders. In all model variables, the two groups were the same. Individuals who responded late had more in common with non-responders. 33 With no substantive differences between these two groups, it is possible to make inferences from the sample to current and bereaved hospice caregivers. Table 1 Caregiving At Life s End National Needs Assessment: Caregiver Response Rate Current Bereaved Caregivers Caregivers n % n % Original sample Non-participating hospice or undeliverable Adjusted sample Declined Responded

4 124 Salmon et al. Vol. 29 No. 2 February 2005 Measures No single scale exists to measure the transformative aspects of caregiving at life s end. We selected existing scales to measure some domains and created new scales for other domains. Scales were adapted to be appropriate for current and bereaved caregivers and for selfadministration. The questionnaire was pilottested and the seven scales were found to have good validity and reliability. 22 The Revised Caregiving Appraisal Scale measures caregiver gain and burden. 34 The personal growth subscale of the Hogan Grief Reaction Checklist 24 measures self-acceptance. Six items from the provisional meaning scale of the Finding Meaning Through Caregiving questionnaire 13 that did not overlap with the gain and burden scales measure meaning. We wrote 12 new questions to measure closure from the perspective of the caregiver, based on Byock 19 and the Hospice Experience Model of Care, 18 and 28 new questions to measure the level of importance and level of comfort with 14 developmental tasks. Care receiver data included: age, gender, religion, primary medical conditions, location of care, help with activities of daily living (ADLs), living arrangements, relationship to primary caregiver, and length of time in hospice. Caregiver (respondent) data include: age, gender, race or ethnicity, self-rated health, 35 level of education, relationship to care receiver, hours per week and number of months providing care, number of other individuals under their care, and how often they get support from others. Analyses We used Chi-square for discrete variables and t-test for continuous variables to test the first hypothesis that current and bereaved caregivers would be similar in age, gender, race, but their family members would have different diagnoses due to sampling procedures. We used hierarchical multiple linear regression to test the second and third hypotheses that the transformative tasks and comfort with caregiving would be associated with reduced burden and increased gain, and would mediate stressors after controlling for background characteristics (Fig. 1). Demographic characteristics of the caregiver were entered in the first step, followed by characteristics of the care receiver, then stressors, and finally the four potential mediators. Mediation occurs when the mediator s effect is stronger than the predictor s effect on the dependent variable. 36 For example, when a mediator variable is added to a regression equation, the strength and significance of another predictor is reduced. We expected the effect of stressors to be reduced when the mediating variables were added and we expected the mediators as a group to have the strongest contribution to increasing gain and reducing burden. Results There were no demographic differences between the current and bereaved caregivers but they differed in most of the other variables. Both groups were predominantly female (Table 2), two-thirds had a high school education, and one-third were college graduates. Their mean age was 62 years. There were slightly more spousal caregivers in the bereaved group (54%) than the current caregiver group (46%). Although caregivers from both groups reported moderate health, current caregivers reported significantly worse health (2.8 with 5 being worst) compared to bereaved caregivers (2.6). Compared to bereaved caregivers, current caregivers reported providing fewer hours of care a week to the care recipient (79 vs. 96), longer months providing care (8.1 vs. 5.7), and less support from others (3.8 vs. 4.0) than the bereaved caregivers. Current caregivers reported higher levels of meaning and burden. Bereaved caregivers reported higher levels of self-acceptance, closure, and gain. There was no difference in the level of comfort felt by either caregiver group. Current care recipients were older than those who had died (76 years vs. 74 years; see Table 3). They also had fewer limitations in ADLs (4.2 vs. 5.4) and received services from hospice for longer duration (23 vs weeks) than those who had died. They were less likely to have cancer (50% vs. 68%) and renal disease (5.6% vs. 9.5%), but more likely to have heart disease (24% vs. 19%) and neurological disease (24% vs. 12%). On the other hand, bereaved caregivers were more likely to have lived with the care recipient and to have used a hospice facility, than those who were still caring for a family member.

5 Vol. 29 No. 2 February 2005 Caregiving At Life s End: Transformative Aspects 125 Table 2 Caregiving At Life s End National Needs Assessment: Caregiver Characteristics by Caregiver Type Current n 494 Bereaved n 407 Total n 901 Chi-square Sig. Demographic Characteristics Percent Females High school or technical school graduate College graduate Spouse Daughter/son Mean t-test Sig. a Age Support from others (5 Always) P Health (5 Poor) P 0.01 Hours a week providing care P Months providing care P 0.05 Other individuals receiving care Transformative Characteristics Self-acceptance (12 60) P Meaning (6 30) P 0.05 Caregiver closure (12 60) P Caregiver comfort (0 14) Gain (6 30) P Burden (9 45) P a Based on weighted data. The hierarchical multiple linear regression model explained 25% of any change in caregiver burden (P 0.001, see Table 4) and 44% of any change in caregiver gain (P 0.001, see Table 5). Higher burden was associated with being female (P 0.01), poorer health, higher education, and care receiver needing assistance with ADLs (P 0.001) (Table 4). Lower burden Table 3 Caregiving At Life s End National Needs Assessment: Care Receiver Characteristics by Caregiver Type Current n 494 Bereaved n 407 Total n 901 t-test Sig. Demographic Characteristics Mean Age P 0.01 Number of ADLs P Weeks in hospice 23.0 a P Percent Chi-square Sig. Females P 0.05 Protestant Catholic Other Christian Primary Condition b Heart P 0.05 Cancer P Stroke Respiratory Renal P 0.05 Neurological P HIV/AIDS Setting of Care b With caregiver P 0.05 Care receiver home Hospice facility P 0.05 Nursing home Primary Caregiver Caregiver (respondent) Paid caregivers Combination paid and family a Sample selected from clients in hospice 2 weeks. Multiple responses allowed. Based on weighted data.

6 126 Salmon et al. Vol. 29 No. 2 February 2005 Table 4 Caregiving At Life s End National Needs Assessment: Contribution of Transformative Tasks to Caregiver Burden Caregiver Care Receiver Stressors Mediators Caregiver Characteristics Standardized Beta Bereaved Age Gender female 0.13 b 0.10 a 0.10 a 0.11 a Race Caucasian Health (5 poor) 0.27 c 0.27 c 0.24 c 0.19 c Relationship spouse Education college 0.17 c 0.16 c 0.14 b 0.12 b Importance of caregiving tasks Care Receiver Characteristics Age Gender female Religion Protestant Neurological Dx 0.10 a Cancer Dx Stressors Support from others (5 always) 0.17 c 0.15 c Number of ADLs 0.23 c 0.22 c Weeks in hospice Hours a week providing care Months providing care Other individuals receiving care Mediators Self-Acceptance 0.03 Meaning 0.10 a Caregiver closure 0.06 Caregiver comfort 0.25 c Change in adjusted R c 0.02 b 0.06 c 0.06 c n 500. Adjusted R Based on weighted data. a P b P c P was associated with receiving support from others (P 0.001), having a sense of meaning (P 0.01), and feeling comfortable with caregiving tasks (P 0.001). Meaning and feeling comfortable with caregiving mediated poor health when explaining burden, but they did not affect the significant stressors (level of support from others, and ADLs). In addition, the mediators added just 0.06 to adjusted R 2 to explain changes in burden, the same amount that stressors contributed to the model. Caregiver characteristics contributed the most to burden (change in adjusted R ). All four tasks increased levels of caregiver gain and contributed over half of all variance explained (change in adjusted R , P 0.001) (Table 5). In the final model, they reduced the effects of one stressor (level of support from others) and three background characteristics (poor health, importance of caregiver tasks, and neurological diagnosis). Other medical diagnoses did not affect the outcome of either model and were excluded for the regression analyses; cancer was included due to the high incidence of cancer in hospice and in this study. The most common neurological diagnosis was Alzheimer s Disease, which could easily be considered another stressor. Higher caregiver gain is associated with being bereaved (P 0.001), higher ratings of the importance of caregiving tasks (P 0.01), providing more hours a week of care (P 0.001), along with the individual effects of self-acceptance (P 0.05), meaning (P 0.001), caregiver closure (P 0.001), and comfort with caregiving tasks (P 0.001). In summary, transformative aspects of caregiving and comfort with caregiving did not mediate the stressors associated with burden but did mediate one stressor associated with caregiver gain. Two of these tasks contributed to reducing caregiver burden, and comfort with caregiving was the largest contributor. All four tasks contributed to improving caregiver gain, and meaning was the largest contributor. Caregivers who were able to attend to self-acceptance, meaning, and closure found more gain

7 Vol. 29 No. 2 February 2005 Caregiving At Life s End: Transformative Aspects 127 Table 5 Caregiving At Life s End National Needs Assessment: Contribution of Transformative Tasks to Caregiver Gain Caregiver Care Receiver Stressors Mediating Caregiver Characteristics Standardized Beta Bereaved 0.22 c 0.21 c 0.16 c 0.16 c Age Gender female Race Caucasian Health (5 poor) 0.10 a 0.09 a 0.10 a 0.01 Relationship spouse Education college Importance of caregiving tasks 0.37 c 0.38 c 0.34 c 0.12 b Care Receiver Characteristics Age Gender female Religion Protestant Neurological Dx 0.11 a 0.12 b 0.06 Cancer Dx Stressors Support from others (5 always) 0.12 b 0.06 Number of ADLs Weeks in hospice Hours a week providing care 0.11 a 0.09 a Months providing care Other individuals receiving care Mediators Self-Acceptance 0.10 a Meaning 0.27 c Caregiver closure 0.18 c Caregiver comfort 0.16 c Change in adjusted R c 0.00 c 0.02 c 0.23 c n 500. Adjusted R Based on weighted data. a P b P c P in the caregiving experience. Those who were also comfortable with caregiving had both less burden and more gain. Discussion This research goes further than previous research in understanding both the burdens and gains associated with current and bereaved caregivers of patients at the end of life who participated in a hospice or palliative care program. By statistically controlling for background characteristics and stressors, we were able to suggest a relationship of comfort with caregiving and meaning to lower burden, and, along with self-acceptance and closure, to higher caregiver gain. This cross-sectional study does not permit us to suggest that this relationship is necessarily causal. In addition, the low overall response rate (32%) tempers our findings somewhat, although we found no significant non-response bias that would limit our ability to infer to the population. The sample of current caregivers may be biased because they were more likely to be caring for someone with a neurological disease. This bias was due to selecting current caregivers whose loved one had been in hospice for at least two weeks. The sample of bereaved caregivers also may be affected by memory bias, since the one group had been bereaved between six months to one year. This would affect their memory of stress and support but not their current feelings of burden and gain. In fact, the bereaved caregivers show the potential for transformation after the death of a family member. Burden and gain are different constructs, 16,37 and the findings are not unexpected. At the same time, the goal of Caregiving at Life s End is to provide opportunities for caregivers to attend to the tasks of completion and closure in ways that have personal meaning, so that they may experience positive aspects of caregiving at life s end. Part of the positive experience is to reduce what is commonly described as burden.

8 128 Salmon et al. Vol. 29 No. 2 February 2005 In response to an open-ended question (not the focus here), caregivers consistently described clear burdens (lack of time for self and stress from the responsibilities of caregiving) and yet simultaneously ended their comments with I would do it all over again. They described ways that caregiving had transformed their lives and felt deep gratitude toward others and God and for the opportunity to help someone they loved. Along with the effect of the three transformative tasks, it is important to realize that feeling comfortable with caregiving also affects burden and gain. Others have found the importance of knowledge about caregiving (such as giving medications or communicating with physicians) that leads to feelings of competence and satisfaction. 4 In fact, we found that many of these caregivers described their pride in doing a good job, which allowed their family member an opportunity to die at home and without pain. Any curriculum aimed at caregivers at life s end needs to include the transformative aspects of meaning, self-acceptance, and closure with knowledge skills needed to make caregiving a positive experience. Acknowledgments This research is supported in part by a grant from the U.S. Administration on Aging National Family Caregiver Support Program, Grant # 90-CG References 1. Mezey M, Neveloff-Dubler N, Mitty E, Brody AA. What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? Gerontologist 2002;42(Spec No 3): Enyert G, Burman ME. Qualitative study of selftranscendence in caregivers of terminally ill patients. Am J Hosp Palliat Care 1999;16(2): Garland TN, Bass DM, Otto ME. Needs of hospice patients and primary caregivers: A comparison of primary caregivers and hospice nurses perceptions. Am J Hosp Care 1984;1(3): Teno JM, Casey VA, Welch LC, Edgman-Levitan S. Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. J Pain Symptom Manage 2001; 22(3): George LK, Gwyther LP. Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist 1986;26(3): Schulz R, Visintainer P, Williamson GM. Psychiatric and physical morbidity effects of caregiving. J Gerontol 1990;45(5):P181 P Anthony-Bergstone CR, Zarit SH, Gatz M. Symptoms of psychological distress among caregivers of dementia patients. Psychol Aging 1988;3(3): Gallagher D, Rose J, Rivera P, Lovett S, Thompson LW. Prevalence of depression in family caregivers. Gerontologist 1989;29(4): Haley WE, Levine EG, Brown SL, Berry JW, Hughes GH. Psychological, social, and health consequences of caring for a relative with senile dementia. J Am Geriatr Soc 1987;35(5): McHorney CA, Mor V. Predictors of bereavement depression and its health services consequences. Med Care 1988;26(9): Payne S, Smith P, Dean S. Identifying the concerns of informal carers in palliative care. Palliat Med 1999;13(1): Archbold PG. Impact of parent-caring on women. Fam Relat 1983;32(1): Farran CJ, Keanehagerty E, Salloway S, Kupferer S, Wilken CS. Finding meaning: An alternative paradigm for Alzheimer s disease family caregivers. Gerontologist 1991;31(4): Foley KL, Tung H-J, Mutran EJ. Self-gain and selfloss among African American and white caregivers. J Gerontol B 2002;57B(1):S14 S Motenko AK. Respite care and pride in caregiving: The experience of six older men caring for their disabled wives. In: Reinharz S, Rowles GD, eds. Qualitative gerontology. New York: Springer-Verlag, 1988: Kramer BJ. Gain in the caregiving experience: Where are we? What next? Gerontologist 1997; 37(2): Acquaviva K, Brandt K, Egan K. Caregiving at life s end. Largo, FL: The Hospice Institute of the Florida Suncoast, Egan K, Labyak MJ. Hospice care: A model for quality end-of-life care. In: Ferrell BR, Coyle N, eds. Textbook of palliative nursing. New York: Oxford University Press, 2001: Byock I. The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med 1996;12(2): Cassell EJ. The nature of suffering: and the goals of medicine. New York: Oxford University Press, Staton J, Shuy RW, Byock I. A few months to live: Different paths to life s end. Washington, DC: Georgetown University Press, 2001.

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