Benefits of Training Family Caregivers on End-of-Life Closure.


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  NHPCO: Original Article  Benefits of Training Family Caregiverson Experiences of ClosureDuring End-of-Life Care  Jung Kwak, MSW, PhD, Jennifer R. Salmon, PhD, Kimberly D. Acquaviva, MSW, PhD,Katherine Brandt, MS, and Kathleen A. Egan, MA, BSN, CHPN The Center on Age and Community/Applied Gerontology (J.K.), University of Wisconsin-Milwaukee,Milwaukee, Wisconsin; School of Aging Studies (J.R.S.), University of South Florida, Tampa, Florida;  Department of Nursing Education (K.D.A.), The George Washington University School of Medicine and Health Sciences, Washington, DC; National Hospice and Palliative Care Organization (K.B.),Alexandria, Virginia; The Hospice Institute of the Florida Suncoast (K.A.E.), Clearwater, Florida, and The Center for Hospice, Palliative Care and End-of-life Studies (K.A.E.), University of South Florida,Tampa, Florida, USA   Abstract  Caregiving at Life’s End (CGLE) is a program for family caregivers caring for someone during the last years of life that focuses on the emotional, spiritual, and practical aspects of  life and relationship completion and closure. This study evaluated the effectiveness of CGLE in improving three major outcomes: comfort with caregiving, closure, and caregiver gain. Family caregivers (  n ¼ 2,025) participated in programs facilitated by health and human service professionals (  n ¼ 142) who completed a CGLE train-the-trainer workshop conducted by The Hospice Institute of the Florida Suncoast. The caregivers completed training rosters and pre- and/or post-surveys. Group differences are reported in baseline characteristics and change in three outcomes for caregivers who completed 1) both pre- and post-survey, 2) pre- survey only, and 3) post-survey only. For those who completed both surveys (  n ¼ 926), paired  t  -tests and multiple linear regression tested the impact of program length on caregiver outcomes. Caregivers participated in, on average, four sessions and 7.7 hours of training.The majority of caregivers were Caucasian (88%), female (81%), and on average, 60 years old. Significant improvement was found in all three outcomes (  P < 0.001). The program length made a difference for improvement in comfort with caregiving and closure but not in caregiver gain. Caregivers who are caring for someone during the last years of life benefit from a program that focuses on the life-changing or transformative aspects of caregiving in the last  years of life, as well as practical aspects of caregiving. The ability to support caregivers in this  This research is supported in part by a grant toThe Hospice Institute of the Florida Suncoast from the U.S. Administration on Aging NationalFamily Caregiver Support Program, Grant No.90-CG-2560. Address reprint requests to:  Jennifer R. Salmon, PhD,School of Aging Studies, University of SouthFlorida, 4202 East Fowler Avenue, MHC 1319, Tam-pa, FL 33620, USA. Accepted for publication: November 4, 2006. Ó 2007 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.0885-3924/07/$ e see front matterdoi:10.1016/j.jpainsymman.2006.11.006 434 Journal of Pain and Symptom Management Vol. 33 No. 4 April 2007   relatively low impact intervention can be used in hospice and nonhospice settings. J PainSymptom Manage 2007;33:434 e 445. Ó 2007 U.S. Cancer Pain Relief Committee.Published by Elsevier Inc. All rights reserved. Key Words  Caregiving, training, closure, gain, comfort, end of life  Introduction  Most end-of-life care in home settings is pro- vided by family members who receive support from hospice and palliative care organizations.Spouses, family, and friends carry out many im-portant caregiving responsibilities such as per-sonal care, transportation, and homemaking.The negative outcomes associated with caregiv-ing, including psychological andphysicalhealth effects, are well documented, 1 e 5  whileat the same time, caregivers report many ben-efits of caregiving, such as an increased senseof meaning and self-worth, closer family ties,andincreased self-efficacy in caregivingtasks. 6 e 9 In addition to identifying stressorsand negative outcomes of caregiving, it is im-portant to recognize these positive aspects. 10 By understanding factors that facilitate care-givers in experiencing beneficial aspects of caregiving, practitioners can better assist care-givers in the process of developmental growththroughout the caregi ving experience, espe-cially at the end of life. 10 Caregivers of family members near life’s endneed knowledge and skills related to patient care, communicating with health care pro- viders, planning for advance care decisionsand legal matters, dealing with spiritual and re-ligious matters,personal care needs, andhousehold tasks. 11 e 14  Although education in-creases knowledge and self-ef ficacy of family members in these areas, 13 e 16 little is knownabout the effectiveness of training caregiversabout the meaningful and life-changing ortransformative aspects of caregiving near life’send. Supporting patients and families duringtheseaspectsofcaregiving isoneoftheprimary support services of hospice and palliative care.The purpose of this study is to evaluate theeffectiveness of the Caregiving at Life’s End(CGLE) program, the first research-based na-tional program of its type grounded in theory based on hospice practice. The major aim of the CGLE program, developed by The HospiceInstitute of the Florida Suncoast, is to helpfamily caregivers find a sense of meaning, pur-pose, and value in the experience of caregivingby focusing on the emotional, spiritual, andpractical aspects of life and relationship com-pletion and closure. The CGLE program isbasedon the Hospice Experience Model of Care 17 anda national survey of hospicecaregivers. 18 The Hospice Experience Model of Care 17  was initially developed as a framework for un-derstanding the developmental process of pa-tients at the end of life by incorporatingByock’s work on the developmental landmarksand taskwork for life completion and life clo-sure, and adapting it to st udy the experiencesof end-of-life caregivers. 18 e 21  AccordingtoThe Hospice Experience Model of Care, 17 rec-ognizing and achieving a sense of life comple-tion and closure can lead to increased sense of gain for caregivers. Within this theoreticalframework, caregiving for individuals nearthe end of life is understood as a developmen-tal process involving activities aimed at achiev-ing meaningful completion and closure. Uponterminal prognosis of a family member, care-givers struggle to assist the family members inpreparing for death, while coping with the im-pending loss and considering their own fu-ture. 22 The Hospice Experience Model of Care 17 conceptualizes this period as the timeto process life and relationship completionand closure, which is expected to begin fromthe time of diagnosis of a life-limiting illness.It describes seven domains of completionand closure: life affairs, relationships with thecommunity, personal relationships, experienc-ing love of self and others, accepting finality of life, finding meaning in life, and preparing forbereavement. 19 During this time of challenge,helping caregivers develop a sense of life com-pletion and closure in relation to the family member is expected to help caregivers experi-ence a greater sense of gain. Vol. 33 No. 4 April 2007 435 Benefits of Training Family Caregivers    A national study of bereaved and current hospice caregivers based on this theoreticalframework 18  validated the role of completionand closure in the caregiving experience.The authors found that caregivers who experi-enced higher levels of completionand closureexperienced higher levels of gain. 18 This study also found that the more comfortable care-givers felt with carrying out specific caregivingtasks, the higher level of gain they experi-enced. 18 This finding supported previous stud-ies documenting the need for educationaltraining and support for caregiv ers caring forindividuals at the end of life. 11,13,23 Takentogether, the theoretical model and previousresearch suggest that caregiver training on spe-cific caregiving tasks and on developmentaltasks of life completion and closure will posi-tively impact caregivers.The overall hypothesis for the CGLE pro-gram is that if family caregivers are able to ad-dress the aspects of completion and closure ina way that is meaningful to them, then thequality of their caregiving experience will bemore positive. The current study tests the spe-cific hypothesis that a program such as CGLEcan improve comfort with caregiving, senseof relationship closure, and improve caregivergain, controlling for caregiver characteristicsand stressors (Fig. 1). Methods  Procedures  The study received approval from the Insti-tutional Review Board at the University of South Florida’s Office of Research, Divisionof Research Compliance for the study of hu-man subjects (IRB #100397). The implementa-tion of the CGLE program had two phases. Inthe first phase, trainers from hospice andpalliative care, aging and human services,long-term care, academic, and faith-based or-ganizations attended one of five 5-day train-the-trainer workshops offered by The HospiceInstitute of the Florida Suncoast. Upon com-pletion of these workshops, each trainer wasthen expected to return to their community and offer the CGLE program to 50 family care-givers using the materials provided in theirtrain-the-trainer workshop. Continuity wasmaintained by requiring trainers to completerosters that indicated the number and lengthof sessions attended by each caregiver.In the second phase evaluated here, family caregivers who participated in the CGLE pro-gram were asked to complete pre- and post-sur- veys in addition to signing an anonymousroster. Caregivers chose an easily recalled ID(last four digits of their Social Security Num-ber or their birth date). This ID and theirtrainer’s ID number were used to link pre-and post-surveys. Sampling  Family caregivers ( n  ¼ 2,025) volunteered toparticipate in CGLE programs held by trainers( n  ¼ 142) who had attended a train-the-trainers workshop conducted by The HospiceInstitute of the Florida Suncoast. Trainersrepresented palliative care, aging and humanservices, long-term care, and academic andfaith-based organizations and came from 39states. They recruited and trained the initial Outcomes:Comfort withCaregiving TasksCompletion andClosureCaregiving Gain ••• Intervention:CGLE ProgramCaregivingStressor Caregiver Characteristics Fig. 1. Analytical model for CGLE program evaluation. 436 Vol. 33 No. 4 April 2007 Kwak et al.  group of caregivers between March 2003 and July 2004 (17 months). These family caregivers were invited to participate in the researchstudy as part of attending these CGLEprograms. Intervention: CGLE Program  The CGLE is a facilitated program of discus-sion, self-reflection, self-directed worksheets,guides for conversations between caregiversand care receivers, and inquiry that incorpo-rates nine modules based on The Hospice Ex-perience Model of Care developed by Eganand Labyak 17 (Table 1). The first module be-gins with understanding and validating theexperience of caring for someone in the last  years of life as one that impacts the physical,functional, emotional, relationship, practical,and spiritual aspects of life for care receiversand caregivers. During this session, the facilita-tor also assesses each participant’s experience with caregiving and readiness to address theprogram content. The second module intro-duces the transformative aspects of completionand closure experienced by not only the per-son who is ill but also the caregiver, and beginsto pose the question ‘‘What is important to youand the care receiver in relation to these as-pects?’’ The final seven modules cover aspectsof completion and closure: 1) life affairs, 2)relationships with community, 3) personalrelationships, 4) experience of love of self and love of others, 5) acceptance of the finality of life, 6) meaning of life, and 7) bereavement as further described inTable 1. 17,19 Each module provides guidance and oppor-tunity for caregivers to discuss what is most im-portant to them and their care receivers inrelation to the core content. The next step isto encourage caregivers to identify ways they could focus on what is most important, incor-porate meaningful aspects of caregiving, andfind comfort and purpose in the caregiving ex-perience. Approaches are discussed amongparticipants and suggestions are offeredthrough peer and professional guidance, com-munity caregiver resources, and participant handouts that facilitate family discussion, deci-sionmaking,andpersonal-relationshipclosure.Each module includes resources, groupexercises, discussion questions, self-directedactivities, additional readings, quality-of-lifeactivities, and the humanities through poetry,readings, music and videos, and guided activi-ties that caregivers can use themselves or in dis-cussion of these important issues with the carereceiver and other family members.The CGLE program aims to bring the bene-fitsof The Hospice Experience Model of Care 17 to caregivers before the initiation of full hospice services. That is, the sooner thesecaregivers are able to discuss, identify, and at-tend to the practical, social, relationship andspiritual experiences of both the care receiverand caregiver, the more opportunities they  will have to create for themselves positiveand often life-changing or transformativeexperiences.CGLE is designed as a flexible curriculumthe can be offered in various formats includinggroup or individual sessions. The most com-mon format is a series of five 90-minutesessions (7.5 hours) over a few weeks. Consis-tency in programs is assured by requiringcore content areas (Table 1) to be covered while being flexible with the format of thesessions to meet the needs of the caregivers. Measures  Trainers completed rosters with informationabout the length of each session of the pro-gram or individual training. Caregivers signedin at each session using these same rosters.The pre-surveys were administered at the endof the first session and the post-survey at theend of the last session. The timing of thepre-survey was in response to trainer concernsduring thepilot test thatadministeringa survey at the beginning would ‘‘turn off’’ participants.Since the total training was designed for an av-erage of 7.5 hours, there was a substantialamount of program (6 hours) offered betweenthe pre- and post-surveys, so we accommo-dated this concern although we expectedthat it had the potential to lessen the overalleffect.Detailed instructions were provided totrainers to respond to any possible questionsregarding the meaning and wording of survey questions, to limit possible errors in interpret-ing the instructions for self-administration of the surveys, missing data, and low responserate. The survey and instructions were vali-dated with caregivers who participated in a pi-lot test of the CGLE program conducted by The Hospice Institute of the Florida Suncoast  Vol. 33 No. 4 April 2007 437 Benefits of Training Family Caregivers   to ensure that the instructions and wording of the survey and rosters were easy to understandand self-administer.The pre- and post-surveys included threeoutcome measures: Comfort with Caregiving Scale, 23 Caregiver Closure Scale, 23 andCaregiver Satisfaction Scale (CSS). 24 The Com-fort with Caregiving Scale and CaregiverClosure Scale were based on two scales devel-oped and validated for a national needsassessment of caregivers 23  while the CSS was srcinally developed among general Table 1 CGLE Program Content  Module Core Content Caregiver Experiences and ActivitiesModule 1: The experienceof caregiving at the end of life  The experience of caregiving  Choice, advocacy, re-spect, and dignity   How caring affectscaregivers  Life as a caregiver  Stories of caregiving  Fears, wishes, concerns of caregivers  Helping care receiver with physical, emotional, andspiritual life transitions  ‘‘How caregiving has affected you’’ exercisesModule 2: Aspects of completion and closure for thecaregiver and the care receiver  Self-care redefined  What is most important to caregiver and carereceiver  Meaning and purpose  Completion andclosure  Creating positiveexperiences  Finding meaning and purpose in the experience  ‘‘What is important to me and my loved one?’’  Creating positive experiences by focusing on what isimportant   The experiences of relationship and life completionand closure  Reframing the experiences of caregiving  Conversation starters for difficult conversationsModule 3: Life affairs  Financial affairs  Legal affairs  Social affairs  Family discussions anddecisions  Future care needsissues and plans  Transfer of knowledge and/or responsibility from carereceiver to caregiver (or others such as family members,legal guardian) for financial matters, legal matters,and/or health care decision making  Respect for and advocacy of care receiver’s wishes at theend of life  Family discussions and planning for future care needs, wishes, and concerns.Module 4: Relationships with community   Employment   Social  Congregational  Organizational  Changes and/or closure in multiple formal social rela-tionships, including employment, business, organiz-ational, congregational, and educational  Expressing feelings regarding these changes such asregret, gratitude, appreciation, and loss  Maintain connections for care receiver and self Module 5: Personalrelationships  Communication andacceptance  Reconciliation inrelationships  Saying goodbye  Family and personallegacies  Life review  d facilitating the telling of ‘‘one’s story;’’ thetelling of ‘‘our story,’’ including the expression of meaning in care receiver’s life and relationships withcaregiver, family, and friends  Acceptance of transmission of knowledge and wisdomfrom care receiver  Reconciliation of conflicts with care receiver and otherpersonal relationships  Open, honest communication in important relationships  Expression of regret, forgiveness and acceptance, grat-itude and appreciation, affection and love with family and friends  Ways to ‘‘be present’’ with those who are important.Module 6: Experienceof love of self and loveof others  Acknowledging limita-tions/expectations  Forgiveness, worthiness,and acceptance  Unconditional love  Validation, recognition  Acknowledgement  d affirmation and appreciation of self as a caregiver and as an individual  Forgiveness d self-forgiveness, forgiveness to care re-ceiver, others, and a higher power/spiritual entity, andacceptance of forgiveness from care receiver, others,and spiritual entity/higher power  Worthiness d  worthy of giving and receiving love, of assistance with caregiving, of self-care  Acceptance of strengths, limitations, realistic expecta-tions, new role as caregiver and value of that role, of self beyond caregiving, of self as individual( Continued  ) 438 Vol. 33 No. 4 April 2007 Kwak et al.
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