Copyeditor: Timi Garduque Copyright B 2015 Wolters Kluwer Health, Ic. All rights reserved. Diae Vo Ah, PhD, RN Mary Spath, PhD, RN Adele Nielse, BSN, RN Betsy Fife, PhD, RN The Caregiver s Role Across the Boe Marrow Trasplatatio Trajectory K E Y W O R D S Adaptatio Boe marrow trasplat Caregivers Copig Life satisfactio Stress This is the author's mauscript of the article published i fial edited form as: Vo Ah, D., Spath, M., Nielse, A., & Fife, B. (2015). The Caregiver's Role Across the Boe Marrow Trasplatatio Trajectory. Cacer ursig. http://dx.doi.org/10.1097/ NCC.0000000000000242 Backgroud: Approximately 50 000 people udergo boe marrow trasplats (BMTs) each year worldwide. With the move to more outpatiet ad home care, family caregivers are playig a ever-icreasig role. However, there is little iformatio regardig the eeds ad well-beig of caregivers of idividuals udergoig BMT. Objective: The study purpose was to gai a better uderstadig of the BMT experiece across the trajectory from the perspective of the family caregiver. Methods: Qualitative iterviews were coducted with 15 family caregivers durig ad 4 moths after BMT. Iterviews were recorded, trascribed verbatim, ad aalyzed usig a cotet aalysis approach. Results: Ucertaity ad eed for more iformatio were 2 major uderlyig themes oted across the early BMT trajectory. Caregivers reported feelig overwhelmed ad jugglig multiple roles, icludig (a) iterpreter, which icluded obtaiig ad traslatig medical iformatio to their parter, family, ad social etwork; (b) orgaizer, which icluded arragig ad coordiatig medical appoitmets (pre- ad post-bmt) for the patiet, but also jugglig the eeds of immediate ad exteded family members; ad (c) cliicia, which icluded assessig ad idetifyig chages i their sigificat other, with may reportig that they had to be vigilat about or o top of ay chages. Caregivers also reported the most challegig aspects of their role were to be strog for everyoe ad fidig balace. Coclusios: Our results uderscore the uique eeds of family caregivers as a cosequece of BMT. Implicatios for Practice: A greater uderstadig of the adaptatio of caregivers will lead to the developmet of effective itervetios for families goig through BMT. Author Affiliatios: Departmet of Commuity ad Health Systems, Idiaa Uiversity School of Nursig, Idiaapolis. Fudig for this study was provided by the America Cacer Society (RSGPB- 05-012-01-CPPB, pricipal ivestigator: Dr Fife). The authors have o coflicts of iterest to disclose. Correspodece: Diae Vo Ah, PhD, RN, Departmet of Commuity ad Health Systems, Idiaa Uiversity School of Nursig, 1111 Middle Dr, Idiaapolis, IN 46202 (dvoah@iu.edu). Accepted for publicatio December 18, 2014. DOI: 10.1097/NCC.0000000000000242 The Caregiver s Role Cacer Nursig TM, Vol. 00, No. 0, 2015 1
Boe marrow trasplat (BMT) is a aggressive medical procedure that has bee icreasigly used to address lifethreateig illesses. I fact, more tha 50 000 BMTs are coducted aually worldwide, with approximately 18 000 takig place i the Uited States aloe. 1 Boe marrow trasplats are characterized by prologed hospitalizatios, itesive immuosuppressive therapies, ad potetially life-threateig complicatios. Boe marrow trasplat is a physically ad psychologically demadig treatmet, but it offers recipiets hope ad a fial attempt at a cure. The demads of the BMT ca be a sigificat source of stress ot oly for the recipiet, but also for the committed parter or spouse caregiver. 2 Advaces i treatmet ad cost-cotaimet measures have resulted i more care beig moved from the ipatiet hospital uit to the outpatiet settig ad home care. Caregivers, therefore, are playig a ever-icreasig role i the care of their parter across the BMT trajectory. 3 Although researchers have demostrated that committed parter/spouse caregivers are willig to do whatever it takes to care for their loved oes, 4 little is kow regardig the specific problems caregivers face across the BMT trajectory. The purpose of this article is to preset iterview data that will lead to a better uderstadig of the BMT experiece from the perspective of the committed parter/spouse caregiver durig the early BMT trajectory. Fidigs from this work will be used to gai greater isight ad uderstadig cocerig the complexity ad specific challeges of the caregiver role. I additio, based o the data, we coclude with recommedatios for itervetios aimed to promote positive adaptatio for these families. Backgroud Caregivers play a itegral role i the recipiet s recovery ad adaptatio after BMT. Researchers have foud that the lack of committed parter/spouse caregivers ca both limit the use of outpatiet stem cell trasplat services 5 ad impact survival outcomes for the BMT recipiet. 6,7 I a retrospective study, Foster ad colleagues 7 foud that patiets with a parter who stayed with them durig their allogeeic trasplat were 3 times more likely to be livig 1 year after trasplat. I a follow-up prospective study, these researchers validated the positive impact of the family caregiver durig hospitalizatio, otig a icrease i overall survival ad relapse-free survival for BMT recipiets who had the support of a i-hospital family caregiver compared with those who did ot have this support. 6 Take together, these fidigs reaffirm the importat role the caregiver has o outcomes across the BMT trajectory. Caregivers, however, may experiece sigificat distress. 2,8Y11 I fact, multiple studies have idetified that committed parter/ spouse caregivers ofte have higher levels of distress tha do their recipiet parters. 12,13 Researchers have also oted that committed parter/spouse caregivers ofte experiece icreased levels of depressio ad axiety 9,11 ad less dyadic satisfactio 9,12 ad that caregivig may impact their ability to work, resultig i fiacial cocers. 14 However, few studies have qualitatively explored the specific challeges of the trasplat experiece from the perspective of the caregiver, 3,15 ad researchers have idetified the eed for more research to uderstad the quality of life of caregivers of cacer patiets. 16 Stetz ad colleagues 15 were amog the first researchers to qualitatively explore the eeds of caregivers of BMT recipiets durig treatmet. These authors idetified the eed for urses to provide iformatioal support ad promote self-care amog committed parter/spouse caregivers durig BMT. Wilso ad colleagues 3 also focused o uderstadig the experiece of the caregiver durig ipatiet hospitalizatio for BMT. These researchers foud that caregivers experieced a great deal of ucertaity durig hospitalizatio, describig the experiece as ridig o a rollercoaster i the dark. Although iformative, these studies failed to address the etire BMT trajectory, specifically, the actual eeds of the caregiver upo returig home. This is importat because the BMT process ofte results i may log-term adverse effects such as graft-versus-host disease, which ca compromise quality of life ad result i the eed for ogoig, log-term caregivig. I additio, a uderstadig of the experieces of the caregiver role across the etire BMT trajectory is eeded to idetify appropriate itervetios to assist caregivers i their role. 11 The mai objective of this article is to report data from the perspective of the committed parter/spouse caregiver that will lead to a better uderstadig of the BMT experiece across the early trajectory. Methods DESIGN A qualitative descriptive desig was utilized to explore the pheomeo. 17 Participats i this study were part of a larger descriptive study to examie adaptatio of patiets ad their families prior to ad up to 12 moths after hospitalizatio for BMT. 2 The study was approved by the cacer ceter review committee ad the uiversity istitutioal review board. PROCEDURE A coveiece sample of committed parter/spouse caregivers of BMT patiets from the larger study was recruited. Eligible participats icluded spouses ad/or parters (sigificat others) who were livig with the BMT recipiet prior to trasplat ad who would assume the primary caregiver role durig the trasplat trajectory. Iterviews were coducted at 2 time poits: durig hospitalizatio (T1) ad 1 to 4 moths after hospitalizatio (T2). Iterviews were guided by a semistructured questioaire, coducted over the phoe, ad tape recorded. Data were trascribed verbatim, ad the accuracy of the trascripts was verified by the research staff. Durig hospitalizatio (T1), the focus of the iterview was to uderstad the experiece of the pre-bmt ad acute care hospitalizatio stay from the perspective of the caregiver. The iitial iterview bega with the iterviewer askig the caregiver to relay their story prior to ad durig the acute care phase of the BMT. Three ope-eded, probig questios were also used to guide this 2 Cacer Nursig TM, Vol. 00, No. 0, 2015 Vo Ah et al
T1 iterview: (1) How did you ad your parter decide o havig a BMT? (2) What has bee the most challegig ad difficult part of the waitig ad preparatio time? (3) What has bee the most difficult part of the hospitalizatio period o you ad your family? The secod iterview occurred 1 to 4 moths after hospitalizatio (T2), oce the BMT recipiet had successfully retured to the home settig. The goal of this iterview was agai to allow the caregiver the opportuity to describe their story, icludig idetifyig the patiet s eeds ad recovery ad their experiece as a caregiver to a spouse/sigificat other who had udergoe a BMT. Probig questios icluded the followig: (1) What has bee the most challegig ad difficult part of the posttrasplat period? (2) What, if ay, positive experiece or chages have occurred sice becomig a caregiver? ad (3) What, if ay, specific thigs could the trasplat team do to make this time less distressig for families? At both time poits, we allowed the participats time to reflect o their experieces ad had them provide examples wheever possible. Additioal probig questios were used as eeded to clarify resposes. The iterviews with caregivers lasted a average of 45 miutes. Data Aalysis Data were aalyzed to get a sese of the experieces of BMT families from the perspective of the committed parter/spouse caregiver. A covetioal cotet aalysis approach was used. 17,18 I this type of aalysis, research questios rather tha a theoretical framework drive the aalysis. 18 The advatage of this approach is that the kowledge geerated from it is based o participats uique perspectives ad grouded i the actual data. 18(p1279) Commo themes across all the participats data were idetified ad orgaized ito clusters ad categories. Full descriptios of the commo themes of the experiece were developed. All data were aalyzed idepedetly by 2 team members ad compared, ad iterpretatios were agreed upo. The raw data ad subsequet themes were preseted to a third team member for cosesus. This article describes our predomiat fidigs. Results Sample Descriptio A total of 15 committed parter/spouse caregivers completed the first iterview durig hospitalizatio (T1) ad 9 caregivers who were 1 to 4 moths after discharge completed a secod follow-up iterview (T2). We were uable to follow up with 6 of the origial 15 caregivers because of severe illess ad/or death of the BMT recipiet. Table 1 displays the demographic iformatio of the sample of caregivers as well as the type of trasplat for the recipiet. All of the caregivers idetified themselves as white. Most of the caregivers were female, employed full time, ad had a college degree. The age of the caregivers raged from 24 to 66 years at both time poits, with a mea age of 47 years (Table 1). Approximately oe-third of the committed parter/spouse caregivers iterviewed at T1 had 1 to 3 childre youger tha 18 years livig i the home. Table 1 & Descriptio of the Caregiver Sample Durig Hospitalizatio T1 ( = 15) Mea (SD) Pretrasplat Phase Posthospitalizatio T2 ( = 9) Mea (SD) Age, y 47.7, 12.3 47.5, 13.6 (%) (%) Geder Female 9 (60) 6 (67) Male 6 (40) 3 (33) Type of relatioship Parter/spouse 14 (93) 8 (89) Sigificat other 1 (7) 1 (11) Childre i the home Yes 5 (33) 2 (22) No 10 (67) 7 (78) Educatio High school 3 (20) 3 (33) graduate or less Vocatioal/techical 5 (33) 2 (22) or some college Four-year college 2 (13) 1 (11) graduate Graduate 5 (33) 3 (33) Employmet Full time 9 (60) 5 (56) Part time 1 (7) 1 (11) Retired 3 (20) 2 (22) Homemaker 2 (13) 1 (11) Type of boe marrow trasplat (recipiet) Autologous 12 (80) 7 (78) Allogeeic 3 (20) 2 (22) I a effort to uderstad their trasplat story we bega each iterview by askig the committed parter/spouse caregiver how they came to the decisio to proceed with a BMT. I doig so, it was our goal to lear more about the pretrasplat experiece ad decisio makig that wet ito proceedig with the potetially life-alterig trasplat experiece. From these iterviews, it became very clear that there was a overwhelmig sese of ucertaity related to the decisio to proceed with a BMT. Two overridig themes emerged as most saliet i decidig to proceed with trasplat: coclusio that there was o other optio ad hope for a future. Coclusio That There Was No Other Optio May caregivers said that they did ot really have ay other optio but to proceed with havig the trasplat. This setimet was The Caregiver s Role Cacer Nursig TM, Vol. 00, No. 0, 2015 3
T2 mostly expressed by caregivers who believed that all other treatmet optios had bee exhausted. As oe succictly stated, They told us, he had a 40% chace that it might work, but we did t care because otherwise he had oe. These caregivers expressed cofidece ad trust i their physicias ad believed that the BMT was the ext step i the treatmet process. Oe reflected that they more or less told us that this is what we really ought to do. Caregivers stated that iformatio about their loved oes disease, the recipiet s curret health status, ad limited treatmet optios were all factors that led them to the coclusio that there was o other optio but to proceed with the BMT. Hope for a Future For some of the families, the BMT was also viewed as a importat source of hope for a future. Oe caregiver explaied that the BMT was the best optio because it was the closest thig to a cure that you ca do. Iterestigly, regardless of prior treatmet history, curret health status of their parter/spouse, ad the kowledge that the treatmet used i BMT was quite arduous, most of the caregivers iterviewed ackowledged that this treatmet represeted the best hope for a future together. Uderlyig Themes Across the BMT Trajectory: Ucertaity ad Need for Iformatio Our iterviews idetified ucertaity ad the eed for more iformatio as 2 major ad uderlyig themes across the BMT trajectory. Table 2 provides iterview excerpts that elucidate these themes. Ucertaity Durig the prehospitalizatio phase, caregivers said that the waitig ad ot kowig had really take a toll o them. Oe explaied, We dreaded it, but we were ready to get it doe; doe ad over with because we kew we had to do it. Aother caregiver described the time durig the trasplat as It has really bee scary. You do t kow if he s goig to get worse or if you re goig to lose him. May caregivers described the BMT hospitalizatio as beig o a roller coaster. Oe-miute thigs would seem fie, ad the the ext, they could chage drastically. This ucertaity durig trasplat was idetified by a umber of caregivers as the worst part. Oe stated, It s really upredictable. You just do t kow what s goig o from oe momet to the ext. Aother expressed apprehesio posttrasplat whe his spouse was fially released to home: You just kid of wait to see what if ay bad stuff will happe ext. Ucertaity about the outcome of the BMT was evidet at each phase i the BMT trajectory, eve after returig home. Table 2 provides additioal iterview excerpts regardig the types of ucertaities experieced by caregivers prior to, durig, ad post-bmt. Need for Iformatio Although most of the caregivers thought the healthcare team had explaied the BMT process ad what to expect; few felt fully prepared for the experiece. Oe reported, It was harder tha I thought it would be. May caregivers idetified accurate ad timely iformatio as essetial to reducig their fears ad ucertaities. I fact, may praised the medical ad ursig staff for keepig them iformed of chages durig their loved oes Ucertaity Table 2 & Excerpts from Caregiver Iterviews Regardig Specific Areas of Ucertaity Prior to, Durig, ad Posthospitalizatio Prior to Hospitalizatio ( = 15) Hospitalizatio ( = 15) Posthospitalizatio T2 ( = 9) Just the ukow ad the axiety of ot kowig what s goig to happe ad ot really uderstadig everythigi Is he goig to survive? ad I was thikig you kow, am I goig to have a husbad? Are we goig to be able to have kids? This is just drivig us isae because there s o way to pla. You ca t pla for tomorrow, let aloe ext week or ext moth. That has drive me absolutely crazy. The big picture, it s just overwhelmig ad staggerig, imagiig him ot beig here. So I choose ot to ever go there. You kow I just, basically I do t have the emotioal wherewithal right ow to go there. So I do t. We ve ever bee through this before so we eed to be told that this is ormal (medical symptoms/complicatios), ad this is, this is expected. The waitigi tryig to see if she s i remissioi so the waitig, just waitig ad waitig ad waitig ad waitigi All of these bills keep o comig, ad I m like Oh my God, how am I goig to pay them? I kept havig ightmares that I d get up, ad she would be like, maybe ot there, or maybe she would t be sleepigi I just kept freakig out that she would die while she was sleepig, so I kept goig i there every ight ad like listeig to her breathe for a little while. 4 Cacer Nursig TM, Vol. 00, No. 0, 2015 Vo Ah et al
T3 hospitalizatio. It really helps that they keep you iformed o what s goig o. That makes a big differece. They do t leave you i the darki you are ot just aother umber. They treat you like you re somebody, like they really care, stated a male caregiver. Aother expressed the same setimet, statig I mea every time I eeded help, you kow, with aythig I would call there, ad my questios were aswered. Although most of the caregivers expressed satisfactio with the quality of iformatio durig BMT hospitalizatio, some expressed the eed to have more iformatio before ad after hospitalizatio to improve cotiuity of care. Table 3 shows some of the iformatio eeds idetified by caregivers based o their multiple roles prior to, durig, ad after hospitalizatio. Caregiver Roles Caregivers reported feelig overwhelmed with jugglig multiple roles ad resposibilities. Based o the iterviews, we classified these roles ito 3 major categories: (a) iterpreter, which icluded obtaiig ad traslatig medical iformatio to the patiet, family, ad social etwork; (b) orgaizer, which icluded arragig ad coordiatig medical appoitmets (before ad after BMT) for the patiet ad also maagig the eeds of immediate (especially childre) ad exteded family members ad frieds; ad (c) cliicia, which icluded assessig ad idetifyig chages i their parter, with may reportig that they had to be vigilat about or o top of ay chages i additio to providig care. Iterpreter Oe key role that the caregiver performed was that of a iterpreter, which icluded obtaiig, iterpretig, ad dissemiatig medical iformatio to their parter, family, ad social etwork. Ofte caregivers were elisted to keep track of the medical care ad advocate for the patiet. For example, a caregiver explaied that her husbad wated her to be there to help him uderstad his medical care: He wats some aswersi he wats me to get the aswers because sometimes he could t really remember or sometimes he could t uderstad. So aytime they told him somethig he wated me to come up there ad liste to it ad write it dow so that I could the tell him. Caregivers also stated that they were resposible for relayig iformatio to other family members ad frieds. The eed to keep everyoe iformed was ofte idetified as difficult ad a source of sigificat distress for the caregiver. Orgaizer Caregivers reported that they felt primarily resposible for beig the orgaizer, which icluded arragig ad coordiatig medical appoitmets (before ad after BMT) for the patiet as well as meetig the eeds of immediate family members (especially Table 3 & Educatioal Needs Prior to, Durig, ad Posthospitalizatio IterpreterVmedical iformatio OrgaizerVprovidig support to patiet ad others Prior to hospitalizatio ( = 15) Hospitalizatio (=15) Posthospitalizatio T2 ( = 9) Type of trasplat Treatmet pla Expected symptoms ad adverse effects Iformatio regardig settig up olie care pages Hospital orietatiovsupport ad rules of the boe marrow trasplat uit Iformatio regardig fiacial cosideratios Implicatios of laboratory values Maagig symptoms ad adverse effects Iformatio regardig key time poits durig treatmet Psychosocial support for caregiver; available resources i commuicatig with family members about patiet coditio Further iformatio regardig preparatio for patiet retur home Implicatios of laboratory values Maagig symptoms ad adverse effects Iformatio regardig seekig medical treatmet Need for follow-up appoitmetsvaddressig schedulig ad trasportatio Support ad educatio i maagig patiet/family duties, routies, ad resposibilities whe patiet returs home Psychosocial guidace regardig commuicatio with patiet ad family about upcomig boe marrow trasplat ad preparatios CliiciaVprovidig care Effective had washig Isolatio procedures Medicatio admiistratiovoral ad sometimes itraveous solutios Cetral-lie dressig chage Oral hygiee practices Iformatio about assistig patiet with activities of daily livig Cetral-lie maiteace The Caregiver s Role Cacer Nursig TM, Vol. 00, No. 0, 2015 5
childre) ad also exteded family members ad frieds. As might be expected, male caregivers expressed more cocers regardig maitaiig the household. As oe explaied, It s like aother job owi I mea [she] absolutely ra the housei she rus a tight ship. The house was immaculate. She keeps everythig cleaed up, all the time jockeyig the kids aroud, so that is the hardest thig without her there. Aother male caregiver explaied that it was a sigificat realizatio for him how much he had couted o his wife. He stated, You do t realize how much somebody was doig util they are t there, ad you have to do it all. Cliicia The caregivers discussed at legth that they felt resposible for assessig ad idetifyig chages i the patiet, with may reportig that they had to be vigilat regardig or o top of chages i their parter s status. Iterestigly, caregivers idetified the eed to be vigilat about chages i health status both durig hospitalizatio ad after returig home. Oe male caregiver adamatly recommeded that you really have to have someoe watchig out for you, ad askig [questios]. He truly believed that he was partly resposible for ruig her medical care. This caregiver was ot aloe i his iterpretatio. May said that they seemed to have to take a leadership role i askig questios ad advocatig for their parter. Oe reported, I absolutely feel like youhavetobehere[atthetrasplatceter]i I ca t go home, I ca t go home to get sleepi I have t bee to work for days. This strog sese of resposibility brought with it some guilt ad axiety whe the caregiver could ot be at the hospital all the time or as much as he/she had wated. All of the caregivers relayed their cocers regardig beig resposible for providig cliical care. May reported worries about providig cetral lie site care at home both before ad after the BMT. For example, oe stated, every step of it seems so dire because mistakes could lead to a ifectio. Caregivers foud that they were costatly questioig themselves. For example, oe stated she repeatedly asked herself, Are you doig it right? Are your hads clea? May also expressed fear about this ew techical role, icludig statemets such as It scared mei how much that the resposibility was o me, ad if I did somethig wrog would I hurt him? Aother female caregiver stated, I had to be a urse to him. I hated it because I was so afraid that I would screw somethig up. The weight of this resposibility was compouded whe istructios were uclear or whe procedures chaged. Caregivers also expressed cocer that providig cliical care was at times upsettig for their parter. For example, oe said that givig shots to her husbad was humiliatig for him, which i tur was very distressful for her. Greatest Challeges I this study, we were also specifically iterested i the caregivers perceptios of the greatest challeges faced durig BMT. Based o their reports, the most challegig aspects of their role across the BMT trajectory were categorized ito 2 themes that we labeled: beig there ad beig strog for everyoe ad fidig balace. Our goal was to uderstad the challeges of BMT caregivers so that we could use this iformatio to develop evidece-based caregiver itervetios. Beig There ad Beig Strog for Everyoe Caregivers reported that it was very importat to them that they stay strog ad ot show their parter their cocer ad fears. As oe said, If somethig worries me I will ot tell him because I do t wat him to have that extra stress. The caregivers also discussed how hard it was for them to see their loved oe go through the treatmet. For example, oe shared how difficult it was seeig her husbad i pai, describig it as follows: It was like somebody put a kife to you ad just kept turig it. I kew how much he was hurtig, ad I could t cry i frot of him, ad I wo t because I do t wat him to feel how it affected mei but it shook me up. May of the caregivers similarly reported that they had to hide their emotios from others, ad they could ot let their true feeligs show through. Caregivers with childre additioally expressed sigificat cocer regardig their adequacy as a paret, specifically their availability i meetig both the day-to-day demads ad the emotioal eeds of their childre without their spouse. For example, 1 male caregiver idetified his biggest cocer was paretig his childre ad the impact the BMT was havig o them. He explaied that they were used to their mother ad that she could deliver thigs to them that I ca t I or that I m ot used to. A female caregiver stated that the diagosis of cacer had had a sigificat impact o her childre. It s bee a really big chage i their worldi ad very usettlig. The caregivers with childre clearly expressed that the BMT had had a impact o the etire family, ad they felt they eeded more resources ad guidace to help their childre through this time. Fidig Balace May of the caregivers reported that with the absece of their sigificat other durig trasplat ad with their icreasig roles, it was harder to have some balace i their life. As oe reported, You re ot really thikig about yourself aymore. It s just more; all of your attetio is o the other perso. Aother caregiver became emotioal, explaiig I have to go to the hospital all the time, ad I still have to work, ad the I feel guilty if I do t come, so that s bee hard. I do t get to do the thigs that help me. May of the caregivers were overwhelmed with the demads of ot oly carig for their parter but beig the primary ad ofte sole perso coordiatig other family resposibilities. For example, oe reported, You kow, I have bee livig uder a lot of stress. It seems like life is kid of evaporatig ito doctors ad treatmets. Positive Fidigs Social Support Caregivers idetified social support as a ivaluable resource for copig with the stressors across the BMT trajectory. Almost all of the caregivers idetified family or very close frieds as essetial to 6 Cacer Nursig TM, Vol. 00, No. 0, 2015 Vo Ah et al
meetig the demads of caregivig. Family members ad/or frieds played a importat role as beig persos they could cofide i as well as sources of some respite. For example, 1 caregiver stated, I d say more tha aythig you eed family there, eve if it is to come i ad outi at least give you a little break or somebody to talk to. Others idetified the support of the urses or other BMT trasplat families as helpig them deal with the stressors of BMT. Positive Growth Throughout this demadig experiece, almost all of the caregivers said that the experiece with a life-threateig illess had chaged them. May foud that, although they would ot wish the BMT experiece o others, they had i fact foud some beefits from havig goe through it. For example, a caregiver explaied, The gift of crisis is that it forces you to sharply focus o what is importat ad what is t, whether it s o relatioships, values, what you wat your life to be about. It forces you to do it because you do t kow what the future will brig. I additio, may foud that their relatioships with their parter had gotte stroger: I would say we talk morei we liste more. Aother caregiver relayed, I thik goig through this, it makes people kid of wake up ad appreciate thigs a little better, appreciate a lot of thigs more. You do t take thigs for gratedi. Others idetified the eed to reorder their lives. For example, 1 caregiver stated, I thik we re goig to step back ad kid of ejoy life. Do t keep beig o the ru. I mea, there s always aother day, adyoukowwetrytodotoomuchi1day,adithikit s goig to help us dow the road a lot. Aother explaied that ow that they were through the trasplat they could restart their lives ad pla for their future together, icludig startig a family. Still others foud that the experiece had improved their faith, with oe statig, I thik that this has brought us closer to God. I fact, most expressed that their trust i the Lord had helped them cope with the stress of BMT. Discussio The purpose of this article is to preset data from the perspective of the committed parter/spouse caregiver that will build the sciece ad uderstadig of the BMT experiece across the treatmet trajectory from prehospitalizatio to up to 4 moths after hospitalizatio. Caregivers agreed that the decisio to proceed with BMT was based o their coclusio that there was o other optio, ad/or it provided the best hope for a future together. Because of the ature ad complexity of BMT, caregivers reports revealed 2 mai uderlyig themes: ucertaity ad eed for iformatio, which cut across all phases of the BMT trajectory. Caregivers idetified livig with the ucertaity as the hardest part of the BMT process. These fidigs build o a previous study by Wilso ad colleagues, 3(pE15) who reported that spouses described the ucertaity durig BMT hospitalizatio as ridig a rollercoaster i the dark. Our study adds to the literature i this area ad documets that the feeligs of ucertaity do ot dimiish after discharge ad that the cocers regardig the parter s health remai after returig home. Caregivers emphasized that iformatio was crucial to address ucertaity throughout the BMT trajectory. This suggests that it is imperative that urses ot oly assess the patiet s learig eeds, but also explore the caregiver s eeds at each phase of the treatmet trajectory. Researchers have foud that caregivers are istrumetal i the outcomes of BMT recipiets. 7 I additio, studies have show that providig adequate ad timely iformatio may ehace feeligs of security 15 ad persoal cotrol, which i tur has bee show to reduce emotioal distress i caregivers over the acute phase of BMT. 2 These fidigs also support the eed for developig a comprehesive cacer care pla that esures smooth trasitios ad improves the quality of outcomes for cacer survivors ad their families. 19 Caregiver Roles Caregivers reported jugglig multiple roles, which were categorized ad labeled as iterpreter, orgaizer, ad cliicia. Similar results were foud by Wilso ad colleagues, 3 who foud that the caregiver role ofte evolved from simply beig at the spouse s side to providig emotioal support ad physical care durig the BMT hospitalizatio. We also oted that the demads of the caregiver role were complicated by the eed to be strog for everyoe ad ofte resulted i the caregivers havig difficulty i fidig balace i their lives. The fidigs described here are similar to what Skaff ad Pearli 20 refer to as role egulfmet, that is, whe the roles oe assumes ad the demads of those roles profoudly alter the orgaizatio of daily life ad may eve reshape self-cocept. The loss of self ca have a sigificat impact o the caregiver s well-beig. Researchers have foud that caregivers report cliically sigificat levels of distress, axiety, depressio, ad poor quality of life. 2,8Y11 O the other had, Fife ad colleagues 2 reported that those caregivers of BMT recipiets who had greater feeligs of persoal cotrol, a greater sese of spiritual coectedess, less disruptio i their lives, ad less use of avoidace copig had sigificatly less distress tha did their couterparts. Take together, itervetios to ehace copig strategies for caregivers focusig o icreasig perceptios of persoal cotrol, ehacig spiritual coectedess, ad efforts to maitai routie may be most advatageous. Impact o the Family This research also clearly idetified that the BMT had a impact otheetirefamily.caregiversreportedoeoftheirgreatestcocers to be the impact the BMT had o their childre. Researchers have show that childre of cacer patiets may experiece both behavioral ad emotioal disturbaces durig the paret s illess. 21 Specifically, a recet study of childre of BMT recipiets foud that emotioal distress remaied above the orm throughout the BMT trajectory. Furthermore, emotioal distress was sigificatly lower for childre who experieced less disruptio withi the family structure such as chages i roles, routies, ad patters i family fuctioig. 22 Therefore, while it is ofte difficult, efforts to maitai family routies ca help provide a sese of ormalcy for The Caregiver s Role Cacer Nursig TM, Vol. 00, No. 0, 2015 7
childre of patiets receivig a BMT. 23 Future research eeds to focus o itervetios to support the etire family across the BMT trajectory. Upo reflectio ad after the BMT, caregivers also ackowledged that the experiece had had some positive aspects. Caregivers were quick to idetify the importat role that family ad frieds played i providig both emotioal ad istrumetal support. I fact, they stressed that this was a essetial copig resource. I additio, some caregivers believed that this experiece had ehaced their spirituality ad believed their faith was stroger for havig come through this life-chagig evet. Similar fidigs were oted by Fife ad colleagues, 2 who reported that those caregivers who had a greater sese of spiritual coectedess also had lower levels of emotioal distress. Ad fially, caregivers reported that they were more appreciative of life ad/or had reordered their life to focus more o thigs that really mattered, such as family. This type of growth after a life-threateig experiece such as cacer has bee oted by survivors. 25 This fidig of beefits or the ability to draw o the positive aspects of a traumatic experiece has bee liked to overall improvemet i quality of life of cacer survivors ad their families. 25 Although these data offer may isights ito uderstadig the BMT experiece across the early trajectory from the perspective of the committed parter/spouse caregiver, the study was limited by its sample characteristics. Most of the caregivers were wome. Recet research suggests that childre i families where the BMT recipiet was female (mother) resulted i greater levels of emotioal distress. 22 Further research with larger samples that have equal umbers of male ad female caregivers is eeded to explore the impact of this o copig i BMT families. I additio, future logitudial, prospective, mixed-methods studies should be coducted to explore copig ad adaptatio of BMT families logterm. Quatitative studies have demostrated sigificat levels of distress eve 1 year after trasplat 2 ; however, this work ofte failed to idetify the cause of the distress. Future studies that explore these causes will improve our uderstadig ad lead to itervetios to improve outcomes ad quality of life of BMT patiets, caregivers, ad families. Coclusio Overall, these data provide further evidece of the sigificat ad broad impact of BMT across the treatmet trajectory as perceived by the caregiver. Fidigs idicate that maagig ucertaity through educatio ad support is essetial for copig i the early phases of the BMT trajectory. The caregivers are tasked with multiple roles ad resposibilities ad will eed iformatioal, emotioal, ad istrumetal support to effectively cope with the complexity ad demads of carig for their spouse or sigificat other. Further logitudial research is eeded to clearly idetify itervetios that may be effective i supportig copig after BMT. Refereces 1. Pasquii M, Wag Z. Curret use ad outcome of hematopoietic stem cell trasplatatio: CIBMTR Summary Slides, 2013 Web site. http://www.cibmtr.org. Accessed September 12, 2014. 2. Fife BL, Moaha PO, Aboour R, Wood LL, Stump TE. Adaptatio of family caregivers durig the acute phase of adult BMT. Boe Marrow Traspl. 2009;43:959Y966. 3. Wilso ME, Eilers J, Heerma JA, Millio R. The experiece of spouses as iformal caregivers for recipiets of hematopoietic stem cell trasplats. Cacer Nurs. 2009;32(3):E15YE23. 4. Williams LA.Whatever it takes:iformal caregivig dyamics i blood ad marrow trasplatatio. Ocol Nurs Forum. 2007;34(2):379Y387. 5. Frey P, Stiso T, Sisto A, et al. Lack of caregivers limits use of outpatiet hematopoietic stem cell trasplat program. Boe Marrow Traspl. 2002; 30(11):741Y748. 6. Foster LW, McLella LJ, Rybicki LA, Dabey J, Copela E, Bolwell BJ. Validatig the positive impact of the i-hospital lay care-parter support o patiet survival i allogeeic BMT: a prospective study. Boe Marrow Traspl. 2013;48:671Y677. 7. Foster LW, McLella LJ, Rybicki LA, Sassao DA, Hsu A, Bolwell BJ. Survival of patiets who have udergoe allogeic boe marrow trasplatatio: the relative importace of i-hospital lay care-parter support. J Psychosoc Ocol. 2004;22:1Y20. 8. Eldredge DH, Nail LM, Maziarz RT, Hase LK, Ewig D, Archbold PG. Explaiig family caregiver role strai followig autologous blood ad marrow trasplatatio. J Psychosoc Ocol. 2006;24(3):53Y74. 9. Lager SL, Abrams JA, Syrjala KL. Caregiver ad patiet marital satisfactio ad affect followig hematopoietic stem cell trasplatatio: a prospective logitudial ivestigatio. Psychoocology. 2003;12:239Y253. 10. Lager SL, Yi JC, Storer BE, Syrjala KL. Marital adjustmet, satisfactio ad dissolutio amog hematopoietic stem cell trasplat patiets ad spouses: a prospective, five-year logitudial ivestigatio. Psychoocology. 2010;19: 190Y200. 11. Wulff-Burchfield EM, Jagasia M, Savai BN. Log-term follow-up of iformal caregivers after allo-sct: a systematic review. Boe Marrow Traspl. 2013;48: 469Y473. 12. Bishop M, Beaumot JL, Hah EA, et al. Late effects of cacer ad hematopoietic stem cell trasplatatio o spouses or parters compared with surviovrs ad survivor matched cotrols. JCliOcol. 2007;20(11): 1403Y1411. 13. Bishop M. Psychosocial sequelae of hematopoietic cell trasplatatio i survivors ad caregivers. Biol Blood Marrow Trasplat. 2009;15:29Y32. 14. Meeha KR, Fitzmaurice T, Root L, Kimtis E, Patchett L, Hill J. The fiacial requiremets ad time commitmets of caregivers for autologous stem cell trasplat reipiets. J Support Ocol. 2006;4:187Y190. 15. Stetz KM, McDoald JC, Compto K. Needs ad experieces of family caregivers durig marrow trasplatatio. Ocol Nurs Forum. 1996;23(9): 1422Y1427. 16. Kim Y, Give BA. Quality of life of family caregivers of cacer survivors. Cacer. 2008;112:2256Y2568. 17. Sadelowski M. What happeed to qualitative descriptio? Res Nurs Health. 2000;23(3):334Y340. 18. Hsieh H, Shao S. Three approaches to qualitative cotet aalysis. Qual Health Res. 2005;15(9):1277Y1288. 19. McCabe M, Bhatia S, Oeffiger KC, et al. America Society of Cliical Ocology statemet: achievig high quality survivorship cacer care. JCli Ocol. 2013;31(5):631Y640. 20. Skaff MM, Pearli LI. Caregivig: role egulfmet ad the loss of self. Gerotologist. 1992;32(5):656Y664. 21. Osbor T. The psychosocial impact of paretal cacer o childre ad adolscets: a systematic review. Psychoocology. 2007;16:101Y126. 22. Spath M, Fife BL, Moaha P, et al. Childre s emotioal adaptatio to paretal BMT. Boe Marrow Traspl. 2013;48:135Y140. 23. Houldi A. A qualitative study of caregivers experieces with ewly diagosed advaced colorectal cacer. Ocol Nurs Forum. 2007;34(2):323Y330. 24. Huizega HM, va der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers JE. Psychosocial cosequeces for childre of a paret with cacer: a pilot study. Cacer Nurs. 2004;26:195Y202. 25. Atoi MH, Lehma JM, Klibour KM, et al. Cogitive-behavioral stress maagemet itervetio decreases the prevalece of depressio ad ehaces beefit fidig amog wome uder treatmet for early-stage breast cacer. Health Psychol. 2001;20(1):20Y32. 8 Cacer Nursig TM, Vol. 00, No. 0, 2015 Vo Ah et al
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