Female caregivers of stroke survivors: coping and adapting to a life that once was.

Link to this page ABSTRACT espite the prevalence of women caring for stroke survivors! relativel" little research has focused specificall" on the e#perience and needs of informal femalecaregivers of stroke survivors. Therefore! the purpose of this stud" was to descri$e the e#perience of female caregivers who care for an adult famil" mem$er who has e#perienced a stroke within the previous "ear using a %ualitative methodolog". A sample of &' female caregivers of stroke survivors completed a demographic form and responded to open( ended written %uestions e#ploring their e#periences as caregivers and how the" coped with changes in their lives during the first "ear after the stroke. Four concepts emerged from the data: losing the life that once was! coping with dail" $urdens! creating a new normal! and interacting with healthcare providers. Findings suggest that female caregivers of stroke survivors grieve the life that the" once shared with the stroke survivor and struggle to cope with multiple famil" and work demands while tr"ing their $est to interact with healthcare providers to attain the $est possi$le care for their loved ones. Recogni)ing the uni%ue challenges of female caregivers of stroke survivors ma" help nurses provide $etter support and resources to meet their needs. ********** +reliminar" data from the Centers for isease Control and +revention reports that stroke is the fourth leading cause of death in the ,nited States! after heart disease! cancer! and lower respirator" disease -Centers for isease Control and +revention! ./001. Appro#imatel" 023 of persons e#periencing a stroke die within the first "ear4 however! most survive the original traumatic event with var"ing degrees of emotional! ph"sical! and cognitive disa$ilities -Llo"d( 5ones et al.! ./0/1. 6t is estimated that a$out 7/3 of stroke survivors are discharged home and live for at least 8 "ears after e#periencing a stroke -9ational Famil" Caregiver Association! .//24 Rosamond et al.! .//21! resulting in 8.8 million stroke survivors in the ,nited States with! over one million e#periencing significant long(term ph"sical disa$ilities. Stroke patients ma" have profound functional limitations! such as mo$ilit" pro$lems! cognitive impairments! urinar" incontinence! speech and communication difficulties! and personalit" changes. These impairments ma" last indefinitel"! re%uiring lifelong caregiver assistance. :ven with paid formal

assistance -i.e.!home health aide1! famil" mem$ers are fre%uentl" faced with a multitude of stressors ranging from coordination of medical care to .&(hour care of their loved one. Studies have consistentl" shown that famil" caregivers are at risk for developing ph"sical and emotional pro$lems -Berg! +alomaki! Lonn%vist! Lehtihalmes! ; <aste! .//84 =reen ; <ing! .//24 Schlote! Richter! Frank! ; >allesch! .//'4 Ski ; ?@Connell! .//24 van :#el! <oopmanschap! van den! Brouwer! ; van den Bos! .//81. The link $etween stress and ph"sical health! especiall" cardiovascular disease! has $een well documented in the general population as well as in informal caregivers. For e#ample! in one stud"! investigators reported an almost .(fold increased risk of coronar" heart disease in caregivers of ill spouses -Lee! Coldit)! Berkman! ; <awachi! .//A1. >omen clearl" $ear the $urden of informal caregiving in our societ" with 8B3( 283 of caregivers $eing women -Famil" Caregiving Alliance! .//A1. The economic value of informal caregiving that women provide in the ,nited States each "ear is estimated to $e C0&7 $illion to C077 $illion -Amo! .//.14 however! these values do not take into account financial losses related to female caregivers reducing their emplo"ment commitments or leaving paid work to provide unpaid care -Berg ; >oods! .//B1. Furthermore! female caregivers spend 8/3 more time providing care than their male counterparts -Famil" Caregiving Alliance! .//A1 although women comprise &'.B3 of the total la$or work force in the ,nited States -,.S. epartment of La$or! ./0/1. Studies focusing on caregivers of individuals with dementia have found that female caregivers e#perience caregiving significantl" different than men. For e#ample! in a stud" of .7A informal spousal caregivers -0B7 women and 78 men1! women reported significantl" higher levels of caregiver $urden and had nearl" twice the odds of providing support related to toileting assistance than men -Bra)il! Tha$ane! Foster! ; Bedard! .//B1. ?ther studies have found that female caregivers e#perience significantl" poorer ps"chological well($eing than men -Fran)en( ahlin! Larson! Durra"! >redling! ; Billing! .//21. 6n a meta(anal"sis -+in%uart ; Sorensen! .//A1! investigators found that female caregivers reported higher levels of depression than men. espite the prevalence of women caring for stroke survivors! relativel" little research has focused specificall" on the e#perience and needs of informal female caregivers of stroke survivors. 6n a recta(ethnographic review of %ualitative literature related to caregivers of stroke survivors $etween the "ears of .//' and .//B! the authors found Ethe lack of attention to similarities and differences $etween males and females in their e#perience of $eing a stroke carer FasG strikingE -=reenwood ; Dacken)ie! ./0/! p. .2&1! highlighting the need for more research e#amining the relationship of gender and the caregiving e#perience. 6n a stud" of A7 female spousal caregivers of stroke survivors -=reen ; <ing!

./0/1! investigators found that! despite an improvement in functional outcomes of the stroke survivor over the first "ear after the stroke -F-.1 H &.87A! p H ./021! level of depression -F-'!A.1 H A./72! p H ./021! and marital satisfaction -F-'!A.1 H A.B'0! p H .//&1 worsened for the wife caregiver. Iowever! findings of gender differences of stroke survivor informal caregivers have $een inconsistent. For e#ample! some researchers did not find an" differences $etween male and female caregivers of stroke survivors in terms of caregiver risk of depression -=rant! Bartolucci! :lliot! ; =iger! .///1. 6n contrast! other studies have suggested that female caregivers of stroke survivors e#perience greater caregiver $urden -Dorimoto! Schreiner! ; Asano! .//A1! ph"sical complaints! and s"mptoms of depression -p H ./&2! d H .A21 and an#iet" -p H ./.B! d H .&04 Ale#ander ; >il)! ./0/1 than male caregivers. Findings from another stud" suggested that female caregivers tend to e#perience distress earlier in the caregiving process than male caregivers -Simon! <umar! ; <endrick! .//B1. Jariation in time since stroke! relationship to stroke survivor! as well as instrument selection ma" account for the discrepancies in findings. Several literature reviews of caregivers of stroke survivors have $een pu$lished! demonstrating an e#tensive %uantitative research data$ase. Furthermore! there are several studies focusing on female caregivers in other areas! for e#ample! caregivers of A6 s patients -<ipp ; 9kosi! .//71! persons receiving chronic hemodial"sis ->icks! Bolden! D"natt! Rice! ; Acchiardo! .//21! and individuals with multiple sclerosis ->aldron(+errine! Rapport! R"an! ; Iarper! .//B1. Iowever! few %ualitative research studies were found that specificall" addressed the needs of female caregivers who care for stroke survivors and the meaning that these women give to their e#periences. A $etter understanding of female caregivers of stroke survivors@ e#periences and the meaning the" give to their changed lives would assist clinicians in $etter supporting this vulnera$le population. Furthermore! understanding the wa"s caregivers cope and adapt or fail to adapt to their unanticipated $ut permanentl" changed lives would help health providers design stroke after( care models that would $enefit female caregivers. Therefore! the purpose of this stud" was to conduct a %ualitative stud" to descri$e the e#perience of female caregivers who care for an adult famil" mem$er who has e#perienced a stroke within the previous "ear. Dethod Sample This stud" represents the %ualitative component of a mi#ed method stud" to investigate female stroke caregivers@ ps"chological stressors and ph"sical healthand to gain an understanding of the kinds of pro$lems caregivers ma" have in coping and adapting to the aftermath of the stroke as well as the t"pes of resources that ma" $e helpful to them. To address the %uestions of

caregivers@ perceptions of coping and adapting after a loved one@s stroke! a %ualitative descriptive design was used. A purposeful sample of caregivers of individuals who had a stroke provided information(rich data a$out their personal e#periences of coping and adapting to providing round(the(clock care to a loved one. A sample of &' female caregivers of stroke survivors were recruited nationall" via recruitment fl"ers distri$uted at stroke caregiver support groups! social networking internet sites! and several neurolog"Kneurosurgical outpatient clinics in the Didwest. >omen who were interested in participating in the stud" were asked to contact the stud" personnel and were enrolled in the stud" if the" met stud" inclusion criteria. 6nclusion criteria for participants were -a1 women aged 07 "ears or older and -$1 providing unpaid care to a significant other who e#perienced a stroke within the past A(0. months. +articipants were also re%uired to $e a$le to speak! read! write! and understand :nglish. The stud" was approved $" the institutional review $oard! and written consents of participants were o$tained. +articipants were provided a C.8 gift card for participating in the stud". +rocedure +articipants received packets of written stud" materials in the mail with addressed postage(paid envelopes for returning the completed stud" data. 6tems in the packets included a socio(demographic form to document such data as age! educational level! and annual income as well as a written %uestionnaire containing open(ended %uestions e#ploring the e#perience of female caregivers of stroke survivors and how the" coped with changes in their lives during the first "ear after the stroke. ?pen(ended %uestions were as follows: -a1 >hat are some of the pro$lems that "ou are dealing with as a famil" caregiver at this timeL -$1 >hat t"pes of support would make "our life easierL -c1 >hat could the doctors! nurses! and other providers do differentl" to $etter assist "ouL -d1 6s there an"thing else that we did not ask "ou a$out that "ou feel is important for us to know a$out "our e#perienceL +articipants were provided ample space to respond to the open(ended %uestions. +articipants Age of participants ranged $etween 07 and 2A "ears -mean H 8'.. "ears! S H 0/.A. "ears1. Dost participants were married -n H A/! '8..31 and >hite -n H A7! 7..'31. 6n addition! most had at least a college degree -n H .2! 87.231! with A/.&3 -n H 0&1 with a postgraduate degree. Dore than half -8..231 of the sample was emplo"ed! with ./.73 -n H '1 retired. Dost participants were living with the stroke survivor -n H AB! 7&.731. Relationship with the stroke survivor varied! with 8...3 -n H .&1 as the wives of the survivor! AB.03 -n H 071 as children of the survivor! and onl" A.73 -n H .1 as either a significant other to the survivor or mother of the survivor. The participants@ various ages and relationships to the individuals who had a stroke potentiate the

transfera$ilit" of findings to similar populations. Anal"sis Constant comparative methods were used for anal"sis of open(ended %uestions. The set of formal procedures used to anal")e data allow researchers to make valid inferences from open(ended written responses to %uestions in surve" research -<rippendorff! .//&1. +articipants addressed the research %uestions and then proceeded to write a$out their pent(up thoughts and feelings related to their lives as caregivers. ata were anal")ed as a whole to account for meaning statements provided $" the participants. Then! data were anal")ed individuall"! with each of the authors anal")ing the presence of conceptuall" similar data separatel" with the goal of identif"ing clusters of words! phrases! or sentences with similar content and assigned a categor"Kconcept name. >hen appro#imatel" half of the data had $een anal")ed! authors compared findings and refined codes and categor"Kconcept names. As data anal"sis proceeded! the authors coded the data together until categoriesK concepts were saturated and no new data emerged. The authors constantl" compared the fit of new data with e#tant categoriesKconcepts to assure that the participants@ words and meaning were faithfull" represented and descriptions characteri)ed the meaning of their e#periences. Demos were generated throughout the data anal"sis process to maintain an ongoing account of thoughts and insights and an" $iases related to the data anal"sis process. Concept validit" was enhanced through confirmation of the categories and their properties $" the authors who continuall" assessed the conceptual match $etween the written words provided $" caregivers who had lived through the da"(to(da" coping and adapting of the une#pected stroke of a famil" mem$er and were living with their changed lives as a famil" mem$er caregiver. :mpiricall" derived categories! su$categories! and e#emplar %uotations were derived directl" from participant data. Care was taken $" authors to not interpret the meaning provided $" participants. Findings showed a direct correspondence $etween the participants@ written words! the derived conceptual definitions! categoriesKconcepts! and inferences drawn from the findings. Assessment of validit" re%uires the researcher to %uestion whether or not the inferences made in the stud" are accurate and well founded. B" faithfull" attending to the words and meaning provided $" participants! validit" was enhanced. Deaning Conte#t Content anal"sis data anal"sis procedures re%uire that the researcher anal")e the phenomenon within the personal(environmental conte#t of the %uestion! E>hat is the conte#t relative to which the data are anal")edLE -<rippendorff! .//&1. The conte#t for this data anal"sis is female caregivers@ e#perience of

stroke survivor famil" mem$ers and the personal and environmental stressorsKpro$lems encountered as the" coped and adapted to this life crisis. Findings The purpose of this stud" was to conduct a %ualitative stud" to descri$e the e#perience of female caregivers who care for an adult famil" mem$er who has e#perienced a stroke within the previous "ear. The data anal"sis resulted in four ke" categories with related su$categories that conceptuali)e the process of struggling to cope and adapt with irreversi$le losses. The ke" categories of meaning are losing the life that once was! coping with dail" $urdens! creating a new normal! and interacting with healthcare providers. The theme struggling to cope and adapt with irreversi$le losses represents the latent content of the te#t. 6t su$sumes the su$stantive meaning across categoriesKconcepts -see Figure 0 depicting ta#onom" of categories1. Losing the Life That ?nce >as Caregivers of stroke survivors lose the life that once was the instant that their loved one e#perienced the stroke. Caregivers and the stroke survivors@ lives were instantl" and forever changed $ecause of the irreversi$le $rain inMur" sustained $" the stroke survivor. ata anal"sis resulted in four su$categories: -01 coping with a changed relationship with the stroke survivor! -.1 feeling overwhelmed! -A1 missing personal time! and -&1 facing an uncertain future. Coping >ith a Changed Relationship >ith Stroke Survivor +articipants e#pressed distress related to the changes $rought a$out in their relationship with the stroke survivor $ecause of the stroke. +articipants returned to this theme as the" attempted to make meaning of their changed lives. Their relationships with the stroke survivor was changed cognitivel"! emotionall"! and ph"sicall" as caregivers adapted to the significantl" altered relationships with loved ones. Dan" participants grieved the loss of the person the" once knew. This change in the relationship was particularl" poignant among married couples. ?ne woman wrote! ED" hus$and@s stroke has $een devastating for m" famil". ?ur lives will never $e the same. ?ur financial! emotional! and ph"sical relationship is ruined. 6t is ver" difficult to e#plain the loss of a life partner due to his stroke. Iis apra#ia and cognitive deficits are ver" difficult to overcome.E Another wife e#plained that she missed making da"(to(da" decisions with her hus$and! E...not $eing a$le to ade%uatel" communicate together( to $e a$le to discuss decisions! $ig and little((as we@ve done the past &A "ears.E The significance of how the stroke changed the marriage was an on(going stressor for participants. Adult children who cared for a parent also identified changes in their relationship $ecause of the stroke. ?ne daughter caregiver wrote! EDother@s

emotional status and a$ilit" to cope with and accept the mother(daughter role reversal are chief concerns at the present time.E Another participant e#pressed distress $" revealing! E ad has memor" loss as a result of his stroke. The transition from who he was to who he is now is painful! sad! confusing! and frustrating. ?ften these emotions are present at the same time.E This overriding theme of loss was evident throughout the comments made $" participants. Caregivers also e#pressed their difficult" coping with the a$rupt changes in the stroke survivor@s personalit". The stroke survivor was no longer who he or she had $een. The caregiver was compelled to acknowledge their changed realit" and to deal with the conse%uence of having to learn to cope and adapt to their new life on a moment(to(moment $asis. Caregivers descri$ed that! $ecause of the $rain inMur"! their loved one was often Edifficult to handle!E Ecrank"!E Euncooperative!E and Edepressed.E ?ne woman descri$ed how her hus$and@s depression resulted in his unwillingness to get out of $ed. Caregivers descri$ed their loved ones $eing angr" with them for no apparent reason. As a conse%uence of the negative changes in the stroke survivors@ personalities man" caregivers felt unappreciated and overwhelmed. ?ne wife said! EAll 6 do FforG m" hus$and and he doesn@t sa" thank "ou unless 6 prompt him to. That hurts most of the time.E Another wrote! EFeeling much unappreciated. Brain(inMured patients aren@t alwa"s nice and rarel" sa" thanks.E Feeling ?verwhelmed Caregivers identified feeling overwhelmed with the ph"sical demands on their time and energ" $ecause of their loved ones sustaining a stroke. Constanc" of care! ph"sical demands and time constraints were areas fre%uentl" descri$ed $" caregivers. +articipants identified $eing continuall" needed $" the stroke survivor to assist him or her with ph"sical needs! including mo$ilit"! toileting! and h"giene. 6n addition to the ph"sical demands! the caregivers descri$ed $eing on(call .&K2 to accommodate the stroke survivor@s needs. ?ne participant wrote! EIe calls me to his room ever" 0/ minutes.E Another wrote: E6 am up multiple times at night to aid m" stroke victim hus$and.E The realit" of $eing on(call to the stroke survivor at all times resulted in the caregiver $eing fatigued $ecause of sleep deprivation. ?ne caregiver e#pressed! E6 get ver" tired sometimes. There are never enough hours and 6 don@t have the $est ph"sical stamina to get ever"thing done all the time.E Another said! ELack of sleep. Alwa"s interrupted with spouses needs.E Caregivers commonl" descri$ed how the constant interruptions prevented them from completing necessar" tasks such as caring for their home. The" also descri$ed the stress of assuming each of the responsi$ilities that the stroke survivor had completed prior to the stroke. Caregivers e#pressed their frustration! E6 have to do it all.E Dan" caregivers descri$e their lives as Eoverwhelming!E Etiring!E and Edisorgani)ed.E ?ne woman wrote! E6 feel overwhelmed almost all of the time

and alone.E The demands of caregiving were $oth emotionall" and ph"sicall" e#hausting! resulting in caregivers feeling una$le to $alance the multiple and often conflicting demands of caregiving. Dissing +ersonal Time Caregivers also cited loss of personal time as a constant issue that the" faced after the stroke. The demands of caregiving while taking on additional responsi$ilities around the house left little personal time for the caregiver. ?ne participant descri$ed the loss of personal time $ecause of the stroke as EF6 haveG no uninterrupted time for personal things! including showersK$aths! TJ program or a movie! a chance to read or paint or pla" the organ. 9o chance to leave the house for a walk or to $ike...E Another descri$ed! E6 cannot leave when 6 want to!E and E6 have no downtime.E ?thers talked a$out how the" did not have time to sociali)e or spend time with friends and famil". A daughter wished she could Ego out for fun and not worr" a$out ad.E A wife wrote! E6 have to a$andon m" famil" and friends to care for m" hus$and.E A mother wrote a$out neglecting her children! ED" children get less time! and this is when 6 need to give them more time.E Another spouse e#pressed! E6 am missing time with m" grandchildren and friends.E Facing an ,ncertain Future 6n addition to e#periencing significant life changes $ecause of the stroke! caregivers also e#pressed concerns regarding their uncertain future! as it related to the stroke survivor@s future. ?ne participant worried that Eanother stroke ma" $e looming.E Another participant stated! E...a $ig stressor is not knowing what the future holds: E>ill he have another strokeL 6 feel 6 am coping ?< with this one $ut additional dependence! need for assistance might $e too much.E Another wrote! EFThere are man"G what ifs ... such as will she $e a$le to successfull" return to workL >ill she $e a$le to live independentl"LE ?ther participants descri$e how the" were una$le to fulfill their dreams $ecause of the stroke. ?ne stated! E6 feel that 6 have put a lot of dreams on hold! such as going awa" to college and much more.E 6n summar"! the stroke resulted in life(altering changes for the informal caregiver. :ver"thing from their relationship with the stroke survivor to their plans for the future was swiftl" and une#pectedl" turned upside down. Caregivers lived with dail" fears of their unknown future. Coping >ith ail" Burdens Caregivers identified several areas that the" had to cope with during the "ear after the stroke. 6n particular! dealing with financial strain and needing support from friends and famil" were areas of particular concern.

ealing >ith Financial Strain Dan" participants descri$ed their concerns regarding the impact of the stroke on their finances. Some participants descri$ed the loss of the stroke survivor@s income as well as their own need to retire. This loss of income resulted in their having to live from Epa"check to pa"check.E Some feared that the" would Erun out of mone".E Dounting medical $ills and lack of ade%uate medical insurance added to their plights. A wife wrote that she would $e Ein total povert" should hus$and die.E Another wrote! ESo we have cashed out most of our house to $e a$le to pa" for his medical $ills. This is one of the $iggest stressors ... we now have essentiall" no retirement fund.E Another caregiver said! E6 skipped healthcare for m"self for mone" reasons.E Furthermore! future financial sta$ilit" was also a significant concern. Some participants shared that the" essentiall" lost their retirement savings $ecause of the stroke. Better assistance with Enavigating the insurance ma)eE and help with financial planning were suggested as important needs of caregivers. 9eeding Support From Friends and Famil" Caregivers often e#pressed feeling a$andoned $" famil" mem$ers and friends. ?ne woman wrote! ED" friends have kept their distance. This is ver" disappointing.E Some caregivers tried to engage famil" mem$ers to help $ut found little cooperation. ?ne woman wrote! E6 wish all the people that said that the" would help us would come $" and see if we needed an"thing. 6 feel like the neigh$orhood $eggar. 6 actuall" have asked for help and $een re$uffed.E Caregivers felt regret and frustration that their children did not offer on(going help to lighten the $urden of doing ever"thing alone. The" e#pressed feeling discouraged $" the apparent lack of concern shown $" children and other famil" mem$ers for the dail" plight of the caregiver. ?ne caregiver e#pressed! E6 am sole caregiver. There is lack of concern! communication! sharing! and responsi$ilit" among famil" mem$ers.E Another said! E6 wish m" daughter would come and sta" with her dad once in awhile to help out.E Lack of emotional support from famil" and friends was compounded $" lack of availa$le respite for the caregiver. Lack of respite was a ke" stressor that most of the caregivers identified. Caregivers e#pressed the need for assistance with providing direct care for their loved one as well as help with grocer" shopping! housecleaning! and other errands. Dan" participants simpl" wanted to $e a$le to get out of the house sometimes: E6f 6 could Must go to the grocer" store once in a while without alwa"s hurr"ing.E Caregivers wanted relia$le! trustworth" assistance. Some caregivers had paid assistants! whereas others depended on friends and famil" to help. Those who relied on unpaid assistance sometimes felt uncomforta$le asking for help. ?ne caregiver e#plained! EFamil" mem$ers are great! $ut most of the time we have to call and ask for help. 6 wish the" would come on their own and do some things. The" know what 6 can@t do $ut 6 still have to ask or do them m"self.E

?n the positive side! some participants discussed the value of the support the" received from friends and families in providing them with the strength to continue their difficult Mo$s as caregivers. ?ne woman who was caring for her mother e#pressed! E6 was luck" enough to have a wonderful! understanding hus$and who took time off of work when times were especiall" stressful.E Another caregiver said! E6 have a wealth of good and loving famil" and friends who support me without $eing intrusive.E Dan" caregivers stressed the importance of making time to see friends and to sociali)e. Iowever! although friendl" gestures were greatl" appreciated! the" also needed Etrue friendsE who the" could openl" talk to a$out their deepest fears. Creating a 9ew 9ormal Caregivers identified striving to create a new normal. This process encompassed several su$processes! including adapting to a new realit"! seeing some good come from it! engaging in spiritualit"! and gaining confidence in caregiver role. Adapting to a 9ew Realit" Adapting to a new realit" included recogni)ing the difficult" of caregiving and accepting the permanence of their changed live. ?ne woman wrote! ECaregiving is not for the faint of heart.E Caregivers also discussed the fact that their lives were now centered in giving care and comfort to their loved ones. ?ne caregiver commented that it was helpful to have their ph"sician tell her that EThis is a marathon! not a sprint.E Although caregivers stressed the importance of doing their $est to care for their loved ones! some participants recogni)ed that the" needed to take care of themselves and Ereplenish reservesE to have the strength necessar" to $e effective caregivers. Some participants descri$ed grieving for their losses! accepting their new lives! and moving on. ?ne woman wrote! EAfter all the lovel" cards and the hot meals are delivered! there has to $e personal! private wa"s that an individual deals with! grieves! and accepts what has happened.E Another woman simpl" accepted her changed realit" as a matter of fact. EThe positive aspect of caregiving was difficult! $ecause it neither is positive or negative. 6t is what it is.E Seeing Some =ood Come From 6t Some caregivers pointed out that! although caregiving was ver" difficult! the" were a$le to find some good in their e#periences. ?ne woman wrote! EThere is a Mo" in caring for someone "ou love. 6t doesn@t mean ever"thing goes smoothl".E ?thers wrote a$out how the" gained strength from the courage their loved ones showed in dealing with the stroke and its after(effects. A wife e#pressed! ED" hus$and is doing ever"thing he possi$l" can do to get $etter.E

Some caregivers wrote a$out how the stroke strengthened their relationships with the stroke survivors. A daughter commented! E6 never had a close relationship with m" ad! $ut after the stroke 6 have a relationship with him. 6 have forgiven him for things in the past.E ?ne wife wrote! EThere is a wonderful side of caregiving for m" hus$and((it has deepened our relationship and forced us to sort out what is trul" important in our lives. 6 wouldn@t trade places with an"one for this reason.E :ngaging in Spiritualit" Some caregivers found strength in rel"ing on their spiritual $eliefs to help them cope with their losses. ?ne caregiver e#pressed! E...onl" =od know what the future holds! so 6@ll Must keep trusting him.E Another said! E6 would not $e a$le to do this without a strong spiritual life.E ?ther caregivers found comfort in pra"ing! meditating! Mournaling! writing poetr"! caring for animals! gardening! and painting. ?ne woman wrote! E6 have written poetr" and have a >?> -word of the week1 that 6 hang on to. :#amples have $een @:%uili$rium@ -when 6 was Must tr"ing to maintain it1. @9ike@ -Must do itN1 when 6 was facing a mountain of issues and decisions! @Ioops@ -as in Mumping through! and hoop circle(of( love1 ... FandG @+revail@ when 6 needed to get through each da" or perhaps the ne#t few minutes.E =aining Confidence in Caregiver Role Caregivers discussed how learning a$out the stroke survivors@ illness and needed care helped them to $etter deal with $eing caregivers. The internet was a fre%uent source of knowledge. ?ne woman wrote! E6t was Must scar" never having e#perienced a stroke first hand. 6 learned a lot from the 6nternet and asking %uestions and taking notes to refer $ack to.E Dan" caregivers e#pressed the initial fear that the" had a$out caring for the stroke survivor and how the" gained confidence with time. ?ne said! E6 am doing much $etter than in the $eginning.E 6nteracting >ith Iealthcare +roviders uring the turmoil of the first "ear after the stroke! caregivers often sought out healthcare providers for advice and guidance for dealing with the challenges of caring for their loved one. Some caregivers related positive e#periences when interacting with healthcare providers. The" e#pressed appreciating the care received from healthcare providers! whereas other participants identified $eing dissatisfied with healthcare provider care. Dan" participants identified the need for more coordinated care and offered advice to healthcare providers caring for stroke survivors and their caregivers. Appreciating Care From Iealthcare +roviders

Caregivers identified several wa"s in which healthcare providers assisted the informal caregiving in providing %ualit" care. Recogni)ing the caregiver@s need for support and referring the caregiver to a support group was acknowledged $" several participants. An e#ample of a caregiver recogni)ing the need for support was e#pressed as! E6 think the value of having a support group or individuals who "ou can call Must who listen and understand is huge.E Another participant stressed the importance of Ehaving people who have $een through this to talk to! who reall" understand ... what other people find useful.E +articipants also e#pressed a need for support groups that met the needs of "ounger caregivers: EJer" little support e#ists for the uni%ue challenges faced $" the significantl" "ounger spousal caregivers(support groups are directed either towards care giving children or same stage(of(life spouses.E Being issatisfied >ith Iealth +rovider Care

Although man" caregivers e#pressed their appreciation of healthcare providers! a few were frustrated with the care the" and their loved ones received. ?ne participant wrote! ECare! care! care! instead it seems to $e all a$out mone" to them or the" do as little as possi$le -with a few great e#ceptions1.E Another said! EF6G do not trust hospitals or @professional@ caregivers....E ?thers e#pressed their dissatisfaction with not $eing listened to! stating! E...man" of Fthe providersG simpl" do not listen.E ?ne woman wrote! EListen and $elieve me when 6 tell them a$out s"mptoms and reactions to drugs.E Caregivers wanted healthcare providers to provide information on the e#pected recover" traMector" of the stroke patient that was $oth realistic "et hopeful. For e#ample! one participant said! E6 do know strokes are all different so there are no reall" @normal@ patterns of healing! $ut 6 also felt like the doctors did not tell me what to e#pect.E Another said! EIave more optimism a$out the stroke survivor@s recover".E Caregivers also wanted on(going information on what to e#pect at different phases of the stroke survivor@s recover" process. For e#ample! one participant said! E=ive $etter direction and advice as to what to e#pect and what the $est recommendation would have $een when morn came home. The" should FhaveG recommended an assessment(($efore we went ahead with $athroom remodel.E 9eeding Coordinated Care Coordination of care was another common thread in responses related to interacting with healthcare providers. +articipants e#pressed a desire for healthcare providers to help them organi)e and coordinate the fre%uentl" comple# care needs. ?ne participant stated! EIelp me assem$le m" hus$and@s personal health record to enhance coordination of care.E Another e#pressed! E6t would help if Fthe providersG were all on the same page(( sometimes 6 feel like 6 have to $e the doctor to sort out all of the differing

opinions of specialists.E Another participant summari)ed the need for coordinated care $" sa"ing! E6 wish 6 could have a doctorKnurse that could @manage@ @advise!@ @interpret!@ and help with feed$ack from all specialists.E 6n addition! caregivers desired $etter coordination of clinic appointments with one stating! EDinimi)e multiple appointments and com$ine them when 6 visit.E =iving Advice to Iealthcare +roviders +articipants had several suggestions for healthcare providers to improve care. Advice to healthcare providers centered on the healthcare provider referring the caregiver to appropriate resources! managing medications! and acting in a caring manner. Caregivers e#pressed the need for healthcare providers to help them identif" appropriate resources for $oth the patient and themselves. For e#ample! one caregiver wanted to $e referred to a primar" care ph"sician Ethat is e#perienced with stroke patients.E ?thers wanted help with locating support groups! mental health professionals! transportation to appointments! respite care! and o$taining assistive devices such as ramps. Danaging medications was identified $" man" caregivers as an important need from healthcare providers. Caregivers wanted more information a$out the coordination of medications! potential interactions! and side effects. 6n addition! the" wanted to feel confident that the healthcare provider was prescri$ing appropriatel" and monitoring the medications. For e#ample! one participant said! EFdon@tG Mump to add more medication with ever" s"mptom Must $ecause he had a stroke.E Another advised! E<eep closer watch on hus$and@s medication.E Caregivers e#pressed a need for healthcare providers to provide them with accurate and detailed information a$out medication management. An e#ample was EThe" could have e#plained the medications $etter. 6 was given a list $ut not enough detail -don@t administer if sugar is $elow 0//! for e#ample1.E 6n addition! caregivers preferred relevant information needs to $e provided throughout the recover" period. The conse%uence was the caregiver feeling uncertain and inade%uate regarding issues related to the caregivers role in medicating their loved one. Finall"! caregivers wanted to feel like the healthcare provider cared a$out them and their loved ones. The" wanted the healthcare provider to spend time with them and Enot $e in a hurr" to see the ne#t patient.E Iowever! some caregivers e#pressed unrealistic e#pectations of the provider. For e#ample! one said! EFi# the stroke so she has a life that@s normal.E iscussion This stud" highlights the uni%ue e#periences of women caring for stroke survivors. Findings showed that female caregivers were preoccupied with four kinds of stressors characteri)ed $" facing permanent and irreversi$le losses while tr"ing to cope with dail" $urdens and struggling to create a new normal.

Iealthcare providers positivel" and negativel" affected the a$ilit" of the caregivers to cope and adapt to their changed lives. The ke" concepts that reflect this process are as follows: -a1 losing the life that once was! -$1 coping with dail" $urdens! -c1 creating a new normal! and -d1 interacting with healthcare providers are discussed. Losing the Life That ?nce >as The ke" concept of losing the life that once was characteri)ed $" the caregiver having to cope with a changed relationship with the stroke survivor! feeling overwhelmed! missing personal time! and facing an uncertain future. The concept that caused the most distress was coping with the changed relationship with the stroke survivor. These concepts were particularl" evident in spouses@ comments. 6n some instances! the stroke survivor@s personalit" was so drasticall" changed $ecause of the stroke that the stroke survivor no longer seemed like the same person that the caregiver had known prior to the stroke. =rief is a common response to a significant loss -9o"es et al.! ./0/1. Although the literature related to grief in caregivers is scant! there is growing evidence that caregivers! especiall" those who care for their loved ones with cognitive deficits such as found in persons with dementia or $rain inMur"! e#perience significant grief -Chiam$retto! Doroni! =uarnerio! Bertolotti! ; +rigerson! ./0/4 Deuser ; Darwit! .//04 9o"es et al.! ./0/4 ?tt! Sanders! ; <el$er! .//21. Boss -0BBB1 coined the term Eam$iguous lossE to descri$e the grief e#perienced $" caregivers. Am$iguous loss can occur when the person one is grieving for is ph"sicall" still present $ut cognitivel" no longer the same person -Sanders ; Adams! .//81. Am$iguous loss is considered one of the most difficult t"pes of grief to cope with $ecause of the uncertaint" associated with it and the lack of societal rituals often associated with the death of a loved one -Boss! 0BBB1. Studies have found that grief is a significant predictor of depressive s"mptoms in caregivers of individuals with Al)heimer disease and dementia -Darwit ; Deuser! .//.4 Sanders ; Adams! .//81. Furthermore! it has $een suggested that caregivers of people with Al)heimer e#periencing grief ma" inaccuratel" receive a diagnosis of depression and not $e appropriatel" treated -Sanders ; Adams! .//81. Surprisingl"! no pu$lished research was found e#amining grief in informal caregivers of stroke survivors! although several studies identified loss as an important e#perience of caregivers of stroke survivors -Coom$s! .//24 =reen ; <ing! .//B4 =reenwood ; Dacken)ie! ./0/1. ?ur results suggest that! $ecause of the multiple losses! grief ma" pla" a predominant role in the lives of female caregivers. Compounding the caregivers@ grief over the loss of the person that the" once knew! caregivers reported losses in other important areas of their lives! such as feeling overwhelmed with competing famil" demands! missing personal time! and facing an uncertain future. ?ur findings are in agreement with those

of Coom$s -.//21! in which eight spouses -five women and three men1 of stroke survivors were interviewed at least 6 "ear after the stroke regarding their e#periences of providing care to a stroke survivor. Coom$s identified the e#perience of profound loss as an important theme! which included loss of leisure time! loss of freedom! and loss of marital partner. ?ur findings e#tend those of Coom$s in that findings from this stud" identified that caregivers lived with the stress of an uncertain future and the loss of the anticipated future that was now not possi$le. 6n addition! our sample consisted of a "ounger group of participants -mean age! 8'.. "ears1 compared with sample in Coom$@s stud" -'8.8 "ears of age1. Oounger caregivers ma" $e more concerned with the uncertaint" of the future than older caregivers. Coping >ith ail" Burdens 6n addition to feeling significant loss related to the changed relationship after the stroke! female caregivers of stroke survivors also found it necessar" to cope with a multitude of dail" $urdens. Iigh levels of caregiver stress and $urden of stroke survivors has $een well documented in the literature -Iale"! Roth! Ioward! ; Safford! ./0/4 <ing! Ainsworth! Ronen! ; Iartke! ./0/4 Rig$"! =u$it)! ; +hillips! .//B4 Sa$an! Sherwood! eJon! ; I"nes! ./0/1. ?ur findings indicate that female caregivers are most concerned with dealing with financial strain! needing support from friends and famil"! and needing respite. These issues are similar to those reported $" <ing et al.! -./0/1 in a mi#ed methods stud" of 87 caregivers -&8 women and 0A men1! which e#amined the t"pes and fre%uenc" of caregiver issue during acute reha$ilitation and first A(& months postdischarge4 however! the additional need for respite was identified in our stud". The longer duration since the stroke -our stud" included caregivers A(0. months after stroke! whereas <ing et al. interviewed caregivers within A(& months after stroke1 ma" have accounted for the caregivers! in this stud"! identif"ing the need for respite. ?ur findings are also consistent with those of several other studies in that participants identified needing support from others as important in helping them cope with their changed lives -Buschenfeld! Dorris! ; Lockwood! .//B4 Coom$s! .//24 =reenwood ; Dacken)ie! ./0/4 Steiner et al.! .//71. Steiner et al.! -.//71 stressed that social support includes $oth emotional and ph"sical support! which is in agreement with our findings that caregivers e#pressed the need for $oth emotional support and ph"sical help with caring for their loved one. Iowever! in contrast to the stud" $" Coom$s -.//21! our participants e#pressed the despair of often feeling a$andoned $" their friends and famil" who were viewed as seldom reaching out or spontaneousl" offering to help the caregiver. This sense of feeling a$andoned $" famil" mem$ers resulted in caregivers feeling alone to deal with their despair. Assisting caregivers in finding strategies to re%uest and o$tain help from famil" mem$ers ma" $e an important role of nurses and other healthcare providers.

Creating a 9ew 9ormal The participants identified the first "ear after the stroke as a time of making significant adMustments in coping and adapting to their permanentl" changed lives. Some of the participants accepted their changed life and $egan creating a new normal that included engaging in spiritualit"! gaining confidence! and seeing some good coming from caring for a loved one. Reali)ing that caregiving is constant and difficult was a finding identified in our stud" that was not found in the literature. Seeing some good or $enefit(finding was another adapting mechanism identified $" some caregivers. Benefit(finding has $een e#amined in other studies of caregivers in relation to the well($eing of the caregiver -<im! Schul)! ; Carver! .//24 +akenham ; Co#! .//7! .//B1. Benefit(finding is a term used to descri$e the Ephenomenon of personal growth or positive changes after an encounter with a challenging or traumatic life e#perienceE -<im et al.! .//2! p. .7A1. Although no studies were found that specificall" e#amined $enefit( finding in caregivers of stroke survivors! some studies did consider optimism and hope in stroke survivor caregivers -Coom$s! .//24 Silva(Smith! .//21. Although these concepts are different than $enefit(finding! the" are related. For e#ample! Coom$s -.//21 found that caregivers! despite their struggles! were sustained $" their hope in the future. <im et al.! -.//21 have suggested that $enefit(finding ma" help caregivers adapt to their changed lives. Further e#amination of the role of $enefit(finding in caregivers of stroke survivors is needed. Finall"! personal growth as a measura$le outcome of grieving the loss of a loved one re%uires further e#ploration in the caregiver population -=amino! Iogan! ; Sewell! .//.4 Iogan! =reenfield! ; Schmidt! .//04 Iogan ; Schmidt! .//.1. Further research will clarif" the degree to which stoke caregiver grief is similar andKor different with regard to personal growthK$enefit finding and is a fertile area for further stud". Stud" participants descri$ed spiritualit" as an important factor in creating a new normal. +articipants in our stud" e#pressed spiritualit" $" a wide range of practices! including pra"ing! writing poetr"! caring for animals! and gardening. +ierce et al. -.//71! in a %ualitative stud" of A' caregivers of stroke survivors -'B.&3 women1! identified four ke" components: feeling the presence of a greater power! practicing rituals! $eing one with nature! and interacting with famil". Findings from our stud" supported each of the concepts identified in +ierce et al. -.//71! e#cept some participants in our stud" identified interactions with famil" as a stressor. =aining confidence in the caregiver role was associated with caregivers creating a new normal. Surprisingl"! few pu$lished %ualitative studies identified the notion of gaining confidence in caregivers of stroke survivors. Backstrom and Sundin -.//B1! in a %ualitative stud" of nine caregivers -$oth men and women1 of stroke survivors 0 "ear after discharge from a

reha$ilitation clinic! identified a related concept of E$eing familiar with new routinesE -p. 0&271. Silva(Smith -.//21! in a stud" of 0. new caregivers caring for stroke survivors & weeks after discharge from reha$ilitation! also refers to caregivers developing routines. Although the concept of developing a routine is similar to gaining confidence! it is different in that gaining confidence is a higher(level concept associated with self(esteem and a changed sense of self. 6nteracting >ith Iealthcare +roviders Responses descri$ed caregivers@ perception of interacting with healthcare providers as centered on appreciating care from healthcare providers! $eing dissatisfied with healthcare provider care! needing coordinated care! and offering advice to healthcare providers. ?nl" a few studies were found that specificall" addressed the relationship $etween the stroke caregiver and healthcare provider and mainl" focused on areas of improvement needed from the providers. Areas cited for improvement identified in these studies were consistent with those in our stud" and included healthcare providers providing more information regarding resources for caregivers! respite care! nutrition! transportation! and ongoing education -<ing ; Semik! .//'4 Doore! Daiocco! Schmidt! =uo! ; :stes! .//.1. +roviding information a$out respite care was a ke" need identified in several studies as well as in this stud". A uni%ue finding in this stud" was the need for healthcare providers to assist the caregiver in coordination of care. Coordination of care included management of appointments! treatments! and medications. Female caregivers! who were often Muggling the multiple demands of caring for children and working! descri$ed the lack of coordination as a significant on(going stressor. +articipants in our stud" also stressed the importance of healthcare providers acting in a caring manner. Several caregivers noticed healthcare providers seemed in a hurr" or distracted. 6n addition! the" sensed that healthcare providers failed to listen to or act upon caregivers@ concerns. Limitations of this stud" are acknowledged. The data were collected using self(report written responses. The degree to which findings would have $een different if one(to(one interviews were done is unknown. The sample consisted of primaril" >hite! well(educated participants. 6t is suggested that future research include a more heterogeneous sample with regard to income and educational level. Furthermore! we recommend that oral interview methods $e used to further %uer" participants on the meaning of $eing a caregiver. Finall"! our stud" focused on coping and adapting $ehaviors of female caregivers during the first "ear of caregiving. Future research ma" $enefit from e#ploring how the e#perience of caregiving changes over time for women caring for stroke survivors. 6mplications for +ractice

Findings provide evidence that caregivers have specific needs that could $e $etter met $" healthcare professionals. ,nderstanding of the uni%ue e#periences of female caregivers of stroke survivors is important for nurses to effectivel" manage care and to provide needed support and guidance to women caring for stroke survivors. Caregivers@ lives changed a$ruptl" and irreversi$l" as their loved ones sustained the stroke! resulting in grieving the permanent changes in their loved ones and their shared relationship. Their grieving added an additional stressor to their need to cope with numerous ph"sical! emotional! social! and cognitive stressors. Recogni)ing that grief ma" pla" a role in the ps"chological well($eing of caregivers is important for nurses in determining the support needs of caregivers. 6n addition! it ma" $e important for nurses to assist caregivers in developing strategies for re%uesting and o$taining support from others. +articipants offered several suggestions to healthcare providers to improve care. First! participants advised providers to listen to caregivers@ reports of medication pro$lems and changes in the survivors@ $ehaviors and to offer anticipator" guidance to help caregivers regarding what the caregiver can e#pect during the recover" period. Referring caregivers to a support group was also fre%uentl" suggested $" participants. 6n addition! man" caregivers found coordination of the stroke survivor@s care a significant challenge. Com$ining multiple appointments into fewer visits was suggested $" several caregivers. Finall"! respite was a priorit" for man" caregivers in our stud". +articipants suggested that clinicians assist caregivers in identif"ing their respite needs and refer them to appropriate resources. Conclusions This is one of the first studies to focus on the uni%ue needs of women caring for stroke survivors. 6n summar"! the process of $ecoming a caregiver $egan a$ruptl" when their loved one sustained a stroke resulting in var"ing degrees of cognitive! emotional! and ph"sical disa$ilities. ,pon getting the news of the stroke! the caregiver@s shared life that had e#isted with the loved one $efore the stroke ceased to e#ist! and female caregivers were compelled to cope and adapt to permanent changes in their da"(to(da" lives. Oet! with time! most of the caregivers $egan the process of creating a new normal that had meaning and purpose. Finall"! participants identified specific actions and attitudes that healthcare providers could adopt! which could increase the effectiveness of providing care to stroke survivors. Acknowledgments The authors thank the female famil" caregivers who so generousl" provided their time and thought(provoking insights. References

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.orgKwhoParePfamil"PcaregiversKcarePgivingPstatstics.cfm 9o"es! B. B.! Iill! R. .! Iicken! B. L.! Luptak! D.! Rupper! R.! aile"! 9. <.! ... Baird! B. . -./0/1. The role of grief in dementia caregiving. American 5ournal of Al)heimer@s isease and ?ther ementias! .8-01! B(02. doi:0/.0022K08AAA028/BAAAB/. ?tt! C. I.! Sanders! S.! ; <el$er! S. T. -.//21. =rief and personal growth e#perience of spouses and adult(child caregivers of individuals with Al)heimer@s disease and related dementias. =erontologist! &2-'1! 2B7(7/B. doi:0/.0/BAKgerontK&2.'.2B7 +akenham! <. 6.! ; Co#! S. -.//71. evelopment of the $enefit finding in multiple sclerosis -DS1 caregiving scale: A longitudinal stud" of relations $etween $enefit finding and adMustment. British 5ournal of Iealth +s"cholog"! 0A-+t:&1! &('/.. doi:0/.0A&7K0A8B0/2/2Q.8/7&7 +akenham! <. 6.! ; Co#! S. -.//B1. The dimensional structure of $enefit finding in multiple sclerosis and relations with positive and negative adMustment: A longitudinal stud". +s"cholog" and Iealth! .&-&1! A2A(ABA. doi:0/.0/7/K/772/&&/2/07A.8B. +ierce! L. L.! Steiner! J.! Iavens! I.! ; Tormoehlen! <. -.//71. Spiritualit" e#pressed $" caregivers of stroke survivors. >estern 5ournal of 9ursing Research! A/-81! '/'('0B. doi:0/.0022K /0BAB&8B/2A0/8'/ +in%uart! D.! ; Sorensen! S. -.//A1. ifferences $etween caregivers and noncaregivers in ps"chological health and ph"sical health: A meta(anal"sis. +s"cholog" and Aging! 07-.1! .8/(.'2. doi:0/.0/A2K/77.(2B2&.07....8/ Rig$"! I.! =u$it)! =.! ; +hillips! S. -.//B1. A s"stematic review of caregiver $urden following stroke. 6nternational 5ournal of Stroke! &-&1! .78(.B.. doi:0/.0000KM.02&2(&B&B..//B.//.7B.# Rosamond! >.! Flegal! <.! Frida"! =.! Furie! <.! =o! A.! =reenlund! <.! ... Iong! O. -.//21. Ieart disease and stroke statistics .//2 update: A report from the American Ieart Association Statistics Committee and Stroke Statistics Su$committee. Circulation! 008-81! e'B(e 02 l. doi:0/.00'0K C0RC,LAT6?9AIA.0/'.02BB07 Sa$an! <. L.! Sherwood! +. R.! eJon! I. A.! ; I"nes! . D. -./0/1. Deasures of ps"chological stress and ph"sical health in famil" caregivers of stroke survivors: A literature review. 5ournal of 9euroscience 9ursing! &.-A1! 0.7(0A7. doi:0/.0/B2K599./$/0AeA070d&aAee Sanders! S.! ; Adams! <. B. -.//81. =rief reactions and depression in

caregivers of individuals with Al)heimer@s disease: results from a pilot stud" in an ur$an setting. Iealth and Social >ork! A/-&1! .72(.B8. Schlote! A.! Richter! D.! Frank! B.! ; >allesch! C. >. -.//'1. A longitudinal stud" of health(related %ualit" of life of first stroke survivors@ close relatives. Cere$rovascular iseases! ..-.(A1! 0A2(0&.. Silva(Smith! A. L. -.//21. Restructuring life: preparing for and $eginning a new caregiving role. 5ournal of Famil" 9ursing! 0A-01! BB(00'. doi:0/.0022K0/2&7&/2/'.B2&.8 Simon! C.! <umar! S.! ; <endrick! T. -.//B1. Cohort stud" of informal carers of first(time stroke survivors: profile of health and social changes in the first "ear of caregiving. Social Science and Dedicine! 'B-A1! &/&&0/. doi:0/.0/0'K M.socscimed..//B./&.//2 Ski! C.! ; ?@Connell! B. -.//21. Stroke: the increasing comple#it" of carer needs. 5ournal of 9euroscience 9ursing! AB-A1! 02.(02B. Steiner! J.! +ierce! L.! rahuschak! S.! 9of)iger! :.! Buchman! .! ; S)iron"! T. -.//71. :motional support! ph"sical help! and health of caregivers of stroke survivors. 5ournal of 9euroscience 9ursing! &/-01! &7(8&. doi:0/.0/B2K/0A2'802.//7/.///(////7 ,.S. epartment of La$or. -./0/1. Ruick stats on women workers! .//B. Retrieved from http:KKwww.dol.govKw$KstatsKmain.htm van :#el! 9. 5.! <oopmanschap! D. A.! van den! B. B.! Brouwer! >. B.! ; van den Bos! =. A. -.//81. Burden of informal caregiving for stroke patients. 6dentification of caregivers at risk of adverse health effects. Cere$rovascular iseases! 0B-01! 00(02. >aldron(+errine! B.! Rapport! L. 5.! R"an! <. A.! ; Iarper! <. T. -.//B1. +redictors of life satisfaction among caregivers of individuals with multiple sclerosis. Clinical 9europs"chologist! .A-A1! &'.(&27. >icks! D. 9.! Bolden! L.! D"natt! S.! Rice! D. C.! ; Acchiardo! S. R. -.//21. 6nsight potentiall" prevents and treats depressive and an#iet" s"mptoms in Black women caring for chronic hemodial"sis recipients. 9ephrolog" 9ursing 5ournal: 5ournal of the American 9ephrolog" 9urses@ Association! A&-'1! '.A( '.B. Ruestions or comments a$out this article ma" $e directed to <aren L. Sa$an! +h A+R9 R9 C9R9! at ksa$anSluc.edu. She is an assistant professor at the Darcella 9iehoff School of 9ursing! Lo"ola ,niversit" Chicago! Chicago! 6L! and a research health scientist at the Center for Danagement of Comple#

Chronic Care! :dward Iines! 5r.! JA Iospital! Iines! 6L. 9anc" S. Iogan! +h R9 FAA9! is a distinguished professor and the director for research at the Darcella 9iehoff School of 9ursing! Lo"ola ,niversit" Chicago! Chicago! 6L. The stud" was supported $" the Lo"ola ,niversit" Chicago! the +almer Foundation! and the Chicago 6nstitute of 9eurosurger" and 9euroresearch Foundation. 6n addition! r. Sa$an was supported $" a A("ear Jeterans Affairs Iealth Service Research and evelopment +ostdoctoral Fellowship -T+9(&.( //01. The views e#pressed do not necessaril" reflect the position or polic" of the ,.S. epartment of Jeterans Affairs or the ,nited States =overnment. The authors declare no conflicts of interest. ?6: 0/.0/B2K59 9./$/0AeA07.Aae&fB FIGURE 1 Taxonomy of Categories and Subcategories Struggling to Cope and Adapt Irre"ersible #asses #osing t!e life Interacting t!at once as it! !ealt!care pro"iders Coping it! a Appreciating c!anged care from relations!ip !ealt! it! stro%e pro"iders sur"i"or 'eing Feeling dissatisfied o"er !elmed it! !ealt! $ealing financial strain it! Adapting to ane reality Coping it! it!

Creating a ne normal

daily burdens

seeing some good come from

&eeding support from friends and family

it Engaging in spirituality

pro"ider care (issing personal time &eeding coordinated care Facing an uncertain Gi"ing ad"ice future

Gaining confidence in caregi"er role