Female Caregivers of Stroke Survivors

8/13/2019 Female Caregivers of Stroke Survivors

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

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ABSTRACT

espite the prevalence of women caring for stroke survivors ! relativel" littleresearch has focused specificall" on the e#perience and needs ofinformal female caregivers of stroke survivors. Therefore! the purpose of thisstud" was to descri$e the e#perience of female caregivers who care for anadult famil" mem$er who has e#perienced a stroke within the previous "earusing a %ualitative methodolog" . A sample of &' female caregivers of strokesurvivors completed a demographic form and responded to open(ended written %uestions e#ploring their e#periences as caregivers and howthe" 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! copingwith dail" $urdens! creating a new normal! and interacting with healthcareproviders. Findings suggest that female caregivers of stroke survivors grievethe life that the" once shared with the stroke survivor and struggle to copewith multiple famil" and work demands while tr"ing their $est to interact withhealthcare providers to attain the $est possi$le care for their loved ones.

Recogni)ing the uni%ue challenges of female caregivers of stroke survivorsma" help nurses provide $etter support and resources to meet their needs.

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+reliminar" data from the Centers for isease Control and +revention reportsthat stroke is the fourth leading cause of death in the ,nited States! after heartdisease! cancer! and lower respirator" disease -Centers for isease Controland +revention! /001. Appro#imatel" 023 of persons e#periencing a strokedie 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 aredischarged 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 onemillion 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
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assistance -i.e.! home health aide 1! famil" mem$ers are fre%uentl" faced with amultitude of stressors ranging from coordination of medical care to &(hourcare of their loved one. Studies have consistentl" shown that famil" caregiversare at risk for developing ph"sical and emotional pro$lems -Berg! +alomaki!Lonn%vist! Lehtihalmes! ;


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/0/1! investigators found that! despite an improvement in functionaloutcomes of the stroke survivor over the first "ear after the stroke -F- 1 H&.87 ! p H ./021! level of depression -F-'! 1 H ./72! p H ./021! and maritalsatisfaction -F-'! 1 H . '0! p H .//&1 worsened for the wife caregiver.Iowever! findings of gender differences of stroke survivor informal caregivershave $een inconsistent. For e#ample! some researchers did not find an"differences $etween male and female caregivers of stroke survivors in termsof caregiver risk of depression -=rant! Bartolucci! lliot! ; =iger! ///1. 6ncontrast! other studies have suggested that female caregivers of strokesurvivors e#perience greater caregiver $urden -Dorimoto! Schreiner! ; Asano!// 1! ph"sical complaints! and s"mptoms of depression -p H ./&2! d H . 21and an#iet" -p H ./ ! d H .&04 Ale#ander ; >il)! /0/1 than male caregivers.Findings from another stud" suggested that female caregivers tend toe#perience distress earlier in the caregiving process than male caregivers-Simon! icks! Bolden! D"natt! Rice! ; Acchiardo!//21! and individuals with multiple sclerosis ->aldron(+errine! Rapport!

R"an! ; Iarper! // 1. Iowever! few %ualitative research studies were foundthat specificall" addressed the needs of female caregivers who care for strokesurvivors and the meaning that these women give to their e#periences. A$etter understanding of female caregivers of stroke survivors@ e#periences andthe meaning the" give to their changed lives would assist clinicians in $ettersupporting this vulnera$le population. Furthermore! understanding the wa"scaregivers cope and adapt or fail to adapt to their unanticipated $utpermanentl" changed lives would help health providers design stroke after(care models that would $enefit female caregivers. Therefore! the purpose ofthis stud" was to conduct a %ualitative stud" to descri$e the e#perience of

female caregivers who care for an adult famil" mem$er who has e#perienceda stroke within the previous "ear.

Dethod

Sample

This stud" represents the %ualitative component of a mi#ed method stud" toinvestigate female stroke caregivers@ ps"chological stressors and ph"sicalhealth and 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"pesof resources that ma" $e helpful to them. To address the %uestions of


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caregivers@ perceptions of coping and adapting after a loved one@s stroke! a%ualitative descriptive design was used. A purposeful sample of caregivers ofindividuals who had a stroke provided information(rich data a$out theirpersonal e#periences of coping and adapting to providing round(the(clockcare to a loved one. A sample of &' female caregivers of stroke survivorswere recruited nationall" via recruitment fl"ers distri$uted at stroke caregiversupport groups! social networking internet sites! and severalneurolog"Kneurosurgical outpatient clinics in the Didwest. >omen who wereinterested 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 strokewithin the past (0 months. +articipants were also re%uired to $e a$le tospeak! read! write! and understand nglish. The stud" was approved $" theinstitutional review $oard! and written consents of participants were o$tained.+articipants were provided a 8 gift card for participating in the stud".

+rocedure

+articipants received packets of written stud" materials in the mail withaddressed postage(paid envelopes for returning the completed stud" data.6tems in the packets included a socio(demographic form to document suchdata 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 intheir lives during the first "ear after the stroke. ?pen(ended %uestions were asfollows: -a1 >hat are some of the pro$lems that "ou are dealing with as afamil" caregiver at this time -$1 >hat t"pes of support would make"our life easier -c1 >hat could the doctors! nurses! and other providers dodifferentl" to $etter assist "ou -d1 6s there an"thing else that we did not ask"ou a$out that "ou feel is important for us to know a$out "our e#perience+articipants were provided ample space to respond to the open(ended%uestions.

+articipants Age of participants ranged $etween 07 and 2 "ears -mean H 8'. "ears! SH 0/. "ears1. Dost participants were married -n H /! '8. 31 and >hite -n H7! 7 .'31. 6n addition! most had at least a college degree -n H 2! 87.231!with /.&3 -n H 0&1 with a postgraduate degree. Dore than half -8 .231 of thesample was emplo"ed! with /.73 -n H '1 retired. Dost participants wereliving with the stroke survivor -n H ! 7&.731. Relationship with the strokesurvivor varied! with 8 . 3 -n H &1 as the wives of the survivor! .03 -n H071 as children of the survivor! and onl" .73 -n H 1 as either a significant

other to the survivor or mother of the survivor. The participants@ various agesand relationships to the individuals who had a stroke potentiate the


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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 allowresearchers to make valid inferences from open(ended written responses to%uestions in surve" research -


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stroke survivor famil" mem$ers and the personal and environmentalstressorsKpro$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$e thee#perience of female caregivers who care for an adult famil" mem$er who hase#perienced a stroke within the previous "ear. The data anal"sis resulted infour ke" categories with related su$categories that conceptuali)e the processof struggling to cope and adapt with irreversi$le losses. The ke" categories ofmeaning are losing the life that once was! coping with dail" $urdens! creatinga new normal! and interacting with healthcare providers. The theme strugglingto cope and adapt with irreversi$le losses represents the latent content of thete#t. 6t su$sumes the su$stantive meaning across categoriesKconcepts -seeFigure 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 theirloved one e#perienced the stroke. Caregivers and the stroke survivors@ liveswere 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 feelingoverwhelmed! - 1 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 theirrelationship with the stroke survivor $ecause of the stroke. +articipantsreturned to this theme as the" attempted to make meaning of their changedlives. Their relationships with the stroke survivor was changed cognitivel"!emotionall"! and ph"sicall" as caregivers adapted to the significantl" alteredrelationships with loved ones. Dan" participants grieved the loss of the personthe" once knew. This change in the relationship was particularl" poignant

among married couples. ?ne woman wrote! ED" hus$and@s stroke has $eendevastating for m" famil". ?ur lives will never $e the same. ?ur financial!emotional! and ph"sical relationship is ruined. 6t is ver" difficult to e#plain theloss of a life partner due to his stroke. Iis apra#ia and cognitive deficits arever" difficult to overcome.E Another wife e#plained that she missed makingda"(to(da" decisions with her hus$and! E...not $eing a$le to ade%uatel"communicate together( to $e a$le to discuss decisions! $ig and little((as we@vedone the past & "ears.E The significance of how the stroke changed themarriage was an on(going stressor for participants.

Adult children who cared for a parent also identified changes in theirrelationship $ecause of the stroke. ?ne daughter caregiver wrote! EDother@s


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emotional status and a$ilit" to cope with and accept the mother(daughter rolereversal are chief concerns at the present time.E Another participante#pressed distress $" revealing! E ad has memor" loss as a result of hisstroke. The transition from who he was to who he is now is painful! sad!confusing! and frustrating. ?ften these emotions are present at the sametime.E This overriding theme of loss was evident throughout the commentsmade $" participants.

Caregivers also e#pressed their difficult" coping with the a$rupt changes inthe stroke survivor@s personalit". The stroke survivor was no longer who he orshe had $een. The caregiver was compelled to acknowledge their changedrealit" and to deal with the conse%uence of having to learn to cope and adaptto their new life on a moment(to(moment $asis. Caregivers descri$ed that!$ecause of the $rain inMur"! their loved one was often Edifficult to handle!EEcrank"!E Euncooperative!E and Edepressed.E ?ne woman descri$ed how herhus$and@s depression resulted in his unwillingness to get out of $ed.Caregivers descri$ed their loved ones $eing angr" with them for no apparentreason. As a conse%uence of the negative changes in the stroke survivors@personalities man" caregivers felt unappreciated and overwhelmed. ?ne wifesaid! EAll 6 do forG m" hus$and and he doesn@t sa" thank "ou unless 6 prompthim to. That hurts most of the time.E Another wrote! EFeeling muchunappreciated. Brain(inMured patients aren@t alwa"s nice and rarel" sa"thanks.E

Feeling ?verwhelmedCaregivers identified feeling overwhelmed with the ph"sical demands on theirtime and energ" $ecause of their loved ones sustaining a stroke. Constanc" ofcare! ph"sical demands and time constraints were areas fre%uentl" descri$ed$" caregivers. +articipants identified $eing continuall" needed $" the strokesurvivor to assist him or her with ph"sical needs! including mo$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. ?neparticipant 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 $eingfatigued $ecause of sleep deprivation. ?ne caregiver e#pressed! E6 get ver"tired sometimes. There are never enough hours and 6 don@t have the $estph"sical stamina to get ever"thing done all the time.E Another said! ELack ofsleep. Alwa"s interrupted with spouses needs.E Caregivers commonl"descri$ed how the constant interruptions prevented them from completingnecessar" tasks such as caring for their home. The" also descri$ed the stressof assuming each of the responsi$ilities that the stroke survivor had completedprior 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 andEdisorgani)ed.E ?ne woman wrote! E6 feel overwhelmed almost all of the time


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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 andoften conflicting demands of caregiving.

Dissing +ersonal Time

Caregivers also cited loss of personal time as a constant issue that the" facedafter the stroke. The demands of caregiving while taking on additionalresponsi$ilities around the house left little personal time for the caregiver. ?neparticipant descri$ed the loss of personal time $ecause of the stroke as E 6haveG no uninterrupted time for personal things! including showersK$aths! TJprogram or a movie! a chance to read or paint or pla" the organ. 9o chance toleave the house for a walk or to $ike...E Another descri$ed! E6 cannot leavewhen 6 want to!E and E6 have no downtime.E ?thers talked a$out how the" didnot have time to sociali)e or spend time with friends and famil". A daughterwished she could Ego out for fun and not worr" a$out ad.E A wife wrote! E6have to a$andon m" famil" and friends to care for m" hus$and.E A motherwrote a$out neglecting her children! ED" children get less time! and this iswhen 6 need to give them more time.E Another spouse e#pressed! E6 ammissing 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 itrelated to the stroke survivor@s future. ?ne participant worried that Eanotherstroke ma" $e looming.E Another participant stated! E...a $ig stressor is notknowing what the future holds: E>ill he have another stroke 6 feel 6 am coping?< with this one $ut additional dependence! need for assistance might $e toomuch.E Another wrote! E There are man"G what ifs ... such as will she $e a$leto successfull" return to work >ill she $e a$le to live independentl" E ?therparticipants descri$e how the" were una$le to fulfill their dreams $ecause ofthe stroke. ?ne stated! E6 feel that 6 have put a lot of dreams on hold! such asgoing awa" to college and much more.E

6n summar"! the stroke resulted in life(altering changes for the informalcaregiver. ver"thing from their relationship with the stroke survivor to theirplans 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 "earafter the stroke. 6n particular! dealing with financial strain and needing support

from friends and famil" were areas of particular concern.


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?n the positive side! some participants discussed the value of the supportthe" received from friends and families in providing them with the strength tocontinue their difficult Mo$s as caregivers. ?ne woman who was caring for hermother e#pressed! E6 was luck" enough to have a wonderful! understandinghus$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 friendswho support me without $eing intrusive.E Dan" caregivers stressed theimportance of making time to see friends and to sociali)e. Iowever! althoughfriendl" gestures were greatl" appreciated! the" also needed Etrue friendsEwho the" could openl" talk to a$out their deepest fears.

Creating a 9ew 9ormal

Caregivers identified striving to create a new normal. This processencompassed several su$processes! including adapting to a new realit"!seeing some good come from it! engaging in spiritualit"! and gainingconfidence in caregiver role.

Adapting to a 9ew Realit"

Adapting to a new realit" included recogni)ing the difficult" of caregiving andaccepting 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 lovedones. ?ne caregiver commented that it was helpful to have their ph"sician tellher that EThis is a marathon! not a sprint.E Although caregivers stressed theimportance of doing their $est to care for their loved ones! some participantsrecogni)ed that the" needed to take care of themselves and EreplenishreservesE to have the strength necessar" to $e effective caregivers. Someparticipants descri$ed grieving for their losses! accepting their new lives! andmoving on. ?ne woman wrote! EAfter all the lovel" cards and the hot mealsare delivered! there has to $e personal! private wa"s that an individual dealswith! grieves! and accepts what has happened.E Another woman simpl"

accepted her changed realit" as a matter of fact. EThe positive aspect ofcaregiving was difficult! $ecause it neither is positive or negative. 6t is what itis.E

Seeing Some =ood Come From 6t

Some caregivers pointed out that! although caregiving was ver" difficult! the"were a$le to find some good in their e#periences. ?ne woman wrote! EThere isa Mo" in caring for someone "ou love. 6t doesn@t mean ever"thing goessmoothl".E ?thers wrote a$out how the" gained strength from the courage

their loved ones showed in dealing with the stroke and its after(effects. A wifee#pressed! ED" hus$and is doing ever"thing he possi$l" can do to get $etter.E


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Some caregivers wrote a$out how the stroke strengthened their relationshipswith the stroke survivors. A daughter commented! E6 never had a closerelationship with m" ad! $ut after the stroke 6 have a relationship with him. 6have forgiven him for things in the past.E ?ne wife wrote! EThere is awonderful side of caregiving for m" hus$and((it has deepened our relationshipand forced us to sort out what is trul" important in our lives. 6 wouldn@t tradeplaces with an"one for this reason.E

ngaging in Spiritualit"

Some caregivers found strength in rel"ing on their spiritual $eliefs to helpthem cope with their losses. ?ne caregiver e#pressed! E...onl" =od know whatthe future holds! so 6@ll Must keep trusting him.E Another said! E6 would not $ea$le to do this without a strong spiritual life.E ?ther caregivers found comfort inpra"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@ -when6 was Must tr"ing to maintain it1. @9ike@ -Must do itN1 when 6 was facing a mountainof issues and decisions! @Ioops@ -as in Mumping through! and hoop circle(of(love1 ... andG @+revail@ when 6 needed to get through each da" or perhaps thene#t few minutes.E

=aining Confidence in Caregiver Role

Caregivers discussed how learning a$out the stroke survivors@ illness andneeded care helped them to $etter deal with $eing caregivers. The internetwas 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 6nternetand asking %uestions and taking notes to refer $ack to.E Dan" caregiverse#pressed the initial fear that the" had a$out caring for the stroke survivor andhow the" gained confidence with time. ?ne said! E6 am doing much $etter thanin the $eginning.E

6nteracting >ith Iealthcare +roviders

uring the turmoil of the first "ear after the stroke! caregivers often sought outhealthcare providers for advice and guidance for dealing with the challengesof caring for their loved one. Some caregivers related positive e#perienceswhen interacting with healthcare providers. The" e#pressed appreciating thecare received from healthcare providers! whereas other participants identified$eing dissatisfied with healthcare provider care. Dan" participants identifiedthe need for more coordinated care and offered advice to healthcare providerscaring for stroke survivors and their caregivers.

Appreciating Care From Iealthcare +roviders


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Caregivers identified several wa"s in which healthcare providers assisted theinformal caregiving in providing %ualit" care. Recogni)ing the caregiver@s needfor support and referring the caregiver to a support group was acknowledged$" several participants. An e#ample of a caregiver recogni)ing the need forsupport was e#pressed as! E6 think the value of having a support group orindividuals who "ou can call Must who listen and understand is huge.E Anotherparticipant stressed the importance of Ehaving people who have $een throughthis to talk to! who reall" understand ... what other people find useful.E+articipants also e#pressed a need for support groups that met the needs of"ounger caregivers: EJer" little support e#ists for the uni%ue challenges faced$" the significantl" "ounger spousal caregivers(support groups are directedeither 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 healthcareproviders! a few were frustrated with the care the" and their loved onesreceived. ?ne participant wrote! ECare! care! care! instead it seems to $e alla$out mone" to them or the" do as little as possi$le -with a few greate#ceptions1.E Another said! E 6G do not trust hospitals or @[email protected] ?thers e#pressed their dissatisfaction with not $eing listened to!stating! E...man" of the providersG simpl" do not listen.E ?ne woman wrote!EListen and $elieve me when 6 tell them a$out s"mptoms and reactions todrugs.E

Caregivers wanted healthcare providers to provide information on thee#pected recover" traMector" of the stroke patient that was $oth realistic "ethopeful. For e#ample! one participant said! E6 do know strokes are all differentso there are no reall" @normal@ patterns of healing! $ut 6 also felt like thedoctors did not tell me what to e#pect.E Another said! EIave more optimisma$out the stroke survivor@s recover".E Caregivers also wanted on(goinginformation on what to e#pect at different phases of the stroke survivor@srecover" process. For e#ample! one participant said! E=ive $etter directionand advice as to what to e#pect and what the $est recommendation would

have $een when morn came home. The" should haveG recommended anassessment(($efore we went ahead with $athroom remodel.E

9eeding Coordinated Care

Coordination of care was another common thread in responses related tointeracting with healthcare providers. +articipants e#pressed a desire forhealthcare 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 the providersG were all on the same page((sometimes 6 feel like 6 have to $e the doctor to sort out all of the differing


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opinions of specialists.E Another participant summari)ed the need forcoordinated care $" sa"ing! E6 wish 6 could have a doctorKnurse that could@manage@ @advise!@ @interpret!@ and help with feed$ack from all specialists.E 6naddition! caregivers desired $etter coordination of clinic appointments with onestating! EDinimi)e multiple appointments and com$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 referringthe caregiver to appropriate resources! managing medications! and acting in acaring manner. Caregivers e#pressed the need for healthcare providers tohelp them identif" appropriate resources for $oth the patient and themselves.For e#ample! one caregiver wanted to $e referred to a primar" care ph"sicianEthat is e#perienced with stroke patients.E ?thers wanted help with locatingsupport groups! mental health professionals! transportation to appointments!respite care! and o$taining assistive devices such as ramps.

Danaging medications was identified $" man" caregivers as an importantneed from healthcare providers. Caregivers wanted more information a$outthe coordination of medications! potential interactions! and side effects. 6naddition! the" wanted to feel confident that the healthcare provider wasprescri$ing appropriatel" and monitoring the medications. For e#ample! oneparticipant said! E don@tG Mump to add more medication with ever" s"mptom Must

$ecause he had a stroke.E Another advised! E


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Iealthcare providers positivel" and negativel" affected the a$ilit" of thecaregivers to cope and adapt to their changed lives. The ke" concepts thatreflect this process are as follows: -a1 losing the life that once was! -$1 copingwith dail" $urdens! -c1 creating a new normal! and -d1 interacting withhealthcare providers are discussed.

Losing the Life That ?nce >as

The ke" concept of losing the life that once was characteri)ed $" the caregiverhaving to cope with a changed relationship with the stroke survivor! feelingoverwhelmed! missing personal time! and facing an uncertain future. Theconcept that caused the most distress was coping with the changedrelationship with the stroke survivor. These concepts were particularl" evidentin spouses@ comments. 6n some instances! the stroke survivor@s personalit"was so drasticall" changed $ecause of the stroke that the stroke survivor nolonger seemed like the same person that the caregiver had known prior to thestroke. =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 growingevidence that caregivers! especiall" those who care for their loved ones withcognitive 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! ;


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of Coom$s - //21! in which eight spouses -five women and three men1 ofstroke survivors were interviewed at least 6 "ear after the stroke regardingtheir e#periences of providing care to a stroke survivor. Coom$s identified thee#perience of profound loss as an important theme! which included loss ofleisure time! loss of freedom! and loss of marital partner. ?ur findings e#tendthose of Coom$s in that findings from this stud" identified that caregivers livedwith the stress of an uncertain future and the loss of the anticipated future thatwas now not possi$le. 6n addition! our sample consisted of a "ounger group ofparticipants -mean age! 8'. "ears1 compared with sample in Coom$@s stud"-'8.8 "ears of age1. Oounger caregivers ma" $e more concerned with theuncertaint" of the future than older caregivers.

Coping >ith ail" Burdens

6n addition to feeling significant loss related to the changed relationship afterthe stroke! female caregivers of stroke survivors also found it necessar" tocope 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


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Creating a 9ew 9ormal

The participants identified the first "ear after the stroke as a time of makingsignificant adMustments in coping and adapting to their permanentl" changedlives. Some of the participants accepted their changed life and $egan creatinga new normal that included engaging in spiritualit"! gaining confidence! andseeing some good coming from caring for a loved one. Reali)ing thatcaregiving is constant and difficult was a finding identified in our stud" thatwas not found in the literature.

Seeing some good or $enefit(finding was another adapting mechanismidentified $" some caregivers. Benefit(finding has $een e#amined in otherstudies of caregivers in relation to the well($eing of the caregiver -


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reha$ilitation clinic! identified a related concept of E$eing familiar with newroutinesE -p. 0&271. Silva(Smith - //21! in a stud" of 0 new caregivers caringfor stroke survivors & weeks after discharge from reha$ilitation! also refers tocaregivers developing routines. Although the concept of developing a routineis similar to gaining confidence! it is different in that gaining confidence is ahigher(level concept associated with self(esteem and a changed sense ofself.

6nteracting >ith Iealthcare +roviders

Responses descri$ed caregivers@ perception of interacting with healthcareproviders as centered on appreciating care from healthcare providers! $eingdissatisfied with healthcare provider care! needing coordinated care! andoffering advice to healthcare providers. ?nl" a few studies were found thatspecificall" addressed the relationship $etween the stroke caregiver andhealthcare provider and mainl" focused on areas of improvement needed fromthe providers. Areas cited for improvement identified in these studies wereconsistent with those in our stud" and included healthcare providers providingmore information regarding resources for caregivers! respite care! nutrition!transportation! and ongoing education -


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Findings provide evidence that caregivers have specific needs that could $e$etter met $" healthcare professionals. ,nderstanding of the uni%uee#periences of female caregivers of stroke survivors is important for nurses toeffectivel" manage care and to provide needed support and guidance towomen caring for stroke survivors. Caregivers@ lives changed a$ruptl" andirreversi$l" as their loved ones sustained the stroke! resulting in grieving thepermanent changes in their loved ones and their shared relationship. Theirgrieving added an additional stressor to their need to cope with numerousph"sical! emotional! social! and cognitive stressors. Recogni)ing that griefma" pla" a role in the ps"chological well($eing of caregivers is important fornurses in determining the support needs of caregivers. 6n addition! it ma" $eimportant for nurses to assist caregivers in developing strategies forre%uesting and o$taining support from others.

+articipants offered several suggestions to healthcare providers to improvecare. First! participants advised providers to listen to caregivers@ reports ofmedication pro$lems and changes in the survivors@ $ehaviors and to offeranticipator" guidance to help caregivers regarding what the caregiver cane#pect during the recover" period. Referring caregivers to a support groupwas also fre%uentl" suggested $" participants. 6n addition! man" caregiversfound coordination of the stroke survivor@s care a significant challenge.Com$ining multiple appointments into fewer visits was suggested $" severalcaregivers. 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 caringfor stroke survivors. 6n summar"! the process of $ecoming a caregiver $egana$ruptl" when their loved one sustained a stroke resulting invar"ing degrees of cognitive! emotional! and ph"sical disa$ilities. ,pon gettingthe news of the stroke! the caregiver@s shared life that had e#isted with theloved 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 newnormal that had meaning and purpose. Finall"! participants identified specificactions and attitudes that healthcare providers could adopt! which couldincrease the effectiveness of providing care to stroke survivors.

Acknowledgments

The authors thank the female famil" caregivers who so generousl" providedtheir time and thought(provoking insights.

References


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Ale#ander! T.! ; >il)! =. - /0/1. Famil" caregivers: =ender differences inadMustment to stroke survivors@ mental changes. Rehahilitation +s"cholog"!88- 1! 08 (0' . doi:0/.0/ 2K a//0 8

Arno! +. S. - // 1. The economic value of informal caregiving! ,.S.! ///:Conference +roceeding. +aper presented at the American Association for=eriatric +s"chiatr"! Florida! Fe$ruar" &! // . doi:0/.0 22Khlthaff:07. .07

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Fran)en( ahlin! A.! Larson! 5.! Durra"! J.! >redling! R.! ; Billing! . - //21.+redictors of ps"chological health in spouses of persons affected $" stroke.5ournal of Clinical 9ursing! 0'-81! 778(7 0. doi:0/.0000KM.0 '8(2/ . //'./02&&.#

=amino! L. A.! Iogan! 9. S.! ; Sewell! . - // 1. Feeling the a$sence: acontent anal"sis from the Scott and >hite grief stud". eath Studies! '-0/1!2 (70 . doi:0/.0/7/K /2&7007/ /0/'87/

=rant! 5. S.! Bartolucci! A. A.! lliot! T. R.! ; =iger! 5. 9. - ///1.Sociodemographic! ph"sical! and ps"chosocial characteristics of depressedand non(depressed famil" caregivers of stroke survivors. Brain 6nMur"! 0&-0 1!0/7 (00//. doi: 0/.0/7/K/ ' /8//8/ / 87'

=reen! T. L.! ;


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doi:0/.0/ 2K +SO./$/0 e 07/&02cf&


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.orgKwhoParePfamil"PcaregiversKcarePgivingPstatstics.cfm

9o"es! B. B.! Iill! R. .! Iicken! B. L.! Luptak! D.! Rupper! R.! aile"! 9.


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caregivers of individuals with Al)heimer@s disease: results from a pilot stud" inan ur$an setting. Iealth and Social >ork! /-&1! 72( 8.

Schlote! A.! Richter! D.! Frank! B.! ; >allesch! C. >. - //'1. A longitudinalstud" of health(related %ualit" of life of first stroke survivors@ close relatives.Cere$rovascular iseases! - ( 1! 0 2(0& .

Silva(Smith! A. L. - //21. Restructuring life: preparing for and $eginning a newcaregiving role. 5ournal of Famil" 9ursing! 0 -01! (00'.doi:0/.0022K0/2&7&/2/' 2& 8

Simon! C.!


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Chronic Care! dward Iines! 5r.! JA Iospital! Iines! 6L.

9anc" S. Iogan! +h R9 FAA9! is a distinguished professor and the directorfor research at the Darcella 9iehoff School of 9ursing! Lo"ola ,niversit"Chicago! Chicago! 6L.

The stud" was supported $" the Lo"ola ,niversit" Chicago! the +almerFoundation! and the Chicago 6nstitute of 9eurosurger" and 9euroresearchFoundation. 6n addition! r. Sa$an was supported $" a ("ear Jeterans AffairsIealth 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/ 2K59 9./$/0 e 07 ae&fFIGURE 1Taxonomy of Categories and Subcategories

Struggling to Cope and Adapt it! Irre"ersible #asses

#osing t!e life Coping it! Creating a neInteracting t!at once as daily burdens normalit! !ealt!care pro"iders

Coping it! a $ealing it! Adapting toAppreciatingc!anged financial ane realitycare fromrelations!ip strain seeing some!ealt!it! stro%e good come frompro"iderssur"i"or &eeding support it from friends'eingFeeling and family Engaging indissatisfiedo"er !elmed spiritualityit! !ealt!


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pro"ider care(issing Gainingpersonal time confidence in&eeding caregi"er rolecoordinated careFacing anuncertainGi"ing ad"icefuture

Documents

Female Caregivers of Stroke Survivors