Characterizing Burden, Caregiving Benefits, and Psychological Distress of Husbands of Breast Cancer Patients During Treatment and Beyond

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1 Copyright B 2011 Wolters Kluwer Health Lippicott Williams & Wilkis Christia D. Wager, PhD Lala Tamoy Das Silvia M. Bigatti, PhD Aa Maria Storiolo, MD Characterizig Burde, Caregivig Beefits, ad Psychological Distress of Husbads of Breast Cacer Patiets Durig Treatmet ad Beyod K E Y W O R D S Burde of illess Iformal caregivers Psychological adaptatio Backgroud: Husbads, as the primary providers of support for wome with breast cacer, ca experiece sigificat burde ad role strai, but also perceive positive aspects to the caregivig. Little is kow about the specific caregivig tasks husbads perform, for howlog,orhowburdeadpositive aspects relate to later psychological distress. Objective: Our primary aim was to better characterize the caregivig resposibilities ad role strais of husbads durig active cacer treatmet ad 1 year later. We also evaluated positive aspects durig active treatmet. Our secod aim was to determie which of these predicted psychological distress 1 year later. Methods: Husbads of wome udergoig chemotherapy for breast cacer completed a battery of surveys durig the time of wives treatmet ad agai 1 year later. Results: Husbads performed a variety of caregivig tasks for wives durig ad after breast cacer treatmet ad also reported beefits associated with caregivig. Breast caceryrelated worries were high at both time poits. At 1 year after treatmet, role strais improved i the social domai but worseed i the domestic domai. Domestic strais durig active treatmet were the strogest predictor of 1-year distress. Coclusios: Husbads who report persistet domestic role strai are at high risk for cotiued psychological distress followig their wives breast cacer treatmet. Implicatios for Practice: Health care Author Affiliatios: Departmet of Psychology, DePauw Uiversity, Greecastle (Dr Wager ad Mr Das); ad Departmets of Public Health (Dr Bigatti) ad Medicie (Dr Storiolo), Idiaa Uiversity School of Medicie, Idiaapolis. This study was supported by Walther Cacer Istitute. Correspodece: Christia D. Wager, PhD, Departmet of Psychology, DePauw Uiversity, 7 E. Larabee St, Greecastle, IN (christiawager@ depauw.edu). Accepted for publicatio October 9, DOI: /NCC.0b013e f5 Beefits/Distress of Breast Cacer Patiets Husbads Cacer Nursig TM, Vol. 34, No. 4, 2011 E21

2 providers should moitor husbads caregiver burde regularly. Providig couples with resources to reduce domestic role strai (such as social support ad commuicatio traiig) may prevet or alleviate psychological distress i these husbads. Husbads play a pivotal role durig the periods of treatmet ad recovery of breast cacer patiets. Durig the course of this potetially life-threateig disease, patiets ofte experiece disease-iduced disability that causes role limitatios. As a result, husbads ofte take o the tasks that patiets ca o loger perform, over ad beyod their ow social ad familial roles, career-related obligatios, ad ew caregivig resposibilities. 1,2 This ew role of caregiver may result i reduced quality of life ad psychological distress. 3 Husbads act as the most frequet providers of support for breast cacer patiets 4 ; however, oly a small portio of the caregivig literature is devoted to me, leavig a gap i kowledge about the caregivig experiece of husbads of wome with breast cacer. Although caregivig was a role traditioally assumed by females i the past, a growig umber of males ow provide care. Recet estimates idicate that 39% of caregivers are male, 5 highlightig the importace of bridgig this geder gap i the caregivig literature. Theoretical Foudatio The Stress Process Model (Figure) of Pearli et al 6 provides a strog theoretical foudatio through which to uderstad the caregivig experiece of husbads of breast cacer patiets. This theory suggests that primary stressors ad secodary role strais are importat predictors of psychological distress. Primary stressors stem directly from the eeds of patiets ad iclude assistig with both activities of daily livig (ADLs; such as bathig, dressig, feedig) ad istrumetal activities of daily livig (IADLs; such as takig medicatio, shoppig, maagig fiaces). Secodary role strais represet ew hardships that arise as a result of primary stressors. The additio of primary stressors, such as ew caregivig resposibilities, ca spill over to egatively impact a caregiver s performace i a variety of domais, resultig i role strai. Therefore, primary stressors ad role strais ca lead to caregiver burde. Burde may be defied as a caregiver s perceptio that his physical health ad psychological well-beig, social life, ad fiacial status are egatively affected by the patiet s illess. 7 Primary Stressors: Caregivig Resposibilities Followig a wife s breast cacer diagosis, husbads must lear to balace ew iformal caregivig resposibilities with old ad ew social roles. Caregivig tasks ca iclude assistig with ADLs ad IADLs, i additio to maitaiig household chores such as cleaig ad cookig, as well as takig up resposibilities of rearig childre. Other time-cosumig roles reported by husbads iclude assistig patiets with emotioal support, trasportatio, ad moitorig symptoms. 3,8 Balacig caregivig resposibilities with work is also a great cocer, as the majority of caregivers are employed while caregivig ad report that caregivig egatively impacts their work resposibilities. 5 Secodary Role Strais Role strais may develop whe these ew caregivig resposibilities iterfere with the performace of the caregiver s ordiary, Figure The Stress Process Model of Pearli et al applied to husbads of breast cacer patiets. E22 Cacer Nursig TM, Vol. 34, No. 4, 2011 Wager et al

3 ocaregivig roles iside ad outside the home. These strais may produce perceptios of burde amog caregivig husbads. Meetig the cotiual ad fluctuatig eeds of patiets, i additio to copig with their ow psychological reactio to the illess, ca be emotioally ad physically taxig for husbads. 9 Additioally, husbad s role strai at diagosis is a sigificat predictor of his role strai 1 year later. 10 This suggests that husbads with the greatest role strai at the time of diagosis are ot reportig relief over time ad may ot seek assistace. Role strais have bee correlated amog breast cacer patiets ad husbads i both cross-sectioal 11 ad logitudial studies, 12 idicatig that the strai of parters is iterrelated. Perceptios of burde ca hider the husbad s ability to provide optimal support for his wife with breast cacer. Patiets fare better both physically ad emotioally whe their spouses are supportive, 13 ad other sources of support caot compesate for the egative effects of a parter relatioship that is uhelpful. 14 Positive Aspects of Caregivig I additio to caregiver burde, it is also importat to ote that the caregivig experiece is ot always perceived egatively ad ca eve be appraised as a life-ehacig experiece or opportuity for growth. Positive aspects of caregivig ca iclude persoal satisfactio, ehaced self-esteem ad self-efficacy, gaiig greater purpose i life, ad forgig a closer relatioship with the patiet. 15,16 Males are more likely to appraise the caregivig experiece as boostig their self-esteem tha females, 17 ad this ehaced caregiver esteem is associated with reportig less distress. 18 Caregivig ad Distress Research shows that husbads of breast cacer patiets report levels of distress comparable to ad sometimes eve greater tha the levels of distress reported by patiets. 11,19Y23 Caregivig burde may represet oe importat predictor of psychological distress amog husbads. Distress is highest amog husbads whose wives report higher symptom distress 17 ad fuctioal impairmet, 24 which may be the cases where husbads eed to provide more assistace, leadig to a stroger perceptio of caregiver burde. 25 Few studies have specifically examied which aspects of caregivig, both egative ad positive, relate to psychological distress of husbads over the course of breast cacer treatmet, which would allow for the developmet of more targeted itervetios. Some researchers have foud that subjective appraisals about the stressfuless ad beefits of caregivig are more importat predictors of caregiver depressio tha objective stress idicators, such as assistace with ADLs. 26 Eve fewer studies have examied the relatioship of burde ad distress over time for husbads of breast cacer patiets. Oe such study foud that role strai correlated with emotioal distress at 6 differet time poits, ragig from 7 to 10 days after a wife s breast surgery to 1 year later. 27 However, the relatioship of role strais to distress was examied with crosssectioal aalyses rather tha logitudially to determie the predictive value of role strai across time. Goals of the Preset Study Although there is a growig body of literature devoted to the adjustmet of husbads with breast cacer, curret studies do ot provide a detailed descriptio of actual caregivig resposibilities performed by husbads (primary stressors), degree of secodary role strais, or how these 2 factors chage i the first year of survivorship. Therefore, our first goal was to describe the caregivig resposibilities ad secodary role strais reported by husbads at the time of diagosis ad 1 year later to characterize their behavior over time. As a subgoal, we also aalyzed the extet to which husbads reported gaiig meaig from their caregivig experiece, to examie possible beefits of caregivig durig the wife s adjuvat treatmet, whe caregivig resposibilities were hypothesized to be the greatest. Although the Stress Process Model of Pearli et al 6 suggests that primary stressors ad secodary role strai are importat predictors of physical ad psychological distress, breast cacer caregivig studies have primarily focused o role strai as a outcome variable, a proxy for psychological adjustmet, 11,28 rather tha as a predictor of subsequet distress. Therefore, the secod goal of the preset study was to ivestigate caregiver burde ad positive aspects of caregivig as predictors of psychological distress both cross-sectioally durig treatmet ad 1 year later. Methods Participats At baselie assessmet, 119 husbads accompayig their wives with breast cacer to the ifusio cliic at a uiversity cacer ceter were approached ad agreed to participate i this study; o me who were approached at baselie declied participatio. Of those who were recruited, 81 (68%) retured completed questioaires at baselie. Oe husbad dropped out of the study because of divorce, ad 6 husbads reported durig follow-up phoe calls that they were o loger iterested i the study. The reasos why the remaiig 31 husbads did ot retur surveys are ukow. Fifty-eight husbads who completed the first survey idicated they would be iterested i further follow-up ad were mailed letters ad brochures 1 year later ivitig them to participate i a secod survey. Forty-oe of these husbads completed follow-up surveys, a 71% recruitmet rate. We were uable to ascertai the reaso for oretur of 17 follow-up questioaires because of limitatios imposed by the istitutioal review board. The sample was predomiatly white (97%), with a average age of (SD, 12.36) years. About a half of the participats were college graduates (47.5%) ad employed full time (67.5%), ad a large proportio of participats (48.7%) eared a aual icome greater tha $ Husbads reported marriage to Beefits/Distress of Breast Cacer Patiets Husbads Cacer Nursig TM, Vol. 34, No. 4, 2011 E23

4 their wives for a average of 25 (SD, 15.00) years. See Table 1 for a more detailed descriptio of demographic characteristics. Procedure After receivig approval from appropriate istitutioal review boards, research assistats approached breast cacer patiets ad their husbads at the cacer ceter i chemotherapy ifusio cliics. Research assistats explaied the purpose of the study to the couple ad asked husbads to participate. Husbads were eligible for the study if they were Eglish speakig, at least 18 years of age, ad married to a woma udergoig active treatmet. Husbads completed iformed coset at the ifusio cliic ad were provided a packet of questioaires to complete at home ad retur via mail upo completio. Research assistats moitored study completio ad called husbads who did ot retur surveys withi 2 weeks, durig each phase of data collectio, ad esured that husbads had received surveys, iquired whether husbads had ay further questios, ad ecouraged husbads to retur their surveys promptly. All participats who retured survey packets were compesated for their time with grocery gift certificates after each assessmet. Data were etered ad double-checked by traied research assistats. Measures PROJECT QUESTIONNAIRE This istrumet was developed by project persoel to obtai participat demographic data ad iformatio o patiet s Variables Table 1 & Husbad Demographic Variables ( = 40) Age, y Mea 53 SD 12 Years married Mea 25 SD 15 Ethicity White 97% Asia/Pacific Islader 3% Educatio, Below college graduate 21 College ad beyod 19 Employmet status, Employed 27 Uemployed 1 Retired 10 Disabled 1 Other 1 Icome level, e$ $40 001Y$ $ Table 2 & Patiets Breast Cacer ad Treatmet Characteristics ( = 40) cacer ad treatmet from the husbad. Results are preseted i Tables 1 ad 2. PRIMARY STRESSORS The Illess Impact Form provided a measure of primary stressors as outlied accordig to the Stress Process Model of Pearli et al. 6 Desiged by Gallo ad reported by Sexto, 29 this istrumet measures how much the patiet depeds o the spouse for ADLs ad how much the illess impacts the husbad s life. Caregivig resposibilities are assessed with a list of ADLs (eg, dressig, eatig, bathig, toiletig, ad walkig iside the house) ad IADLs (eg, trips outside, orgaizig appoitmets, maagig fiaces, takig medicatio, ad shoppig). Caregivers are asked how much the patiet depeds o them for each activity oa4-poitlikertscale(0=ever,1=sometimes,2=most times,3 = always).husbads were asked specifically about the eeds of the wife because of the breast cacer or its treatmet. Reliability has bee reported at! = I the preset study, reliability was estimated at! =.81 whe completed durig adjuvat treatmet ad! =.91 at 1 year follow-up. The Illess Impact Form also icludes a separate idicator of caregivig burde, which we refer to as caregivig impact, ad examied for descriptive purposes. The 5 items o this scale assessed whether husbads perceived illess-related chages i activities, roles, ad resposibilities as worries or problems i geeral. Agai, husbads were asked specifically about eeds of the wife because of the breast cacer or its treatmet. SECONDARY ROLE STRAINS Duratio, Mea (SD), mo Rage Cacer stage I 7 II 11 III 10 IV 9 Treatmet methods Chemotherapy 37 9 (17.57) 0.25Y96.00 Radiatio 20 2 (2.18) 0.50Y10.50 Hormoes (39.44) 2.00Y Type of surgery Lumpectomy 16 Mastectomy 24 The Psychological Adjustmet to Illess Scale (PAIS) 31 is a selfreport, 46-item measure assessig role strais ad the psychological ad social adjustmet of a spouse to their parter s illess. It icludes 7 domais, of which 5 were used for the measuremet of burde i the preset study: vocatioal, domestic, ad social eviromets as well as sexual ad exteded-family relatioships. Reliability coefficiets raged from a high of 0.87 for domestic eviromet to a low of 0.66 for exteded family. 31 I the preset sample, reliability raged from! =.44 for sexual relatioships to! =.83 for social relatioships. E24 Cacer Nursig TM, Vol. 34, No. 4, 2011 Wager et al

5 POSITIVE ASPECTS OF CAREGIVING Husbads completed the Positive Aspects of Caregivig Scale 15 at time 1 oly, whe their wives were udergoig adjuvat treatmet. This istrumet was desiged to assess positive meaig i caregivig reported by parters of HIV-positive gay me ad icludes 6 items rated o a 4-poit Likert scale (1 = strogly disagree, 2 = disagree, 3 = agree, 4 = strogly agree). The items were revised for use with husbads of wome with breast cacer ad assessed whether caregivig (1) has helped the husbad feel eeded, (2) has helped the husbad grow as a perso, (3) is a way to show love for his parter, (4) has brought him closer to his parter, (5) has taught him a lot about breast cacer, ad (6) has ivolved him with other groups ad orgaizatios. Folkma ad colleagues 15 report good reliability for this scale (! =.72). The calculated reliability estimate for our husbads of breast cacer patiets was! =.76. PSYCHOLOGICAL DISTRESS The Profile of Mood StatesYShort Form (POMS-SF), 32 a 30-adjective istrumet, assesses the itesity of 6 mood states from the past week usig a 5-poit Likert scale (0 = ot at all, 4 = extremely). The total mood disturbace score was used as a measure of psychological distress. The validity ad sesitivity of this scale have bee cofirmed i cacer populatios. 33 Reliability i the preset study at follow-up was strog,! =.92. Data Aalysis Our first goal, describig burde ad chages i burde over time, was aalyzed through a series of descriptive statistics ad 2-tailed paired-samples t tests. Descriptive statistics were used to describe husbad s demographic characteristics, wife s treatmet characteristics, ad positive appraisals of caregivig at baselie. Descriptive statistics were also calculated for baselie ad follow-up caregiver resposibilities, role strais, ad psychological distress. Paired-samples t tests were the computed to determie whether caregivig resposibilities, role strais, ad distress differed across the 2 time poits. To address our secod goal, we used a 2-step process to idetify which aspects of baselie burde predicted distress 1 year later. I the first step, we aalyzed the bivariate relatioships betwee potetial covariates (icludig husbad s age, educatio, employmet, ad icome ad wife s cacer stage ad treatmet variables), primary stressors, role strais, ad positive aspects of caregivig with mood disturbace. I the secod step, statistically sigificat correlates were the etered ito a hierarchical regressio equatio, cotrollig for baselie distress ad covariates. Results Equivalece of Baselie ad Follow-up Samples Because we were iterested i chages i burde ad distress from active treatmet to 1 year later, all aalyses were performed for the 41 husbads who retured both assessmets. To esure that husbads demographic ad wives disease characteristics were ot resposible for selective attritio, baselie ad followup samples were compared o demographic ad treatmet characteristics. Oe-way aalyses of variace ad # 2 tests revealed that the sample of husbads who completed follow-up assessmets did ot differ from the group of me who did ot complete follow-up surveys; o statistically sigificat differeces were foud i husbads age, educatio, employmet status, icome, ethicity, chroic health coditios, or years married (P 9.05). There were also o differeces betwee groups i wife s cacer stage or whether the wife was treated by mastectomy, lumpectomy, chemotherapy, or radiatio (P 9.05). Oe-way aalyses of variace revealed there were also o differeces i husbad s ratigs of wife s health, or time udergoig chemotherapy or radiatio treatmets betwee samples surveyed at each time (P 9.05). Goal 1: Descriptio of Husbads Burde Over Time To provide the most descriptive picture of caregiver burde possible, we examied idividual items of the Illess Impact Form durig treatmet ad at 1-year follow-up, to characterize the types of caregivig resposibilities husbads reported ad how they chaged over time. I the followig sectios, we describe burde i 2 broad categories: caregivig resposibilities (primary stressors) ad caregiver impact. Caregivig resposibilities detail the ADLs ad IADLs husbads performed, whereas caregiver impact assesses perceived chages ad worry experieced by the husbad as a result of his wife s breast cacer. PRIMARY STRESSORS Baselie Illess Impact Form scores raged from 0 to 20, with a possible rage of 0 to 66 (mea, 8.45 [SD, 4.80]). Follow-up scores raged from 1 to 33 (mea, 6.21 [SD, 6.38]). A 2-tailed, paired-samples t test determied that there was o sigificat decrease i overall caregivig resposibility (P 9.05) from time of treatmet to 1-year follow-up; however, examiatio of idividual items idicated that may resposibilities that husbads reported assistig with sometimes durig baselie were rated as tasks they ever assisted with at follow-up. To provide a more thorough descriptio of husbads assistace over time, ratigs of idividual items of the Illess Impact Form at both times are described i the followig sectios. Caregivig Resposibilities. Table 3 outlies the degree to which husbads assisted with ADLs ad IADLs at baselie ad follow-up. I geeral, husbads reported assistig more with IADLs as opposed to ADLs at both times. At baselie, husbads provided the most ADL assistace with dressig ad eatig. Husbads reported the highest levels of IADL assistace with shoppig ad maagig medicatio ad fiaces. At follow-up, the most commoly assisted IADLs icluded maagig fiaces ad shoppig, whereas dressig remaied the most frequetly reported ADL. Two-tailed paired-samples t tests comparig specific forms of ADL/IADL assistace from baselie to follow-up revealed that assistace with medicatio Beefits/Distress of Breast Cacer Patiets Husbads Cacer Nursig TM, Vol. 34, No. 4, 2011 E25

6 Table 3 & Activities of Daily Livig ad Istrumetal Activities of Daily Livig Performed by the Husbads Frequecies Frequecies Items a Time 1 Time 2 Items a Time 1 Time 2 Dressig Trips outside Never 65% 82% Never 58% 79% Sometimes 35% 15% Sometimes 27% 9% Most times 0% 0% Most times 12% 6% Always 0% 3% Always 3% 6% Eatig Orgaizig appoitmets Never 70% 91% Never 52% 82% Sometimes 27% 6% Sometimes 43% 12% Most times 0% 0% Most times 5% 6% Always 3% 3% Always 0% 0% Bathig Maagig fiaces Never 82% 85% Never 52% 73% Sometimes 15% 12% Sometimes 25% 9% Most times 3% 0% Most times 13% 12% Always 0% 3% Always 10% 6% Toiletig Takig medicie Never 90% 94% Never 60% 79% Sometimes 10% 3% Sometimes 32% 15% Most times 0% 0% Most times 3% 3% Always 0% 3% Always 5% 3% Walkig iside the house Shoppig Never 92% 94% Never 33% 73% Sometimes 8% 3% Sometimes 50% 12% Most times 0% 0% Most times 12% 9% Always 0% 3% Always 5% 6%s Time 1 Time 2 Have you had to make chages i your life because of your wife s breast cacer (BC)? Yes = 68% Yes = 61% Have you had to take o ew roles ad resposibilities because of her BC? Yes = 68% Yes = 61% Have you had to give up activities because of her BC? Yes = 50% Yes = 30% Have you had sigificat problems due to her BC? Yes = 90% Yes = 91% Do you worry about your wife because of her BC? Yes = 95% Yes = 97% a Questio was as follows: Because of the breast cacer, how ofte is your parter depedet o you for the followigi. (t 34 =2.23,P =.03) ad shoppig (t 34 =2.38,P =.02)decreased sigificatly with time. Caregivig Impact. Husbads were also asked to idicate whether their wives breast cacer had impacted various aspects of their lives (Table 3). Most husbads reported impact i various domais, with the highest at both times beig worry about the wife s breast cacer. Paired-samples t tests revealed o sigificat differeces i reports of impact over time (P 9.05). SECONDARY ROLE STRAINS Descriptive statistics are provided to characterize role strais of these husbads at both times, whereas 2-tailed paired-samples t tests demostrate chages i role strai over the 2 time periods. Total role strai, computed by addig all items from the 5 PAIS subscales, was reported at baselie (mea, [SD, 7.67]; rage, 2Y51 of a possible 0Y93) ad follow-up (mea, [SD, 14.00]; rage, 5Y63). Total role strai decreased sigificatly over time (t 31 =2.59,P =.01);however,the rage ad variability of role strai were greater at follow-up. For the idividual subscales of the PAIS, scores were added ad the divided by the umber of items o each scale to allow comparisos amog subscales, which the raged from 0 to 3, with higher scores idicatig greater role strai. See Table 4 for descriptive statistics for each subscale at both times. Twotailed paired-samples t tests comparig baselie to follow-up subscale scores revealed that social relatios sigificatly improved (t 34 =2.68,P =.01), whereas the domestic eviromet role strai (t 34 = j2.63, P =.01) worseed sigificatly at 1-year follow-up compared with baselie. There were o sigificat chages i vocatioal role strai, sexual relatios, or family relatios over time (P 9.05). RELATIONSHIPS BETWEEN PRIMARY STRESSORS AND SECONDARY ROLE STRAINS Correlatio aalyses were performed amog measures of burde. A positive associatio was foud betwee the total caregivig resposibility score (primary stressor) ad total role strais at baselie (Pearso r = 0.40, P =.01), idicatig that E26 Cacer Nursig TM, Vol. 34, No. 4, 2011 Wager et al

7 Table 4 & PAIS Role Strais Durig Treatmet ad 1 Year Later Subscales Mea SD Mea SD t df P Vocatioal eviromet (effects o work, school, or t 31 = j home activities) Domestic eviromet (effects o family members) t 33 = j Social eviromet (effects o social ad leisure time activities) t 33 = Sexual relatios (effects o quality of sexual fuctioig) t 32 = j Exteded-family relatios (effects o exteded-family members) t 33 = Abbreviatio: PAIS, Psychological Adjustmet to Illess Scale. Time 1 Time 2 the perceptio of role strai icreased with moutig caregivig demads. Examiatio of role strai subscales idicated that caregivig resposibilities iterfered sigificatly with sexual relatios (Pearso r =0.34,P =.04)adthesocialdomai (Pearso r = 0.48; P G.01). See Table 5 for correlatio coefficiets. POSITIVE ASPECTS OF CAREGIVING Table 6 reports the descriptive statistics for the items of the Positive Aspects of Caregivig Scale ad demostrates that husbads, o average, appraised their caregivig as a experiece that produced both itrapersoal ad iterpersoal growth. The total scorecaragefrom6to24,adtheaveragescoreithissample was (SD, 2.20). The positive aspects of caregivig score was the correlated with all baselie ad follow-up measures of burde, ad o sigificat associatios were foud (P 9.05). Goal 2: Relatioship Betwee Burde, Positive Aspects of Caregivig, ad Psychological Distress Psychological DistressVPOMS-SF Total scores o the POMS-SF ca rage from j20 to 120, with higher scores idicatig greater distress. At baselie, POMS-SF mood disturbace scores raged from j12 to 70, with a mea of (SD, 21.79), idicatig that although average reports of psychological distress were low, there was substatial variatio amog participats. Reports of distress were comparable at follow-up (mea, [SD, 19.21]; rage, j9 to 82), ad 2-tailed paired-samples t tests revealed o differeces betwee the 2 time periods (t 39 =0.13,P 9.05). PREDICTORS OF PSYCHOLOGICAL DISTRESS FROM THE APPLIED MODEL The secod objective of this study ivestigated how well burde experieced durig treatmet predicted mood disturbace 1 year later. Burde was coceptualized as primary stressors ad secodary role strais, accordig to the Stress Process Model of Pearli et al. 6 We were also iterested i whether positive perceptios of caregivig durig adjuvat treatmet, whe a wife is most likely to be sick ad require assistace, would also predict psychological distress 1 year later. To accomplish this goal, aalyses were coducted i 2 steps. First, baselie caregivig resposibility, role strais, ad positive aspects of caregivig ad potetial covariates were correlated with follow-up distress. Caregivig resposibilities, positive aspects of caregivig, ad role strais i vocatioal, domestic, ad social domais at baselie emerged as sigificat positive correlates of distress 1 year later. Because vocatioal role strai correlated sigificatly with age ad employmet, these potetial cofoudig demographic variables were cotrolled i the subsequet Table 5 & Pearso Correlatios Amog Study Variables Variable Age 2 Icome Employmet 0.35 a j0.35 a 4 Caregivig resposibilities j Vocatio RS 0.40 b j b Domestic RS j0.24 j0.17 j j Sexual RS b Family RS 0.18 j Social RS j0.17 j a 0.39 b Total RS j j a j b 11 Positive aspects j j Distress j0.04 j b 0.39 a 0.44 a b a Abbreviatio: RS, Role Strai. a P G.05. b P G.01. Bold values are sigificat at.05 level or below. Beefits/Distress of Breast Cacer Patiets Husbads Cacer Nursig TM, Vol. 34, No. 4, 2011 E27

8 regressio aalysis. Refer to Table 5 for correlatio coefficiets amog all variables. Baselie caregivig resposibilities, positive aspects of caregivig, ad domestic, vocatioal, ad social role strais were etered ito a hierarchical regressio equatio, cotrollig baselie distress, icome, ad age, to test the relative stregth of each baselie predictor of follow-up distress. The results idicated that baselie domestic role strai ($ =.35,P =.01) durig wife s breast cacer treatmet predicted psychological distress 1 year later, eve after cotrollig for demographic characteristics ad baselie mood disturbace (" =.51,P =.01; R 2 $ =0.17,F$ 5,28 =2.96,P =.03). The additio of caregivig resposibilities ad role strais i the secod step of the equatio explaied a additioal 12% of the variace, above the cotributios of baselie distress ad demographic covariates; the fial model accouted for a total of 58% of the variace. Table 6 & Positive Aspects of Caregivig Caregivig Helps HusbadsI Discussio Mea (SD) Feel eeded 3.05 (0.68) Grow as perso 3.15 (0.53) Show love for parter 3.68 (0.47) Feel closer to parter 3.33 (0.57) Lear about breast cacer 3.45 (0.68) Become ivolved with groups/orgaizatios 2.30 (0.69) As the populatio of breast cacer survivors cotiues to grow ad ecoomic hardships dictate more chroic health care be performed by iformal caregivers at home, the burde placed o husbads of wome with breast cacer will cotiue to rise. Recet research has estimated the total time associated with caregivig for wome with breast cacer durig the first 2 years followig diagosis as a average of 6.4 hours per day for 13.6 moths, for a total time cost of more tha $ We aimed to provide a more thorough descriptio of caregivig resposibilities, role strai, ad beefits of caregivig reported by these husbads ad also determie their relatioship to psychological distress 1 year later. Most research o cacer caregivig occurs durig the diagostic, treatmet, or termial phases of illess, leavig us with limited kowledge about adjustmet of patiets ad husbads after treatmet, durig ormal recovery. 35 This study provides a importat glimpse ito the caregivig resposibilities performed by husbads ad the strai, which spills ito other domais of their lives, both at the time of active treatmet ad 1 year later. Husbads reported assistace with a variety of ADLs ad IADLs for their wives, with the most frequetly reported activities icludig dressig, eatig, shoppig, ad maagig medicatios ad fiaces. Assistace levels reported for most ADLs remaied costat, but this was ot surprisig as reports of assistace were relatively low. We were surprised, however, by stable reports of assistace with dressig 1 year later. Although we expected may husbads to assist their wives with dressig immediately followig surgery, we believed this assistace would decrease sigificatly 1 year or more followig surgery. Although we did ot iquire about the specific reasos for assistace, these fidigs may poit to cases of lymphedema or other log-term physical limitatios associated with the cacer treatmet. Husbads also idicated they adopted ew domestic duties that were typically performed by wives before breast cacer. A year later, husbads assisted less with medicatio maagemet ad shoppig. However, duties that might be more stereotypically performed by me, such as maagig fiaces, remaied a frequet ad stable form of assistace. Oe of our most importat fidigs was a uexpected oe. Because rates of caregivig resposibility were low at baselie, dramatic decreases were ot expected; however, reports of impact such as breast cacer worry, added resposibilities, ad activities give up sice breast cacer diagosis were strogly edorsed by participats at baselie ad expected to decrease with time. Surprisigly, these forms of burde remaied uchaged. This fidig of persistet impact despite reductio of caregivig resposibilities highlights the complexity of the caregivig role ad advocates for a multidimesioal assessmet of the costruct. Hoea et al 36 distiguished betwee several dimesios of caregivig, icludig objective ad subjective burde. Objective burde refers to evets ad activities associated with the caregivig role, such as ADLs ad IADLs, whereas subjective burde describes the subjective experiece of a caregiver. Drawig these distictiosbetweetypesofburdeprovesimportat,assome studies idicate a stroger associatio betwee psychological distress ad subjective burde, compared with objective burde. 26 Although our study did ot thoroughly assess subjective burde, our impact items were edorsed highly ad remaied stable over time, whereas assistace with ADLs was low ad decreased with time. These reports demostrate that the log-lastig impact of breast caceryrelated cocers for husbads does ot ecessarily edwithtreatmetcompletio, ad what remais may be more related to subjective burde tha objective burde. These subjective forms of burde are less apparet ad more likely to be cocealed by husbads i a effort to reduce the patiet s cocer, which places a eve greater demad o health care professioals to assess ad moitor the more subjective experieces related to caregivig. Cliicias ad researchers should always examie both objective ad subjective forms of burde to develop a thorough uderstadig of the experiece of caregivers. Our fidigs are cosistet with the logitudial fidigs of Hoskis et al, 27 who reported sigificat associatios betwee PAIS role strais ad psychological distress across multiple assessmets. We exted their fidigs by ivestigatig whether early burde ad role strais could predict psychological distress 1 year later. We foud that baselie caregiver resposibilities ad role strais i the domestic, vocatioal, ad social domais correlated sigificatly with later distress ad explaied variatio i psychological adjustmet of husbads above ad beyod their baselie distress ad demographic characteristics. Furthermore, domestic role strai emerged as a particularly oteworthy variable i this study. Although iitial reports of role strais were low, domestic role strai worseed over time, suggestig E28 Cacer Nursig TM, Vol. 34, No. 4, 2011 Wager et al

9 that the impact of breast cacer may accumulate gradually for husbads ad their wives at home. Domestic role strai was also the strogest predictor of psychological distress over time. Domestic role strai assesses the husbad s perceptio of the quality of his relatioship with the patiet ad other family members, i additio to measurig how much the patiet s illess has impacted domestic duties, ad how other family members have shifted duties to help the husbad. There may be may explaatios for why husbads experiece more role strai with time ad why domestic role strai exerts such a strog ifluece o husbads psychological health. Oe possibility is that much of the outside support a couple receives is likely to be directed toward assistig the patiet more tha the husbad, so whereas her domestic duties are decreasig, his are icreasig. Northouse 37 reported that husbads perceive less social support tha breast cacer patiets, which may lead to domestic role strai for husbads. Aother possible explaatio may be that although outside support is quickly mobilized ad strog at the time of diagosis ad durig treatmet, much of that support may be withdraw oce treatmet eds. A third explaatio for higher domestic role strai at 1 year could be that domestic ad family coflicts are avoided topics durig the iitial crisis stage of breast cacer diagosis ad treatmet. Whe treatmet cocludes ad ormal family life resumes, these avoided topics may resurface ad create coflict. Each of these potetial explaatios warrats further study. I additio to assessig primary stressors ad secodary role strais, this study also ivestigated positive aspects of caregivig, a ofte eglected area of focus i may caregivig studies. Husbads i this study edorsed several beefits associated with caregivig, icludig feelig eeded, experiecig growth, ad beig able to show love for their parter. Whereas recet studies have foud that caregiver esteem is associated with decreased stress ad icreased quality of life amog husbads carig for cacer survivors, 17,18 we foud that positive aspects of caregivig were associated with icreased distress. Positive aspects of caregivig did ot emerge as a sigificat, idepedet predictor i the test of our model, however. The disparities betwee our fidigs ad those of Kim ad colleagues 17,18 may be a product of methodological differeces icludig desig (logitudial vs cross-sectioal), time of assessmet (active treatmet vs survivorship), measuremet costructs (positive aspects of caregivig vs caregivig esteem), ad types of cacer (breast oly vs mixed). The fidig that distress was higher for caregivers who perceived caregivig more positively warrats further ivestigatio to determie what this meas. Oe possible explaatio could be that those who foud the most meaig from caregivig, who ejoyed feelig eeded, or who appreciated a icreasig bod with their spouse durig treatmet could have bee let dow followig treatmet completio, as a ormal routie resumed ad they foud they were ot eeded or could ot ejoy as much time with their spouse. Alteratively, those most distressed may be actively pursuig more meaig i a effort to cotrol their distress, usuccessfully i the log ru. Other researchers have also reported o relatioship betwee perceived beefits of caregivig ad psychological distress of caregivers. 38 These coflictig fidigs may led support to the view that positive aspects of caregivig are more strogly related to positive affect variables, such as happiess, tha egative affect variables, such as psychological distress. 39 I a study testig this assumptio amog caregivers of patiets with Alzheimer s disease, burde was associated with distress, whereas caregiver satisfactio wasassociatedwithpositiveaffect. 40 We did ot measure positive affect ad are thus uable to test this hypothesis i our ow study. Future research should try to elucidate these relatioships further because positive aspects of caregivig have the potetial to serve a protective fuctio amog cacer caregivers. Several treatmet implicatios stem from the preset study. Clearly, breast caceryrelated cocers persist for a exteded period. These fidigs are a strog remider to health care providers that husbads are ot automatically relieved of burde ad worry whe treatmet eds, ad domestic life does ot automatically proceed without strai. Whe provided the opportuity to follow up with breast cacer patiets ad their husbads, health care providers must remai vigilat to persistig difficulties with adjustmet, especially impact ad balace of domestic duties with other roles. The geeralizability of these fidigs must be placed i the cotext of the methodological limitatios of this study, the most sigificat beig the small sample size ad coveiece samplig. Our sample was homogeeous, composed primarily of white, college-educated, middle-aged me. Because breast cacer is more prevalet amog older wome, our sample is represetative of the age of the geeral populatio of husbads of breast cacer patiets. However, cocer regardig the limited ability to geeralize the fidigs to other ethic groups ad husbads from other socioecoomic groups is valid ad too ofte a research limitatio i this area. Additioally, our sample cosisted of husbads who accompaied their wives to treatmet. May husbads do ot accompay their wives to cliic because of persoal preferece or ecoomic limitatios that prohibit them from missig work. Therefore, the husbads i our study may be composed of a urepresetative group of me who provide high levels of social support ad have high ecoomic stadig, which meas our fidigs may uderestimate the burde ad psychological distress of less advataged populatios. Ideally, recruitig from amog all husbads of curret chemotherapy patiets may have resulted i a more represetative sample. However, our ow experiece suggests problems with such methodology as well, amely, poor accrual, which may explai why our procedures are commoly used. 13,41,42 Other authors have oted this limitatio whe recruitig husbads of breast cacer patiets, 42 but also ote that eve if samples were recruited through radom selectio, bias would still exist as a result of self-selectio to this type of study. Despite these limitatios, the preset study adds sigificatly to our uderstadig of burde, positive appraisals of caregivig, ad psychological distress amog husbads of wome with breast cacer. Our descriptive aalysis of caregivig resposibilities idetified the ADLs ad IADLs most frequetly reported by husbads ad revealed that, although these caregivig resposibilities decrease with time, impact remais high. Beefits/Distress of Breast Cacer Patiets Husbads Cacer Nursig TM, Vol. 34, No. 4, 2011 E29

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