Aging & Mental Health, 2015 Vol. 19, No. 1, 46
54, http://dx.doi.org/10.1080/13607863.2014.913551

Incongruence between stroke survivor and spouse perceptions of survivor functioning and effects on spouse mental health: a mixed-methods pilot study Michael J. McCarthya* and Karen S. Lyonsb a

School of Social Work, College of Allied Health Sciences, University of Cincinnati, Cincinnati, OH, USA; bSchool of Nursing, Oregon Health and Science University, Portland, OR, USA (Received 19 January 2014; accepted 7 April 2014) Objectives: This pilot study investigated stroke survivors’ and caregiving spouses’ individual perspectives on survivor cognitive and physical functioning and the extent to which incongruence between partners’ perceptions affects spouse depressive symptoms and overall mental health. Method: Mixed-methods, with quantitative survey data from 35 couples and qualitative interview data from a subsample of 13 couples being collected and analyzed using paired t-tests, multiple regression with survivor
spouse discrepancy scores as predictors of spouse depressive symptoms, and interpretive-description techniques. Results: Quantitative data indicated that spouses rated survivor cognitive functioning as significantly worse than survivors rated their own and that survivor
spouse discrepancy scores for physical functioning were significantly associated with spouse depressive symptoms. Qualitative data enhanced understanding about the nuances of partner incongruence and the ramifications of partner incongruence for spouse mental health. Conclusion: Partner incongruence has an impact on spouse depressive symptoms and overall mental health. Interventions targeted at survivor
spouse dyads and focused on improving communication between partners about survivor abilities may be effective for improving the mental health of spousal caregivers. Keywords: stroke; couples; functioning; incongruence; depression

Introduction Approximately every 40 seconds, someone in the United States has a stroke (Roger et al., 2012). Stroke is the fourth leading cause of death in the US, as well as a major cause of long-term disability worldwide (Mendis, 2013; Roger et al., 2012). Although risk factors for stroke vary, the odds of having a stroke is more than double after the age of 55 and for each subsequent decade of life (Goldstein et al., 2011). Consequently, about two-thirds of all strokes occur in people aged 65 or older (Roger et al., 2012). Individuals who survive stroke often face an array of short- and long-term challenges. It is estimated that after initial treatment, approximately 80% of ‘survivors’ return to the community where they depend on informal caregivers such as spouses for critical support in meeting their physical and emotional needs (Chumbler et al., 2004). The health impacts of caregiving are striking. For example, stroke caregivers can experience an up to 27% increased risk of themselves experiencing a stroke, while caregivers for stroke and similarly disabling conditions experience a 63% higher risk for premature mortality (Haley, Roth, Howard, & Safford, 2010; Schulz & Beach, 1999). The emotional impact of caregiving is also profound with rates of depression being at least three times higher for caregivers than the general US population (Cecil et al., 2010; Han & Haley, 1999; National Institute of Mental Health, 2013). Depression in caregivers has been associated with poor outcomes for both partners *Corresponding author. Email: [email protected] Ó 2014 Taylor & Francis

including low-perceived health and increased emotional distress in caregivers, and decreased social participation and impaired communication and cognitive functioning among care recipients (Carod-Artal, Ferreira, Trizotto, & Menezes, 2009; Klinedinst et al., 2009; Perrin, Heesacker, Stidham, Rittman, & Gonzalez-Rothi, 2008). Although research has begun to uncover factors associated with the mental health of spousal caregivers, few studies have examined how the complex interplay between survivors and spouses, especially with respect to each persons’ different and often conflicting perspectives on the survivor’s post-stroke functioning, can impact spouses. The purpose of this study is to investigate survivors’ and spouses’ individual perspectives on survivor functioning and the extent to which incongruence between these perceptions affects spouses’ mental health.

Literature review In general, studies investigating mental health among spouses in stroke and other chronic illnesses tend to focus on how the symptoms or consequences of the illness (e.g. patient cognitive or physical disability) contribute to high caregiving demand, subsequent caregiving ‘strain’ and, ultimately, to poor spouse mental health over time (Gaugler, 2010; Greenwood, Mackenzie, Cloud, & Wilson, 2008; Han & Haley, 1999; Majerovitz, 2007; Rigby, Gubitz, & Phillips, 2009). An emergent body of literature has begun to focus on the dyadic context of the illness experience and the

Aging & Mental Health important role of interpersonal aspects of the caregiving experience, including relationship quality, spousal communication patterns, and interpersonal misunderstandings and expectations, on spouse mental health (Berg & Upchurch, 2007; Blonder, Langer, Pettigrew, & Garrity, 2007; Coyne & Smith, 1991; Godwin, Swank, Vaeth, & Ostwald, 2013; Hinnen, Ranchor, Baas, Sanderman, & Hagedoorn, 2009; King et al., 2001; Kuijer, 2000; Lewis, Fletcher, Cochrane, & Fann, 2008; Lyons, Jones, Bennett, Hiatt, & Sayer, 2013; Manne, 2007; McCarthy, Lyons, & Powers, 2012; VisserMeily, Post, Schepers, & Lindeman, 2005). Within this growing body of research, studies are focused on understanding patient and caregiver appraisal of the illness context and factors that contribute to incongruent appraisals (Cano, Johansen, & Franz, 2005; Lobchuk, Kristjanson, Degner, Blood, & Sloan, 1997; Lyons, Zarit, Sayer, & Whitlatch, 2002; Retrum, Nowels, & Bekelman, 2013). To date, however, few studies have examined the consequences of incongruence. That is, whether the extent to which patients and caregivers are ‘on the same page’ about the illness has a notable impact on each partner’s outcomes. What little research that does exist tends to focus on the effects of incongruence on patients rather than caregivers. For example, Heijmans, DeRidder, and Bensing (1999) found that incongruence between patients with Addison disease and their spouses about disease symptoms predicted poor physical and social functioning in patients. In patients with chronic fatigue syndrome, incongruence between patients and spouses, about patient symptoms, predicted poor psychological adjustment in patients (Heijmans et al., 1999). Franks, Hong, Pierce, and Ketterer (2002) also found that heart patients and spouses who were congruent in positive ratings of patient health experienced fewer depressive symptoms. Our current understanding about how incongruence in illness appraisals may impact stroke spousal caregivers is indirectly informed by qualitative studies that describe the distress spouses experience when they perceive that survivors are trying to do too much too soon, putting themselves at unnecessary risk, or not adhering to therapy recommendations or medical regimens (Cecil et al., 2010; GosmanHedstr€ om & Dahlin-Ivanoff, 2012; Grant, Glandon, Elliott, Giger, & Weaver, 2004; King, Ainsworth, Ronen, & Hartke, 2010). These findings are supported by quantitative studies with large samples. For instance, Molloy et al. (2005) reported that high stroke caregiving demand and low-perceived control over the survivor’s recovery were predictive of caregiver depression. Recent studies have examined similarities and differences in how spouses experience stroke, including shared and unique correlates of depression between partners. For example, McCarthy et al. (2012) found that, although both partners’ depressive symptoms were significantly impacted by relationship quality and each partner’s perception of being ‘buffered’ by the other partner (e.g. partners hiding worries from one another), only survivors were significantly impacted by feeling misunderstood by spouses and only spouses were significantly impacted by a lack of active engagement on the part of survivors (e.g. survivor discussing the stroke openly with spouse).

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Although survivors and spouses both experience high rates of depression after stroke, each partner appears to experience stroke differently, in relation to one another as well as in relation to their own depression. Thus, the degree of similarity or difference between partners’ perceptions may be a critical factor related to mental health. These findings are supported by the developmental
contextual model of coping which purports that couples with incongruent experiences of the illness are more likely to experience poor adjustment (Berg & Upchurch, 2007). The above evidence suggests that incongruence between survivors and spouses about survivors’ poststroke functioning may lead to high levels of spouse emotional distress. However, no single study to date has used a mixed-methods approach, with data provided from the standpoint of each partners’ individual perspective, to investigate incongruence and how it specifically relates to stroke spousal-caregiver depression and overall mental health. This study adds to a small but growing body of research focusing on how couple dynamics can have appreciable impacts on spouses caring for stroke survivors. In particular, we sought to answer the questions: To what extent do stroke survivors and spouses have differing perceptions about the survivor’s post-stroke abilities (i.e. incongruence), in what respects do these perceptions differ, and, from the standpoint of spouses, do differing perceptions have a negative impact on spouses’ depressive symptoms and general mental health?

Methods Design Data for this study were originally collected for an exploratory study to identify individual (e.g. survivor functioning) and dyad-level (e.g. communication and coping patterns, interpersonal misunderstandings, mutual expectations) predictors of depression in stroke survivors and spousal caregivers (McCarthy et al., 2012). A parallel aim of that study was to qualitatively explore couples’ experiences of stroke, including the impact of stroke on the lives of individual partners and couples. This study uses a mixed-methods approach, which Creswell, Plano, Gutmann, and Hanson (2003, p. 212) define as the ‘collection and analysis of both quantitative and/or qualitative data in a single study in which the data are collected concurrently or sequentially, are given a priority, and (are integrated) at one or more stages of the research process’, to provide a thorough treatment of the current research questions using quantitative survey data (i.e. survivor functioning, spouse depressive symptoms) and qualitative interview data from the original study.

Participants A purposive sample of participants was recruited over 12 months through provider referral, stroke support groups, and print- and web-based sources. Survivors and spouses who expressed an interest in participating were pre-screened for eligibility by the Principal Investigator (PI) to ensure that

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they were cognitively able to participate. To be included in this study, participants had to be currently in a committed relationship (i.e. married and/or living together), have experienced stroke between one and 36 months prior to the interview, and be capable of providing informed consent and responding to the interview questions. In total, 35 eligible couples were included. Procedure Data were collected in two stages. First, a structured, faceto-face interview was used to obtain participant demographic information, to measure each partner’s perceptions of the survivor’s functioning, and to measure each partner’s perceptions of his/her own depressive symptoms. Interviews with survivors and spouses took place separately, at the same time, and were conducted by the PI and a Graduate Research Assistant in couples’ homes, in a community location, or in the PI’s offices. The second stage of data collection consisted of interviewers engaging survivors and spouses, also separately, in an open-ended conversation about the ways in which the stroke had impacted their own life, the life of their spouse, and their lives as a couple. A formal interview guide was not used. Instead, conversations were fluid and allowed to progress within the broad goals of the original study (i.e. to understand the impact of stroke on the lives of individual partners, as well as couples). Conversations were audio-recorded. After each participant had completed both portions of his/her interview, couples were given $50 in appreciation for their time. Informed consent was obtained from all study participants prior to the interview. Study activities were overseen by the Institutional Review Boards of participating healthcare systems and (blinded for review) University. Measures Functioning The Stroke Impact Scale: version 3 (SIS; Lai, Perera, Duncan, & Bode, 2003) was used to measure each partners’ perceptions about the survivor’s functioning. The SIS asks participants to rate the degree of difficulty survivors have in accomplishing different tasks on a scale ranging from ‘1’ (not difficult at all) to ‘5’ (could not do at all). Cognitive functioning was calculated as a summary score of the seven items which comprise the memory and thinking subscale. Cronbach’s alphas for the present sample were: spouse a ¼ .91; survivor a ¼ .92. Physical functioning was calculated as a summary score of the 10 items which comprise the daily activities subscale. Cronbach’s alphas for the present sample were: spouse a ¼ .91; survivor a ¼ .90. For both subscales, higher scores indicate more impaired functioning. Depressive symptoms The Patient Health Questionnaire-9 (PHQ-9), a widely used instrument in stroke research, was used to measure spouse depressive symptoms (de Man-van Ginkel et al., 2012; Denno et al., 2013; Kroenke, Spitzer, & Williams,

2001; Pfeil, Gray, & Lindsay, 2009). Respondents indicate the extent to which they have experienced each symptom in the last two weeks is from ‘0
not at all’ to ‘3
nearly every day’. Higher scores represent higher total symptoms. Cronbach’s alpha for the present sample was a ¼ .91. Categorical level of depressive symptoms was also determined using the PHQ-9 according to the cutpoints described by Kroenke et al. (2001): no measurable depression (i.e. scores of 0 to 4), mild depression (i.e. scores of 5 to 9), moderate depression (i.e. scores of 10 to 14), moderately severe depression (i.e. scores of 15 to 19), and severe depression (scores of 20þ). Data analysis Data analysis unfolded in several integrated phases including development of the research questions based on impressions formed during data collection and preliminary analyses, examination of quantitative survey data, and an analysis of qualitative interviews at the level of the dyad. Statistical analyses were conducted using statistical package for the social sciences (SPSS) version 20. Descriptive statistics, including level of depressive symptoms, were used to characterize the study sample. Mean differences between spouses and survivors on each partners’ rating of survivor functioning were tested using paired t-tests. As a measure of survivor
spouse incongruence, discrepancy scores were calculated as: spouse rating (of survivor functioning)
survivor rating (of own functioning). Raw discrepancy scores were used, rather than absolute scores, to determine the role of direction of difference. These discrepancy scores were used in multiple regression models predicting spouse depressive symptoms (as a continuous variable). Qualitative data were analyzed using interpretive description techniques described by Thorne, Kirkham, and MacDonald-Emes (1997), including data emersion and synthesis of participant (i.e. couples) experiences across cases. Audio recordings of survivor and spouse interviews were given matching numeric identifiers (i.e. sequentially from 10 to 45), prepared by the PI (i.e. extraneous segments of speech eliminated, background noise reduced), and then professionally transcribed in batches. During the process of preparing and batching recordings, the PI engaged the data by listening closely to each interview and noting issues to consider in subsequent data collection and analysis. Transcripts were analyzed at the dyad level, with matching survivor and spouse transcripts being treated as one unit. The PI reviewed each set of two transcripts (i.e. one survivor, one spouse) as a single unit to assess the degree to which partners expressed similar or dissimilar appraisals of the survivor’s functioning (i.e. incongruence) and the extent to which any differences manifested in emotional distress for spouses. Results Characteristics of the full study sample are presented in Table 1. Thirty-four opposite-sex and one same-sex

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Table 1. Characteristics of the study sample, percent, means, and ranges.

Gender (% female) Mean age Cognitive functioning Physical functioning Depressive symptoms (mean, range) Level of depressive symptoms No measureable depression (%) Mild depression (%) Moderate depression (%) Moderately severe depression (%) Severe depression (%) Relationship duration in years Time since stroke in months

Survivors (n ¼ 35)

Spouses (n ¼ 35)

45.7 59.74 (26.0
93.0) 12.60 (7.0
24.0) 18.85 (10.0
41.0)

57.1 58.37 (22.0
86.0) 14.48 (7.0
26.0) 19.46 (10.0
44.0) 5.85 (0.0
22.0) 48.6 28.6 8.6 8.6 5.7 25.01 (1.75
60.41) 9.17 (1.0
36.0)

Note: Relationship duration and time since stroke by spouse report only.  p < .05.

couple participated in the study and the majority of spouses were female. On average, survivors were approximately 60 years old and spouses were approximately 58 years old. Spouses reported an average depression score of 5.85 out of a possible 27 points and over half of the sample exhibited at least mild depressive symptoms. The mean length of relationship was approximately 25 years and the mean time since stroke was approximately 9 months, with 77% of couples between 1 and 12 months of diagnosis, 17% between 13 and 24 months, and 6% more than 24 months. Quantitative survey data indicated that, on average, spouses rated survivor cognitive functioning as worse than survivors rated it themselves (survivor mean ¼ 12.60, spouse mean ¼ 14.48, p < .05). In the case of cognitive functioning, approximately 57% of couples had positive discrepancy scores (i.e. spouse rated survivor as more impaired than survivor rated him/herself), 17% had scores of zero (i.e. exact agreement about survivor functioning), and 26% had negative discrepancy scores (i.e. survivor rated him/herself as more impaired than spouse rated survivor). For physical functioning, 43% of couples had positive discrepancy scores, 14% had scores of zero, and 43% had negative discrepancy scores. Multivariable analyses indicated that, after controlling for spouse gender, age, duration of the relationship, time since stroke, and the spouse’s individual rating of survivor physical functioning, survivor
spouse discrepancy scores for physical functioning were found to significantly predict spouse depressive symptoms (b ¼ .481, p < .01). In other words, when spouses rated survivor impairment higher than the survivor, spouses were significantly more likely to experience higher depressive symptoms. Incongruence in perceptions of cognitive functioning did not have a significant effect on depressive symptoms.

Qualitative component Thirteen survivor/spouse transcript pairs contained sufficient data to be useful for the current analysis focused on

survivor
spouse perceptions of survivor functioning. Detailed characteristics of this subsample, including spouse level of spouse depressive symptoms, are presented in Table 2. In three couples, both partners explicitly spoke about impairments in the survivor’s functioning and were congruent in their assessments of, for example, the survivor’s risk for falls, inability to drive safely, and struggles with managing household responsibilities. Regarding cognitive functioning, one couple stated: Survivor #28: I’m not as likely to get in the car and just drive somewhere unknown, which I never even thought twice about. Now, I get lost coming home. . . I have to carry a GPS with me now and even that gets me confused. Spouse #28: She is obviously an intelligent person but she has had some memory issues. Things overwhelm her.

Regarding physical functioning, another couple stated: Survivor #22: I think I can do a heck of a lot more than what I end up being able to do. I think I am still indestructible and can do it all, but I can’t. Spouse #22: He just can’t do everything he used to do. It is just impossible.

It is noteworthy that this survivor’s behaviors did not always conform to his verbal acknowledgments of his limitations. In packing for a family camping trip, the weekend prior to the interview, he described pushing himself to the point of utter exhaustion so that his wife would not have to do more than she was accustomed to doing: ‘I have never been so exhausted in my entire life.’ In the remaining 10 transcript sets, couples’ narrative descriptions of survivor cognitive and physical functioning tended to reflect incongruent appraisals, with spouses describing various impacts of differing perceptions on their relationship and overall mental health. Common themes included spouse concerns that survivors lacked

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M.J. McCarthy and K.S. Lyons

Table 2. Characteristics of qualitative subsample. Survivors (n ¼ 13) Dyad ID 14 15 18 21 22 24 26 28 29 32 34 35 36

Relationship years 2.3 35.9 40.3 3.0 15.6 14.0 35.0 36.1 4.0 8.0 37.5 26.0 45.3

Months since stroke

Gender

Age

5 9 4 5 4 24 10 24 8 8 3 1 5

F M M F M F F F M M M M M

48 61 72 49 56 55 93 57 53 53 64 55 74

Spouses (n ¼ 13)

Cognitive functioning

Physical functioning

23.0 19.0 22.0 7.0 8.0 7.0 15.0 23.0 24.0 13.0 10.0 10.0 8.0

17.0 15.0 41.0 10.0 12.0 28.0 16.0 13.0 17.0 16.0 14.0 26.0 10.0

Gender

Age

M F F M F M M M F F F F F

31 61 70 53 54 47 85 58 51 44 61 64 70

Cognitive functioning

Physical functioning

Level of depressive symptoms

18.0 21.0 14.0 16.0 11.0 11.0 15.0 19.0 26.0 23.0 14.0 25.0 9.0

19.0 10.0 44.0 14.0 21.0 39.0 24.0 10.0 13.0 33.0 12.0 34.6 10.0

Mild Mild Mod./sev. Mild Severe None None None Moderate Mod./sev. Mild None None

Note: Relationship years and months since stroke by spouse report.

insight into their own limitations, apprehension on the part of spouses about the survivor’s ability to reassume prestroke responsibilities, and spouse desire to protect survivors physically and emotionally. For example, one survivor described at length severe arguments he and his spouse had since his stroke, and attributed these arguments mainly to his wife’s personal issues. His wife, on the other hand, attributed their arguments to the survivor’s muddled thinking, lack of insight into his own limitations, and defensiveness. Survivor #29: . . . I don’t understand because sometimes she can be a beautiful person. She has a lot of her own anger. She has problems. Spouse #29: He doesn’t understand the limitations that he has now, and his memory. He doesn’t understand. . . what is preventing him from making decisions. He feels that sometimes I belittle him.

In other cases, partners were incongruent in their assessments of the survivor’s ability to stay on task or reassume household responsibilities after stroke, with one spouse describing having to ‘constantly monitor’ (Spouse #21) the survivor’s handling of household responsibilities such as grocery shopping, car maintenance, and bill paying. By contrast, this survivor’s description of the consequences of her stroke mainly focused on her perception that her teenaged children ‘kind of ignored’ her (Survivor #21). Spouses detailed a variety of emotions that stemmed from incongruent appraisals including worry, explicit fear for the survivor’s physical safety and emotional wellbeing, and sadness. For example, one spouse stated, ‘I worry about (the survivor) going to the store by himself. I am always. . .it’s 24/7’ (Spouse #22). Another described explicit fear for her husband’s safety because of his own lack of insight into his post-stroke impairments: ‘My

biggest fear is that he (will) just dart out and fall down the stairs’ (Spouse #32). The emotional impact of incongruent perceptions between partners was complicated by spouses feeling that they had to protect survivors’ sometimes fragile selfesteem by, for example, concealing their doubts about the survivor’s abilities, not confronting survivors about dangerous or problematic behaviors, or by changing their own personal behaviors. For example, one spouse described her plans to rein-in her own skills and abilities in order to preserve her husband’s self-esteem: ‘I am going to have to be careful that I don’t overstep my bounds. He has always been the flight instructor and now I am flying better than he is and that’s really going to be damaging to his ego’ (Spouse #36). She also planned to eliminate some formerly shared activities altogether that she very much enjoyed (e.g. downhill skiing) so that the survivor would not have to directly face the reality that he could do longer participate in those activities.

Discussion This is one of the first known studies to use a mixed-methods approach to explore incongruent appraisals between stroke survivors and their spouses regarding the survivor’s post-stroke functioning, and the impact of such incongruence on spouse depression and general mental health. Quantitative data indicated that spouses rated survivor cognitive functioning significantly worse than survivors rated it themselves and that incongruence regarding the survivor’s physical functioning was significantly associated spouse depressive symptoms. Qualitative data enhanced these findings and showed that 3 out of 13 couples expressed congruent appraisals of the survivor’s cognitive and physical abilities. Ten couples expressed incongruent appraisals of the survivor’s functioning including his or her ability to make decisions, stay on

Aging & Mental Health task, reassume household responsibilities, or engage in former activities. This incongruence contributed to spouse worry, fear, and sadness. Findings from this study suggest a number of important points for discussion and implications for practice and research in the field of aging and mental health. Consistent with previous literature, spouses in this study rated survivor functioning worse than survivors rated their own (Elliott, Elliott, Murray, Braun, & Johnson, 1996; Kristjanson et al., 1998; Lobchuk & Degner, 2002a, 2002b; Sneeuw et al., 1998). However, given that each partner’s ratings are a product of his or her own perceptions and experiences with stroke recovery, as well as his or her relationship with the partner, it is difficult to draw firm conclusions about the meaning behind incongruent appraisals. That is, to know whether survivors are underestimating their own impairment or spouses are overestimating survivor impairment due to factors such as distress and caregiving strain (Broberger, Tishelman, & von Essen, 2005; Kurtz, Kurtz, Given, & Given, 1996; Miaskowski, Zimmer, Barrett, Dibble, & Wallhagen, 1997; Porter et al., 2002; Sneeuw et al., 1998; WintersStone, Lyons, Bennett, & Beer, 2014; Zweibel & Lydens, 1990). This study, particularly the qualitative component, supports the view that survivors are underestimating their own impairment as we found evidence that many survivors put on a brave face, do not acknowledge their limitations, or whether motivated by a desire to preserve their independence, protect their ego, or protect their spouse from ‘taking on too much’, verbally acknowledge their limitations but attempt to carry on like they did before stroke. It is noteworthy that the difference between partners’ rating of cognitive functioning was statistically significant in this study, but this was not the case for physical functioning. The lack of significance may be attributable to small sample size, but it also may be due to the wider variability found in physical functioning incongruence scores (i.e. equal proportions of couples where spouses rated greater and lesser impairment than survivors) or the greater accuracy with which physical impairments may be observed by both partners. At the same time, we found incongruence in survivor physical functioning had a significant impact on spouse depressive symptoms. These findings suggest that while there may be significant incongruence, on average, regarding survivor cognitive functioning, incongruence regarding physical functioning has more negative consequences for spouses. In particular, spouses who rate the survivor as more impaired than the survivor rates him or herself are significantly more likely to experience higher depressive symptoms. Narrative data appear to corroborate this finding. As described earlier, existing literature about incongruent appraisal between patients and caregivers tends to focus on the implications of incongruence for the patient, whereas existing caregiving literature tends to indirectly address the effects of incongruence on spousal caregivers by examining only spouse perceptions (Cecil et al., 2010; Franks et al., 2002; Gosman-Hedstr€ om & Dahlin-Ivanoff, 2012; Grant et al., 2004; Heijmans et al., 1999; King

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et al., 2010). This study is therefore unique in that it brings these closely related lines of research together. By examining both partners’ perceptions of survivor functioning, our findings complement existing research by providing evidence that incongruence impacts spousal caregiver mental health. There are several potential reasons for the link between incongruence and spouse mental health. Research has shown good relationship quality to be a protective factor against the negative consequences of caring for a family member (Quinn, Clare, & Woods, 2009; Williamson & Shaffer, 2001; Yates, Tennstedt, & Chang, 1999). However, there is some evidence that very high levels of relationship quality may increase caregiver worry (Lawrence, Tennstedt, & Assmann, 1998; Lyons, Stewart, Archbold, & Carter, 2009). Studies have found that caregiver worry increases as the patient’s disability increases and is higher in wives than in husbands (Carter, Lyons, Stewart, Archbold, & Scobee, 2010; Lyons et al., 2009). The tension within the couple created by incongruent appraisals of survivor functioning may heighten worry among spouses, especially females and those with strong relationship quality, which in turn may place them at risk for poor mental health. Across illness contexts, partners often limit their communication and avoid or conceal their feelings and concerns from one another (i.e. protective buffering; Coyne & Smith, 1991; Hinnen et al., 2009; Lyons et al., 2013; McCarthy et al., 2012). Our findings are consistent with previous research, with survivors in this study sometimes displaying false bravado with respect to their recovery and, conversely, spouses expressing worry, fear, and sadness about being unwilling or unable to honestly discuss their concerns with survivors. Spouse desire to protect survivor’s ego, fear of getting hurt from having to physically protect survivors from overestimations of their abilities, or sadness at constantly witnessing the survivor’s failure to recognize his or her own limitations may also help explain the link between incongruence and spouse distress. Finally, qualitative data in this study support findings from research about symptoms of post-traumatic stress experienced by caregivers after a health crisis (Buschenfeld, Morris, & Lockwood, 2009; Dew et al., 2004; Thomas et al., 2012). Caregiving spouses may fear having to go through another similarly traumatic health event such as a serious fall or other accident, which may help to explain emotional distress. Implications and limitations These findings have several important implications for practice and research with couples coping with stroke, as well as other older couples living with illness-related disability. First, there is a general need for more interventions to be targeted at the level of the couple (McCarthy, Lyons, & Powers, 2011). Acknowledging that patient and spouse appraisals may differ, health care providers should work towards integrating both partners’ perspectives into their approach to care, be vigilant about instances when those perspectives may differ, and recognize the mental

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health consequences of differing perspectives for patients and spouses. Without moving towards a more dyadic approach to such challenges, we will be limited in our ability to address the negative consequences of illness for couples. Second, couple-level interventions should foster communication about the illness experience between partners, and in particular the patient’s abilities, so that both members can have more realistic expectations. This approach not only lessen the fear, worry, and depression that spouses may feel, but also the anger and depression that patients may feel (McCarthy et al., 2012). Interventions should also promote an environment of safety and trust in couples, in which both partners feel free to express concerns. Facilitating ways for couples to safely share their illness experiences, and working with them to develop more realistic care plans that take both partners needs into consideration, may lessen partner incongruence and subsequent distress. Although this study is innovative in its mixed-methods focus on the dyad and examination of the mental health consequences of incongruence for spouses, there are several limitations that should be noted. First, although this study used data from both partners, all data were nevertheless by self-report. A measure of survivor functioning assessed by a neutral third party (e.g. a nurse, physician, or other rehabilitation provider), would provide a more objective benchmark by which to compare each partners’ perceptions, providing a richer understanding about the extent of, nature, and consequences of incongruence. Second, although there were a sufficient number of participants for the qualitative analyses, the quantitative analyses and subsequent findings may have been impacted by the small sample. Further research is needed with larger samples that could detect smaller effects, as well as allow for more comprehensive analytic approaches such as multilevel modeling (MLM). A limitation of difference scores is the separation of the score from the level of the concept. MLM can examine both the couple’s average rating of functioning and the incongruence in functioning within the couple simultaneously. For a thorough discussion of the benefits and limitations of different methodological approaches to examine partner incongruence see Sayer and Klute (2005). A third limitation of this study is that, although over half of spouses experienced at least mild depressive symptoms, on average, there was a relatively low level of depression in the sample (i.e. mean 5.85 out of possible 27). Future studies examining partner incongruence in samples with higher levels of depression would be informative. Finally, the cross-sectional nature of the study raises the possibility that poor mental health is both a precursor and a consequence of incongruence. It is possible that depression in spouses may be negatively impacting their perceptions about survivor impairment. Although the qualitative findings strengthen our proposed direction, further longitudinal work is necessary to untangle these directions. Notwithstanding these limitations, this study provides insight into the degree to which stroke survivors and spousal caregivers experience incongruent perceptions about survivors’ post-stroke abilities and how

partner incongruence can have a measurable impact on spouse mental health. References Berg, C.A., & Upchurch, R. (2007). A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychological Bulletin, 133(6), 920
954. doi:10.1037/0033-2909.133.6.920 Blonder, L.X., Langer, S.L., Pettigrew, L.C., & Garrity, T.F. (2007). The effects of stroke disability on spousal caregivers. Neurorehabilitation, 22(2), 85
92. Broberger, E., Tishelman, C., & von Essen, L. (2005). Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress. Journal of Pain and Symptom Management, 29(6), 572
583. doi:10.1016/j. jpainsymman.2004.11.006 Buschenfeld, K., Morris, R., & Lockwood, S. (2009). The experience of partners of young stroke survivor. Disability and Rehabilitation, 31(20), 1643
1651. Cano, A., Johansen, A.B., & Franz, A. (2005). Multilevel analysis of couple congruence on pain, interference, and disability. Pain, 118(3), 369
379. doi:http://dx.doi.org/10.1016/j. pain.2005.09.003 Carod-Artal, F.J., Ferreira Coral, L., Trizotto, D.S., & Menezes Moreira, C. (2009). Burden and perceived health status among caregivers of stroke patients. Cerebrovascular Diseases (Basel, Switzerland), 28(5), 472
480. doi:10.1159/ 000236525 Carter J.H., Lyons, K.S., Stewart, B.J., Archbold, P.G., & Scobee R. (2010). Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson’s disease. Movement Disorders, 25(6), 724
730. Cecil, R., Parahoo, K., Thompson, K., McCaughan, E., Power, M., & Campbell, Y. (2010). The hard work starts now: A glimpse into the lives of carers of community-dwelling stroke survivors. Journal of Clinical Nursing, 20(11
12), 1723
1730. doi:10.1111/j.1365-2702.2010.03400.x Chumbler, N.R., Rittman, M., Van Puymbroeck, M., Vogel, W.B., Qin, H., & Qnin, H. (2004). The sense of coherence, burden, and depressive symptoms in informal caregivers during the first month after stroke. International Journal of Geriatric Psychiatry, 19(10), 944
953. doi:10.1002/ gps.1187 Coyne, J.C., & Smith, D.A. (1991). Couples coping with a myocardial infarction: A contextual perspective on wives’ distress. Journal of Personality and Social Psychology, 61(3), 404
412. doi:10.1037/0022-3514.61.3.404 Creswell, J.W., Plano, C.V., Gutmann, M.L., & Hanson, W.E. (2003). Advanced mixed methods research designs. In A. Tashakkori, & C. Teddlie (Eds.), Handbook of mixed methods in social and behavioral research (pp. 209
240). Thousand Oaks, CA: Sage. de Man-van Ginkel, J.M., Hafsteinsd ottir, T., Lindeman, E., Burger, H., Grobbee, D., & Schuurmans, M. (2012). An efficient way to detect post-stroke depression by subsequent administration of a 9-item and a 2-item patient health questionnaire. Stroke, 43(3), 854
856. doi:10.1161/STROKEAHA.111. 640276 Denno, M.S., Gillard, P.J., Graham, G.D., DiBonaventura, M.D., Goren, A., Varon, S.F., & Zorowitz, R. (2013). Anxiety and depression associated with caregiver burden in caregivers of stroke survivors with spasticity. Archives of Physical Medicine and Rehabilitation, 94(9), 1731
1736. doi:http://dx. doi.org/10.1016/j.apmr.2013.03.014 Dew, M.A., Kovsky, L.M., Dimartini, A.F., Switzer, G.E., Schulberg, H.C., & Kormos, R.L. (2004). Onset, timing and risk for depression and anxiety in family caregivers to heart transplant recipients. Psychological Medicine, 34, 1065
1082.

Aging & Mental Health Elliott, B.A., Elliott, T.E., Murray, D.M., Braun, B.L., & Johnson, K.M. (1996). Patients and family members: The role of knowledge and attitudes in cancer pain. Journal of Pain and Symptom Management, 12(4), 209
220. doi:http://dx.doi. org/10.1016/0885-3924(96)00124-8 Franks, M.M., Hong, T.B., Pierce, L.S., & Ketterer, M.W. (2002). The association of patients’ psychosocial well-being with self and spouse ratings of patient health. Family Relations, 51(1), 22
27. Gaugler, J.E. (2010). The longitudinal ramifications of stroke caregiving: A systematic review. Rehabilitation Psychology, 55(2), 108
125. doi:10.1037/a0019023 Godwin, K., Swank, P., Vaeth, P., & Ostwald, S. (2013). The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers. Aging & Mental Health, 17(4), 423
431. doi:10.1080/ 13607863.2012.756457 Goldstein, L.B., Hart, R.G., Hinchey, J.A., Howard, V.J., Jauch, E.C., Levine, S.R., . . . (2011). Guidelines for the primary prevention of stroke: A guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke, 42(2), 517
584. doi:10.1161/ STR.0b013e3181fcb238 Gosman-Hedstr€om, G., & Dahlin-Ivanoff, S. (2012). Mastering an unpredictable everyday life after stroke
older women’s experiences of caring and living with their partners. Scandinavian Journal of Caring Sciences, 26(3), 587
597. doi:10.1111/j.1471-6712.2012.00975.x Grant, J.S., Glandon, G.L., Elliott, T.R., Giger, J.N., & Weaver, M. (2004). Caregiving problems and feelings experienced by family caregivers of stroke survivors the first month after discharge. International Journal of Rehabilitation Research. Internationale Zeitschrift Fur Rehabilitationsforschung. Revue Internationale De Recherches De Readaptation, 27 (2), 105
111. Greenwood, N., Mackenzie, A., Cloud, G.C., & Wilson, N. (2008). Informal carers of stroke survivors
factors influencing carers: A systematic review of quantitative studies. Disability and Rehabilitation, 30(18), 1329
1329. doi:10.1080/ 09638280701602178 Haley, W.E., Roth, D.L., Howard, G., & Safford, M.M. (2010). Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: Differential effects by race and sex. Stroke, 41(2), 331
336. doi:10.1161/ STROKEAHA.109.568279 Han, B., & Haley, W.E. (1999). Family caregiving for patients with stroke: Review and analysis. Stroke, 30(7), 1478
1485. doi:10.1161/01.STR.30.7.1478 Heijmans, M., De Ridder, D., & Bensing, J. (1999). Dissimilarity in patients’ and spouses’ representations of chronic illness: Exploration of relations to patient adaptation. Psychology & Health, 14(3), 451
466. Hinnen, C., Ranchor, A.V., Baas, P.C., Sanderman, R., & Hagedoorn, M. (2009). Partner support and distress in women with breast cancer: The role of patients’ awareness of support and level of mastery. Psychology & Health, 24(4), 439
455. doi:10.1080/08870440801919513 King, R.B., Ainsworth, C.R., Ronen, M., & Hartke, R.J. (2010). Stroke caregivers: Pressing problems reported during the first months of caregiving. The Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses, 42(6), 302
311. doi:10.1097/JNN.0b013e3181f8a575 King, R.B., Carlson, C.E., Shade-Zeldow, Y., Bares, K.K., Roth, E.J., & Heinemann, A.W. (2001). Transition to home care after stroke: Depression, physical health, and adaptive processes in support persons. Research in Nursing & Health, 24(4), 307
323. doi:10.1002/nur.1032 Klinedinst, N.J., Gebhardt, M.C., Aycock, D.M., NicholsLarsen, D.S., Uswatte, G., Wolf, S.L., & Clark, P.C. (2009). Caregiver characteristics predict stroke survivor quality of

53

life at 4 months and 1 year. Research in Nursing & Health, 32(6), 592
605. doi:10.1002/nur.20348 Kristjanson, L., Nikoletti, S., Porock, D., Smith, M., Lobchuk, M., & Pedler, P. (1998). Congruence between patients’ and family caregivers’ perceptions of symptom distress in patients with terminal cancer. Journal of Palliative Care, 14(3), 24
32. Kroenke, K., Spitzer, R.L., & Williams, J.B. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606
613. Kuijer, R.R.G. (2000). Active engagement, protective buffering, and overprotection: Three ways of giving support by intimate partners of patients with cancer. Journal of Social and Clinical Psychology, 19(2), 256
275. Kurtz, M.E., Kurtz, J.C., Given, C.C., & Given, B. (1996). Concordance of cancer patient and caregiver symptom reports. Cancer Practice, 4(4), 185
190. Lai, S., Perera, S., Duncan, P.W., & Bode, R. (2003). Physical and social functioning after stroke: Comparison of the stroke impact scale and short form-36. Stroke, 34(2), 488
493. doi:10.1161/01.STR.0000054162.94998.C0 Lawrence, R.H., Tennstedt, S.L., & Assmann, S.F. (1998). Quality of the caregiver
care recipient relationship: Does it offset negative consequences of caregiving for family caregivers? Psychology and Aging, 13(1), 150
158. doi:10.1037/0882-7974.13.1.150 Lewis, F.M., Fletcher, K.A., Cochrane, B.B., & Fann, J.R. (2008). Predictors of depressed mood in spouses of women with breast cancer. Journal of Clinical Oncology, 26(8), 1289
1295. doi:10.1200/JCO.2007.12.7159 Lobchuk, M., Kristjanson, L., Degner, L., Blood, P., & Sloan, J.A. (1997). Perceptions of symptom distress in lung cancer patients:1. Congruence between patients and primary family caregivers. Journal of Pain and Symptom Management, 14 (3), 136
146. Lobchuk, M.M., & Degner, L.F. (2002a). Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: Trends and measurement issues. Cancer Nursing, 25(5), 358
374. doi:10.1097/ 00002820-200210000-00005 Lobchuk, M.M., & Degner, L.F. (2002b). Symptom experiences: Perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 20(16), 3495
3507. doi:10.1200/ JCO.2002.01.153 Lyons, K.S., Jones, K.D., Bennett, R.M., Hiatt, S.O., & Sayer, A. G. (2013). Couple perceptions of fibromyalgia symptoms: The role of communication. Pain, 154, 2417
2426. Lyons, K.S., Stewart, B.J., Archbold, P.G., & Carter, J.H. (2009). Optimism, pessimism, mutuality, and gender: Predicting 10-year role strain in Parkinson’s disease spouses. The Gerontologist, 49(3), 378
387. doi:10.1093/geront/ gnp046 Lyons, K.S., Zarit, S.H., Sayer, A.G., & Whitlatch, C.J. (2002). Caregiving as a dyadic process: Perspectives from caregiver and receiver. The Journals of Gerontology, 57B(3), P195
P204. Majerovitz, S.D. (2007). Predictors of burden and depression among nursing home family caregivers. Aging & Mental Health, 11(3), 323
329. doi:10.1080/13607860600963380 Manne, S.S.L. (2007). Protective buffering and psychological distress among couples coping with breast cancer: The moderating role of relationship satisfaction. Journal of Family Psychology, 21(3), 380
388. McCarthy, M.J., Lyons, K.S., & Powers, L.E. (2011). Expanding post-stroke depression research: Movement toward a dyadic perspective. Topics in Stroke Rehabilitation, 18(5), 450
460. doi:10.1310/tsr1805-450 McCarthy, M.J., Lyons, K.S., & Powers, L.E. (2012). Relational factors associated with depressive symptoms among stroke

54

M.J. McCarthy and K.S. Lyons

survivor-spouse dyads. Journal of Family Social Work, 15 (4), 303
320. Mendis, S. (2013). Stroke disability and rehabilitation of stroke: World Health Organization perspective. International Journal of Stroke, 8(1), 3
4. doi:10.1111/j.1747-4949.2012.00969.x Miaskowski, C., Zimmer, E.F., Barrett, K.M., Dibble, S.L., & Wallhagen, M.I. (1997). Differences in patients’ and family caregivers’ perceptions of the pain experience influence patient and caregiver outcomes. Pain, (72), 217
226. Molloy, G.J., Johnston, D.W., Johnston, M., Morrison, V., Pollard, B., Bonetti, D., . . . MacWalter, R. (2005). Extending the demand
control model to informal caregiving. Journal of Psychosomatic Research, 58(3), 243
251. doi:http://dx. doi.org/10.1016/j.jpsychores.2004.08.009 National Institute of Mental Health. (2013). Retrieved from http://www.nimh.nih.gov/statistics/1MDD_ADULT.shtml Perrin, P.B., Heesacker, M., Stidham, B.S., Rittman, M.R., & Gonzalez-Rothi, L. (2008). Structural equation modeling of the relationship between caregiver psychosocial variables and functioning of individuals with stroke. Rehabilitation Psychology, 53(1), 54
62. doi:10.1037/0090-5550.53.1.54 Pfeil, M., Gray, R., & Lindsay, B. (2009). Depression and stroke: A common but often unrecognized combination. British Journal of Nursing, 18(6), 365
369. Porter, L.S., Keefe, F.J., McBride, C.M., Pollak, K., Fish, L., & Garst, J. (2002). Perceptions of patients’ self-efficacy for managing pain and lung cancer symptoms: Correspondence between patients and family caregivers. Pain, 98(1
2), 169
178. doi: http://dx.doi.org/10.1016/S0304-3959(02)00042-8 Quinn, C., Clare, L., & Woods, B. (2009). The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: A systematic review. Aging & Mental Health, 13(2), 143
154. Retrum, J.H., Nowels, C.T., & Bekelman, D.B. (2013). Patient and caregiver congruence: The importance of dyads in heart failure care. The Journal of Cardiovascular Nursing, 28(2), 129
136. doi:10.1097/JCN.0b013e3182435f27 Rigby, H., Gubitz, G., & Phillips, S. (2009). A systematic review of caregiver burden following stroke. International Journal of Stroke: Official Journal of the International Stroke Society, 4(4), 285
292. Roger, V.L., Fox, C.S., Fullerton, H.J., Gillespie, C., Hailpern, S. M., Heit, J.A., . . . American Heart Association Statistics Committee and Stroke Statistics Subcommittee. (2012). Heart disease and stroke statistics
2012 update: A report

from the American Heart Association. Circulation, 125(1), e2
e220. doi:10.1161/CIR.0b013e31823ac046 Sayer, A.G., & Klute, M.M. (2005). Multilevel models for dyads. In V.L. Bengtson, A.C. Acock, K.R. Allen, P. Dilworth-Anderson, & D.M. Klein (Eds.), Sourcebook on family theory and research (pp. 289
313). Thousand Oaks, CA: Sage. Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. The Journal of the American Medical Association, 282(23), 2215
2219. doi:10.1001/jama.282.23.2215 Sneeuw, K.C., Aaronson, N.K., Sprangers, M.A., Detmar, S.B., Wever, L.D., & Schornagel, J.H. (1998). Comparison of patient and proxy EORTC QLQ-C30 ratings in assessing the quality of life of cancer patients. Journal of Clinical Epidemiology, 51, 617
631. Thomas, K.S., Bower, J.E., Williamson, T.J., Hoyt, M.A., Wellisch, D., Stanton, A.L., & Irwin, M. (2012). Post-traumatic disorder symptoms and blunted diurnal cortisol production in partners of prostate cancer patients. Psychoneuroendocrinology, 37(8), 1181
1190. Thorne, S., Kirkham, S.R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20(2), 169
177. doi:10.1002/(SICI)1098-240X (199704)20:23.3.CO;2-B Visser-Meily, A., Post, M., Schepers, V., & Lindeman, E. (2005). Spouses’ quality of life 1 year after stroke: Prediction at the start of clinical rehabilitation. Cerebrovascular Diseases (Basel, Switzerland), 20(6), 443
448. Williamson, G.M., & Shaffer, D.R. (2001). Relationship quality and potentially harmful behaviors by spousal caregivers: How we were then, how we are now. The family relationships in late life project. Psychology and Aging, 16(2), 217
226. Winters-Stone, K.M., Lyons, K.S., Bennett, J.A., & Beer, T.M. (2014). Patterns and predictors of symptom incongruence in older couples coping with prostate cancer. Supportive Care in Cancer, 22(5), 1341
1348. Yates, M.E., Tennstedt, S., & Chang, B. (1999). Contributors to and mediators of psychological well-being for informal caregivers. The Journals of Gerontology, 54B(1), P12
P22. Zweibel, N., & Lydens, L.A. (1990). Incongruent perceptions of older adult/caregiver dyads family relations. Family Relations, 39, 63
67.

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