Vincent Cox

Acquired brain injury (ABI), including stroke and traumatic brain injury, can have a major impact on the lives of both patients and their partners. In the Netherlands, approximately 650,000 patients live with permanent limitations as a result of ABI. They experience problems on physical, behavioral, cognitive, communicative and psychosocial domains, which can lead to loss of independence in everyday activities, reduced societal participation and poorer quality of life. Partners of patients with ABI can experience high levels of burden, anxiety and depressive symptoms. How these symptoms develop over time and which predictors contribute to this development requires further investigation. An interdependent effect exists between patients and their partners. For example, depressive symptoms in patients are related to depressive symptoms in partners. Patients and partners should therefore be viewed from a dyadic perspective.

There is a need to support partners of patients with ABI and interventions have been effective in reducing their burden, anxiety, and depressive symptoms and improving their well-being. Blended care interventions, created by combining web-based interventions with face-to-face consultation, seem promising for supporting partners of patients with ABI. Interventions can aim to improve partners’ feelings of mastery, which can subsequently reduce the negative consequences that partners experience as a result of the patient’s ABI. Mastery can be measured with the Caregiver Mastery Scale. The Caregiver Mastery Scale has not yet been validated for partners of patients with ABI.

The overall aim of this thesis was to gain more knowledge about the impact of ABI on the patients’ partners in order to improve support for these partners. In this thesis we aimed (1) to in-depth investigate the impact for partners of patients with ABI, (2) to investigate the dyadic relationships within patient-partner couples and (3) to develop a blended care intervention for partners of patients with ABI and to validate a caregiver-specific instrument to evaluate the effect of the intervention.

In Chapter 2 we performed a cross-sectional study that examined participation restrictions and satisfaction with participation in partners of patients with stroke. Baseline data was used from the Restore4Stroke Self-Management Study, a multicenter randomized controlled trial in five rehabilitation centers and three hospitals in the Netherlands. The study sample consisted of 54 partners of patients with stroke. The Utrecht Scale for Evaluation of Rehabilitation – Participation (USER-P) was used to assess partners’ participation restrictions as a result of the patient’s stroke and satisfaction with participation. Most participation restrictions were reported regarding work or education, relationship with the partner and going out. Partners were least satisfied regarding going out, sports or other physical exercise, and day trips and other outdoor activities. The participation restrictions and satisfaction with participation were significantly correlated, but differed for the various activities. Satisfied partners with participation restrictions differed from dissatisfied partners with participation restrictions when it comes to anxiety, depression and the number of restrictions experienced. We concluded that a specific assessment of the participation restrictions and satisfaction with participation is important when supporting partners of patients with stroke.

Chapter 3 presents the courses and predictors of burden, anxiety and depressive symptoms in partners of patients with stroke during the first two years after stroke. Data was used from the Restore4Stroke Cohort, a hospital-based multicenter longitudinal cohort study in six hospitals across the Netherlands. The study sample consisted of 215 patients with stroke and their partners. Mixed model analyses were performed with burden, anxiety and depressive symptoms as time-varying outcome variables, measured at four time points during the first two years after stroke. We found that burden and depressive symptoms did not significantly change over time, whereas anxiety symptoms initially decreased followed by an increase. Higher burden was predicted by partners’ younger age, higher education, more symptoms of anxiety and depression, and by patients’ greater stroke severity, lower cognitive functioning and more symptoms of anxiety and depression. More anxiety symptoms were predicted by higher burden, more symptoms of depression, and lower self-efficacy of the partner. More depressive symptoms were predicted by older age, higher burden, more symptoms of anxiety, less proactive coping strategies of the partner, and more depressive symptoms of the patients. We concluded that it is important to pay attention to partners themselves and not only concentrate on patient characteristics to identify partners at risk.

Chapter 4 describes the results of our cross-sectional study aimed at investigating the level of agreement and the differences regarding the perception of family functioning between patients with ABI and their partners. Data were used from 77 patient-partner dyads who were participating in the ongoing CARE4Patient and CARE4Carer trials. Family functioning was assessed using the General Functioning subscale of the McMaster Family Assessment Device (FAD-GF). Agreement within dyads was poor regarding the overall FAD-GF scores with partners reporting significantly poorer family functioning compared to the patients. Agreement regarding the individual items of the FAD-GF ranged from slight to moderate. Patients and their partners differed in their perception of family functioning. We concluded that health care professionals should assess family functioning in both patients and their partners, to explore any discrepancies in the perception of family functioning and to discuss these discrepancies with both members of the patient-partner dyad.

Chapter 5 presents the intra- and interpersonal effects of coping style and self-efficacy on anxiety, depression and life satisfaction in patient-partner couples after stroke. Data was used from 215 patient-partner couples from the Restore4Stroke Cohort. Among patients, coping had an intrapersonal effect on anxiety and depressive symptoms and self-efficacy on symptoms of anxiety. Among partners, intrapersonal effects on anxiety, depression and life satisfaction were revealed for both coping and self-efficacy. Regarding effects on the other member of the dyad (interpersonal), we found that pro-active coping of the patient was associated with lower anxiety of the partner, and higher self-efficacy of the partner was associated with lower depression scores and higher life satisfaction of the patient. These results add to the accumulating evidence for the importance of using a dyadic perspective in patients with stroke and their partners.

Chapter 6 presents the protocol of the randomized controlled trial to evaluate a blended care intervention for partners of patients with ABI. The CARE4Carer intervention combines web-based support with face-to-face consultations, creating a blended care intervention. The intervention consists of a nine-session web-based support program and two face-to-face consultations with a social worker. Addressed themes are: giving partners insight into their own situation, including possible pitfalls and strengths, learning how to cope with the situation, getting a grip on thoughts and feelings, finding a better balance in the care for the patient with ABI, thinking about other possible care options, taking care of oneself, and communication. Caregiver mastery is the primary outcome measure. Secondary outcomes are strain, burden, family functioning, emotional functioning, coping, quality of life, participation, and social network. The results of this trial will be published at a later point in time when the study is finished.

Chapter 7 focused on the validation of the Caregiver Mastery Scale (CMS) for partners of patients with ABI. A total of 92 partners of patients with ABI were recruited for this validation study. We determined the score distributions, internal consistency and convergent validity of the CMS. The CMS has a normal distribution, with no floor or ceiling effects. The internal consistency was acceptable and the convergent validity confirmed our hypothesis that higher scores on the CMS are related with less burden, lower levels of anxiety and depression and greater well-being. We concluded that the CMS is a valid instrument to assess the caregiver mastery of partners of patients with ABI.

Chapter 8, the general discussion, provides an overview of the main findings and a reflection on these main findings. The findings are discussed in the light of the complexity of the impact for partners, related to the Stress Process Model, and the patient-partner dyadic relationship. Theoretical and methodological considerations are discussed with the topics: study populations, study designs, instruments and variables measured. Recommendations for future research are also described. Finally, clinical implications were provided. This thesis contributes to the knowledge about the impact of ABI on the patients’ partners. Our results emphasize the complexity of this impact and the interrelationship between the negative consequences that partners experience. In addition, we have provided more evidence for the dyadic relationship between patients and partners. When health care professionals provide support for partners, they should take the complexity of the impact for partners and the patient-partner dyadic relationship should into account.