Table 1.
Characteristics and findings of empirical studies included for review.
| References | Health impairment | Participants | Design and data collection | Measures/interview topics | Findings | Quality rating (study type) |
|---|---|---|---|---|---|---|
| Sensory impairments | ||||||
| Burton et al. (2015) | Vision loss due to AMD | 1 couple, both partners with AMD and comorbidities Ages: 82 and 77 years RD: 60 years |
Longitudinal case study with 3 time points Semistructured joint interviews |
Diagnosis and couple life since, daily activities, thoughts about the future, relationship | The couple had to adjust everyday activities and manage mutual loss of independence. There were no references to enjoyment in everyday activities. Couple demonstrated a sense of “we” and experienced resilience and unity due to sharing a diagnosis. | Adequate (qualitative) |
| Lehane et al. (2018) | Dual-sensory loss | 45 spouses Mage: 69.21 years MRD: 71.7 years MTSD patients: 20.3 years |
Cross-sectional Questionnaire |
Couples' Illness Communication Scale, Couples' Satisfaction Index, Medical Outcomes Study Social Support Survey | Significant association between sensory-loss-related communication, RS, perceived support, and psychological well-being. Perceived support mediated the association between communication and well-being. | Adequate (quantitative) |
| Glade (2018) | Hearing loss | 6 couples Age range of patients: 60–79 years |
Cross-sectional Semistructured individual interviews |
Communication with spouse and in social situations prior to and after cochlear implants (CI), experience with auditory rehabilitation | Prior to use of cochlear implants, communication caused frustration and tension within the couples and impeded satisfying social interactions. Social interactions improved following cochlear implant, but adjustment was an extended process. | Good (qualitative) |
| Scarinci et al. (2008)a | Hearing loss | 10 spouses Mage: 70.2 years MRD: 44.6 years |
Cross-sectional Semistructured individual interviews |
N/A | The partner's hearing impairment meant overall reduction in communication, frequent communication breakdown, increased relationship tension, reduced time spent together, and less opportunities for experiencing togetherness. | Adequate (qualitative) |
| Yorgason et al. (2007)a | Hearing loss | 8 couples Mage of patients: 68 years |
Cross-sectional Semistructured joint interviews |
Relational experiences surrounding hearing loss, meaning of hearing loss, what could help the couple thrive in their relationship despite impairment | Hearing-related stressors included negative emotions and conflict related to impaired hearing, reduced communication opportunities and embarrassment in group settings, and loss of shared activities. Couples experienced resilience through individual and dyadic meaning-making and attunement to needs for interdependence and autonomy. | Adequate (qualitative) |
| Physical impairments | ||||||
| Zhaoyang et al. (2018) | Arthritis | T1: 142 couples; T2: 132 couples Mage of patients at T1: 65.78 years MRD at T1: 34.71 years MTSD at T1: 16.42 years |
Longitudinal Questionnaire |
Items on disclosure and holding back adopted from Porter et al. (2008), Dyadic Adjustment Scale | Holding back at T1 was associated with decreases in own RS in patients and partners. Increases in disclosure were associated with increases in own RS. No partner effects from holding back or disclosure on partner RS. | Good (quantitative) |
| Schembri Lia and Abela (2019) | Locomotor disability | 3 couples RD range: 23–47 years |
Cross-sectional Semistructured individual and joint interviews |
N/A | Couples showed sensitivity and attunement to each other's feelings and needs and had a clear vision of remaining together. | Adequate (qualitative) |
| Major struggles included altered sexual intimacy and unease with imbalance in support provision. | ||||||
| Blackmore et al. (2011) | MS | 81 patients Mage: 46.9 years MTSD: 10.3 years |
RCT; pre-/post-design Questionnaire |
Sexual Disabilities section of Guy's Neurological Disability Scale, UCLA Social Support Scale, Sexual Satisfaction Inventory | Increases in perceived positive partner support and decreases in negative partner support were associated with improvements in sexual satisfaction. | Adequate (quantitative) |
| Boland et al. (2012) | MS | 7 couples Median age of patients: 53 years Median RD: 29 years Median TSD: 10 years |
Cross-sectional Semistructured individual interviews |
Description of own coping approach, changes/adjustment in coping over time | Coping with MS had ups and downs and couples constantly needed to bring their coping efforts in sync. Coping occurred over a long time and changed depending on disease stage. Maintaining faith that the relationship was worthwhile independent of the changes helped couples cope. | Good (qualitative) |
| Ghafari et al. (2014) | MS | 25 patients Mage: 38 years MTSD: 9 years |
Cross-sectional Semistructured individual interviews, field notes |
Relationship with partner, partner's support to adapt to disease | Patients expressed a higher need for emotional support than instrumental support while they perceived spouses to provide mainly instrumental support. They strove for functional independence to maintain a balance between partners. Mutual understanding helped create and maintain a satisfying relationship despite inevitable changes. | Good (qualitative) |
| Samios et al. (2015) | MS | T1: 160 couples; T2: 98 couples Mage of patients at T1: 49.65 years MTSD: 10.43 years |
Longitudinal Questionnaire |
Dyadic Adjustment Scale | RS decreased from T1 to T2. Patient and partner RS were significantly related at T1 and T2. Significant partner effects from RS T1 to RS T2. | Good (quantitative) |
| Starks et al. (2010) | MS | 8 couples Age range of patients: 40–69 years RD range: 1.2–47 years TSD range: 1–21 years |
Cross-sectional Questionnaire, semistructured individual and joint interviews |
Perceived Social Support Scale, Dyadic Adjustment Scale | Four couples were “in-sync,” i.e., had compatible world views and communication styles, worked together to solve challenges moved forward together. Four couples were “out-of-sync,” i.e., had contrasting coping styles, focused on different priorities and adjusted at different paces, but were committed to the relationship. Patients from in-sync couples had longer time since diagnosis, mostly gradual onset of MS and retained high levels of independence. | Adequate (mixed methods) |
| Wawrziczny et al. (2019) | MS | 6 couples Mage of patients: 39.17 years MRD: 17.17 years MTSD: 8 years |
Cross-sectional Semistructured joint interviews |
Experience of disease, relationship history, changes in relationship and adjustments in daily life since disease onset, social support | Disease progression made couples' lives increasingly revolve around MS. Different challenges for patients and spouses and their inability to mutually share and validate each other's experience led to withdrawal and alienation. | Adequate (qualitative) |
| Carter and Carter (1994) | PD | Group A: 20 PD patients, 20 ill spouses; group B: 26 PD patients, 26 well spouses Mage of patients: 65.7 years MRD: 39.3 years |
Cross-sectional Questionnaire, sentence completion task |
Projective Sentence Completion, Dyadic Adjustment Scale | No group difference on marital adjustment. Cohesion in PD couples higher than norms, consensus lower. Effects of illness on marriage mostly positive, good marriage considered essential in PD. | Poor (quantitative) |
| Martin (2016) | PD | 21 patients, 23 spouses Mage: 67 years MRD: 38 years MTSD: 6 years |
Cross-sectional Semistructured individual interviews |
Impact of PD on self, partner and relationship | The main relational stressors implied by PD included financial strain, shifts in relational roles, changed sexual intimacy and overall closeness between partners, less leisure and social activities, and resulting uncertainty about whether the relationship would continue. | Adequate (qualitative) |
| Smith and Shaw (2017) | PD | 4 couples, 1 widowed spouse Age range: 67–85 years TSD range: 2–21 years |
Cross-sectional Semistructured individual interviews |
Reactions to diagnosis, life changes due to PD | PD put strain on relationships, especially due to changes in responsibilities for tasks, but made participants realize how much they valued their relationships. Couples adjusted best when they assimilated PD and retained agency despite difficult changes. | Poor (qualitative) |
| Wootton et al. (2019) | PD | 9 couples RD range: 4–45 years |
Cross-sectional Semistructured individual interviews |
Relationship and health history, experiences and relational impact of facial masking, coping with the impacts | Patients' muted and slowed facial expressions led to partners' difficulties understanding intentions and feeling. They were often misinterpreted as disinterest in the relationship and led to emotional distance and disconnection. To counteract, couples used more touch and gesture and verbal communication to clarify misunderstandings. | Adequate (qualitative) |
| Chan (2000) | SCI | 66 patients, 40 spouses Mage of patients: 45.18 years MTSI: 13.27 years |
Cross-sectional Semistructured individual interviews |
Impact of SCI on family and marital relationships, sources of stress, life satisfaction, caregiving burden | Relationship stressors included financial strain, role changes and worries about the future, increased conflict, changes in feelings (love to sense of care, sympathy), difficulties communicating about needs, and reduced social circle. Maintenance of marriage was “no stress-free process”; required mutual understanding and support, patience and acceptance of disability and its consequences. | Adequate (qualitative) |
| Dickson et al. (2010) | SCI | 11 spouses Mage: 51.4 years Mean time as caregiver: 6.5 years |
Cross-sectional Semistructured individual interviews |
Experience of becoming a spousal SCI caregiver, life changes due to caregiver role | Participants reported a sense of loss of their partner and pre-injury life. They experienced drastic role changes from spouse and lover to parental caregiver figure, especially linked to loss of physical intimacy. Appreciation for each other increased and contributed to improved relationships in some couples. | Good (qualitative) |
| Engblom-Deglmann and Hamilton (2020) | SCI | 11 couples | Cross-sectional Semistructured individual and joint interviews |
Most significant stressors in marriage, initial cognitive processes following injury, coping with losses related to SCI, positive impact of SCI on relationship | Central challenges for couples were altered sexual function, negotiation of care needs and social disconnection following SCI. Adaptability in couples ranged from connection/flexibility to constriction/stagnation. | Good (qualitative) |
| Freeman et al. (2017) | SCI | 5 couples MRD: 16 years |
Cross-sectional Semistructured joint interviews |
Couple's experience of inpatient rehabilitation (IR) and its influence on relationship, strategies to maintain relationship, intimate and sexual expression during IR | Couples emphasized being a unit and expressed disappointment about healthcare staff who did not acknowledge them as a dyad. Physical and emotional fatigue and loss of spontaneity meant that sexual intimacy was not a priority during inpatient rehabilitation. | Adequate (qualitative) |
| Jeyathevan et al. (2019) | SCI | 19 patients, 15 family caregivers (9 spouses, 6 parents) Age range of patients: 22–65 years |
Cross-sectional Semistructured individual interviews |
Changes in relationship post-injury, adjustment of family to SCI, impact of SCI on family roles, handling of sex and intimacy post-injury, perceived affectedness of caregiver | In some cases, post-injury relationships deteriorated due to asymmetrical dependencies, protective behaviors of caregivers and loss of sexual and emotional intimacy. Relationships were maintained or rebuilt when partners were interdependent, creatively shifted commonalities and routines, i.e., when they established a “new normal.” | Good (qualitative) |
| Kreuter et al. (1994) | SCI | 49 spouses Median age: 34 years Median RD: 6 years Median TSI: 5.5 years |
Cross-sectional Questionnaire |
Self-designed Sexual Interest, Activity and Satisfaction Scale, Sexual Behavior Scale, Emotional Quality of the Relationship Scale | Majority of spouses satisfied with relationship and current sex life, although almost half of the sample reported decline in sexual activity. One third reported problems discussing sex with their partner. | Poor (quantitative) |
| Yim et al. (1998) | SCI | 30 SCI couples; 30 able-bodied couples Mage of patients: 39.80 years MRD: 12.90 years |
Cross-sectional, group comparison Questionnaire |
Short Marital Instability Scale, culturally adjusted Dyadic Adjustment Scale, Marital Agendas Protocol | No significant group difference between marital adjustment and RS. Cohesion and marital stability higher in SCI couples. Sex as the most serious problem in SCI couples. | Poor (quantitative) |
| Anderson et al. (2017)b | Stroke | 18 couples Mage of patients: 62.6 years MRD: 34.4 years |
Cross-sectional Semistructured individual or joint interviews |
Couples' history, current roles, current relationship, strategies to make marriage work, immediate post-stroke experience | Satisfied couples reported having adequate resources to reconstruct role identities, good discussions and focusing on love while dissatisfied couples experienced role overload and disengagement and reported mutual insensitivity to each other's feelings and lack of listening. | Good (qualitative) |
| Croteau et al. (2020) | Stroke | 9 couples Mage of patients: 69 years RD range: 27–63 years TSD range: 1.1–7.6 years |
Cross-sectional Semistructured individual interviews |
Modes and frequency of communication before and after stroke, content of conversations | Most participants reported a decrease in the frequency, duration, and variability of conversations. Communication became associated with negative emotions due to difficulties. Spouses took on a speaker role, patients adopted a listener role, with difficulty establishing equilibrium in conversation. | Good (qualitative) |
| Korpelainen et al. (1999) | Stroke | 192 patients, 94 spouses Mage of patients: 59.1 years Median TSD: 23 months |
Cross-sectional Questionnaire |
Self-designed items for sexual function and explanatory factors | Decreased libido in more than half of patients and spouses. Marked increase in sexual dissatisfaction post-stroke. | Poor (quantitative) |
| McCarthy and Bauer (2015)b | Stroke | 31 couples Mage of patients: 61.81 years MRD: 26.09 years MTSD: 9.23 years |
Cross-sectional Unstructured individual interviews |
Ways in which stroke has disrupted own life, spouse's life and couple relationship | Stroke marked a disruption and pausing of normal life course. Relationship challenges included compromised physical intimacy, shifts in marital roles, social isolation, and uncertainty about the future due to perceived unpredictability. Couples with shorter relationship duration handled role changes better. Couples drew on existing relationship strengths to cope. | Adequate (qualitative) |
| Quinn et al. (2014)b | Stroke | 8 couples Age range of patients: 36–61 years MRD: 26 years MTSD: 4.5 years |
Cross-sectional Semistructured joint interviews |
Pre-stroke relationship, immediate experience following stroke, life and relationship changes post-stroke | Couples reported a transition to roles as carer and cared for, for some adopting characteristics of a parent–child relationship. Both partners were reluctant to fully accept the changed roles. | Good (qualitative) |
| Robinson-Smith et al. (2016) | Stroke | EG: 5 couples; CG: 5 couples Mage of patients: 65.2 years |
Pilot intervention study, pre-/post-design Questionnaire, field notes from home visits |
Dyadic Coping Inventory; field notes on couples' thoughts and feelings regarding post-stroke relationships | Dyadic coping by oneself increased in stroke patients following intervention. Positive dyadic coping increased in EG spouses. Patients reported changes in roles and reciprocity between partners. Attempts at maintaining intimacy included talking and reminiscing more | Poor (mixed methods) |
| Schmitz and Finkelstein (2010) | Stroke | 15 patients, 14 spouses Median age of patients: 65 years Median TSD: 45 months |
Cross-sectional Semistructured individual interviews |
Experience of having stroke, sexuality after stroke, discussion of sexuality with rehabilitation professionals | Decreased sexual desire or activity post-stroke were linked to physical and emotional challenges, disrupted roles within relationship and discomfort discussing sex with the partner. | Good (qualitative) |
| Bodley-Scott and Riley (2015) | TBI | 5 spouses Age range of patients: 29–42 years RD range: 6–22 years TSI range of patients: 0.75–7 years |
Cross-sectional 1 narrative and 1 evaluative semistructured interview per participant |
Account of partner's injury and subsequent changes, evaluation of relationship changes | Spouses experienced direct negative emotional impact of partner's TBI associated with sense of loss for their “old” partner. Shift from lovers to carer and care recipient led some to consider ending the relationship. Love was replaced by a sense of care. Loss of sexual intimacy and shared enjoyment contributed to emotional distance. | Good (qualitative) |
| Kreutzer et al. (2016) | TBI | 42 couples Mage of patients: 49.8 years MTSI: 2.2 years |
Cross-sectional Questionnaire |
Marital Status Inventory, Revised Dyadic Adjustment Scale | 24% of patients and 29% of spouses considered their marriage as unstable. Half of the sample reported clinically significant levels of marital dissatisfaction. | Poor (quantitative) |
| O'Keeffe et al. (2020) | TBI |
5 patients, 6 spouses RD range: 9–32 years TSI range: 4–8 years |
Cross-sectional Semistructured individual interviews |
Perceptions of changes, challenges, and positive aspects of relationship post-injury | Both partners experienced a sense of loss regarding pre-injury relationship caused by role changes, altered communication, increased conflict, reduced sexual intimacy and emotional connectedness. Couples negotiated a new equilibrium based on respect, loyalty, understanding, and hope. | Good (qualitative) |
AMD, age-related macular degeneration; CG, control group; EG, experimental group; N/A, information not available; M, mean; MS, multiple sclerosis; RD, relationship duration; RS, relationship satisfaction; SCI, spinal cord injury; TBI, traumatic/acquired brain injury; TSD, time since diagnosis; TSI, time since injury.
a
The study was also included in the review by Lehane et al. (2017a).
b
The study was also included in the review by Ramazanu et al. (2020).