Background
Following spinal cord injury (SCI), spouses and other family members are often called upon to undertake the caregiving role [
1]. Changes in the nature of the relationship (e.g., role change from spouse to caregiver) between the individuals with SCI and their families can challenge the family physically, psychologically, and socially [
2,
3]. Comparable to the individuals with SCI, the family caregivers are often required to reconstruct their lives, as well start an "unexpected career" to provide support with activities of daily living (ADLs), personal care, and emotional support to their family member with a disability [
4,
5].
The stress associated with assuming the caregiving role [
6] can influence the adjustment of individuals with SCI and their families [
7]. Cleveland [
8] determined that tasks associated with caring for an individual with SCI were often unevenly distributed amongst family members, thereby resulting in increased stress in communication, family unity, family power structure, and interpersonal relationships. In a recent descriptive cross-sectional study assessing the relationship between sociodemographic factors and level of burden experienced among caregivers of individuals with SCI, it was reported that parents experienced significantly more burden undertaking the caregiver role in comparison to spousal caregivers [
9]. Indeed, parents who are caregivers (i.e., of adult individuals with SCI) are usually older than spousal caregivers, and therefore, experience greater physical burden [
9] due to their own functional limitations [
10]. With respect to partner relationships, DeVivo and Fine [
11] explored the impact of SCI on the marital status of 276 injured individuals for a 3-year period post-injury. They found a significantly higher incidence of divorce and separation during the first 3 years after the injury, indicating it was very demanding trying to rebuild daily life and relationships during the early stage of the injury [
11]. The authors also reported that women with SCI are more likely to be divorced than men. In a later study, DeVivo and Richards [
12] determined that among the individuals who were married at the time of their injury, 81% were still married 5 years later. In another study conducted by Kreuter and colleagues [
13], findings showed that challenges in adapting to new physical functions, unwillingness to live with the injured individual, and difficulties in maintaining the relationship resulted in divorce post-injury. The authors highlighted the importance of the partners’ mutual support and the significance of maintaining a marriage/relationship [
13].
Emerging literature on dyadic coping between caregivers and care recipients provides insight into how couples manage health, relational, and psychosocial issues [
14‐
16]. Among those who had traumatic brain injury (TBI), Adams and Dahdah [
17] reported that problem-focused, emotion-focused and avoidant coping were some strategies used by TBI survivors and their primary caregivers to cope with home life and ADLs. However, it is imperative to recognize that, within each relationship, couples may experience the effects of the illness or injury differently [
18,
19]. Another recent study by Robinson-Smith and colleagues [
20] took a dyadic approach to understanding the impact of stroke on relationships to identify dyadic coping strategies that may provide guidance for a focused nursing intervention to support post-stroke couples. The authors reported that dyadic coping strategies such as focusing on the present, positive reframing and focusing on reasonable goals should be incorporated in cognitive and communication coping interventions to enhance coping skills and overall well-being of couples post-stroke. Although these studies provide valuable insight into the nature of caregiving relationships, the extent to which these findings can be generalized to individuals with SCI and their family caregivers is unknown. Indeed, providing care to individuals with SCI is distinct from other illnesses and injuries due to the unique challenges of providing care related to the complications associated with SCI (e.g., bladder and bowel problems, and pressure injury management [
21]) and the longer duration of their caregiving period [
22].
While previous studies have focused on the impact of SCI on relationships [
7,
23,
24], these studies have used quantitative methods to examine marital status, long-term marital survival, and the impact of SCI on the relationship from the perspective of the individual with SCI [
5]. Furthermore, these studies highlighted the negative impact of SCI on relationships including, difficulty reestablishing life as a couple, being socially active as a couple, and communicating feelings [
7,
23,
24]. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Furthermore, when an individual is younger (i.e., young adult) and not married, the role of caregiving most often falls to the parents. Yet, there is a paucity of published literature on parents as caregivers and the impact of SCI on the parent-child relationship. As a result, there is an increased need for qualitative research examining partner/parent relationships post-injury. Thus, the objectives of this paper were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships.
Discussion
The current study aimed to understand the factors that may challenge the stability of relationships post-injury, and coping strategies used by care recipients and caregivers in maintaining/re-building their relationships. The factors that challenged relationship stability include: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The coping strategies used by care recipients and caregivers to maintain/re-build their relationships include: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. To the best of our knowledge, this is one of the few studies to provide insight into the impact of SCI on parent-child caregiving relationships. In addition, the majority of studies have focused on the negative impact of SCI on relationships [
6,
7,
13]; this is the first study within the SCI population to identify various dyadic coping strategies used by care recipients and caregivers to maintain/re-build their relationships. Indeed, the manner in which caregivers and care recipients interact and cope post-injury can be visualized across a spectrum. Figure
1 presents a dyadic coping spectrum consisting of the identified challenges experienced/factors that challenge relationship stability and corresponding strategies that care recipients and caregivers used in coping with these challenges/changes to maintain/rebuild their relationships post-injury. These are discussed below in the context of the existing literature.
Studies have frequently documented that individuals with SCI, particularly those who are tetraplegic, rely on their family members for support with daily activities [
36,
37]. As such, the present findings extend those of previous authors in that our participants did acknowledge a presence of asymmetrical dependency within their relationships. Our study corroborated DeSanto-Madeya’s [
7] finding that such asymmetrical dependency created a sense of loss for individuals with SCI and their family caregivers. Our findings further indicate that caregivers who were burdened by over-dependency by their injured family member portrayed signs of frustration and withdrawal, which led to emotional detachment and reduced likelihood of intimacy. This was also noted by Milligan and Neufeldt [
38] who described that an individual with SCI who aims to minimize the impact of his/her injury on the caregiving partner would make a more “attractive candidate” for a long-term relationship compared to an individual who excessively relies on his/her partner.
In addition, the current study further highlighted the detrimental effects within relationships due to co-dependent behaviours exhibited by caregiver-care recipient dyads. A mutually-fed escalation occurred between dyads whereby caregivers’ protective attitudes (due to underestimating the injured individual’s functional ability or concerns for safety) resulted in dependency-inducing behaviours that may have contributed to care recipients being more dependent. This spiral causes the dyad’s interactions to become rigid, and often led to resentment within the caregiving relationship. Interestingly, this co-dependent behaviour identified in our study can be explained by Blalock’s [
39] nonrecursive model of caregiving and dependency. The model explains that dependency-inducing behaviours by informal caregivers are a function of care recipient dependency needs. Indeed, care recipient dependency needs activate the cycle that can lead to more dependency-inducing behaviours by caregivers who begin to “do for” care recipients [
39]. This, consequently, may reinforce dependent behaviours by care recipients, and a cycle of care recipient helplessness followed by caregiver strain may be prompted. Our findings further indicate that such dependency-inducing behaviours are more prevalent in parent-child caregiving relationships. Although the participants in our study had stated this behaviour was due to a sense of obligation as a parent to provide assistance to their injured child, Young [
40] further attributed feelings of helplessness and guilt as factors of parents usually continuing dependency-inducing behaviours. Moreover, while several individuals expressed profound distress within their relationships, some talked of how they had adjusted to the changes and had followed an interdependent approach to re-building their relationships. Consistent with our findings, another study by Chan [
41] also found that sharing household responsibilities based on what the individual with SCI is capable of doing (i.e., if upper limb function was not affected) is a key strategy used in strengthening mutual respect and intimacy. To reduce dependency-inducing behaviours and encourage an interdependent caregiving relationship, family caregivers must learn when to step back from caregiving tasks, a skill crucial in ensuring sustainable caregiving.
The participants in our study reported that constant care provision brought about psychological distress among caregivers, leading to caregivers not being able to intimately connect with their injured spouse. Particularly, the obligation to fulfill such caregiving duties and responsibilities on a daily basis was associated with the role change from spouse/partner to caregiver, and directly affected the loss of sex and intimacy in couples. A similar theme of “post-injury shift in relationship dynamics” (i.e., re-defining the spousal role) was determined by Dickson and colleagues [
5] in their study focusing on the impact of assuming the primary caregiver role following traumatic spinal cord injury. The authors in that study identified that performing bodily tasks for the individuals with SCI (e.g., cleaning the individual after an ‘accident’ or emptying the colostomy bags), had a negative impact on the sexual relationship of couples. Consequently, this loss of sexual relationship reduced the former spousal or lover role to one where they were occupied with practical tasks for their injured spouse, and undertaking a more “motherly/fatherly” role [
5]. Speziale [
42] further reported that even slight adjustments in sexual intimacy can reduce the chance of maintaining ‘closeness’ and can result in strain within the spousal relationship. The similarities between our findings and other studies prompt the question of: if certain types of care activities (e.g., performing bodily tasks) reduce intimacy within relationships, should family caregivers assume responsibility for such tasks? Expanding the role of formal caregivers (e.g., personal support attendants) in performing certain care activities, such as bowel care (which hired caregivers are often unwilling or unable to perform [
3]) may be a possible avenue to ensure sustainable intimate relationships.
Despite this, several of our participants did report that they were able to positively re-appraise the situation by utilizing innovative coping strategies within their caregiving relationships. Although developing a routine to manage caregiving tasks has been noted as an important skill to ensure competent caregiving, it also often leaves little room for creativity or spontaneity in romantic relationships. Indeed, Dickson and colleagues [
5] reported that a lack of spontaneity can be detrimental to the family caregiver’s self-esteem (feelings of entrapment and invisibility) - perhaps a likely cause of difficulty in bonding with the care recipient. Role play, as a strategy to add creativity into routine caregiving tasks, was mentioned in the current study to cope with the loss of sexual relationship and shift in dynamics of the relationship. The participants in this study mentioned that this ‘trade-off’ of role interaction (using intimacy in caregiving) diminishes the perception of the ‘caregiver role’ and enhances the ‘spousal or lover role’. Role play or intimacy in caregiving is not a well-researched topic; nonetheless, this is an important aspect in caregiving that must be further explored to support couples adjusting to their romantic relationships post-injury.
A study by Kreuter and colleagues [
13], that explored partner relationships, functioning, mood and global quality of life of individuals with SCI, identified several reasons for divorce. The reasons included difficulties adapting to new physical functions, challenges in maintaining the relationship, and/or unwillingness to live with the injured individual [
13]. Our results further suggest that a dyad’s anticipation of the injured individual’s quick recovery during the early stage and hoping that the situation is temporary had led to maladaptive behaviours within their relationship. Wiles and colleagues [
43], in their qualitative study on patients’ and carers’ expectations of recovery following stroke, identified that expectations of complete recovery may be a coping mechanism for patients and caregivers, which demonstrates a psychological need for optimism and hope. Although this may be true, our findings indicate that unrealistic recovery expectations by both individuals with SCI and their family caregivers resulted in the dyads not being able to cope with the new life post-injury, and losing sense of control over their future after the realization of the permanent nature of the injury. This led to resentment and withdrawal in dyads, and consequently disintegration of relationships. Furthermore, unlike stroke, the functionality of the injured individual does not improve over time [
7], and the possible permanency of the injury [
44] requires a dual effort by both individuals with SCI and their family caregivers in accepting or finding approaches to adapting to the new life post-injury.
Angel and Buss [
24] suggested retaining some elements from the previous life as a possible strategy to adapting to the injury for individuals with SCI and their caregiving partners. Our findings also suggest a few participants attempted to continue prior activities (e.g., adapted travelling) to retain normality post-injury. Conversely, our findings also suggest creating a new normal by gradually establishing a new routine as a dyad as another approach to adapting to the new life post-injury. Indeed, this represents a synergy between creating a new normal and integrating some prior elements post-injury. The theme ‘creating a new normal’ is consistent with Strauss and colleagues’ [
45] description of normalizing as a fundamental strategy among individuals with chronic diseases and illnesses. Feeling normal and attempts to normalize are vital concepts to individuals with SCI [
46], and families continuously change their perceptions of ‘normal’ contingent on the injury and family situation [
47]. Indeed, the participants in the current study strived to create a new normal by identifying alternative ways for the injured individuals to be active in day-to-day life based on their level of function which was characterized as being beneficial to the dyad and family as a unit (e.g., shifting from being the breadwinner to a domestic role). Chan’s [
41] findings corroborated our study in that paraplegic men changed their role from being the primary earner in the family to taking on more household chores and providing care to children. The similarities between our findings and other studies indicate that creating a new normal requires care recipients and caregivers to simultaneously shift former social roles and norms, an aspect that has rarely been explored within caregiving literature in SCI.
Limitations
Despite the strengths of the current study, a few possible limitations apply. With regard to the recruitment of participants, it is possible that a selection bias may have occurred. It is likely that those participants who agreed to participate may have been better adjusted to injury than those individuals who declined participation. This is possibly a reason for an over-representation in the over 10 years post-discharge group as they have had more time to adapt to life after the injury. Discharge from inpatient rehabilitation is a crucial time for the caregivers of individuals with SCI due to apprehension of taking on a new role which may result in adjustment challenges within relationships. More research exploring the experiences and challenges of individuals with SCI and their family caregivers during the initial stage of transitioning back home is necessary to ensure sustainability within relationships. Also, the majority of family caregivers in the current study were females. Future research should be directed towards exploring the experiences of male caregivers and its impact on relationship dynamics and marital adjustments. Such knowledge could be used to increase the relevance of care models and programs for both male and female caregivers.
Implications for practice and service provision
Evidence-based interventions are needed to help individuals with SCI and their family caregivers adjust to the many personal and interpersonal challenges experienced post-injury. A recent study by Molazem and colleagues [
48] reported that the quality of life (including physical function, social function, role emotional and mental health) had improved in family caregivers who received psycho-educational interventions (e.g., educational sessions on coping strategies, crisis confrontation strategies, appropriate care provision to the care recipient, etc.) in comparison to the usual care control group (i.e., did not receive educational sessions). Although available interventions show optimized quality of life for family caregivers, there is a lack of intervention studies particularly on optimizing caregiving relationships post-SCI. Findings from this study suggest the need for relationship-based education; particularly, communication skills training, to help dyads living with SCI to manage challenges, negotiate changes, and facilitate positive interactions within their relationships. Communication styles that previously worked in relationships may not be successful post-injury. Furthermore, counseling during rehabilitation could educate and prepare individuals with SCI and family caregivers for the challenges that may arise in daily life post-discharge into community. Chan [
41] noted the importance of considering the dyad as a single unit to promote increased understanding and preparedness post-injury. The possible value of formal support from healthcare professionals to help care recipients and caregivers to negotiate improvements in communication within their relationship could potentially reduce long-term issues, including irreparable damages in the nature of their relationship. In combination with professional support, connecting family caregivers with peer support groups (i.e., matched peer mentor and mentee) could also help prepare them for their caregiving role, as well as reduce feelings of loneliness and social isolation and psychological distress [
29,
49] Furthermore, the timing of emotional or psychological support is vital to developing a system that is responsive to caregivers’ ‘readiness’ to receive such specific support [
50]. Although readiness to receive emotional or psychological support is dependent on the individual’s adjustment process [
51], the findings from the current study suggest the possible value of offering counseling and peer support prior to discharge from inpatient rehabilitation or early in the transition to the community. This would ensure relevant support for individuals with SCI and families to help them maintain the stability of relationships post-discharge (i.e., during the first year post-discharge), a time period that can be associated with family dissolution or even divorce [
29].
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