Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients

Abstract

Background Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. 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. Thus, the objectives of this study 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. Methods A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI’s ( n = 19) and their family caregivers’ ( n = 15) experiences. Results Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. Conclusions These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.

The Protective Impact of Telemedicine on Persons With Dementia and Their Caregivers During the COVID-19 Pandemic

“…2 ), was not surprising since synergistic interaction between care-recipients and caregivers is well known in many chronic conditions under home care. 25 What may be surprising however is the lack of such a correlation within the control group, where the general well-being of both care-recipients and carers deteriorated over time. Within the intervention group, the correlative analysis provided an estimate of 25% for the shared variance between the betterment observed in care-recipients and caregivers in this period.…”

Disability as an Interpersonal Experience: A Systematic Review on Dyadic Challenges and Dyadic Coping When One Partner Has a Chronic Physical or Sensory Impairment

“…Such imbalance may be inherent in the notion of role overload in that one partner adopts different roles and associated tasks while the other partner, usually the patient, is forced to renounce past roles. For instance, Jeyathevan et al ( 2019 ) used the theme “asymmetrical dependency” to describe the relationship of individuals with SCI and their family caregivers. The couples in the study of Dickson et al ( 2010 ) referred to the “one-sidedness” of many couple interactions post-SCI.…”

“…The role changes perceived by many couples across health impairments were also important contributors to reduced sexual intimacy. Some spouses reported experiencing role conflicts between being a caregiver and being a romantic, sexual partner (Jeyathevan et al, 2019 ; O'Keeffe et al, 2020 ). The loss of a sexual relationship caused some spouses in SCI couples to feel like their role had changed to a parental role, underlining the interrelations between role changes and sexual intimacy changes (Dickson et al, 2010 ).…”

“…Holding back from disclosing personal experiences seemed to be a prevalent phenomenon in couples coping with physical and sensory disability of one partner. Studies suggested that avoidance of certain topics, cautious communication and holding back, feeling uncomfortable sharing one's emotions, and protective buffering were common in couples coping with SCI (Chan, 2000 ; Jeyathevan et al, 2019 ), stroke (Croteau et al, 2020 ), MS (Wawrziczny et al, 2019 ), and TBI (O'Keeffe et al, 2020 ). Holding back from sharing personal experiences seemed to be relationship-compromising.…”

Using the Exploratory Sequential Design for Complex Intervention Development: Example of the Development of a Self-Management Program for Spinal Cord Injury

“…At the same time, caregivers need individual-level support to address their substantial emotional needs. Members of our research team have embarked on a program of research on developing intervention(s) to support the needs of caregivers of individuals with SCI (e.g., Jeyathevan et al, 2019; Jeyathevan et al, 2020).…”