Abstract
BackgroundFollowing 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.MethodsA 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.ResultsIndividuals 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.ConclusionsThese 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.
Highlights
Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role
Among the 34 participants, 26 individuals were in dyads (13 caregiver-care recipient dyads in total), and 8 individuals participated on their own (2 caregivers, 6 care recipients)
Individuals with SCI and family caregivers spoke indepth and openly about their experiences and challenges post-injury, with two emerging themes: 1) deterioration of relationship- this reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury; and 2) re-building/maintaining the relationship- this reflects the strategies used by dyads to cope with the changes within the relationship brought upon by the injury
Summary
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. 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 highlighted the importance of the partners’ mutual support and the significance of maintaining a marriage/relationship [13]
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