Identifying Required Skills to Enhance Family Caregiver Competency in Caring for Individuals With Spinal Cord Injury Living in the Community

Abstract

Background: Due to the earlier discharge of individuals with spinal cord injury (SCI), family caregivers are often left with limited time for learning caregiving skills, and they usually feel unprepared to undertake the caregiver role. Objective: Considering the key role of family caregivers in maintaining the overall health and well-being of the individual with SCI, the objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI living in the community. Methods: A qualitative descriptive approach was used with semi-structured interviews. Thematic analysis was used to determine key themes arising from the experiences of individuals with SCI ( n= 19) and their family members ( n = 15). Results: Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. These include monitoring and managing physical health and secondary health conditions, providing for psychosocial needs, decision making, time management, being flexible, and navigating the health and social services system. Conclusion: The current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. These findings should further alert health care professionals that assessment of caregiving skills at regular intervals is necessary to help caregivers achieve mastery in situations where they are facing caregiving difficulties. Future programs need to be designed to include the skills that family caregivers need and use in real-life caregiving situations.

CuizGiver: desenvolvimento de um jogo digital para a capacitação do cuidador do lesionado vertebro-medular

“…Estes indivíduos têm necessidade de apoio particular dado a exigência do papel de cuidador, relacionada com a incapacidade do seu familiar com LVM. Adicionalmente, ocorre o aparecimento de novos papéis, tarefas, necessidades e redefinição de estilos de vida (7) .…”

“…Todavia, o mesmo não ocorre quando nos focamos nos cuidadores destes indivíduos, sendo ainda uma parte secundária da intervenção profissional do processo de integração do doente com LVM na sociedade (4)(5)(6) . Os cuidadores de indivíduos com LVM necessitam de muito apoio pela sobrecarga que estão expostos, como o aparecimento de novas tarefas, necessidades e redefinição de antigos comportamentos e hábitos anteriores ao evento crítico (7) . Tudo isto resulta no desenvolvimento de uma nova identidade, com novas responsabilidades e que se misturam com outros papéis familiares e sociais prévios (6) .…”

Informal caregivers’ self‐identified roles in facilitating health‐promoting behaviours for weight management in community‐dwelling care recipients living with spinal cord injury in the United States

“…The literature on caregiving for individuals with SCI is largely focused on adjustment and coping post‐injury (Dickson et al., 2012; Middleton et al., 2014) or the caregiver's role and burden in monitoring and managing SCI‐specific physical secondary conditions, such as pressure injuries, and bowel and bladder dysfunction (Charlifue et al., 2016; Conti et al., 2019; Conti et al., 2020; Jeyathevan et al., 2019; LaVela et al., 2012, 2015; Lynch & Cahalan, 2017; Maitan et al., 2018; Secinti et al., 2017). Less information is available about the role of informal caregivers in addressing chronic conditions such as overweight/obesity and in supporting health‐promoting weight management behaviours of healthy eating and physical activity in persons with SCI.…”

Family caregiving research: Reflecting on the past to inform the future

“…They support a range of everyday activities and self-management strategies. 1–3 In the context of spinal cord injury, the physical care provided by family caregivers matches and often exceeds the receipt of formal care (e.g. from personal support workers).…”

“… 25 , 26 These interventions tend to be multicomponent and offer psychosocial education and caregiver training (e.g. skills training, 1 , 27 problem solving 28 Research evaluating caregiver outcomes of psychosocial interventions have yielded mixed results. 29 A meta-review of systematic reviews of interventions to support caregivers concluded there is no “one size fits all intervention to support carers” suggesting caregivers varied in their needs and ability to benefit from different types of interventions.…”