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Spinal cord injury

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers’ relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey.

Sun, 06/12/2022 - 21:43

On the way home: a BCI-FES hand therapy self-managed by sub-acute SCI participants and their caregivers: a usability study

Background: Regaining hand function is the top priority for people with tetraplegia, however access to specialised therapy outwith clinics is limited. Here we present a system for hand therapy based on brain-computer interface (BCI) which uses a consumer grade electroencephalography (EEG) device combined with functional electrical stimulation (FES), and evaluate its usability among occupational therapists (OTs) and people with spinal cord injury (SCI) and their family members.

Thu, 06/09/2022 - 14:05

Is informal caregiving at odds with optimal health behaviour? A cross-sectional analysis in the caregiving partners of persons with spinal cord injury

Background: The intricate relationship between caregiving and health may to some extent be determined by the burden and restrictions imposed on informal caregivers, and the impact these experiences have on health behaviours. It is assumed that a positive caregiver experience leads to health promoting behaviours in caregivers, whereas a negative experience induces the opposite.

Mon, 04/05/2021 - 16:26

When a romantic partner has a spinal cord injury: Caregiving tasks and resilience as moderators of support quality on psychosocial distress and relational closeness

Using a sample of 312 people in a romantic relationship with a partner who has a spinal cord injury (SCI), this study examined the separate and combined effects of caregiving tasks, resilience, and received support on the participant's level of psychosocial distress. We also tested whether such distress might mediate the effect of the predictors on romantic relationship closeness. Results supported the beneficial effects of both resilience and receiving high-quality support, although the timing of the injury moderated these effects.

Fri, 01/22/2021 - 15:52

Lifetime Active Care: A qualitative study of long-term family carers of people with spinal cord injury in Australia

This study reports the findings of a qualitative, grounded theory study which explored the experiences of partners and other long-term family carers living with and supporting loved ones with spinal cord injury. The study is exploratory in that little was previously known about the experience of long-term care-giving in this context in Australia. Most research in this area has focused on this experience during the first 5 years postinjury. This study focuses on the experiences of family carers beyond that 5-year period.

Mon, 11/16/2020 - 11:14

Guidance for behavioural interventions aiming to support family support providers of people with spinal cord injury: A scoping review

Rationale: Research has extensively examined the adverse outcomes of being family support provider also known as a family caregiver, of someone with spinal cord injury (SCI) such as psychological distress, poor health, and burden. Despite clear evidence of the negative impact of this social role, few interventions exist aiming to support family support providers of people with SCI.

Mon, 08/03/2020 - 14:57

Multiple family group intervention for spinal cord injury: Quantitative and qualitative comparison with standard education

Objective: To evaluate a Multiple Family Group (MFG) education and support intervention for individuals with Spinal Cord Injury (SCI) and their primary caregivers. We hypothesized that MFG would be superior to an Education Control Group (EC) for improving patient activation and coping skills, social supports, and relationship functioning. Setting: A large free-standing inpatient and outpatient rehabilitation facility. Participants: Community dwelling adults with SCI and their caregivers living in the Northwest United States.

Mon, 02/17/2020 - 14:33

Toward overcoming physical disability in spinal cord injury: A qualitative inquiry of the experiences of injured individuals and their families

Background: Spinal cord injury (SCI) is a life-changing experience for the individuals with SCI and their families. This study aimed to investigate physical strategies used for overcoming physical disability in individuals with SCI. Methods: In this qualitative study, 17 SCI persons and 13 family caregivers were selected by a purposeful sampling. Settings of the study were Brain and SCI research (BASIR) center of Tehran University of Medical Sciences and Southern Social Welfare Center of Tehran and SCI Association of Tehran, Iran.

Mon, 10/14/2019 - 13:03

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

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.

Tue, 09/10/2019 - 12:54

Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients

Purpose: Family members make an important contribution to informal and formal care, as well as the overall health and wellbeing of individuals with spinal cord injury. Caregiving often results in negative outcomes which, if not addressed, threaten the sustainability of these critical supports.

Wed, 06/19/2019 - 09:36

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