Caring by default: experiences of caregivers of children with developmental disabilities in Ghana mirrored in the context of the stress process model.

BACKGROUND: Caring for a child with developmental disabilities (DD) is associated with significant stress and burden. Caregivers' experiences are influenced by factors such as poverty, stigma, and the lack of accessibility to services, equipment, and assistive devices. These factors are prevalent in a low-resource setting like Ghana which ultimately influences the experiences of caregivers. The aim of the study was to explore the experiences of caregivers of children with DD in the context of the Stress Process Model. METHODS: The study employed a descriptive phenomenological design Caregivers of children with DD attending the Neurodevelopmental Clinic of a Teaching Hospital were purposively sampled. Data collection involved semi-structured interviews, reaching saturation with 14 participants. The interviews were audio-recorded transcribed verbatim and analysed using thematic analysis. RESULTS: Four main themes emerged: perception of caregiving, stressors faced by caregivers, negative health outcomes and coping strategies. Perception of caregiving had two sub-themes as stressful nature of caregiving and time-consuming. Six sub-themes were linked to stressors faced by caregivers: the child's ADL needs, communication barrier, managing challenging behaviour, child's health needs, unmet educational needs, and economic burden. Negative health outcomes had three sub-themes: decline in physical, mental and social well-being. While some caregivers used maladaptive coping strategies like blaming, others employed adaptive coping strategies like religious coping through prayer, self-encouragement and support from other family members. CONCLUSION: The study highlights the complex interaction between caregivers' perception of their caregiving situation, the stressors they experience, their coping resources,  and the negative health outcomes associated with caregiving. These findings underscore the need for context-specific caregiver programmes to mitigate the negative impacts of caregiving.

Strategies to Alleviate the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Low- and Middle-Income Countries: Scoping Review.

BACKGROUND: There is considerable evidence of the burden of care encountered by informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Previous studies have highlighted the need to support these informal caregivers as key players in the care of these patients. To date, limited evidence exists on the extent and types of strategies for supporting these informal caregivers in low- and middle-income countries. OBJECTIVE: This scoping review aims to identify and describe the extent and type of evidence on the existing strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. METHODS: A systematic literature search was completed following the Joanna Briggs Institute methodology for scoping reviews. The participants, concept, and context framework was used to guide the search for literature sources across 5 databases: PubMed, MEDLINE, CINAHL, and PsycINFO for published literature and ProQuest for unpublished literature. This review included studies that reported on strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions, with a focus on studies that evaluated or recommended caregiver interventions and support strategies in low- and middle-income countries. The search was limited to studies conducted between 2001 and 2021, and only papers written in English were considered for inclusion. Using the Covidence software (Veritas Health Innovation), 2 reviewers independently screened the papers, applied the inclusion and exclusion criteria, and met biweekly to discuss and resolve conflicts. The relevant studies and reported outcomes were summarized, organized, and analyzed descriptively using numeric summary analysis and deductive content analysis. RESULTS: Of the 18,342 studies identified, 44 (0.24%) met the inclusion criteria. The included studies were from 16 low- and middle-income countries in Asia, Africa, Europe, and South and North America. Most studies (21/44, 48%) were randomized controlled trials conducted in Asian countries. The identified strategies were grouped into 2 categories: implemented and recommended intervention strategies. Identified strategies included community-based interventions, psychoeducation interventions, support groups, cognitive behavioral therapy, spirituality-based interventions, and smartphone-based interventions. In addition, mindfulness and empowerment, collaborative interventions, standard care, financial and social support, counseling, occupation-based interventions, policy and legislature, and access to mental health care were identified. Psychoeducation and support group interventions were identified as common strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions. CONCLUSIONS: This review provides evidence on the types of implemented and recommended strategies for alleviating the burden of care among informal caregivers in low- and middle-income countries. Although psychoeducational interventions were the most preferred strategy for alleviating burden, their benefits were short-lived when compared with peer-led support groups. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/44268.