Tactics and Strategies of Family Adaptation among Parents Caring for Children and Youth with Developmental Disabilities

Abstract

The stressors experienced by families caring for children and youth with developmental disabilities (DD) impact quality of life for all family members. Families employ creative practices to cope and thrive in the midst of such challenges. This study sought to understand the adaptive practices, tactics, and strategies engaged in by parents. We interviewed 39 parents of 46 children and youth with DD in Canada. Thematic analysis elucidated three categories of adaptations and twelve tactics and strategic actions at three ecological levels: within the system—adapting with everyday tactics and strategies; within our family—constructing spaces of care; within myself—adjusting perceptions of adversity. Our critical interpretation highlights an ecology of parental labor across varying psychosocial and health care service contexts in which parents strive to make a good life for their children and families. Nurses can empower and enhance their well-being by conducting holistic assessments and targeted family nursing interventions.

Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home

“…Digital tools to enhance family empowerment have been developed in the Netherlands and their effects have been confirmed ( 48 ). Parents of children and youth with disabilities reported spending many hours searching the Internet for resources and learning new skills (such as nursing care and therapies) while navigating the system, advocating for their children, fundraising, and providing care ( 49 ). In this context, our online program allowed people to apply regardless of region, location, or the child's disability.…”

Perceived stress, family impact, and changes in physical and social daily life activities of children with chronic somatic conditions during the COVID-19 pandemic

“…Depending on the type of disease, financial and time caregiving burden in children with CSC are generally higher than for healthy children [26,27]. Consequently, families of older children (8-18 years) have adapted to this situation over time, for instance with adjusted career choices, financial aid and support, and altered expenditure patterns [27,28]. The same is likely regarding support, as parents of (older) children with CSC may already have built up a sustainable network on which they rely [28].…”

“…Consequently, families of older children (8-18 years) have adapted to this situation over time, for instance with adjusted career choices, financial aid and support, and altered expenditure patterns [27,28]. The same is likely regarding support, as parents of (older) children with CSC may already have built up a sustainable network on which they rely [28]. The absence of an association between financial deterioration and parental stress or other family impact in the CSC sample could also be attributed to earlier adaptation.…”

Mother's knowledge and attitudes towards preventing stunting in their toddlers (1-5 years) in West Java Indonesia

“…Individuals will feel confident in facing problems when given support from family members (Saadah, Yumni, Mugianti, & Yulianto, 2022). Family support can create a family capable of functioning with a variety of knowledge and skills, so that families can improve their health and adjustment in life (Matthews, Puplampu, & Gelech, 2021).…”