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Caring for a sick/disabled child

The following resources examine particular issues and challenges for family members caring for children under 18 with a long-term condition, including physical disability, mental health and learning disability.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

"Home wasn't really home anymore": Understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system

Purpose Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. Methods We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. Results Caregivers ranged from age 30 to 64 (M= 43). They described four ways that caregiving impacted themselves and the larger family system: (1)disruption of home life, (2)emotional (dis)connection, (3)juggling competing roles, and (4)developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. Conclusions Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.

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Informal carers

This House of Commons Library briefing paper provides information about the number of informal carers in the UK and the issues they face. It also explains the rights, benefits and support available to informal carers as well as current and previous Government policy on caring.

Original source (some source materials require subscription or permission to access)