Exploring the Experiences of Family Caregivers who Support an Individual with a Learning Disability who Engages in Behaviours of Concern

Barber, Charlotte

Abstract

Part One: Systematic Literature Review
Part one is a systematic review of the literature that explores the experiences of family caregivers who support individuals with intellectual disabilities who display behaviours of concern, with a focus on caregivers’ general experiences and experiences with support services. 24 papers met the inclusion criteria and thematic synthesis was used to synthesise the findings. Thematic synthesis generated three superordinate themes. The findings highlighted the significance of person-centred support for families and individuals and the need for support specifically for family caregiver’s wellbeing. Positive experiences with support services increased the wellbeing of the whole family. Future research should collect demographic data of participants and their family members to enable services to offer support that meets their specific needs.
Part Two: Empirical Paper
Part two is an empirical paper that explores the meaning and experience of compassion for family caregivers who support individuals with intellectual disabilities who display behaviours of concern. Seven semi-structured interviews were completed. Reflexive thematic analysis was used to analyse the data which generated three overarching themes. The findings highlighted the increased difficulties that family caregivers experienced in relation to self-compassion and although they felt showing others compassion was integral to their role as a family caregiver this was not without its difficulties. Caregivers described the importance of self-compassion and receiving compassion from others for their own wellbeing and for enhancing and maintaining their ability to show others compassion. Future research should explore whether interventions to support family caregivers to engage in self-compassion improves their wellbeing and as a result increases the quality of care that they provide to the individual.
Part Three: Appendices
Part three contains appendices relating to both the systemic literature review and the empirical paper, including a reflective statement and an epistemological statement.

Citation

Barber, C. (2024). Exploring the Experiences of Family Caregivers who Support an Individual with a Learning Disability who Engages in Behaviours of Concern. (Thesis). University of Hull. https://hull-repository.worktribe.com/output/4913274

• Thesis Type: Thesis
• Deposit Date: Nov 13, 2024
• Publicly Available Date: Nov 19, 2024
• Keywords: Family caregivers; Behaviours of concern; Intellectual disability; Systematic literature review; Experiences; Support service
• Public URL: https://hull-repository.worktribe.com/output/4913274
• Additional Information: School of Psychology and Social Work; University of Hull
• Award Date: Oct 3, 2024