Personal assistance, disabled parents and their children: roles and relationships

Jones, Nicola (2020) Personal assistance, disabled parents and their children: roles and relationships. Doctoral thesis, University of East Anglia.

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Abstract

This thesis reports a qualitative study undertaken to explore how disabled parents and their children experience personal assistance and the impact this has on their lives and relationships. Previous research establishes the inherently complex nature of the employer/personal assistant (PA) relationship, yet few studies have considered the influence on family life, or the impact on children. This study offers unique insights into the realities of both parenting and growing up with PA support and adds to our knowledge and understanding of the needs of families and the individuals within them.
Data were generated from a total of 29 participants. Interviews with parents (11) and children (10) were conducted face-to-face using accessible materials to promote their engagement with the research process. PAs (8) were primarily interviewed by telephone. Participants’ accounts provide a compelling and detailed picture of family life and show that PA support can alter both the quality and nature of the parent/child relationship.
Thematic analysis revealed that PA support can respond flexibly to individual needs, enabling disabled people to express their parenting choices and preventing children from becoming ‘young carers’. However, the presence of PAs can also create tension, anxiety and even destabilise family life. All participant groups expressed a degree of ambivalence about their relationships and were conscious of being continually observed. Parents and children spoke about feeling negatively judged and sometimes undermined by PAs. Children expressed strong views about PA involvement in maintaining family rules and ‘discipline’, with teenagers especially finding personal assistance difficult to adjust to and accept. Data reveal that whether parental impairment is lifelong, or acquired at a later stage, can have a significant impact on parental views, expectations and experiences of using personal assistance.
Based on these findings, suggestions are made for improvements to policy and practice which will better prepare disabled parents, PAs and children for their encounters.

Item Type: Thesis (Doctoral)
Faculty \ School: Faculty of Social Sciences > School of Social Work
Depositing User: Nicola Veasy
Date Deposited: 14 Apr 2021 11:10
Last Modified: 14 Apr 2021 11:10
URI: https://ueaeprints.uea.ac.uk/id/eprint/79746
DOI:

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