How do adolescents adjust to their parent’s multiple sclerosis?: An interview study

Abstract

Objectives: the aim of this study was to explore how adolescents with a parent with multiple sclerosis (MS) adjust to their parents' illness.

Design: we used an inductive qualitative approach with open ended questions as this was appropriate to facilitate the development of a broad and child-centred understanding of how adolescents adjust and which resources they use to cope with the challenges that are associated with parental MS.

Methods: fifteen semi-structured face-to-face interviews were conducted. Interviews were audiotaped, transcribed, and analysed using inductive thematic analysis.

Results: adolescents described both positive and negative experiences related to having a parent with MS. Benefits to having a parent with MS included reports of feeling more empathetic to others and more grown-up. Negative impacts included family tension, less time to spend with friends, and worries about the future. The support from the well parent, siblings, and friends were found to facilitate adolescents' adjustment. Adolescents assuming a parenting role and illness characteristics, such as illness deterioration, relapses and fatigue, challenged adolescents' adjustment to having a parent with MS.

Conclusions: some adolescents described adjusting well to having a parent with MS, while others appeared to have more difficulty. Whilst the severity of the parent's deterioration and symptoms appeared to play a role in adjustment, other potentially modifiable factors such as the lack of well parent's support, adolescents' increased parenting responsibilities, and family tension also posed barriers to adolescents' adjustment. Support interventions may be helpful for vulnerable adolescents, which consider both family and individual factors

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Identifiers

ORCID for Felicity L. Bishop: orcid.org/0000-0002-8737-6662

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