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Understanding the lived experience and psychosocial needs of children and young people with Juvenile Dermatomyositis: A mixed methods study

Livermore, Polly; (2021) Understanding the lived experience and psychosocial needs of children and young people with Juvenile Dermatomyositis: A mixed methods study. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background Whilst causing profound muscle weakness and skin rashes, with no cure and a risk of mortality, the rare autoimmune disease ‘Juvenile Dermatomyositis’ can also have severe psychosocial implications. Aim To determine the psychosocial needs of children and young people with Juvenile Dermatomyositis and understand how these can be addressed more fully in the future. Method An exploratory, sequential design employed four phases. Hermeneutic phenomenology guided interviews with children and young people over the age of eight (Phase 1). A suite of questionnaires sought to establish resonance from early findings with children from 15 centres across the United Kingdom (Phase 2) and clinical teams completed a survey about their services and delivery of psychosocial care (Phase 3). A dissemination and intervention workshop was the final phase (Phase 4). Results The lived experience of Juvenile Dermatomyositis, described across 15 interviews was encapsulated in the metaphor of a ‘rollercoaster’. Data from 123 questionnaire respondents revealed that the population reported lower emotional distress than a normative population, with 81% feeling supported. Where emotional distress was reported it was correlated with uncertainty and a perception of burden. Concerns about school and lack of peer support emerged as new findings. All 40 professionals surveyed described doing their best to consider psychosocial needs, although services were limited in all centres. At the dissemination workshop the 33 participants agreed that school support and peer support must be prioritised. Conclusion The study offers new insights from a range of perspectives, built incrementally over four phases, refining the rollercoaster model and detailing where psychosocial care would be best placed to support children and young people. The mnemonic SAFE was introduced to support professionals in implementing these findings: Support, Ask, Friends, Education, reinforcing the importance of asking children and young people how they are coping, whilst living with Juvenile Dermatomyositis.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: Understanding the lived experience and psychosocial needs of children and young people with Juvenile Dermatomyositis: A mixed methods study
Event: UCL
Language: English
Additional information: Copyright © The Author 2021. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Infection, Immunity and Inflammation Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10121755
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