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Care experiences of young people with eating disorders and their parents: qualitative study.

ABSTRACT: BACKGROUND:Perspectives of young people with eating disorders and their parents on helpful aspects of care should be incorporated into evidence-based practice and service design, but data are limited.AimsTo explore patient and parent perspectives on positive and negative aspects of care for young people with eating disorders. METHOD:Six online focus groups with 19 young people aged 16-25 years with existing or past eating disorders and 11 parents. RESULTS:Thematic analysis identified three key themes: the need to (a) shift from a weight-focused to a more holistic, individualised and consistent care approach, with a better balance in targeting psychological and physical problems from an early stage; (b) improve professionals' knowledge and attitude towards patients and their families at all levels of care from primary to 'truly specialist'; (c) enhance peer and family support. CONCLUSIONS:Young people and parents identified an array of limitations in approaches to care for young people with eating disorders and raised the need for change, particularly a move away from a primarily weight-focused treatment and a stronger emphasis on psychological needs and individualised care.Declaration of interestNone.

SUBMITTER: Mitrofan O

PROVIDER: S-EPMC6343117 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature

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Care experiences of young people with eating disorders and their parents: qualitative study.

Mitrofan Oana O Petkova Hristina H Janssens Astrid A Kelly Jonathan J Edwards Eve E Nicholls Dasha D McNicholas Fiona F Simic Mima M Eisler Ivan I Ford Tamsin T Byford Sarah S

BJPsych open 20190101 1

<h4>Background</h4>Perspectives of young people with eating disorders and their parents on helpful aspects of care should be incorporated into evidence-based practice and service design, but data are limited.AimsTo explore patient and parent perspectives on positive and negative aspects of care for young people with eating disorders.<h4>Method</h4>Six online focus groups with 19 young people aged 16-25 years with existing or past eating disorders and 11 parents.<h4>Results</h4>Thematic analysis ...[more]

PMID: 30762506

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Project description:Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves. We conducted in-depth interviews with eighteen parents (fourteen mothers, four fathers) in Addis Ababa (between December 25, 2017 and January 8, 2018) and the rural town of Butajira (between August 08, 2018 and August 16, 2018). We analysed the data using thematic analysis. Parents perceived and experienced different forms of stigma that were directed towards their child (public stigma) and themselves (courtesy stigma). Some parents also described how they isolated themselves and their child from social life (affiliate stigma). Parents perceived the negative consequence of stigma on the lives of their child with DD, siblings and themselves. Most parents also described examples of positive reactions and support from their own family and the community. Participants' accounts suggested supportive contributions and positive responses from the general public came primarily from those who had better awareness of DD. Not all parents in our study internalised the stigma that was directed at them. Whilst perceived family support and acceptance and increased awareness about DD appeared to help some parents not to internalise stigma, the perceived lack of social support and acceptance made some parents vulnerable to internalised stigma. These findings can inform anti-stigma intervention priorities. Awareness-raising activities targeting the community as a whole as well as interventions targeting parents themselves are likely to be beneficial. Interventions should consider the wellbeing of the whole family unit rather than focus on individuals alone.

Project description:OBJECTIVES:To explore parents' experiences of seeking health care for their children and instead being accused by healthcare professionals of Shaken Baby Syndrome/Abusive Head Trauma (SBS/AHT), being reported to Social Services, undergoing judiciary processing, and the impact of these events on family (dis)integration. METHODS:Design: A qualitative study based on qualitative content analysis. Participants: Twelve parents in Sweden, mothers and fathers, seeking health care for their infants, encountering allegations of SBS/AHT, losing custody of their infants, and being subjected to a judiciary process, and finally regaining custody of their children. Data collection: In-depth interviews. RESULTS:An overarching theme 'Fighting for protection of their child after being trapped by doctors' and four sub-themes were developed to reflect the parents' experiences, reactions and interpretations. The first sub-theme, 'Being accused of injuring the child', illuminated the shock experienced when seeking care and instead being accused of being a perpetrator. The second, 'Chaos and powerlessness', refers to the emotions experienced when losing custody of the child and being caught in the enforcement of legislation by the authorities. The third, ´The unified fight against the doctors' verdict´, illustrates the parents' fight for innocence, their worry for the lost child, and their support and resistance. The fourth, 'The wounded posttraumatic growth', describes the emotions, grief, panic, anxiety, and challenges in reuniting the family, but also the parents' reflections on personal growth. Unanimously, they had experienced the authorities' inability to reconsider, and expressed a deep mistrust of paediatric care. CONCLUSIONS:Being wrongly accused of child abuse and alleged SBS/AHT evoked emotions of intense stress, but parents endured because of a successful fight to regain custody of their child. However, the trauma had a long-term impact on their lives with residual posttraumatic stress symptoms and mistrust towards healthcare services and the authorities. The results provide important inferences for restoring system failures within child protection services.

Dataset Information

Care experiences of young people with eating disorders and their parents: qualitative study.

Publications

Care experiences of young people with eating disorders and their parents: qualitative study.

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