Dataset Information

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

ACCESS DATA

Publications

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

Similar Datasets

Project description:BackgroundThe prognosis for underweight individuals with an eating disorder (ED) and posttraumatic stress disorder (PTSD) is worse than for their peers without these comorbid symptoms. This qualitative study explores the experiences of trauma-focused Imagery Rescripting (ImRs) therapy of underweight inpatients being treated for an ED.ObjectiveTo test the feasibility and to improve ImRs by understanding the experiences and perspectives of people with an ED and PTSD who, when underweight, received ImRs as an adjunct to their inpatient ED treatment.MethodTo explore how underweight people with an ED experience and perceive ImRs, we used a qualitative study design involving semi-structured interviews with 12 participants. After analysis, the data were summarized and classified within a thematic framework that focused on experiences and improving the ImRs method.ResultsThe thematic analysis resulted in the following 6 main themes; (1) Expectations of ImRs; (2) Ability to participate in ImRs; (3) Effect of ImRs; (4) Experience of ImRs technique; (5) Conditions under which ImRs is given; (6) In depth-analysis. The results show that despite the fear of disappointment the participants appreciate addressing the PTSD and ED symptoms simultaneously. Further, results showed that it had been possible for them to attend ImRs but that the effects of ImRs were not uniformly perceived. Also, participants indicated that a caring context is important and that ImRs should not be scheduled immediately before a meal. Finally, the treatment generated hope.ConclusionsThe findings of this study demonstrated the feasibility of the integration of ImRs trauma treatment for individuals who are being treated in an ED inpatient treatment setting, and are in contrast to standard practice where the focus of inpatient treatment has been ED-symptom improvement without comprehensively addressing past traumatic experiences during an underweight phase. Trial registration International Clinical Trials Registry Platform (ICTRP) (NTR6094). Date of registration 09/23/2016. https://trialsearch.who.int/Trial2.aspx?TrialID=NTR6094.

Project description:Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents' experience of the initiation of their child's advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were 'giving up'. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families' individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known: • In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child's end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New: • Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals' approach needs to be professional, respectful and empathetic to the parent and child's situation. • Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.

Project description:ObjectivesHealthcare transition (HCT) interventions are pivotal to paediatric rehabilitation. However, there has been limited research focusing on HCT in young people with spinal cord injury (SCI). To date, little has been reported on key factors that may contribute to a positive or negative transition experience and what, if any, are the gaps in the transition process. This study explored the experiences of transition from paediatric to adult healthcare for young people with SCI and parents/caregivers in pursuit of co-designing and developing an intervention to support transition.Design, setting and participantsThis qualitative study forms part of the planning phase of a larger participatory action research project. It supports obtaining a rich understanding of the phenomenon and the issues and actions necessary to achieve change. Semi-structured individual interviews were conducted online between April and June 2021 with young people with SCI and parents/caregivers who had transitioned or were preparing for the transition from paediatric to adult healthcare in NSW, Australia. The interviews were analysed using an inductive reflexive thematic analysis approach.ResultsThe study recruited nine participants, five young people with SCI and four parents/caregivers. The interviews provided invaluable insight into young people with SCI and their parents'/caregivers' experiences of HCT. As HCT experiences were often less than optimal and needs were not adequately met, some recommendations were offered. These included a coordinated and streamlined handover from paediatric to adult healthcare providers, and a 'one-stop shop' for young people with SCI and their parents/caregivers to access transition information, such as how it occurs, who to call for ongoing support and advice, and tips on how to transition successfully.ConclusionProviding a coordinated and streamlined handover process as well as access to more context-related information could improve the transition experiences of young people with SCI and parents/caregivers, resulting in improved health outcomes and greater independence.Trial registrationACTRN12621000500853.

Dataset Information

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

Background

Method

Results

Conclusions

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets