Dataset Information

Parental experiences with their child's eating disorder treatment journey.

ABSTRACT:

Background

Parents are integral in the treatment of pediatric eating disorders. The current study was conducted to further understand the barriers and facilitators that parents experience in accessing specialized, tertiary level eating disorder treatment for children and adolescents. The goals of the study were to understand the processes leading to diagnosis and treatment, perceived barriers and facilitators to accessing care, and parents' experiences over the course of their child's eating disorder treatment.

Methods

Ten parents whose children were admitted to a Canadian tertiary level specialized pediatric eating disorders program took part in an exit interview upon their child's completion of treatment in the program. In-depth semi-structured interviews were combined with a visual timeline. Interpretive induction was performed to generate high-level concepts that emerged from the interviews.

Results

Five high-level concepts were identified: (1) delays in identifying eating disorder symptoms, (2) challenges in accessing eating disorder services, (3) the right treatment at the right time, (4) emotional impact on parents, and (5) parental expertise and involvement.

Conclusions

Several barriers were identified by parents that interfered with treatment, including system-related challenges when accessing specialized eating disorder treatment, concerns about a lack of appropriate mental health support for their child, and difficulties with transitioning between community and tertiary level care. Negative emotions, including guilt and self-blame, were common early in the treatment journey. Themes of parental involvement throughout treatment, and parents taking charge of their child's recovery, emerged across interviews. The results of this study suggest the importance of early identification of eating disorder symptoms, facilitating smoother transitions between levels of care (e.g., community services and hospital-based eating disorder care), and improving clinical decision-making to ensure children and adolescents with eating disorders receive the most appropriate treatment based on their clinical presentation.

SUBMITTER: Coelho JS

PROVIDER: S-EPMC8314586 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Background:Traditionally perceived as a disorder of women, Eating Disorders (EDs) are known to have impacts on people irrespective of their gender. This study is designed to synthesise the available qualitative research studies to more broadly understand the diverse experiences of ED and their treatment, specifically in relationship to issues of gender. Methods:The methodology involved a systematic search and quality appraisal of the literature published after 1980 using terms that aimed to represent the primary concepts of "role of gender" and "treatment experiences" and "eating disorders". Nine qualitative studies met the inclusion criteria. Meta-themes were inductively generated through a synthesis of data across themes from the relevant included papers. Results:Analysis of data was constructed around three meta-themes, each with subthemes. The first meta-theme "Out of sight, out of mind" depicted the experience of gender issues that were marginalised in treatment. More specifically for transgender people, when gender issues were ignored by treatment providers, this frequently led to non-disclosure of their gender identity. Furthermore, men were less likely to be assessed for an eating disorder and within this context; diagnosis of an ED and referral to specialist treatment was frequently hindered. The second meta-theme "Lack of literacy among health care providers" focused on issues related to misdiagnosis of EDs, and the question of whether this was related to a lack of health literacy amongst health professionals. The final theme "Pathways into treatment that address stigma and other barriers" highlighted the need for the development of future treatment interventions address the complex social reality of the experiencing person, including questions of gender. Conclusion:Gender issues impact upon the ED experience and require broader consideration in the development and evaluation of ED treatment interventions, including the further development of gender-informed interventions. Trial registration:Protocol registered on PROSPERO 2017 CRD42017082616.

Project description:BackgroundSevere combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning. Parents of children with SCID experience many uncertainties related to their child's diagnosis, treatment, recovery, and quality of life. To fully understand parents' experiences throughout their SCID journey, it is important to explore the stressors generated by such uncertainties and how parents cope with these stressors.MethodsWe conducted 26 in-depth interviews with parents whose child was diagnosed with SCID or a SCID-like condition through newborn screening. The interviews explored uncertainties related to their child's diagnosis and how parents coped with these uncertainties. Transcripts were generated from the interviews and analyzed using an inductive content analysis approach which included data immersion, generation and assignment of codes, and interpretation.ResultsParents used a variety of behavioral, cognitive, and affective coping strategies which evolved throughout their SCID journeys. Some parents reported coping by playing an active role in their child's treatment, which included reaching out to other SCID parents or seeking second medical opinions. Other types of coping included establishing house hygiene rules, thinking positively about the child's treatment progress, and relying on family members for help. These coping strategies were both deliberate and intuitive. Participants also described their struggles in coping with stressors related to their child's health and survival. They reported difficulty in processing their emotions and experiencing denial and guilt related to their child's diagnosis. Some parents adapted to ongoing uncertainties through such strategies as positive thinking, self-reflection, and relying on family and community. With successful adaptation, parents emphasized that they continue to use these strategies today.ConclusionOur assessment revealed that parents of children diagnosed with SCID use a variety of behavioral, cognitive, and affective approaches to cope with SCID uncertainties. Although parents reported challenges in coping with SCID uncertainties, they also reported finding ways to overcome these stressors and establish patterns of effective coping. Findings from our study can serve as a guide for parents whose child was newly diagnosed with SCID and for providers such as social workers, genetic counselors, and psychologists.