“I’m not alone”: a qualitative report of experiences among parents of children with eating disorders attending virtual parent-led peer support groups

Objective The majority of eating disorder (ED) carer research has been conducted with parents of adult patients, using qualitative methodologies, focusing on carer burden and distress during treatment. This article aimed to use results from a large, national, quantitative survey of parents of child or adolescent patients as a springboard for encouraging a more comprehensive investigation of parent experiences. Methods The online survey assessed treatment experiences and parent distress (DASS‐21) but also less commonly investigated topics including symptom detection, experiences with primary care providers, and impacts on parent physical and psychological health, romantic relationship, finances, and employment. Results Key findings included parents (N = 439; 91.6% female): were the first person to notice the ED symptoms in 81.8% of cases; had only a 14.7% chance of a helpful experience with both the first general practitioner and first therapist they saw; needed to see M = 3.55 therapists before finding one that could help; reported worse than normal psychological health (96.0%), physical health (70.5%), and romantic relationship (92.7%); required M = 70.06 days leave from work to care for their child (per household); and 91.8% accessed treatment in the private sector with median out‐of‐pocket expenses of AUD 10,0001–AUD 20,000. Discussion Recommendations to address research and practice gaps include: increased focus on supporting initial symptom detection; improving primary care and treatment experiences; and, increasing the number of ED treatment providers. Urgently needed are solutions to the overwhelming demand for services and clearly, more support for parents. Such strategies are vital for reducing the overall burden of EDs. Public Significance Most eating disorder (ED) caregiver research has focused on experiences of supporting adult patients during treatment. This article used a large national survey to explore parent experiences of their child or adolescent's ED in less commonly investigated areas, such as detection, primary care, impact on parent physical and psychological health, romantic relationship, employment and finances. Findings suggested mixed experiences with health care providers and a very significant toll of the illness on the domains measured. Recommendations were provided for how these important areas can be addressed.

Section: Expansion Of Effective Parent-support Options and Creating N...mentioning

confidence: 99%

Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder

Wilksch

2023

“…Although qualitative research has explored participant experiences of peer support groups for parents of children with EDs (Grennan et al, 2022;Oakley et al, 2021), this is the first study to demonstrate that vPLPSGs are a feasible intervention, associated with strong acceptability and promising preliminary effectiveness for this parent population.…”

Section: Discussionmentioning

confidence: 99%

“…In response to this gap in research, we implemented several virtual parent-led peer support groups for parents of children with EDs living in Ontario, Canada over a year-long period. A qualitative paper arising out of this work found that the exposure to and support from parents in similar scenarios was valuable for parents (Grennan et al, 2022). Participants provided various recommendations for future implementation of this intervention, including greater specificity when allocating parents to groups (e.g., grouping participants based on child's ED type, duration of ED, or geographical location).…”

Section: Introductionmentioning

confidence: 99%

Virtual parent‐led peer support groups for parents of children with eating disorders: A mixed methods feasibility study

Nicula

Grennan

Loewen³

et al. 2023

Self Cite

ObjectiveTo examine the feasibility of a virtual parent‐led peer support group (vPLPSG) intervention for parents of children with eating disorders (EDs).MethodsForty‐four parents were invited to attend 2‐h‐long vPLPSG sessions every other week for 6 months. A convergent mixed methods design was used to integrate quantitative survey data (collected at three timepoints and analyzed using repeated measures ANOVA) and qualitative interview data (collected at 6 months and analyzed using content analysis) to assess intervention feasibility. Feasibility was comprised of acceptability (e.g., recruitment and retention rates, desire to continue attending the groups) and preliminary effectiveness (e.g., change in parents’ self‐reported burden).ResultsThe recruitment rate (67%), retention rate (77%), and attendance rate (60%) demonstrated adequate acceptability. All parents expressed their recommendation of this group to other parents, and most wanted to continue attending vPLPSG sessions. Participants qualitatively reported less isolation and burden as well as improvements in skills and confidence to manage their child's symptoms. These preliminary effectiveness findings were corroborated by quantitative data, with participants reporting a significant decrease in burden [mean difference (MD) = 6.61; p < .004], increase in confidence (MD = 11.17; p < .001), and decrease in unmet needs (MD = 5.03; p < .001) from baseline to 6‐months.DiscussionThe vPLPSG intervention demonstrated feasibility with respect to acceptability and improvements in preliminary parental outcomes. Future research should evaluate the effectiveness of this intervention using a larger, more diverse sample.Public SignificanceDedicated efforts to support caregivers, such as through virtual parent‐led peer support groups, have the potential to increase confidence and decrease burden for parents managing their child's eating disorder.

“…Furthermore, carers of children with anorexia nervosa, particularly mothers, also reported feeling a strong sense of loneliness. Therapists could consider directing carers to peer support to help reduce feelings of isolation and loneliness (Binford Hopf et al, 2013; Grennan et al, 2022). It is important to note, however, that the current results are correlational in nature, and further research is needed to determine optimal procedures of intervention for addressing illness representations.…”

Section: Discussionmentioning

confidence: 99%

Parents' illness representations of their child with anorexia nervosa: A systematic review of qualitative studies using the common‐sense model

Marchetti,

Sawrikar

2023

ObjectiveResearch indicates that parents experience distress while caring for a child with anorexia nervosa. Applying the Common Sense Model of Self‐Regulation (CSM), a framework to describe responses to illness may help to understand the antecedents of parental distress, which could inform how to support parents in treatment. The aim of this systematic review was to synthesize outcomes from qualitative research in relation to parents' experiences of caring for a child with anorexia nervosa using the CSM.MethodSystematic search of four electronic databases (psychINFO, MEDLINE, EMBASE, ProQuest Dissertation, and Theses Database) alongside a two‐way screening process was used to identify eligible studies. Qualitative themes were synthesized using a “best fit” framework analysis and reported according to CSM dimensions of cognitive and emotional illness representations.ResultsA total of 32 studies published between 1970 and 2023 were eligible for inclusion for review. Parents perceived their child's anorexia nervosa as a major health threat observable by illness representations that anorexia nervosa was uncontrollable, incomprehensible, chronic, and associated with negative consequences. The themes also suggested parents take responsibility for causing anorexia nervosa. These illness representations were linked with emotional representations of fear, anxiety, shame, guilt, loneliness, and depression.ConclusionsThe findings provide evidence of the utility of using the CSM to understand the antecedents of parents' distress and negative impacts of caring for a child with anorexia nervosa. Recommendations for future research and clinical practice are discussed emphasizing the need to understand parents' perceptions of their child's illness to putatively maximize treatment benefits for families.Public SignificanceThis review emphasizes the salience of understanding parents distress while caring for a child with anorexia nervosa. The findings present opportunities to best support parents in treatment, with a focus on addressing their cognitive and emotional representations of their child's illness. A multicomponent treatment regimen may be required to support parents if they present with illness representations that negatively affect their well‐being and ability to cope with distress.