“They are looking at us to be bricks, because their cement is crumbling…”
Eating Disorders (EDs) are disabling mental health conditions that not only affect an individual, but also those around them. Just like this quote describes: parents who play an important caregiving role often feel like they need to remain strong for the sake of their afflicted child. But imagine being under this intense pressure to hold the fort every day without knowing when it will get better… it’s not surprising that parents often feel overwhelmed and burnt out. We’re only human after all! So…this begs the question: how can we reduce parents’ burden? Read on to find out!
The impact of ED
The everyday life of a caregiver for children and young people (CYP) with EDs is not easy. Studies have found that parents often experience high levels of psychological distress, with huge impacts on their mental, emotional, social and physical wellbeing. These negative effects can affect caretaking behaviour and feed into a vicious cycle of ED maintenance, which can impact recovery. Unfortunately, there isn’t enough support to help parents manage and overcome the challenges they face as carers, and many parents feel that their needs are not met in existing support provision.
So, what can we do to develop more tailored and effective support? Well, the first step is to simply ask them! It’s important to hear from parents themselves about their support needs so that we can identify strategies to address them. We can also combine perspectives from both parents and CYP to gain more in-depth understanding of their experiences, needs, and preferences, and incorporate helpful aspects of care into future support.
What did I do?
I (re)analysed existing data (from another study) that consisted of focus group discussions and interviews with CYP with EDs and their parents. Within these discussions/interviews, CYP and parents shared their perspectives of the ED journey from the onset of symptoms to recovering from the illness, including challenges they faced and suggestions for improvement. The transcripts were analysed using inductive thematic analysis, which identifies patterns of meaning (themes) within qualitative data.
What did I find?
I identified three themes (see below), each representing one aspect in the multifaceted role of parents/carers. These are further split into subthemes describing the associated challenges and suggestions for improvement. Although this may seem complicated, don’t worry, I’ll walk you through it step by step.
The “chasm” between parent and child
Any loving parent would try to understand their child to deepen their relationship with them. However, parents struggle to relate to their child’s difficulties and are unable to “separate” the ED from their child, affecting the parent-child relationship.
“sometimes I wish that I wasn’t at home whilst I was recovering” (CYP 3)
To bridge the gap in understanding and communication, participants expressed the need for greater psychoeducation (“what to do and what not to do in the situation”; CYP 11) and skills-training sessions (“what to say, when to say it”; Parent 6) to foster a nurturing environment for recovery.
“understanding that a lot of the behavior again is all because of the brain’s deprivation…calorie deprivation as opposed to ‘that’s your daughter or your son” (Parent 11)
EDs are “all-consuming”
As a caregiver, there are many sacrifices one has to make as the illness takes control over your life: “It affects your life, it turns your whole family life upside down” (Parent 5). Parents feel emotionally and physically drained as they are “so focused on putting the air into somebody else’s balloon” (Parent 9). They stressed the importance of clear practical guidance and peer support to strengthen resilience and self-efficacy.
“I think that’s all that parents need to know in some ways, ‘It’s not your fault, it’s caused by lots of things, and if you want to know more about it here’s the link’” (Parent 11)
Sense of self
As individuals, one desires to be heard and understood. However, as parents battle for support, they lose their identity as “it’s always linked” to their child and “never linked to you as a person” (Parent 2).
“I just kind of went into a bit of a panic and contacted everyone and anyone […] to learn as much as I could” (Parent 10)
Parents want “someone just to understand how I was feeling” (Parent 2), and suggested creating a wellbeing support group and increasing awareness of what is it like to parent a child with ED.
Conclusion
These findings show that parents encounter many challenges including: mis-communication/-understandings affecting their relationship with their child; desperation to “fix the ED” causing huge impacts on their own wellbeing; and feelings of isolation from being disconnected to the outside world. Above all, they feel conflicted between their identities as parents and carers, leading them to lose sight of who they are as an individual.
Moving forward, it’s important that we incorporate both parents’ and CYPs’ suggestions for improvement (e.g., psychoeducation, peer support group, skills training), and involve them in every step of service design (aka “co-production”), to provide the optimum support. We must consider the multifaceted role of parents, and empower, instil hope and reassure them that they are not to blame. This can in turn improve parent-child relationship and foster a nurturing environment for recovery. Improving parents’ knowledge and understanding of EDs can also break the vicious cycle of ED maintenance.
Think of it as killing two birds with one stone: by educating parents and improving parental support, we can effectively reduce the impact and distress caused by EDs and improve outcomes for both parents and CYP with EDs. Finally, to make resources more accessible, we can consider developing web-based approaches to overcome logistic and geographic barriers.
References
Anastasiadou, D., Medina-Pradas, C., Sepulveda, A. R., & Treasure, J. (2014). A systematic review of family caregiving in eating disorders. Eating Behaviors, 15(3), 464–477. https://doi.org/10.1016/J.EATBEH.2014.06.001
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706QP063OA
Coelho, J. S., Suen, J., Marshall, S., Burns, A., Lam, P. Y., & Geller, J. (2021). Parental experiences with their child’s eating disorder treatment journey. Journal of Eating Disorders, 9(1), 1–14. https://doi.org/10.1186/S40337-021-00449-X/FIGURES/1
Cribben, H., Macdonald, P., Treasure, J., Cini, E., Nicholls, D., Batchelor, R., & Kan Background, C. (2021). The experiential perspectives of parents caring for a loved one with a restrictive eating disorder in the UK. BJPsych Open, 7(6), e192. https://doi.org/10.1192/BJO.2021.1019
Schmidt-Hantke, J., Vollert, B., Hagner, F., Beintner, I., Hütter, K., Nitsch, M., Jacobi, C., & Waldherr, K. (2021). Stakeholders’ perspectives on online interventions to improve mental health in eating disorder patients and carers in Germany. The European Journal of Public Health, 31(Suppl 1), i80. https://doi.org/10.1093/EURPUB/CKAB057
Wilksch, S. M. (2023). Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder. International Journal of Eating Disorders, 56(7), 1275–1285. https://doi.org/10.1002/EAT.23938
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