P092 Empowering Parents: Navigating the Healthcare Journey as Nurses, Pharmacists, Therapists, Educators, Psychologists and Partners
Authors: Livermore Polly 
Published: April 2024

Background/Aims

The role of a parent changes when children and young people get diagnosed with a chronic health condition. Understanding these new responsibilities in terms of roles can be helpful. Nurse (daily assessment), pharmacist (administering many routes of treatments), dietician (monitoring, preparing, administering diet), physiotherapist (therapy interventions), teacher (disease education, adherence), advocate (school conversations, disability benefits), taxi driver (attending appointments) and psychologist (support, counselling). Embedding these roles successfully with their own health needs, employment and family life, can be challenging.

Methods

Inviting parents and carers to help design a study to improve our support of parents has led to some powerful insights. The NIHR funded IMPACT study aims to design, develop and test an intervention to support parents of children and young people with rheumatological conditions. Parents and carers were invited to join a group through discussions during clinical care. A group of 30 parents, carers and young people initially met together virtually as a Patient and Public Involvement and Engagement Group for the IMPACT study (PPIE). Meeting parents and carers separately to the children and young people soon became important to enable parents to talk about their experiences of being a caregiver with open and honest discussion, importantly without feeling guilty.

Results

Parents experienced ‘guilt’ from many perspectives, but predominantly, guilty for talking about their own feelings when it is their child’s illness and guilt for putting their child through painful interventions. Parents talked about how because they were not the ones with the illness, they often did not feel able to ask questions that they had of health care professionals. For example, when a parent accompanies a young person to an appointment, they cannot often ask about whether this medication would work this time, about the possibility of certain side effects or about the risk of malignancy, as asking about these in front of their adolescent could plant worries and concerns that they might not currently have. Whilst the multidisciplinary nature of paediatric rheumatology is often celebrated, this means that parents naturally adopt these roles themselves between appointments. Parents described how their role changed and they “weren’t just a parent anymore”. For example, as parents they want to administer therapies to children at home for many reasons (keeping them out of hospital, taking control), but this means they take on new roles and responsibilities and then cause pain and suffering to their child, the child that they should be protecting from pain and suffering. This then causes guilt.

Conclusion

This work explores some of these factors in further detail and offers to all health-care professionals an insight into the multifaceted role of a parent of a chronically ill child and offers suggestions to improve upon some of these.

Disclosure

P. Livermore: Grants/research support; NIHR Fellowship.