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Abstract
Background Chronic illnesses like JIA can have a significant impact on the life of the patient and their family. As in many chronic illnesses of childhood, both economic and psychosocial supports are largely provided by parents/carers. A holistic assessment of psychosocial needs of the patient and their family is vital to provide appropriate support.
Aim In our Tertiary Paediatric Rheumatology Service, informal support is delivered by Medical, Nursing and Allied Health Professionals. National Guidance advocates that psychology should be part of Multi-Disciplinary Team. Our MDT does not have a psychologist within the team. Patients are therefore referred to the psychology services on an individual basis ad-hoc. We wanted to assess the psychosocial impact of a rheumatological condition for the children and families. In addition we wanted to gain greater understanding of the support they had been given and, determine any un-met need in this aspect.
Methodology We carried out an Randomised Retrospective survey with patients seen in our department in 2 consecutive weeks in September 2015. The questionnaire included information regarding the support given to families, how the condition affected their lives and their suggestions to improve the service (Table 1).
No. of years sicnce diagnosis
Findings 50% of those surveyed indicated that their child’s condition had affected their quality of life and 40% indicated that this has affected their way of parenting. 92% stated that they are being supported by the hospital team and 64% mentioned receiving support from their family. 8% felt they needed further support and only 28% think felt they are supported by their GPs/Health Centre (see Table 2 and Figure 1).
Results
Support received
Conclusion This is a pilot survey involving small sample of all the families known to the service. The results do however, support the literature that chronic illnesses have a significant impact on the family. It is reassuring that the majority felt supported by the interventions within the team. Whilst the need for a psychologist within the MDT has not been identified this needs to considered in the context of a very small study sample. We are proposing a larger study to explore this aspect of care within our patient population.
References
Arthritis and Musculo-Skeletal Alliance (ARMA) & British Society of Paediatric and Adolescent Rheumatology (BSPAR) 2010