Searchable abstracts of presentations at key conferences on calcified tissues
Bone Abstracts (2019) 7 P191 | DOI: 10.1530/boneabs.7.P191

ICCBH2019 Poster Presentations (1) (226 abstracts)

Supporting the emotional well-being of children living with osteogenesis imperfecta; an upstream health promotion initiative

Ali Seasman

Sheffield Children’s NHS Foundation Trust, Sheffield, UK.

Background: Sheffield Children’s NHS Foundation Trust offers a highly specialised metabolic bone service for children and young people living with Osteogenesis Imperfecta (OI). OI is a chronic health condition causing bone fragility, bone pain, bone deformity, frequent fractures and variable physical limitations with wide reaching consequences on both children and families; the potential to experience elevated psychological distress is common.

Presenting problem: The worldwide prevalence of children living with a chronic physical condition and requiring long term management is estimated at around 25%. Chronic physical health conditions are associated with low mood, depression and anxiety with a concomitant decline in psychosocial outcomes such as academic performance, self-esteem and quality of life. Compared to their non-disabled peers these children are more susceptible to social/emotional difficulties; as many as half are estimated to meet the criteria for a diagnosable mental health condition. There is increasing evidence that better physical and mental health outcomes are achieved when both are factored into treatment and management of long term conditions such as OI.

Management: This poster describes an innovative health promotion initiative to strengthen the emotional well-being of children and families living with OI. The resource, a leaflet presented in both digital and paper format, offers information to parents/carers and teachers to enable them to develop the skills to promote resilience, self-efficacy, self-esteem and coping strategies. The resource adheres to the psychological principles of learning. It provides information and understanding on developmentally appropriate worries and fears, commentary and insight into attitudes and beliefs often experienced by children and parents/carers, and teaches skills and competencies from Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) to strengthen emotional well-being.

Discussion: Whilst health promotion resources may not substitute 1:1 education and advice,when supplemented with a designated OI service and targeted interventions, there is the potential for an ‘upstream’ mental health promotion initiative to bring about substantive change in the often complex behaviours seen in children and families living with OI. Feedback from allied health professionals, academics, families living with OI and charities working with this group, suggests the resource can be effective in meeting this need.

Disclosure: The authors declared no competing interests.

Volume 7

9th International Conference on Children's Bone Health


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