Endocrine Abstracts

Purpose: To gain an understanding of lived experiences of the role of family and carers during an acute episode of adrenal crisis through qualitative interviews with family carers. To gain an understanding of the role of family members and cares during an acute episode and to make recommendations for future standards of care in supporting family and carers to support self-management for loved ones, and health care professionals.

Methods: This study used the Braun and Clarke’s 2006 approach to thematic analysis to explore qualitative data derived from five focus-group interviews to investigate the impact of Adrenal Insufficiency (AI) on family members and carers. Stratified by Adrenal Insufficiency type and country of residence in depth interviews were conducted to gain insight and understanding of the barriers and enablers to adherence, self-management to treatment, preventative strategies to minimise the risk of AC, and the provision of patient education and care services during the COVID – 19 Pandemic. Purposive sampling methodology was used to select a sample of participants which were recruited via Patient Advocacy Groups or patient charities providing support for adrenal insufficiency in the UK (emailing lists and social media). Participants were allocated to their respective groups on a first come-first- serve basis based on their AI type, and country of residence.

Results: Five themes were identified with a total of 18 sub themes. The five main themes were inadequate awareness of AI of the holistic considerations of AI, individuals with AI are experts in their management, lack of access to endocrine specialists to help live well with AI, lack of AI treatment knowledge in health care professionals and limited practical and emotional support. The family carers reported issues with gaining access, lack of appointments over the last 2 years and a lack of knowledge of AI by HCPs, which in some cases resulted in initial misdiagnosis of other conditions such as COVID-19 instead of an AC. A large portion of the feedback received from the focus group interview suggested that the education and training given for the emergency kit was severely lacking. Family carers reported accessing patient advocacy groups (PAGs), extremely helpful in accessing resources for clinical information and as a support mechanism.

Conclusion: The finding will support and guide international standards of care services for families and healthcare professionals, and will inform future research studies in supporting family carers and healthcare services to promote self-care strategies.