'Darkness as we face the unknown': Biopsychosocial-spiritual experiences of parents of children and young people with type 1 diabetes from the Middle East and North Africa (MENA) region.

Résumé

AIM: Qualitative interviews were conducted as part of the development of a person-reported outcome measure (PROM) to assess biopsychosocial-spiritual outcomes of parents of children with type 1 diabetes (T1D) in the Middle East and North Africa (MENA) region. The aims were to (i) explore the biopsychosocial-spiritual experiences of parents in the MENA region (ii) identify biopsychosocial-spiritual constructs of the PROM.METHODS: Two focus groups were conducted with n = 5 mothers of children with T1D (online), one focus group with n = 3 healthcare professionals (online) and one focus group with n = 6 policymakers (in person) interested in PROM development in Saudi Arabia. Four semi-structured interviews were conducted with n = 4 fathers of children with T1D in Saudi Arabia (online). Interviews were audio-recorded and transcribed verbatim using a thematic analysis approach.RESULTS: Four main themes and several sub-themes were identified: (1) emotional well-being: (a) 'Darkness as we face the unknown': distress, worry and anxiety (b) familiarisation and empowerment: coping and optimism; (2) bio-physical well-being: (c) 'I have to be vigilant': insomnia and fear of hypoglycaemia; (3) social impact and well-being: (d) stigma, sacrifice and support; and (4) spiritual well-being: (e) 'I leaned in on spirituality': hope and acceptance.CONCLUSIONS: The themes and sub-themes depict that diabetes has an impact on parents' biopsychosocial-spiritual well-being. All stakeholders had positive reflections in relation to the value of the development of a PROM as a tool for early detection of issues related to parents' biopsychosocial-spiritual well-being.