Being a woman or being a youth: what matters for young adults with chronic diseases?

BACKGROUND: as the prevalence of chronic diseases increases with age, most interventions focus on ‘adults’ and neglect the growing proportion of chronically ill young people aged 15-24. Although they are no longer children, they are still in a period of transition towards autonomy and independence, particularly in industrialised countries. Moreover, health care for chronic patients is criticised for neglecting gender-specific needs. This exploratory collaborative study identified needs and preferences of youths living with a chronic disease with a gender lens. METHODS: we conducted 24 semi-directive interviews: 12 university students living with rare or chronic diseases; 12 health care professionals (doctors, nurses and allied health professionals). We conducted a group interview with an interdisciplinary staff in hospital and a group interview in an integrated primary care centre in 2022 in Brussels, Belgium. Alongside thematic analysis of the content of the interviews, we used the group analysis method with youths and professionals to co-construct recommendations: data were analysed and discussed in several collaborative meetings. RESULTS: youths insisted that professionals should listen more to youths and be more flexible. Youths stressed the need for psychological support currently absent, support regarding educational trajectory and warm environment of care similar to paediatric settings. Professionals expressed their concerns about being more gender-friendly and their lack of training regarding gender issues and other non-medical aspects of chronic diseases. Both youths and professionals consider gender-specific needs in a larger frame of patient-centred care focusing on the integration of patient preferences in a co-constructed dialogue. CONCLUSIONS: to be youth-friendly, health services should better embrace the personalised health care planning, allowing for a better inclusion of what really matters for youths, be their age or their gender. KEY MESSAGES: • Personnalised health care planning supports gender-friendly health services. • Personnalised health care planning supports youth-friendly health services.