Development of a self-management mobile app for bereaved adolescents : evaluating patient and public involvement

Background: Losing a family member during childhood is a potentially traumatic event and increases the risk of mental health difficulties. Adolescents have the right to express their views in research of relevance to them, but few studies have involved bereaved adolescents as collaborators (i.e. Patient and Public Involvement (PPI)). Furthermore, to ensure meaningful and non-tokenistic involvement, bereaved adolescents’ levels of participation and experiences of taking part in research need to be evaluated.

Objectives: The aim was to describe and evaluate a PPI process working with bereaved adolescents to develop a self-management mobile app for adolescents in grief.

Methods: The PPI process consisted of four workshops during which the app’s logo, colours, name, content, and layout were discussed with six parentally bereaved adolescents aged 13–18 years. The adolescents were recruited through a non-profit organisation providing support for adolescents in grief. The PPI process was documented and evaluated using participant observations and an online survey completed by the adolescents, covering the themes of social context, participation, and influence.

Results: The adolescents perceived the social context as comfortable and inclusive, where their knowledge was valued. Their participation was characterised by ownership and motivated by a desire to help others with similar experiences. The adolescents’ ability to participate in PPI activities was assisted by the researchers’ flexibility, although challenging assignments may have made participation harder. Throughout PPI activities, adolescents contributed with relevant input and reported feeling influential. The study reached the intended levels of participation and appeared to adequately fulfil the adolescents’ right to participation.

Conclusions: Engaging adolescents who have undergone a potentially traumatic event, such as the loss of a family member, in research can enhance the overall relevance of the study. Moreover, it can entail a meaningful and positive experience for the participating adolescents, while also fulfilling their fundamental right to participation.

HIGHLIGHTS

• A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.
• Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.
• The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.