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.

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.

Adolescents' and young adults' experiences of childhood cancer: descriptions of daily life 5 years after diagnosis.

BACKGROUND: Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has been studied to a limited extent; an increased understanding of this young group is needed to improve follow-up care. OBJECTIVE: The aim of this study was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents' and young adults' views of what it is like living with this experience. METHODS: Fifty-nine 11- to 22-year-olds were interviewed a median of 5 years after a cancer diagnosis (response rate, 66%). Data were collected through telephone interviews and were analyzed using qualitative content analysis techniques. RESULTS: Three groups of informants were identified according to their descriptions of the influence of cancer treatment on their daily life: "feeling like anyone else" (informants who described that the cancer experience had almost no influence on current life) (49%), "feeling almost like others" (those who described some influence) (44%), and "feeling different" (those describing a great influence on current life) (7%). CONCLUSIONS: Most of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. IMPLICATIONS FOR PRACTICE: Follow-up care is needed that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer.