ABSTRACT
BACKGROUND: Confidential youth consultations aiming at enhancing adolescent autonomy are a cornerstone of transitional care. At the same time, parental support is essential. These conflicting considerations result in a clinical dilemma. OBJECTIVE: The aim of this study was to examine the attitudes of parents to chronically ill adolescents regarding confidential youth consultations and to explore the underlying reasons. METHODS: A sequential explanatory mixed methods design consisting of a cross-sectional questionnaire survey (n = 117) and three focus group interviews among parents (n = 12) to chronically ill adolescents (12-19 years) was used. Quantitative data were analyzed descriptively. Qualitative data were analyzed using King's template method. RESULTS: The parents preferred independent youth consultations starting around the age of 14-15 years. Around 60% of the parents had one or more concerns regarding independent youth consultations. Although 64% of the parents supported conditional or full confidentiality during adolescence, 95% wanted information even though their child did not consent. In the qualitative analysis, the parents described caring for a child with chronic disease as a term of life perceiving themselves as an "octopus" with numerous roles related to daily care and treatment and at the same time with thoughts and worries regarding the future. We found four themes: 'a life with chronic disease', 'responsibility', 'protection' and 'apprenticeship'. The parents' attitudes were influenced by their roles and their perception of the adolescent's competences as well as their experience with the healthcare system. CONCLUSIONS: Our findings suggest that parents need transitional care too.
ABSTRACT
BACKGROUND: Visible psoriasis skin symptoms have a severe psychological impact on quality of life. To improve clinical approaches, methods of assessing these aspects are needed. OBJECTIVES: To investigate the influence of psoriasis on patients' body image based on the Body Image Model (BIM). METHODS: In-depth semi-structured interviews were conducted. Transcriptions of the interviews were subsequently analyzed using concepts from the BIM. RESULTS: Eight patients with severe to moderate psoriasis (PASI ≥10) were interviewed. Five thematic issues linked to the negative impact of psoriasis on patient body image were identified: body coverage, sexual inhibitions, the influence of social support, reduced exercise activity and a negative self-image. Furthermore, information obtained through the Dermatology Life Quality Index (DLQI) questionnaires did not entirely reflect statements from patients made during interviews. CONCLUSION: An altered body image has a psychosocial impact on patients with visible psoriasis that may result in increased body coverage, sexual inhibitions and reduced exercise activity. This further affects self-image negatively and influences how people with psoriasis handle the risk of metabolic syndrome. Assessment of patient body image using components of the BIM increases the possibility of identifying important psychosocial aspects of psoriasis and the related risk of metabolic syndrome and is thus a valuable support for the DLQI questionnaires.
