Parents to chronically ill adolescents have ambivalent views on confidential youth consultations – a mixed methods study

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.

Late adolescents’ own and assumed parental preferences towards health-care related confidentiality and consent in Belgium

“…Studies have shown that the actual difference in attitudes is less pronounced: parents hold similar attitudes to adolescents on issues of confidentiality [ 36 ], with adolescents slightly more in favor of confidentiality than parents. However, some studies have also shown that parents themselves sometimes hold ambivalent views regarding adolescents´ confidentiality [ 11 – 13 ]. They feel that confidential consultations endanger their ability to be a ‘good parent’ since they are partially excluded from their child’s health care [ 11 , 12 ].…”

“…Parental attitudes towards health-care related confidentiality and consent for adolescents are mixed. Although parents recognize the benefits associated with confidentiality for their children, they also view such health-care related information as a parental right and are uncomfortable not knowing what is discussed in these confidential consultations [ 11 – 13 ]. Although only very few studies have been conducted that investigate parents’ reasoning behind these mixed feelings, preliminary evidence from Australia indicates that these feelings are underpinned by two key factors: the way in which they perceived their role as a parent and their level of trust in health professionals generally, but specifically, their child’s physician [ 12 ].…”

“…Although only very few studies have been conducted that investigate parents’ reasoning behind these mixed feelings, preliminary evidence from Australia indicates that these feelings are underpinned by two key factors: the way in which they perceived their role as a parent and their level of trust in health professionals generally, but specifically, their child’s physician [ 12 ]. European evidence on this topic is scarce [ 13 ].…”

Polish adolescents’ right to confidential primary health care is not respected despite high public acceptance

“…10 In Denmark, 11% of adolescents aged 12-15 years and 33% aged 15-18 years have ever had a private time with a doctor. 11 In Switzerland, this was approximately 20% of the 15-year-olds. 12 In the United States, the percentage of adolescents (similar in age) who have private time fluctuates between 29% 13 and 50% 14,15 and is even higher (up to 90%) when the appointment is with a specialist in adolescent medicine.…”

Development of a Complex Intervention to Support Parents of Chronically Ill Adolescents in Transition From Pediatrics to Adult Care (ParTNer-STEPs)

“…Studies have found that parents of chronically ill adolescents feel responsible for their child's daily care and treatment and may fear handing over treatment responsibilities to their child (11,12). Parents ask for support to withdraw and adapt to their new role as 'consultants', instead of 'managers' (13)(14)(15)(16)(17).…”