Parents' views on and need for an intervention during their chronically ill child's transfer to adult care

EL Thomsen, S Hanghøj… - Journal of Child …, 2023 - journals.sagepub.com
EL Thomsen, S Hanghøj, BA Esbensen, H Hansson, KA Boisen
Journal of Child Health Care, 2023journals.sagepub.com
Parents of chronically ill adolescents play a significant role during their child's transition and
transfer to adult care. Parents seek help and support, but appropriate initiatives are still
lacking. Thus, there is an urgent call for knowledge regarding parents' needs and views on
such support. The aim of this study was to examine, in relation to parents of chronically ill
adolescents: 1) views and experiences regarding their child's transfer from paediatric to
adult care, and 2) which initiatives parents preferred in relation to the transfer. The study was …
Parents of chronically ill adolescents play a significant role during their child’s transition and transfer to adult care. Parents seek help and support, but appropriate initiatives are still lacking. Thus, there is an urgent call for knowledge regarding parents’ needs and views on such support. The aim of this study was to examine, in relation to parents of chronically ill adolescents: 1) views and experiences regarding their child’s transfer from paediatric to adult care, and 2) which initiatives parents preferred in relation to the transfer. The study was based on the interpretive description method, and data were collected through face-to-face or telephone interviews with parents of chronically ill adolescents aged 16–19 (n = 11). We found three overall findings: ‘Feeling acknowledged vs. feeling excluded’, ‘Perceived differences between paediatric and adult care’ and ‘Feeling safe vs. entering the unknown’, together with three preferred initiatives: 1) Joint consultations, 2) Educational events and 3) Online support/website. In general, we found that some parents were extremely worried about the transfer, while others were not. Our results suggest that transfer initiatives targeting parents should focus on knowledge, expectations, relationships and goals in accordance with the social-ecological model of adolescent and young adult readiness to transition (SMART).
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