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Family-Centeredness as Resource and Complication in Outpatient Care with Weak Adherence, Using Adolescent Diabetes Care as a Case in Point

Kapitel i bok
Författare Anders Herlitz
Christian Munthe
Publicerad i What about the family? : practices of responsibility in care / edited by Marian A. Verkerk, Hilde Lindemann, and Janice McLaughlin.
Sidor 137-146
ISBN 9780190624880
Förlag Oxford University Press
Förlagsort Oxford
Publiceringsår 2019
Publicerad vid Institutionen för filosofi, lingvistik och vetenskapsteori
Sidor 137-146
Språk en
Länkar https://gup.ub.gu.se/file/207716
Ämnesord adherence, bioethics, ethics of care, family, healthcare ethics, medical ethics, person centered care, patient centered care, shared decision making, teenagers, diabetes, adolescence
Ämneskategorier Pediatrik, Diabetologi, Endokrinologi och diabetes, Omvårdnad, Medicinsk etik, Etik, Praktisk filosofi


Care for adolescent patients with diabetes type 1 is a recognized challenge, with known adherence problems in a context where home-/self-care and continuous vital need of day-to-day life-style adjustment. The recommended care regimen often gives rise to conflicts with broader personal and social needs and desires, and in case of weak adherence negative spirals of undermined self-confidence and/or emotional denial further deteriorating the situation may result. The need to adjust care to the specific situation is accepted within the pediatric diabetes professional community, accepting a commitment to person centeredness involving alliance with the family as a critical part. Yet, families can be involved in different ways and the issue of how to involve families and what ethical tensions that may actualize is largely unexplored. Standard models of person- and family-centeredness tell us little about how to involve family members in care similar to that of diabetes. We have elsewhere proposed an alternative approach more attuned to such circumstances, aiming at empowering patients' long-term capacities to manage their condition domestically. This “counselling, self-care, adherence (CSA) approach” offers a look at the role that family can play to improve these types of care. We will illustrate how family members can assist in the care of teenagers with diabetes, but that there are also serious risks actualized by such involvement. In particular, we will highlight ethical complications that arise when the role of a family member is changed from “parent” to “care provider.”

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