The complexity of shaping self‐management in daily practice

Abstract

Background and contextMany countries are giving patients a more active role in health care, on both the individual and collective level. This study focuses on one aspect of the participation agenda on the individual level: self‐management. The study explores self‐management in practice, including the implications of the difficulties encountered.ObjectiveTo gain insight into the complexity of self‐management practice. This is crucial for developing both self‐management interventions and the participation policy agenda.MethodsQualitative semi‐structured interviews with experts (n=6) and patients with a chronic condition (n=20).ResultsIn terms of level of involvement and type of activity, shaping self‐management in practice depends on personal and social dynamics, patients’ ideas of the good life and their interactions with care professionals. Clashes can arise when patients and professionals hold differing ideas, based on different values, about the level and type of patient involvement.DiscussionThe discussion on self‐management should account for the fact that how we define self‐management is very much a normative issue. It depends on the norms and values of patients, professionals and underlying health‐care policies. Differing ideas present professionals with ethical dilemmas which they should reflect on. However, professional reflection alone is not enough to deal with these dilemmas. The participation agenda needs far wider ranging reflection on how participation relates to other values in health care.

Community nurses' self‐management support in older adults: A qualitative study on views, dilemmas and strategies

“…This study shows that community nurses experience dilemmas in self‐management support when older adults, in their view, exhibit either considerable or little self‐direction or self‐reliance. This is in line with the literature about tensions that can arise within self‐management support when patients and healthcare professionals have different expectations about the preferred level and type of patient involvement (van de Bovenkamp & Dwarswaard, ; Doekhie et al, ; Dwarswaard & van de Bovenkamp, ; Kendall et al, ; Lawn et al, ; Redman, ).…”

“…The way in which self‐management is shaped in daily practice is partly determined by patients’ skills, their social network and the stage of their disease (van de Bovenkamp & Dwarswaard, ). Therefore, self‐management might become a major challenge for those older adults who want or need to live independently at home for as long as possible but who are confronted with social losses and deterioration of their health.…”

“…Nevertheless, literature shows that self-management support sometimes causes tensions between patients and professionals due to different views and expectations of the preferred level and type of patient involvement (van de Bovenkamp & Dwarswaard, 2017;Doekhie, Strating, Buljac-Samardzic, van de Bovenkamp, & Paauwe, 2018). These differences in views and expectations are based on patient, professional and healthcare policy norms and values regarding the responsibility for 'good health', and the extent in which patients are free to make their own choices and decisions (Dwarswaard & van de Bovenkamp, 2015;Kendall et al, 2011;Lawn, McMillan, & Pulvirenti, 2011;Redman, 2005).…”

The different perspectives of patients, informal caregivers and professionals on patient involvement in primary care teams. A qualitative study

“…In the last two decades, health care has moved from a paternalistic professional‐centred model towards a patient‐centred care model that tailors care to patients’ needs, values and experiences . Patient involvement, defined as “enabling patients to take an active role in deciding about and planning their care,” is part of patient‐centred care and increasingly pursued in many countries . The fast‐growing literature on patient involvement in the decision‐making process predominantly focuses on exploring factors that influence patient behaviour and active involvement …”

Trust in older persons: A quantitative analysis of alignment in triads of older persons, informal carers and home care nurses

“…Rather, successful self-management depends on a person's collaborative relationships with both informal and formal care providers (Dwarswaard, Bakker, Staa, & Boeije, 2016;van Hooft et al, 2015;Whitehead, Jacob, Towell, Abu-qamar, & Cole-Heath, 2018). A growing stream of literature focuses on triads of care recipient (older person), informal and formal care providers and how the quality of their relationships influences self-management (Adams & Gardiner, 2005;Bovenkamp & Dwarswaard, 2017;Hengelaar et al, 2016;Lindahl, Lidén, & Lindblad, 2011;Wiechula et al, 2016). Selfmanagement is, for example, conceptualised as 'mutual participation between patients and caregivers' and 'the conjunction with family, community and healthcare professionals' (Richard & Shea, 2011).…”