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3 themes described what involvement in treatment decision making meant to patients with diabetes

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V Entwistle

Dr V Entwistle, Universities of Dundee & St Andrews, Dundee, Scotland, UK; v.a.entwistle{at}dundee.ac.uk

QUESTION

What does being involved in treatment decision making mean to patients with diabetes?

DESIGN

Qualitative study.

SETTING

4 multipractitioner outpatient diabetes clinics in Scotland, UK.

PARTICIPANTS

7 adults with type 1 diabetes and 11 with type 2 diabetes (age range 20–79 y, 56% men).

METHODS

Patients participated in semi-structured interviews ⩽1 week after an outpatient visit. Interviews addressed patients’ experiences with, and feelings about, involvement in treatment decision making. Interviews were audiotaped and transcribed, and data were analysed thematically.

MAIN FINDINGS

All patients had an understanding of involvement, and most comments focused on decision making about treatment for which health professionals were the gate keepers. Issues that patients associated with involvement in treatment decision making were grouped into 3 broad, overlapping themes. (1) Ethos and feel of healthcare encounters. Patients associated several professional behaviours with involvement, including being friendly and welcoming, “taking an active interest” in and showing respect for patients and their perspectives, facilitating patient contributions to discussions, and not being unduly judgmental or blaming (eg, “just giving me some flexibility and understanding about my lifestyle and my personal life”). Patients were less likely to feel involved when such behaviours were absent. Some found it easier to open up to a familiar and trusted practitioner (carer continuity), although 1 patient described a positive consultation experience with a locum physician who also had diabetes.

(2) Communication about health problems. Patients often felt more involved in decision making when practitioners elicited, listened empathically to, and took seriously patients’ views about symptoms and treatment and how diabetes affected their lives. One patient, unable to leave home because of increasing problems with treatment-related diarrhoea, felt frustrated and humiliated when her experience was dismissed. Patients also wanted understandable explanations about their diabetes and potential problems, although too much complex information could result in feeling overwhelmed. Several patients indicated that they received or retained relatively little information about diabetes when first diagnosed.

(3) Communication about treatments. Patients often associated being given understandable explanations for proposed treatments with involvement and were generally accepting of practitioner recommendations, although some negotiated treatments other than those first suggested. All but 1 patient felt that it was important to be given a say in their treatment and for practitioners to listen to, understand, and respond to their suggestions and priorities. One patient emphasised “being given choices, you know, things being explained properly to you and then the question being put to you, well how do you feel about this, or how will this fit into your lifestyle.” However, several suggested that having input was of limited importance if they did not have relevant information or could not have a “meaningful discussion” about options.

CONCLUSION

In patients with diabetes, 3 themes described issues associated with feeling involved in treatment decision making: ethos and feel of healthcare encounters, communication about health problems, and communication about treatments.

ABSTRACTED FROM

Entwistle V, Prior M, Skea ZC, et al. Involvement in treatment decision-making: its meaning to people with diabetes and implications for conceptualisation. Soc Sci Med 2008;66:362–75.

Commentary

Involvement in healthcare decision making is generally understood as the provision of specific information about treatment options and encouragement of patients to make choices about those options. Both are increasingly upheld as important measures of quality in the delivery of healthcare. The qualitative study by Entwistle et al calls into question the adequacy of such a view of patients’ contributions to decisions, supporting a relational and contextual conceptualisation of patient involvement. The finding that clinicians' attempts to enhance patient involvement cannot be separated from other dimensions of healthcare encounters is of particular interest to nurses.

Thorne et al have shown the complex and evolving nature of decision making throughout the diabetes disease trajectory,1 including the increasingly sophisticated and nuanced nature of treatment-related decision making that patients develop, most of which unfolds outside of healthcare encounters. The study by Entwistle et al supports these findings and sheds light on ways that healthcare encounters might enhance or undermine patient confidence and competence in decision making. The authors conclude that health professionals should “pay more attention to a broader set of ethical considerations relating to respect for patients as persons” in efforts to enhance patient involvement in decision making. Implications for nursing practice include asking nurses to pay attention to the extent to which patients’ expertise is recognised and their perspectives heard, the ways in which the organisation and delivery of care can undermine healthcare relationships, and the possibility that the perspectives of some patients may be particularly vulnerable to dismissal and silencing.

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Footnotes

  • Source of funding: no external funding.

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