Patient empowerment, what does it mean for adults in the advanced stages of a life-limiting illness: A systematic review using critical interpretive synthesis

Abstract

Background:Patient empowerment, defined as ‘a process through which people gain greater control over decisions and actions affecting their health’ (World Health Organization) is a key theme within global health and social care strategies. The benefits of incorporating empowerment strategies in care are well documented, but little is known about their application or impact for patients with advanced, life-limiting illness(s).Aim:To identify and synthesise the international evidence on patient empowerment for adults with advanced, life-limiting illness(s).Design:Systematic review (PROSPERO no. 46113) with critical interpretive synthesis methodology.Data sources:Five databases (MEDLINE, Embase, CINHAL, PsycINFO and Cochrane) were searched from inception to March 2018. Grey literature and reference list/citation searches of included papers were undertaken. Inclusion criteria: empirical research involving patients with advanced life-limiting illness including descriptions of, or references to, patient empowerment within the study results.Results:In all, 13 papers met inclusion criteria. Two qualitative studies explored patient empowerment as a study objective. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. The following themes were identified from the interpretive synthesis: self-identity, personalised knowledge in theory and practice, negotiating personal and healthcare relationships, acknowledgement of terminal illness, and navigating continued losses.Conclusion:There are features of empowerment, for patients with advanced life-limiting illness distinct to those of other patient groups. Greater efforts should be made to progress the empowerment of patients nearing the end of their lives. We propose that the identified themes may provide a useful starting point to guide the assessment of existing or planned services and inform future research.

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

“…Thus, in providing the best possible care for dying patients, 58 we should not lose sight of the interests and entitlement of relatives and patients. 57 Given the strong global policy prioritization of patient and carer empowerment in all aspects of end-of-life care, 59 it is interesting that this theme did not feature prominently in these empirical studies, a finding that merits further investigation in future research.…”

Patient perspectives on how to optimise benefits from a breathlessness service for people with COPD

“…The latter pose a special challenge for breathlessness services whose raison d'être is to equip patients with the knowledge, confidence and motivation to become consummate in self-management. Much attention has been paid in the literature to promoting a transition for patients who are initially less willing to take an active role in their healthcare, variously described in terms of self-efficacy 25 , activation 26 and empowerment 27 . Strategies aimed at boosting these requisites have been collectively subsumed under the umbrella term of 'coaching' and have been found effective for improving not only self-management but also reducing hospital admissions and even improving health-related quality of life 28 .…”

The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem

“…digitally provided information can enable those with the right capacities (Wagner 2018) to ask more relevant and accurate questions, so that they feel more involved in planning for their health (van Roessel et al 2017). This is the case particularly for those living with long-term conditions, who increasingly rely on digital health interventions, such as those within the 'Internet of Healthy Things' network, to maintain independence (Wakefield et al 2018). Furthermore, mHealth tools can be designed better, and in ways that can avoid or minimize some of the issues analysed above, for example by providing more flexible ways to tailor recommendations to users' specific needs.…”