The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Abstract

Background: Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience. Methods: Qualitative research looking at patient-and family-centred care (PFCC) on two care pathways (stroke and hip fracture) was conducted in England and Wales. A realist approach combined with participatory action research was used to account for the complexity of organisational context and power relations. Multiple methods were used, including documentary analysis, participatory steering groups with staff and patient representatives, observations of the care pathways (n = 7), staff and patient and relative focus groups (n = 8), and hospital staff, patient and PFCC staff interviews (n = 47). Results: Findings highlight multiple factors that support and hinder good patient experiences. Within individual care, paternalistic values and a lack of shared decision-making and patient-centred care still exist. Supportive interdisciplinary teamwork is needed to address issues of hierarchy, power and authority amongst staff and managers. At the organisational level, key issues of waiting times, patient flow, organisational resources and timely discharge affect staff's time and capacity to deliver care. In addition, macro contextual factors, such as finance, policy, targets and measures, set particular limits for improvement projects. Conclusions: Given this context, improving patient experience needs to go well beyond small-scale projects at the micro and meso level to incorporate a more critical understanding of systems, the wider organisational context and how power operates at multiple levels to enable and constrain action. In order to more meaningfully understand and address the factors that can help or hinder activities to improve patient experiences, PFCC frameworks and methods need to account for how power inequities operate and require the adoption of more participatory coproduced and empowering approaches to involve patients, relatives, carers and staff in improving complex healthcare environments.

Understanding Young People and Their Care Providers’ Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis

“…Findings of this study support previous qualitative and quantitative research conducted with healthcare providers, parents and patients (both adult and paediatric), which found that the hierarchical medical model of care is still dominant when providing care [17,21]. Participants in this study highlighted the lack of shared decision making led them to have negative experiences of care and agency [17,21]. Parents and healthcare providers both described the need to respect the expertise they each bring to the care of the child and young person with complex healthcare needs.…”

“…In an integrated system, these needs are met through the coordinated and collaborative working of all providers, irrespective of sectorial, organisational or geographic boundaries." [15, p. 5] CHQHHS's definition incorporates person-centredness as a central component of integrated care, recognising that a person and their immediate family and/or carers must be empowered and engaged within the healthcare system and their own care coordination [15][16][17].…”

Measuring Health Care Experiences that Matter to Indigenous People in Australia with Cancer: Identifying Critical Gaps in Existing Tools

“…Calls to ensure cultural safety in the health system are embedded in Australian national health policy infrastructure (34), which also advocates robust patient experience measurement processes (35). The failure to measure patient experiences from a cultural safety perspective and the impact of the setting in which cancer care is experienced, mean that super cial information may be gathered, rather than information that may be at the core of an Indigenous person's (dis)engagement with treatment (4,5). As cultural safety is determined by the patient and family (32,34,35), the development of indicators which come from a cultural safety perspective is likely to contribute to greater relevance of patient experience measures for Indigenous people.…”

“…Patient-reported experiences are routinely used as a key indicator of the quality of health care, along with patient-reported outcome measures, safety measures and clinical outcomes (1)(2)(3). However, there are concerns that many mechanisms used to collect patient experience data produce large amounts of super cial data, while missing deeper, more nuanced information that is meaningful to the patient (4,5), and that insu cient attention is paid to whether the information is used to inform health care provision (6,7). In addition, gaps have been identi ed in understanding the experiences of underserved groups, whose interactions with health services may be markedly different to general patient populations (8).…”

Physiotherapists’ perceptions of challenges facing evidence-based practice and the importance of environmental empowerment in fall prevention in the municipality – a qualitative study

“…Last but not least, physiotherapists’ success in implementing fall-prevention programmes and interventions depend on empowering leadership and a working culture, along with time and multifaceted professional competence [ 38 ]. Furthermore, research indicate that clinicians’ experience might contribute to strategic priorities to improve patient experience and place patients at the centre of healthcare and decision-making [ 39 ].…”