An Exploration of Stakeholders’ Perceptions of the Perceived Rhetoric–reality Gap between the Theory and Practice of Individual and Collective Involvement in Relation to Patients with Long Term Conditions and their Carers within Primary Care

Abstract

Involving patients and carers in decisions relating to their healthcare and in strategic decisions to influence health service provision, is a statutory requirement of healthcare providers, supported by NHS policy. However, evidence from the literature and the researcher’s personal experience suggests a gap exists between the theory and policy intentions regarding individual and collective involvement and their practical implementation. This research explores the nature and extent of that perceived rhetoric–reality gap for patients with long term conditions, and their carers, within primary care, by analysing the perceptions of a range of stakeholders across four Clinical Commisioning Groups in England.
Reviewing relevant policy and literature indicated: i) little evidence of the extent to which key involvement policies were informed by existing theory and relevant research; ii) poorly- documented reasons why policy-makers promote or exclude particular evidence-based involvement models, frameworks and approaches; iii) minimal reference to how individual and collective involvement interrelate between and across micro, meso and macro levels.
A mixed methods approach was applied, utilising questionnaires and semi-structured interviews informed by the normative conceptual framework, to gather data regarding the extent to which stakeholders perceived that the views of patients with long term conditions and their carers were involved in decisions relating to their healthcare and relating to planning healthcare services. The questionnaire was completed by 99 respondents, and 46 people participated in the subsequent semi-structured interviews. Quantitative data were subject to exploratory data analysis using descriptive statistics; thematic analysis was adopted to analyse the qualitative data.
The findings included: i) involvement appears to mean different things to different people, thus confirming the range of perceptions and definitions documented within existing literature; this may partly contribute to: ii) participants’ responses indicated considerable difference between patients’ and carers’ perceptions and those of healthcare professionals regarding how well involvement is achieved, suggesting a rhetoric–reality gap exists.
Qualitative data analysis generated three key themes, perceived to be important contributory factors underpinning that gap and influential for the effectiveness of involvement. These relate to the need i) for effective communication of relevant, accessible information that meets people’s requirements; ii) to appreciate the potential impact of personal enablers of, and barriers to, involvement, including individuals’ ability, motivation, expectations and triggers; and iii) for organisations to commit to providing effective systems and processes to support involvement, including adequate time, focused training and robust monitoring and evaluation of the impact involvement has on service improvement. The complex and multi-dimensional nature of involvement results in some overlap between the key themes and their sub-themes.
Existing models and frameworks appear to place insufficient explicit and comprehensive emphasis on the key elements perceived by the participants to be important for individual and collective involvement for those with LTCs in primary care, which may be contributing to the continuation of the rhetoric-reality gap. Informed by the three key themes and sub-themes, a revised normative framework for involvement is proposed, for testing across a larger sample and different healthcare settings. This framework also identifies the need for differentiated approaches at micro, meso and macro levels, to achieve an appropriate level of involvement aligned to patients’ and carers’ needs and preferences rather than to those of healthcare professionals, organisations and policy-makers.
In addition to the development of a proposed revised normative framework for involvement for further testing, this thesis contributes to academic knowledge and policy and practice by establishing new knowledge that suggests stakeholders perceive involving patients and carers in decisions about the patient’s healthcare to be more important than involving them in decisions about planning healthcare services. It also extends existing knowledge by providing further evidence that a rhetoric-reality gap exists between the theory and policy-driven intentions regarding individual and collective involvement and their practical implementation in primary care, and, for some patients and carers, that gap is perceived to be considerable.

Date of Award	26 Jul 2022
Original language	English
Awarding Institution	University of Portsmouth
Supervisor	Mark Xu (Supervisor), Barbara Maria Savage (Supervisor) & Fiona Margaret Horton (Supervisor)