Table 3 Theory and equality and diversity evidence
Patient Safety Theory Theory of planned behaviour [44, 48] Health belief model, status characteristics theory, role theory, safety culture, bio-medical model in decision-making [44] Picker's 'Eight Dimensions of Patient-Centred Care, patient activation measures and patient empowerment [46] General theory findings Clarifying theoretical models underlying the mechanism of patent engagement can help motivate successful interventions [46] Lack of a theoretical basis with no consideration of the intended mechanisms of interventions (how they will work), or where they will affect the ‘causal chain’ (where they will work) to improve safety [45] | Equality and Diversity [B and E stands for where reviews reported equality and diversity specifically as a barrier and enabler to PPI] Inconclusive evidence with respect to age, gender or education to claim these characteristics was a consistent factor predicting patients’ willingness or ability to engage with their own safety [44, B/E] The synthesis suggested that age is probably a confounding factor. ‘Commonly people who were able were willing’. Important barriers affecting ability are illness, which is often aged related, and ability to communicate in the native language. Findings suggest one underlying cause of inability to be involved actively, may be some age-related illnesses, rather than age itself [44][B] There is also some evidence that female, younger, higher educated patients and those who experienced errors or intensive episodes of care are more likely to have a positive attitude toward involvement in error-prevention strategies, but these patterns are inconsistent [48, E] Younger age of patient is a facilitator [E] and older age [B], patients’ primary language and cultural tendency to rely on physicians [46][B] Participants [outcomes] reported were limited and primarily English-speaking, literate adults and elderly patients. Targeting elderly patients to improve medication safety is seen as a reasonable strategy, as they are a group where comorbidity/poly-pharmacy are common. A need to evaluate the ability of other vulnerable groups: those with communication difficulties/low health literacy/understanding of how to be involved [45] |
Healthcare & Education Transformative learning used in combination with user involvement [57] A five-step concept analysis of service user involvement in health and social care education is identified. The ‘ladder of involvement’ describes stages of ‘no involvement’; ‘limited involvement’; ‘growing involvement’; ‘collaboration’; ‘partnership’ [51] A ‘partnership’ approach is discussed, but not defined conceptually [54]. Concepts of expert patients and patient voice, collaboration and partnership and an attempt to build a framework of attribute for involving patients in education were discussed [55] General theory findings There is terminological confusion with concepts such as ‘collaboration’ or ‘user involvement’ or talking about involvement at different levels. These concepts need further analysis and confusion can lead to conflict with stakeholders [52] Use of a framework with headings: Who? How? What? Where? is identified as a useful starting point to stimulate more careful consideration about the involvement of patients in medical education. This framework is seen as a useful starting point, but other studies indicate other issues need to be considered including: gaining informed consent and systems of support for involved consumers [54] | A number of reviews raised concerns about the representativeness of consumers [49, ED], [BE] A need to include people currently using services and in more acute stages of mental illness as there were concerns that service users were not representative of the wider experience of service use [50] Procedures regarding the process/preparation for involving users in the classroom are needed to promote partnership, involvement and equality [57, B] A conference was described as a means to consult a range of consumer groups to inform social work training. Community groups were asked to nominate representatives from diverse religious and ethnic groups to discuss how future doctors could best serve diverse communities [54] There was concern by lecturers that someone who was mentally ill would not be able to teach large groups of students and if they were, then they could not be considered representative of the core group of users, thus indicating a kind of ‘catch 22′ situation [54, B] Concerns were described about: wider involvement from all staff; strategies to avoid stigmatisation/discrimination that are not always effective; issues of inequality of power between service users and educationalists; attempts to redress power differentials that could be impacted by cultural barriers to its success [53] In medical education, some issues described on equality and diversity included students visiting patients living in deprived areas to raise awareness of disease and links to social deprivation and the need to ensure adequate representation of different patient groups in education [55] Attributes patients may need to possess to be involved, such as excellent interpersonal/communication skills, may exclude other groups such as elderly people, people belonging to ethnic minority groups and people for whom English is not their first language [55] |
Healthcare Policy & Guideline Development A typology of public engagement mechanisms [59] General theory finding A considerable overlap exists between concepts and methods of public involvement, e.g., consultation through to partnership [61] | One study reported on various community projects targeting disadvantaged groups (youth, isolated families, ethnic minorities) to increase local access to care services [61] Criteria used for patient selection (i.e., representation, demographics) in different studies varied [60]. There were challenges to gathering a well-balanced group that represents different age, socioeconomic and ethnic groups and which consists of patients in different stages of the disease [60, B] One of the main challenges is the recruitment of patients or patient representatives who are able to contribute significantly to the discussion among experts. At the same time, they should be “legitimised” to represent the broad spectrum of patients with different socioeconomic and health characteristics and attitudes toward healthcare [60, B] Representation of patients and members of the public [59, B]. Professionals’ resistance to patients’ participation [59, B] Patients have difficulty following/assessing medical/technical jargon. Several authors pointed out that as a consequence the patients gave little input. This could lead to high selection standards for patient candidates (e.g., for a NICE clinical development group). If, however, only highly educated patient representatives are recruited, how representative is the patient input? [58, B] |
Healthcare Generally and Involvement Gauvin’s conceptual framework 2010 to map the concepts related to patient and public involvement in health technology assessment (HTA) [63] Rodgers’ evolutionary method of analysis for concept development to re-examine the concept of partnership [66] 7 rationales for the involvement of people affected by cancer in research, policy and planning, and practice included: models for patient experience, personal empowerment, the autonomous patient, marketing, democracy, community and policy directives. These were seen to reflect ideologies of individualism and collectivism [67] 13 PPI principles were viewed theoretically as a principle taxonomy for those looking to work together [69] Conceptual or theoretical underpinning was scarce. Two studies used a theoretical argument. One argued for collective self-advocacy in balancing power differentials; the other drew upon social constructionism and post-modernism to challenge the professional narrative in mental health services. Most studies relied upon policy initiatives as their primary framework [71] General theory findings Conceptual/terminological confusion and challenges were identified to do with the term patient engagement [65] | Reference to equality in the context of sharing power in partnerships [66], reference to being ‘inclusive’ made under key principles for involvement [69, BE]. Approaches for working with communities included: reaching out to relevant communities, not expecting them to come to you [69, BE], training in the area of equal opportunities/equality and diversity [68, E], the need for a broad representation of individuals to be involved [65, 67], including those traditionally excluded [67], with a variety of health related experiences to ensure a responsive approach to their needs [65], it is also noted it is not conclusive whether socio-demographic factors influence the extent to which patients wish to be involved in treatment decision-making [67] Communication—Language, in terms of health literacy and especially with the use of technical terms, was a barrier to patient involvement [65, B]. Personal characteristics of patients like ethnicity, age and disease might lead to discrimination and therefore lower opportunities for involvement [65, B] |
Health & Social Care Research 37 sources were identified describing frameworks/conceptualisations of Patient Service User Engagement (PSUE) converged into a synthesised framework comprising 3 broad phases of research (preparatory, execution and translational phases) [78] General theory finding Attempts were made to distinguish theoretical boundaries between service user involvement in research and other types of involvement, e.g., in own care/the delivery of care for a relative or in educational interventions. Current conceptualisations of service user involvement were seen as limited in terms of a hierarchy/continuum and not reflecting the fluid nature of involvement. A further conceptual weakness was there not being much known about what is ‘research data’ in a study and what is ‘service user involvement’ [73] | Issues of representation [72], cultural sensitivity [72][E] Patient Service User Research (PSUR) should consist of individuals or communities for whom the outcomes are of interest [E]. Many studies stated that, from the very beginning, researchers should see Patient and Service User Researchers (PSURs) as equal partners and consider them as a reliable component of the team rather than simply an additional variable or complication [E]; involvement of authority figures in the community was also helpful for buy-in [E]. Accessibility of dissemination approach to individuals with different abilities and preferences should consider language, terminology according to the target population and purpose of the publication [78] [B]. A review on (PSUR), noted several concerns, including inequality in the interactions between PSURs themselves [78, B] A few studies discussed how PPI increased community group membership and led to greater intercultural understanding by all parties involved in the research and created links to seldom-heard communities [41]. More generally working with the community seemed to provide some opportunities for working with a broader diversity of patient groups [41, E] Interviewers and employees who had been users all received training. Where applicable, this training was similar to that received by employees who had not been users of mental health services [74, E] Some studies showed the involvement of service users allowed researchers to have privileged access to a particular population or community groups; working with community leaders, patient networks or voluntary organisations were good approaches to engaging with seldom heard groups [73] It is a fundamental but often overlooked fact that service users have diverse perspectives, experiences, expectations and interests. Which service users are involved needs to be considered in relation to the purpose, aims and context of any proposed research. Such decisions should be explored, where possible with service users themselves [73, BE] No references were found regarding involving marginalised and minority groups in PPI in surgical research or on the use of PPI to integrate the opinions of marginalised and minority groups. Some studies discussed inclusion of feedback from study participants. This is not the same as active collaborative involvement where patients become partners in the research process [76] A few reviews also reported PPI contributor characteristics [80] and characteristics of those who influenced participation decisions in research [75] A common concern of researchers and patients was that patient engagement may become tokenistic (a false appearance of inclusiveness), resulting in a devaluated patients’ input [75, B] Disregard for cultural beliefs and language [B], use of bilingual researchers [BE, ED], explore culturally appropriate solutions [77, E] |
Community engagement/participation in health Three synthesis ‘products’ on community engagement were identified: (i) theoretical meta-narratives indicating how community engagement is conceptualised; (ii) theory of change models that operationalised the theoretical meta-narratives; (iii) an overarching conceptual framework built on the findings from (i) and (ii). Two clear perspectives or ‘meta narratives’ emerged: a health services or ‘utilitarian’ perspective and a ‘social justice’ perspective Three hypothesised models were developed from this framework: classical or traditional, peer- or lay-delivered interventions [83] The review categorised types of community participation based on the continuum proposed by Popay et al.’s (2006) conceptual model. Theories such as Community Coalition Action Theory, Procedural Justice Theory, Community Capacity Framework, Kumpfer's model of leadership and partnership functioning, framework on social participation or citizenship and quality of care, people relationship-building framework, Communities of Care Model, Community-orientated Primary Care Model and Communities that Care (CTC) Model were commonly found. The concept of power was discussed with Bordieu’s (1986) theory of power discussed at great length. Overall, the review findings highlight that research in this topic area lacks robust study designs and theoretical underpinnings, in line with previous systematic reviews [81] Peer models were discussed in the light of 2 theoretical traditions: human-centred design (HCD) and action research [84] Key theory findings Peer models appeared to be successful when conducted within a theoretical model like HCD or action research that supports ongoing commitment to collaboration, co-learning, mutual leadership and shared decision-making as peers are more likely to feel valued when considered equal members of the project team [84] | In studies where patients developed their own care strategies, some of these strategies were considered effective as they enhanced care experiences or equitably improved outcomes and had greater impact in more socio-economically marginalised communities [82, E] Having diverse peer community participation in the planning and implementation of community-level surveys strengthened the communities’ commitment to using their results [82] Identified studies reporting that when patient groups assisted in recruitment and retention of research participants among marginalised populations, they produced greater recruitment numbers and retention [82][E] Equality and diversity issues were also identified as barriers to involvement including a racial divide leading to dissatisfaction amongst mainly white researchers who were being paid and predominantly African-American community members who were not. Gender inequality leading to skills being devalued in male-dominant settings. The socio-economic status of a community such as poor education, unemployment and poverty, affected rates of community participation. Communities often worked in partnerships with statutory or health authorities where the latter held power; therefore, they perceived participation as tokenistic [81, B] Peer community member participation in the planning and implementation of community-level surveys in 12 diverse communities in the state of Washington strengthened the communities’ commitment to using their results in the planning of environmental change strategies. Potential-related issues of power, privilege, discrimination, financial inequities, accessibility communication, distrust and cynicism can also contribute to peer partnership difficulties [84] |