Critical Realist Perspective Research Articles

Road to referral success in COPD: Enhancing patient engagement through dedicated conversations about pulmonary rehabilitation programs

Research questionFrom the perspectives of healthcare professionals (HCPs) and people with chronic obstructive pulmonary disease (COPD) known to tertiary care, what influences successful referrals to a pulmonary rehabilitation program (PRP)? MethodsThis cross-sectional qualitative study was informed by a critical realist perspective. We purposively sampled people with COPD and HCPs who deliver COPD care and used semi-structured interviews and focus groups to explore determinants of a successful referral to a PRP. Interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis. ResultsData were available on 38 HCPs and 15 people with COPD. We generated three core themes pertaining to successful referrals. The first theme was that HCPs should be mindful of how professional responsibilities (such as their personal value and interest in a PRP, their degree of understanding of PRPs, and the organisational culture the PRPs are embedded within) shape decision-making during a therapeutic interaction. The second theme, there's more to me than my COPD, characterised psychological perceptions that shape a person's readiness to engage in a PRP. The third theme, communication is a two-way street that requires careful navigation, characterised the interpersonal dynamic between HCP and patient, and how dedicated conversations about PRPs can encourage successful referrals. ConclusionTherapeutic interactions that include dedicated conversations about PRPs can foster successful referrals among people with COPD. During these interactions, HCPs should take the time to understand and carefully unpack psychological perceptions whilst imparting value, interest and enthusiasm for PRPs. Doing so can shape patient engagement toward referral success.

Barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology, a descriptive qualitative study.

Initiation of palliative care early in the disease trajectory is beneficial for patients with a life-limiting disease. However, palliative care is still introduced rather late or not at all. Therefore, this study aims to explore barriers and facilitators to early initiation of palliative care as perceived by nurses working on pneumology and nephrology. A descriptive interview-based study was conducted from a critical realist perspective until data sufficiency was reached. Fifteen nurses presented and discussed a patient for whom palliative care was initiated too late. Template analysis was conducted to develop themes and subthemes. Five key themes were extracted: (1) communication, (2) fear, (3) personal beliefs about life and death, (4) ambiguity in terminology and (5) workload and time pressure. Barriers related to poor interdisciplinary communication were therapeutic obstinance, hierarchy, unawareness of the patient's wishes and fear of saying something inappropriate. Other barriers were patients' religious beliefs which often hindered the use of sedatives or morphine and led to discomfort and time restraints. A palliative support team in hospital and advance care planning (ACP) were enablers for early palliative care. This study started from a negative experience, leading to identification of a lot of barriers and only a few facilitators. The limited sample size and the restriction to two wards within one single hospital limit the diversity of perspectives and the generalisability of the findings. More attention is needed for ACP and interdisciplinary communication. Palliative care, including ACP, and interdisciplinary communication should be included in the basic curricula of all healthcare professional courses. Further research is needed to explore barriers and facilitators to early initiation of palliative care in other healthcare settings and patient populations. This is crucial in order to develop and implement sustainable interventions for specific groups of patients.

“I thought that crying was weakness”: a thematic analysis of emotional experience in an online self-harm forum

Objective This study aimed to investigate the emotional experiences and beliefs of individuals who engage in self-harm by analyzing data from an online self-harm forum. Emphasis was placed on understanding how these individuals describe and evaluate their emotions (emotion beliefs) and the role these beliefs play in their emotion regulation and self-harming behaviors. Method A total of 119 posts from a self-harm discussion board on the forum were analyzed. Thematic analysis, following a critical realist perspective, was employed to identify and interpret recurring patterns in how posters articulated their emotion beliefs. Results Four themes were created during analysis: "My emotions are too much," "Self-harm as control or controlled by self-harm," "Suppression is better than expression," and "Self-harm helps me escape my emotional pain." Posters described experiencing overwhelming, uncontrollable, and unacceptable emotions, resulting in a desire to suppress or escape them through self-harm. Conclusions Individuals struggling with self-harm hold negative beliefs about their emotions, which intensify emotional experiences and contribute to feelings of shame and guilt. The findings highlight the necessity of interventions targeting these negative emotion-related beliefs to foster alternative emotional regulation strategies and reduce reliance on self-harm, as well as the importance of increased education on these emotional beliefs for those who support them, in order to reduce stigma. Furthermore, the study emphasizes the potential of online forums in gaining valuable insights into sensitive behaviors.

A Critical Realist Model for Organizational Sociology

Current discussions surrounding organizational sociology theories indicate a state of stagnation. This paper aims to invigorate theoretical innovation by drawing on contemporary social theories, particularly employing a critical realist perspective. Focused on addressing the theoretical convergence between organizational and collective action sociologies, as identified by Friedberg, the paper reinterprets his concept of organized collective action through the critical realist collective subjectivities theory, as proposed by Vandenberghe. The objective is to generate an original Critical Realist Model for Organizational Sociology. This initiative stems from critical realism’s critique of flat ontologies and epistemologies that tend to conflate different objects of reality. The proposed model takes the form of a trialectic generative sequence, highlighting driven objects configured in a specific ontological situation as the necessary, but not sufficient, condition for the emergence of organizations. This sequence includes (a) time-space co-presence and the embodiment process; (b) symbolic community sharing and the identification process; and (c) power dynamics and the processes of representation, delegation, and subordination. This model positions collective organized action as a fundamental intermediary concept for understanding organizations and collective action within a realistic social theory. It indirectly contributes to addressing the broader debate on agency and structure.

It Takes Two to Tango: The Technocracy-populism Nexus in Italy and the EU from a Critical-realist Perspective

ABSTRACT The nexus between technocracy and populism in Italy can be better understood from a long-term perspective. Adopting a critical-realist approach to the explanation of political change, it is possible to identify the main contextual factors that favoured, from the early 1990s, the rise of these two alternative yet compatible logics of politics, which can be conceived as both causes and symptoms of the fatigue of representative democracy. This also allows (i) a better understanding of the entanglement of populism and technocracy after the global crisis of 2008, and (ii) the conceptualisation of the position of the European Union (EU) as a catalyst of these processes within a multi-level spatial nexus.

Semiotics of ICU Physicians' Views on End-of-life Care and Quality of Dying in a Critical Care Setting: A Qualitative Study.

While intensive care unit (ICU) mortality rates in India are higher when compared to countries with more resources, fewer patients with clinically futile conditions are subjected to limitation of life-sustaining treatments or given access to palliative care. Although a few surveys and audits have been conducted exploring this phenomenon, the qualitative perspectives of ICU physicians regarding end-of-life care (EOLC) and the quality of dying are yet to be explored. There are 22 eligible consultant-level ICU physicians working in multidisciplinary ICUs were purposively recruited and interviewed. The study data was analyzed using reflexive thematic analysis (RTA) with a critical realist perspective, and the study findings were interpreted using the lens of the semiotic theory that facilitated the development of themes. About four themes were generated. Intensive care unit physicians perceived the quality of dying as respecting patients' and families' choices, fulfilling their needs, providing continued care beyond death, and ensuring family satisfaction. To achieve this, the EOLC process must encompass timely decision-making, communication, treatment guidelines, visitation rights, and trust-building. The contextual challenges were legal concerns, decision-making complexities, cost-related issues, and managing expectations. To improve care, ICU physicians suggested amplifying patient and family voices, building therapeutic relationships, mitigating conflicts, enhancing palliative care services, and training ICU providers in EOLC. Effective management of critically ill patients with life-limiting illnesses in ICUs requires a holistic approach that considers the complex interplay between the EOLC process, its desired outcome, the quality of dying, care context, and the process of meaning-making by ICU physicians. Iyer S, Sonawane RN, Shah J, Salins N. Semiotics of ICU Physicians' Views on End-of-life Care and Quality of Dying in a Critical Care Setting: A Qualitative Study. Indian J Crit Care Med 2024;28(5):424-435.

"Will anybody listen?" parents' views on childhood asthma care: a qualitative study.

Asthma is the most common chronic disease in children, resulting in considerable morbidity and health care utilisation, especially in geographical areas with high deprivation. Parents play a pivotal role in children's asthma management. To explore the views of parents whose children have asthma, regarding barriers and facilitators to receiving adequate asthma care. A qualitative study conducted in an urban, multi-ethnic setting with high socioeconomic deprivation and paediatric asthma related hospital admissions. The study used a pragmatic approach underpinned by a perspective of critical realism. Parents of children with asthma were recruited through purposive and convenience sampling and data collected through semi-structured interviews. Transcripts were analysed using thematic analysis, facilitated by NVivo software. 10 parents participated in nine interviews. Six themes were identified relating to: (1) the establishment of a new life dynamic following a diagnosis of asthma; (2) the turbulent and drawn-out process of asthma diagnosis; (3) the roles and expectations of the partnership established between parents and healthcare services; (4) the importance of schools in asthma management; (5) sources and access to relevant information; and (6) the importance of social support networks. Parents frequently felt unsupported and misunderstood, particularly during the diagnostic process. Unmet parental educational and emotional needs, particularly around the time of diagnosis were identified as a key barrier to adequate asthma management. Deeper understanding of gaps in support can instruct asthma care delivery and inform co-produced interventions, thus improving asthma outcomes in children.

"Too young to have this kind of diagnosis": A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis.

Colorectal cancer (CRC) incidence is rising among adults under the age of 50 (early- or young-onset CRC). This population is more likely to have advanced-stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision-making during a diagnosis of young-onset CRC. Semi-structured interviews were conducted with 17 participants with young-onset CRC diagnosed in 2021-2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7months (range 1-13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis. Five themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision-making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision-making, utilising personal resources to access timely care. Their decisions were shaped by stage-of-life considerations, including employment and caring for a young family, with the COVID-19 pandemic adding "…a whole other layer of complexity" to the process. Younger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID-19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.

Gaining prescription rights: a qualitative survey mapping the views of UK counselling and clinical psychologists

ABSTRACT Objective The British Psychological Society (BPS) has been exploring whether its practitioner members are interested in gaining prescription rights for psychiatric drugs and what such a privilege might look like. This qualitative study aimed to survey the views of UK-based, qualified counselling and clinical psychologists. Method: Qualitative data was collected from 82 participants via an online survey (37 counselling and 45 clinical psychologists). Along with the survey items, the last question asked participants to select one of three answers (yes/no/unsure) in relation to whether they supported prescription rights for psychologists. The qualitative data was analysed using thematic analysis, from a critical realist perspective, to develop 3 themes. Results Theme 1 explores how psychologists grapple with their professional identity within structures dominated by the medical model of distress, and constructions of the prescription rights debate as a crossroads for both discipline and profession. Theme 2 explores participants’ assumptions about psychiatric drugs as they seem to serve as a springboard to their views on prescription rights. Theme 3 examines the belief that gaining prescription rights will result in increased status and power for psychologists and what might be gained or lost as a result. Regarding the final question: 18 participants answered yes; 42 no; and 22 were unsure. Conclusion We advocate for increased criticality in how UK psychology continues to consider this issue. We caution against an optionality approach that might risk obscuring wider implications for psychology beyond the preferences of individual practitioners.

Perceptions of social media harms and potential management strategies: vaping case study

BackgroundThe social media landscape is now ubiquitous in people’s everyday lives. It is a space where culture, politics, economics and sociological and public health discourses occur. There is mounting evidence that e-cigarette products are being promoted and advertised on social media, a media platform particularly popular with young people. Our research aimed to understand industry professionals’ perceptions of social media harms and potential management strategies using vaping as a case study.MethodsA critical realist perspective guided reflexive thematic analysis of the qualitative in depth, semi structured interviews. Data collection occurred in January and February 2023 with 13 participants working in the areas of public health, digital media, law, governance, tobacco control and advocacy.ResultsTwo superordinate themes emerged from the data: (1) Fathoming a complex system (social media) that contained the subordinate themes of Traversing Boundaries (crossing borders, crossing sectors) and Ungovernable (global and local landscapes, vested interests, self-regulation and opacity). (2) Addressing complexity (social media)– that contained the subordinate themes of Strengthening Institutions (global to local, policy and legislation, individuals and organisations); Defanging Industry (responsibility and transparency, moderation and algorithms, complaints); and Engaging Citizens (raising awareness, framing messaging).ConclusionsThere was consensus among participants that e-cigarette related social media content can be harmful and government action is urgently needed. There was an identified need for the development of government led national-level regulatory frameworks, with government led appropriate legislation; identification of an organisation or organisations with suitable levels of regulatory power and resources to monitor, enforce and penalise noncompliant social media companies; accompanied by increased community awareness raising of harmful social media content and improved digital literacy.

A Longitudinal Qualitative Study of Barriers and Facilitators of Breastfeeding in Women on Opioid Maintenance Therapy.

To understand how barriers and facilitators interact over time to support or disrupt breastfeeding among women on opioid maintenance therapy for opioid use disorder. Breastfeeding has additional benefits for newborns with prenatal opioid exposure. Up to 80% of women on opioid maintenance therapy plan to breastfeed, but many do not beyond the first 7 to 10days. A qualitative, longitudinal design was used. Semi-structured interviews occurred during the third trimester of pregnancy and again between 1 and 6weeks postpartum. Thematic analysis was conducted using the Breastfeeding in a Life Course Context model as a framework. The design and methods were informed by a post-positivist, critical realist perspective. Thirteen participants were enrolled, and 19 interviews were completed. Five themes were identified. It Will Work Out was the primary theme that describes participants' sense of self-efficacy, stemming from their experiences of managing addiction recovery. Women considered breastfeeding to support their own health and that of their newborn while in recovery, summarized by Being Healthy. Making the choice to breastfeed, represented by Weighing the Options, was influenced by their perinatal health care providers. During the Sensitive Period, challenges could overwhelm their self-efficacy. Of 9 women, 4 were still breastfeeding when interviewed postpartum, exemplified by Moving On. Participants' self-efficacy and motivation to be healthy played a significant role in managing breastfeeding challenges over time. Nursing interventions must empower women's self-efficacy to help them achieve their breastfeeding goals.

Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation

BackgroundMeaningful community engagement (CE) in HIV prevention research is crucial for successful and ethically robust study implementation. We conducted a qualitative study to understand the current CE practices in HIV prevention research and to identify expressed and implicit reasons behind translational gaps highlighted by communities and researchers.MethodsFor this exploratory qualitative study, we recruited a purposive sample of participants from Indian government-recognised key populations such as men who have sex with men, transgender women, people who inject drugs and female sex workers; general population adults and adolescents/youth; and researchers. We conducted 13 virtual focus groups (n = 86) between July and October 2021. Data were explored from a critical realist perspective and framing analysis (i.e., examining how the participants framed the narratives).ResultsParticipants reported that study communities, especially those from key populations, were primarily involved in data collection, but not necessarily with optimal training. Involvement of communities before the start of the study (e.g., obtaining feedback on the study’s purpose/design) or once the study is completed (e.g., sharing of findings) were highlighted as priorities for meaningful engagement. Participants suggested meaningful CE in all stages of the study: (1) before the study—to get inputs in finalising the study design, drafting comprehensible informed consent forms and culturally-appropriate data collection tools, and deciding on appropriate monetary compensation; (2) during the study—adequate training of community field research staff; and (3) after the study—sharing the draft findings to get community inputs, and involving communities in advocacy activities towards converting evidence into action, policy or programs. Timely and transparent communications with communities were explicitly stated as critical for gaining and maintaining trust. Mutual respect, reciprocity (e.g., appropriate monetary compensation) and robust community feedback mechanisms were considered critical for meaningful CE. ConclusionsThe findings highlighted the translational gaps and priority areas for capacity building to strengthen CE in HIV prevention research. It is not only important to engage communities at various stages of research but to understand that trust, dignity, respect, and reciprocity are fundamentally preferred ways of meaningful community engagement.

Social cognition and the origin of concepts in Durkheim's sociology of knowledge

AbstractThis paper re‐examines a key feature of Emile Durkheim's sociology of knowledge from a critical realist perspective. It is argued that Durkheim's attempt to establish a social basis for the categories in The Elementary Forms of Religious Life should be understood along ontological rather than epistemological lines. This brings to light new problems with the argument which, however, can be brought fruitfully into contact with the more recent social psychological literature on collective intentionality. This yields insights into future lines of inquiry into social cognition and theories of human conceptualizing capacities.

Healthy prison cultures: factors influencing male prisoners' engagement in exercise and subsequent healthy behaviours.

The purpose of this paper is to identify the factors which influence male prisoners' motivation for, and engagement in, exercise and subsequent healthy behaviours. The first authors conducted 20 semi-structured interviews with male prisoners inside an English medium-security male prison. Interviews were recorded and transcribed, themes were identified using thematic analysis and a critical realist perspective applied to understand objective processes behind prisoners' experiences and shared meanings of exercise and engaging in healthy behaviours in prison. Emerging themes indicate that in the context of healthy behaviours male prisoners aspired to a masculine ideal that was characterised by a culture of either adaptive behaviours, or maladaptive behaviours. The former fostered an adaptive exercise culture which promoted psychological well-being through an autonomy-supportive environment, consequently internalising motivation and minimising perceived barriers to engaging in healthy behaviours. Conversely, a culture of maladaptive behaviours fostered a maladaptive exercise culture which led to negative psychological well-being, underpinned by external forms of motivation which emphasised barriers to engaging in healthy behaviours. Findings emphasise the need for prisons to promote an internal perceived locus of control for male prisoners when engaging in healthy behaviours. The authors adopt a rare interdisciplinary approach combining a psychological theory of motivation and criminological perspectives of prison culture to understand how best to minimise the impact of prisons as an institution on the psychological well-being of male prisoners.

Sports and mobile imperatives in the lives of rural youths

This paper explores the mobility processes of rural youths in relation to sports. The mobility imperative has its basis in the fact that rural youths must be mobile to gain access to the resources they need to shape their lives and create their own identities. The mobility imperative is analysed as a constellation of interrelated processes in which material inequalities, symbolic hierarchies and entanglements between bodies and places interact in a process that constitutes the mobility of young rural dwellers. This study is based on research conducted in a rural community in Sweden. We conducted interviews with eight individuals and one focus group. The analysis, inspired by biographical interviews framed according to a critical realist perspective, focused on the interviewees’ subjective experiences and how broader social structures affected these experiences. The results of the analysis indicate that mobility is an inevitable necessity for sports participation during childhood. The rural sport mobility imperative is an interaction of related processes, such as a limited supply of sports clubs and facilities, limited access to sports activities that are highly valued in contemporary youth culture and an affective conflict in establishing a connection to urban places for sport interactions.

Health and social care professionals' views and experiences of supporting parents with serious mental illness.

A significant number of individuals with a serious mental illness (SMI) such as schizophrenia or bipolar disorder are also parents of dependent children. Despite the risk of adverse psychological, behavioral, and social outcomes their needs often go unmet. To better understand the needs of parents with SMI and their children it is necessary to gain insight into the perspectives and experiences of the professionals in adult mental health and children's services who work with them, and who, ultimately, are best placed to meet those needs. To explore the views and experiences of health and social care professionals working with parents with SMI to understand the needs of, and their role supporting, parents with SMI and their children. Semi-structured interviews were conducted with seventeen professionals from six NHS and Local Authority settings in England, UK. Participants were included if they were employed in adult mental health or local authority children's services and had experience of working with parents with SMI. Sampling was purposive, including a wide range of professions in these settings. Interview data were analyzed using template analysis taking a critical realist perspective. Three top-level themes were generated: (1) Impact of parental SMI on the child, (2) Accessing support from services, (3) Role of professionals working with parents with SMI. Themes highlight diverse, wide-ranging effects of SMI on the child and a reluctance from parents to seek help due to stigma and fear. Available services are reported to be inaccessible and unacceptable to parents with SMI and practitioners experience conflict when balancing the needs of the parent and child. A whole-family approach facilitated by improved communication between services is advocated. Participants believed that parents with SMI experience complex parenting challenges over and above other parents, describing a largely detrimental impact on the child. Support services were deemed inadequate, and participants stressed the need to develop specialist services tailored toward the needs of parents with SMI and their children. Although participants endorsed joined up working across health and social care settings to facilitate a whole family approach, they required greater service knowledge and training in parental SMI.

Understanding the process of building institutional trust among digital payment users through national cybersecurity commitment trustworthiness cues: a critical realist perspective

PurposeThe current body of empirical research regarding the impact of trust in the cybersecurity commitment of institutions on digital payment usage has focused solely on a macro-level analysis, overlooking the intricate dynamics between institutions' cybersecurity commitments and the trust levels of digital payment users. In light of this limitation, this study aims to offer a more comprehensive understanding of this complex relationship.Design/methodology/approachA case study was conducted on digital payment users in India through the critical realist lens. To gather data, interviews and focus group discussions were conducted with digital payment users from various regions of the country.FindingsThe citizen-centric outcomes of the national cybersecurity commitment (performance and responsiveness) are the most prominent and impactful trust indicators. These outcomes play a crucial role in shaping digital payment users' perception and trust in the cybersecurity commitment of public institutions. Individuals' value positions also influence trust judgments, as it is essential to recognize the value tensions that may arise due to security implementation and their congruence with citizens' values.Research limitations/implicationsThe findings of this study have significant implications for policymakers. They are potentially an artifact of the security and perception of digital payment users and the cultural uniqueness of digital payment users in India.Originality/valueThe study proposes a holistic understanding of the relationship between institutions' cybersecurity commitments and the trust levels of digital payment users. It offers a qualitative evaluation of how digital payment users perceive and construe efficient information security management implemented by public institutions.

Preconditions influencing the development of post-secondary training programs in universities for individuals with intellectual disabilities

ABSTRACT Background Research on post-secondary training for individuals with intellectual disabilities has generally focused on programs, with little consideration of the structures and mechanisms that give rise to them. This article adopts a critical realist perspective to comparatively analyse and theorise about the contextual structures contributing to the introduction of post-secondary training programs in universities for individuals with intellectual disabilities. Method Six stages in critical realist explanatory research were followed. They include (1) description, (2) analytical resolution, (3) abduction/theoretical redescription, (4) retroduction, (5) comparison between different theories and abstractions, and (6) concretisation and contextualisation. Results Historical, socio-political, and educational policy structures and mechanisms, indicated three program typologies: program as niche, as a generalisable prototype, and as an evolutionary response to evolving conditions. Conclusions By developing explanations about preconditions, the study draws out nuanced sub-types occurring within a single university-based program, theorises on trajectories for success, and lays the groundwork for future empirical and conceptual development.

Unpacking the impacts of programmatic approach to assessment system in a medical programme using critical realist perspectives

ABSTRACT Traditional, positivist assessment approaches generally fail to capture the nuances of learners’ clinical competence in medical programmes. This has led to the implementation of an alternate assessment approach known as ‘programmatic assessment’, which embraces subjectivity of human judgement in holistic decision making in clinical settings. Faculty and staff have found the introduction of programmatic assessment to be challenging because it is a major, complex change to the traditional way of carrying out assessment. Extending our previous work, where we used critical realism to explore students’ experiences of programmatic assessment, we here unpack the underlying conditions and mechanisms triggered by programmatic assessment’s implementation. We applied Bhaskar’s concept of ontological stratification, retroduction and Archer’s theoretical accounts of morphogenesis/stasis to theorize the interplay between the socio-cultural entities that constrain and enable desired changes in assessment practices, and those that condition students and staff to accept or reject the new ‘non-traditional’ assessment processes.

'I felt part of the solution'. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain.

To elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research. reflexive thematic analysis from a critical realist perspective. Online interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively. The relationship between patient advocates and the organisations they help is conceptualised as 'an unequal partnership'. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions). People with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development.