Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research.

Purpose: International health and social care policy increasingly draws on stakeholder experiences and opinions. The distinctions between various approaches to researching "insider" perspectives are contentious. This article explores features (e.g. philosophy, ethics, and power dynamics) of qualitative approaches and public and patient involvement (PPI) in communication disorder research and explicates the blurred boundaries between them.Method: We use two case studies involving PPI contributors with aphasia - an Irish mixed methodologies study and a Danish qualitative study - to illustrate PPI in research and thus demonstrate how researchers can bridge the gap between theoretical considerations and research implementationResult: There are important distinctions between PPI in research and qualitative approaches (e.g. origins, roles, and reimbursement) and many blurred boundaries (e.g. inclusion, openness to mutual learning and "insider" perspectives). A key difference is that PPI contributors take an active role at project level and more flexibility in roles is required in PPI research. These flexible and varied roles reflect the shared decision-making powers between lay and professional researchers.Conclusion: PPI can add innovation to qualitative and mixed methods communication disorder research as illustrated in both case studies. However, researchers wishing to include PPI must embrace and respond to the evolving and flexible nature of PPI relationships and processes. Flexibility, negotiation and continuous reflection on methodological approaches, power dynamics, roles and co-created knowledge will impact and transform the field of research in communication disorders.

COVID-19: Public and patient involvement, now more than ever.

The research community is responding with speed to the COVID-19 pandemic, with rapid response mechanisms to fund research, shortened application turnaround times, and expedited research ethics processes. Public and patient involvement (PPI) is under pressure in this rapid response research, where it is easy for researchers and funders to dismiss PPI as non-essential, an added extra, a "nice to have".  In this open letter, we, researchers and PPI contributors, argue that PPI is important, now more than ever. The pandemic is impacting everyone in society, with normal rules of engagement discarded. The solution to overcoming this virus will come from many different sources and many changes will emerge to healthcare delivery and to how we live our lives. It is essential that the research to find solutions is shaped by all who will be impacted: the public and the patient must be central contributors and their voice must be hear.

Interdisciplinary team working in the Irish primary healthcare system: Analysis of 'invisible' bottom up innovations using Normalisation Process Theory.

Interdisciplinary team working in primary care is a key policy goal across healthcare jurisdictions. The National Primary Care Strategy (2001) in Ireland is a top down policy for primary healthcare reform, which prioritised the development and implementation of interdisciplinary Primary Care Teams. The number of Primary Care Teams and features of their clinical meetings have been the key metric in Ireland for appraising progress with the implementation of the strategy. However, these have been challenging to organise in practice. The aim of this paper is to analyse empirical evidence of other forms of interdisciplinary working in Irish primary care, using Normalisation Process Theory. Drawing on data from an on-line survey (71 GPs and 498 other healthcare professionals), and an interview study (37 participants; 8 GPs, 7 practice managers/admin support and 22 health care professionals) in three of the four Health Service Executive (HSE) regions in Ireland, we analyse the nature of these other forms of interdisciplinary working and describe innovations for service delivery that have been developed 'from the ground up' as a result. We examine levers and barriers to the implementation of these bottom up innovations. The levers are that these innovations make sense to professionals, are based on local needs and focus on preventive patient-centred care. They are driven forward by small groups of professionals from different backgrounds with complementary skills. The evaluations show positive impacts of the innovative services for patients, however, many have ceased to operate due to negative effects of the recent economic recession on the Irish healthcare system. These flexible and localised innovations were shaped in part by the reforms set out in the 2001 Primary Care Strategy but also represent unintended effects of that policy because they are the result of bottom up interdisciplinary working that occurs alongside, or instead of, Primary Care Team clinical meetings. Furthermore, as they not captured by existing metrics, the interdisciplinary work and resultant services have been 'invisible' to senior management and policy makers. If appropriately acknowledged and supported, they can shape primary care in the future.

'Participation is integral': understanding the levers and barriers to the implementation of community participation in primary healthcare: a qualitative study using normalisation process theory.

BACKGROUND: Many international health policies recognise the World Health Organization's (2008) vision that communities should be involved in shaping primary healthcare services. However, researchers continue to debate definitions, models, and operational challenges to community participation. Furthermore, there has been no use of implementation theory to study how community participation is introduced and embedded in primary healthcare in order to generate insights and transferrable lessons for making this so. Using Normalisation Process Theory (NPT) as a conceptual framework, this qualitative study was designed to explore the levers and barriers to the implementation of community participation in primary healthcare as a routine way of working. METHODS: We conducted two qualitative studies based on a national Initiative designed to support community participation in primary care in Ireland. We had a combined multi-stakeholder purposeful sample (n = 72), utilising documentary evidence (study 1), semi-structured interviews (studies 1 and 2) and focus groups (study 2). Data generation and analysis were informed by Participatory Learning and Action (PLA) Research Methodology and NPT. RESULTS: For many stakeholders, community participation in primary healthcare was a new way of working. Stakeholders did not always have a clear, shared understanding of the aims, objectives and benefits of this way of working and getting involved in a specific project sometimes provided this clarity. Drivers/champions, and strong working partnerships, were considered integral to its initiation and implementation. Participants emphasised the benefits of funding, organisational support, training and networking to enact relevant activities. Health-promoting activities and healthcare consultation/information events were generally successful, but community representation on interdisciplinary Primary Care Teams proved more challenging. Overall, participants were broadly positive about the impacts of community participation, but were concerned about the scope to sustain the work without the 'protected' space and resources that the national Initiative afforded. CONCLUSIONS: Despite the success of specific activities undertaken as part of a community process in Irish primary healthcare, the likelihood of this becoming a routine way of working in Ireland is low. Analysing the learning from this process using NPT provides theoretically informed recommendations that are transferrable to other settings and can be used to prospectively design and formatively evaluate community participation processes.

Implementing community participation via interdisciplinary teams in primary care: An Irish case study in practice.

BACKGROUND: Community participation in primary care is enshrined in international and Irish health policy. However, there is a lack of evidence about how stakeholders work collectively to implement community participation within interdisciplinary teams; community perspectives are rarely captured, and a theoretical underpinning for implementation of community participation in primary care is absent. OBJECTIVE: To conduct a theoretically informed, multiperspectival empirical analysis of the implementation of community participation via primary care teams (PCTs) in Ireland. METHODS/DESIGN/PARTICIPANTS: Participatory learning and action (PLA) focus groups and interviews were held with 39 participants across four case study sites within a nationally funded programme designed to enable disadvantaged communities to participate in primary care. Normalization process theory (NPT) informed data generation and analysis of how diverse stakeholder groups worked together to implement community participation via PCTs. RESULTS: The various stakeholders had a shared understanding of the value of community participation on PCTs. Motivations to get involved in this work varied, but were strong overall. Challenges to enacting community participation on PCTs included problems with the functioning of PCTs and a lack of clarity and confidence in the role of community representatives at PCT meetings. Informal appraisals were positive, but formal appraisal was limited. DISCUSSION AND CONCLUSION: The implementation and sustainability of community participation on PCTs in Ireland will be limited unless (i) the functioning of PCTs is strong, (ii) there is increased confidence and clarity on community representatives' roles among all health-care professionals, and (iii) more sophisticated methods for formal appraisal are used.

Exploring levers and barriers to accessing primary care for marginalised groups and identifying their priorities for primary care provision: a participatory learning and action research study.

BACKGROUND: The involvement of patients and the public in healthcare has grown significantly in recent decades and is documented in health policy documents internationally. Many benefits of involving these groups in primary care planning have been reported. However, these benefits are rarely felt by those considered marginalised in society and they are often excluded from participating in the process of planning primary care. It has been recommended to employ suitable approaches, such as co-operative and participatory initiatives, to enable marginalised groups to highlight their priorities for care. METHODS: This Participatory Learning and Action (PLA) research study involved 21 members of various marginalised groups who contributed their views about access to primary care. Using a series of PLA techniques for data generation and co-analysis, we explored barriers and facilitators to primary healthcare access from the perspective of migrants, Irish Travellers, homeless people, drug users, sex workers and people living in deprivation, and identified their priorities for action with regard to primary care provision. RESULTS: Four overarching themes were identified: the home environment, the effects of the 'two-tier' healthcare system on engagement, healthcare encounters, and the complex health needs of many in those groups. The study demonstrates that there are many complicated personal and structural barriers to accessing primary healthcare for marginalised groups. There were shared and differential experiences across the groups. Participants also expressed shared priorities for action in the planning and running of primary care services. CONCLUSIONS: Members of marginalised groups have shared priorities for action to improve their access to primary care. If steps are taken to address these, there is scope to impact on more than one marginalised group and to address the existing health inequities.

A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory.

BACKGROUND: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine - normalized - way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization - definition, enrolment, enactment and appraisal. METHOD: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. FINDINGS: Twenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co-governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. CONCLUSION: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co-governance and dissemination of research processes and findings.

Evidence-based training of health professionals to inform families about disability.

OBJECTIVE: The development, delivery and evaluation of a training programme for medical and nursing professionals on best practice for informing families of their child's disability. DESIGN: A 2 h training course on 'Best practice guidelines for informing families of their child's disability' was designed based on the findings of a nationally representative study of parents and professionals. The classroom-based course comprised a presentation of the research and recommendations of the best practice guidelines; a DVD film of parent stories and professional advice; group discussion; and a half-hour input from a parent of two children with disabilities. An anonymous, pretraining and post-training questionnaire was administered to measure knowledge and confidence levels, using scales adapted from a study by Ferguson et al (2006). PARTICIPANTS: 235 participants, including medical students, nursing students, and junior hospital doctors (JHDs). OUTCOME MEASURES: Knowledge of best practice and confidence in communicating diagnosis of disability. RESULTS: Significant improvements in knowledge (time 1 mean (M)=14.31, SD=2.961; time 2 M=18.17, SD=3.068) and confidence (time 1 M=20.87, SD=5.333; time 2 M=12.43, SD=3.803) following training were found. In addition, a significant interaction between time and cohort (medical students, nurses and JHDs) was found for knowledge. Further examination suggested medical students' knowledge was developing to the extent that post-training, their scores were higher than nurses, but not significantly different to JHDs. CONCLUSIONS: The increase in reported levels of knowledge and confidence following training in best practice for informing families of their child's disability indicates the potential for providing communication skills training in this area.

Patterns of leisure participation among adolescents with a mild intellectual disability.

The aim of this study was to investigate the leisure and recreational activities of a cohort of 34 students attending a full-time special school as reported by the students and their parents. Leisure activities which were mostly solitary and passive in nature were identified as those being most commonly engaged in. Barriers to leisure were also identified, with 'access to' and 'location of' the leisure facilities being barriers perceived by both students and parents. Data on aspects of leisure use, e.g. enjoyment, participation, assistance required, socialization and choice, were also collected.

Sibshops: an evaluation of an interagency model.

The study evaluates the effectiveness of a sibling support programme (Sibshops) involving three disability agencies in Cork, Ireland. Qualitative and quantitative data were obtained using semi-structured interviews and the Piers-Harris Children's Self-Concept Scale with siblings, together with parent feedback. Results from the Piers-Harris showed that there was no significant increase in sibling self-esteem following attendance at the Sibshops. However, the interviews revealed that the majority of siblings enjoyed and benefited from the Sibshops. Parents reported satisfaction with the Sibshops and felt that their children had benefited. Reflections on the experience of working on an interagency basis are outlined. Recommendations are made regarding further research and development in the organization of Sibshops and in staffing and staff training.