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Both authors have been involved as lay members in research and other activities for a number of years, ensuring they represent the views of members of the public. This chapter identifies what is, and what is not, patient and public involvement as well as highlighting the importance of involving members of the public in all aspects of the research process. Best practice is explored as identified in the UK Standards for Public Involvement 2019 and the UK Policy Framework for Health and Social Care Research 2020. The implications of the Mental Capacity Act and its wording on research matters are also considered. Case studies have been incorporated to highlight the impact of involving patients and members of the public in all aspects of the research process. These include the lessons learnt by researchers and lay members of the team. The aspiration is to move towards more collaboration between members of the public and researchers; therefore, we discuss co-production of research or community-based participatory research (CBPR). We highlight the need for a better partnership between researchers and members of the public. The benefits of this are explored along with the consequences for all involved.

Academic researchers are increasingly required, and rightly so, to demonstrate the impact of their work beyond the gates of the university. This has led to an increasing focus, especially in response to funded calls, on developing research partnerships that cross disciplines, sectors and borders to help address our grand societal challenges. The purpose of this paper is to set out learning from the work of the organisation the Centre for Ageing Research and Development in Ireland (CARDI) and reflections on how to bring forward effective research partnerships involving users.

This paper is based on reflections and learning from the organisation CARDI which delivered a highly successful programme of interdisciplinary, cross-sectoral and cross-country research partnerships in both rural and urban areas between 2007 and 2015, across the island of Ireland.

Research partnerships that wish to involve users require time, commitment, support, understanding and a willingness to change and be challenged. This paper highlights that there are methodological, philosophical, moral, economic and of course, practical aspects to be considered.

This reflective paper is based on a case study from the island of Ireland during the period 2007–2015 working in the area of ageing and older people.

The author emphasises that for research partnerships involving users to be successful, they need to not only consider the most effective research methods but also focus on the overarching purpose of the work and adopt an ethos and practice that maximises each partner’s knowledge and expertise to their full potential.

This reflective paper focused on the characteristics associated with partnership success, i.e. communication style, values, philosophy and practice and argues that establishing effective and inclusive partnerships requires time, the appropriate framework and reviewing the process on an ongoing basis.

The issue of user involvement in research partnerships requires much more consideration. Researchers, government, funders, businesses and service providers are increasingly recognising the benefits of “user” involvement to help design programmes and services that are most effective. Nowhere is this more important than in planning and delivering services, policy and programmes for our ageing population.

This study aims to investigate the prevalence and characteristics of dysphagia among adults with intellectual disabilities (ID) referred to speech and language therapy for swallow assessment, providing information on the demographic characteristics, referral trends, co-occurring health conditions and reasons for referrals highlighting the complex health-care needs of this population.

This study used a standardised patient data extraction method over a six-month period involving 74 adults with ID referred to speech and language therapy for swallow assessment.

This study revealed a high prevalence of dysphagia among adults with ID referred to speech and language therapy for swallow assessment. Increasing age and severity of ID were associated with an increased likelihood of swallowing difficulties. Co-occurring health conditions such as mobility difficulties, epilepsy and gastrointestinal conditions were prevalent, suggesting that adults with ID and swallowing difficulties are often living with complex health conditions. Choking incidents and hospital admissions were primary reasons for referral.

This study stresses the pressing need for strategies to mitigate risks associated with choking incidents and hospital admission among this vulnerable population. Possible limitations include a reliance on referral and the focus being on a single service over a short period which may limit generalisation to the wider ID population.

This study emphasises the need to understand each person’s unique profile of health needs and the value of a specialised speech and language therapy service.

The importance of increasing awareness among caregivers and medical experts is highlighted.

The findings underscore the importance of tailored assessment, caregiver involvement and heightened interdisciplinary awareness to effectively manage dysphagia in individuals with ID.

The purpose of this paper is to present an examination of the development of adult safeguarding policy from the perspectives of both policymakers and those who have sought to influence policy, to empower individuals with a learning disability to have a say in how policies, that influence their life and impact their right to independence, are developed.

This paper is based on a project which was led by a UK-wide interdisciplinary and multi-agency team, which included the central involvement of peer researchers who had lived experience of learning disability. It was based on a participatory disability research design.

Factors which enabled or restrained individuals with a learning disability, and their supporting organisations, from getting their voice heard in policy development, are identified.

This paper builds on policy theory and research, making recommendations for policy makers, disabled people and their supporting organisations as to how adult safeguarding policy, could be more effectively informed and influenced.

This study aims to evaluate the quality of a speech and language therapy (SLT) swallow service provided to adults with intellectual disability (ID) by exploring the process and outcome factors; to explore the process of what is done to and for the patient including identifying dysphagia, choking and pneumonia risk, typical interventions and management; examine clinical outcomes; and explore the relationship of outcomes with risk factors, satisfaction with the service and the impact of the service on the number of choking incidents and admissions to acute hospital with swallow concerns.

There were three specific work packages: (1) collecting and scrutinising patient data from the clinical record for adults with ID referred to the SLT swallow service over a six-month period. The researcher created aims, defined the limits to achieve the aims, designed a standardised data collection form, set out where data was in the clinical record, piloted, set limits for collection and trained reviewers; (2) gathering experience and satisfaction surveys from patients, caregivers and referrers over the six-month study period; and (3) monitoring choking adverse incident reports and hospital admission with swallow concerns for the whole ID population.

Choking and hospital admission were the main reasons for referral, and pneumonia risk significantly predicted dysphagia impairment. The research highlighted common dysphagia risk factors, interventions and recommendations for this population. The SLT swallow service is a quality service that is highly valued by patients, their caregivers and referrers. The service achieves significant clinical improvements, helps identify dysphagia and provides management to reduce associated risks.

This study found common dysphagia risk factors, interventions and recommendations; it also found that the therapy outcome measures/Royal College of Speech and Language Therapy online outcome tool was a meaningful outcome measure, and that pneumonia risk significantly predicted dysphagia impairment, all of which could inform the identified dysphagia research priorities for this population.

Naming usual care in treatment and recommendations could help ensure a fair service and could help form quality indicators. People with ID, their caregivers and staff generated valuable ideas for improvement, and further involvement work could create a logic model for the service. Other future work could explore the use of screening tools, increase multidisciplinary team working, improve access to instrumental assessments, raise awareness of swallowing and promote important oral health and medication reviews. By using this information to shape quality improvement work and policies, one can work toward addressing high health-related inequalities and preventable deaths associated with dysphagia in this vulnerable population.

It may be useful to raise awareness that adults with ID age earlier and that one should not exclude them from older people’s services because of an age threshold, often set higher than their life expectancy. This study highlighted a possible inequality of access issue for adults with ID who do not have direct care or day care staff. There is a need to increase access to awareness training so caregivers and general practitioners can recognise swallow difficulties and know how to make a referral for a swallow assessment.

Overall, the evaluation of the swallow service to adults with ID suggests that SLT have a quality service for adults with ID that is highly valued and provides significant clinical improvements. By building on these strengths, SLT could extend the reach, influence and impact of their services to help those adults with ID who have emerging swallow difficulties or who do not access the service.

“Co-production” is a process in health and social care wherein service users and practitioners work in partnership. Recovery colleges (RCs) are educational establishments offering mental health education; a cornerstone feature is that courses are designed and delivered in parity by both mental health practitioners and “peers” – people with lived experience of mental illness. This paper aims to consider, through the identification of key themes, whether co-production within RCs is operating successfully.

The paper is a systematic review of qualitative literature. Relevant concept groups were systematically searched using three bibliographic databases: Medline, Social Care Online and Scopus. Articles were quality appraised and then synthesised through inductive thematic analysis and emergent trends identified.

Synthesis identified three key themes relating to the impact of co-production in RCs: practitioner attitudes, power dynamics between practitioners and service users, and RCs’ relationships with their host organisations. As a result of RC engagement, traditional practitioner/patient hierarchies were found to be eroding. Practitioners felt they were more person-centred. RCs can model good co-productive practices to their host organisations. The review concluded, with some caveats, that RC co-production was of high fidelity.

RC research is growing, but the body of evidence remains relatively small. Most of what exists examine the impact of RCs on individuals’ overall recovery and mental health; there is a limited empirical investigation into whether their flagship feature of parity between peers and practitioners is genuine.

This study explores the motivations for sharing personal information and self-disclosure by mentally ill people in public and private Facebook groups. The purpose of the self-disclosure comparison between public and private groups is to understand how mentally ill people use different kinds of online communication channels in order to advance their goals and needs concerning their illness.

The study was carried out using questionnaires distributed in Facebook groups for people with mental illnesses. A total of 123 full and valid questionnaires were received. Statistical analysis was performed on the data.

Findings revealed that there are no significant differences between public and private groups concerning motivations for self-disclosure and that both types of groups create a safe and supportive place for mentally ill people. However, findings suggest that participants in public groups tend to display higher social involvement than those who participate in private groups.

This is a path breaking study on the entire subject of discourse of people with mental illnesses in private Facebook groups and its importance is derived from this. The study clarified and emphasized the importance of the sense of belonging to a community. Moreover, findings encourage people with mental illnesses to make use of social media channels to meet their social and personal needs.