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This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years.

Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants’ feedback.

The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities).

Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers’ situation and utilising the varied skills family carers can bring to research and practise.

This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset.

People with intellectual disability die prematurely and from avoidable causes. Innovative solutions and proactive strategies have been limited in addressing this disparity. This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality.

This study used population health management principles to conceptualise a risk stratification tool for avoidable deaths in people with intellectual disability. A review of the literature examined the existing evidence of causes of death in people with intellectual disability. A qualitative methodology using focused groups of specialist clinicians was used to understand the factors that contributed towards avoidable deaths in people with intellectual disability. Delphi groups were used for consensus on the variables for inclusion in the risk stratification tool (Decision Support Tool for Physical Health).

A pilot of the Decision Support Tool for Physical Health within specialist intellectual disability service demonstrated effective utility and acceptability in clinical practice. The tool has also demonstrated good face and construct validity. A further study is currently being completed to examine concurrent and predictive validity of the tool.

To the best of the authors’ knowledge, this is the only study that has used a systematic approach to designing a risk stratification tool for identifying premature mortality in people with intellectual disability. The Decision Support Tool for Physical Health in clinical practice aims to guide clinical responses and prioritise those identified as at higher risk of avoidable deaths.

This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.

This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.

This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.

Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.

This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.

This preliminary study aims to examine the use of a co-designed immersive virtual reality intervention programme in improving access to health care for people with intellectual disability.

A co-production approach was used to design a virtual reality intervention in collaboration with people with intellectual disability, their families and carers. A mixed-method single sample pre-test-post-test design examined using a virtual reality intervention simulating health-care environments to improve access of attending health-care appointments. Qualitative feedback was used to understand participants’ experience and opinions of using the digital technology.

The study found that the intervention did help people access health-care appointment and reduced their fear. Improvements were also found in quality-of-life post intervention. Positive feedback was provided from participants on using digital technologies indicating the novelty of the approach and potential further applications.

To the best of the authors’ knowledge, this is the first study which has used virtual reality to support people with intellectual disability access health care.

This paper aims to describe and evaluate the impact of a compassion-focused therapy (CFT) group for adults with intellectual disabilities (ID).

People with ID are commonly subjected to stigmatising experiences that can contribute to feelings of shame. CFT targets shame and self-criticism by helping people to cultivate self-compassion. There is evidence to suggest that CFT can be meaningfully adapted for people with ID. Qualitative and quantitative data were collected using a mixed-methods design, aiming to gain a rich evaluation of the CFT group. Eight adults with ID were referred by their local community psychology team. An 11-week group protocol was based on materials from previous research. The protocol included the development of a “compassion box”, aiming to make CFT concepts more concrete and tangible. Questionnaires measuring psychological distress, self-compassion and negative social comparisons were completed pre- and post-group. Feedback from participants and carers were collated and facilitators’ observations were recorded.

Questionnaire findings were mixed, and some participants found the measures difficult to understand. Participants’ qualitative feedback and facilitators’ observations suggested that the group created feelings of safety and connectedness whilst facilitating engagement and action with shame and self-criticism. Several participants highlighted the usefulness of the ‘”compassion box”, although some barriers were noted.

This paper provides a rich description of how group CFT can be adapted to meet the needs of adults with ID and is the first study of its kind, to the best of the authors’ knowledge, to evaluate the incorporation of the “compassion box”.

This paper aims to introduce the concept of using the well-established Shared Lives approach to support survivors of domestic abuse with complex needs including those with learning and physical disabilities, older people and carers.

Survivors with complex needs are often excluded from traditional domestic abuse support services thus increasing their risk and making recovery impossible. Using the Shared Lives approach in suitable cases could address gaps in provision and improve the outcomes for survivors with disabilities, older survivors and carers.

The paper draws on evidence from reports and research about the experiences of these cohorts of survivors to explain how the Shared Lives approach could increase support options for specific categories of survivors.

Using the Shared Lives approach to support cohorts of victims/survivors who experience barriers to accessing support could improve outcomes for these people, reduce risk of serious harm and improve quality of life.

With the recent recommendation from Association of Directors of Adult Social Services around increasing use of Shared Lives, this paper provides one potential way to meet this recommendation.

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

To investigate ethnographically how patient experience data, as a named category in healthcare organisations, is actively “made” through the co-creative interactions of data, people and meanings in English hospitals.

The authors draw on fieldnotes, interview recordings and transcripts produced from 13 months (2016–2017) of ethnographic research on patient experience data work at five acute English National Health Service (NHS) hospitals, including observation, chats, semi-structured interviews and documentary analysis. Research sites were selected based on performance in a national Adult Inpatient Survey, location, size, willingness to participate and research burden. Using an analytical approach inspired by actor–network theory (ANT), the authors examine how data acquired meanings and were made to act by clinical and administrative staff during a type of meeting called a “learning session” at one of the hospital study sites.

The authors found that the processes of systematisation in healthcare organisations to act on patient feedback to improve to the quality of care, and involving frontline healthcare staff and their senior managers, produced shifting understandings of what counts as “data” and how to make changes in response to it. Their interactions produced multiple definitions of “experience”, “data” and “improvement” which came to co-exist in the same systematised encounter.

The article's distinctive contribution is to analyse how patient experience data gain particular attributes. It suggests that healthcare organisations and researchers should recognise that acting on data in standardised ways will constantly create new definitions and possibilities of such data, escaping organisational and scholarly attempts at mastery.

This study explored whether the creation of an illustrated picturebook could explain the terms and practicalities of participatory, multi-method qualitative research to children aged four to eight years and their parents/carers, creating conditions to seek agreement to their participation, by using an age-appropriate design whilst adhering to ethical guidelines. The purpose of this paper is to explore how this was done addressing these issues.

Drawing on the researcher's previous professional experience working in children's publishing and taking an innovative and collaborative approach to giving information to child and parent/carer co-researchers, the researcher and an illustrator created a picturebook both as an eBook and a paperback book to recruit and explain research and co-researchers’ roles to young children and their parents/carers.

The picturebook successfully recruited 30 children and their parents/carers. Other children expressed their wish not to participate. These findings suggest that greater consideration should be given to the ways information is given to potential research participants, particularly the visual, material and paratextual elements of the information sheets and consent forms routinely used in research.

This paper offers insight into the publishing practicalities of creating innovative ways of giving information about research participation to children and parents/carers and how these ways might foster rich data collection.