A literature review and evaluation of national care models and frameworks providing care for children and young people with learning disabilities in Wales: Cyfiawnder Research Seminar

January 2024

The second Cyfiawnder: Social Inclusion Research Institute seminar was delivered by Dr Dawn Jones in January. Dawn provided a fascinating overview of the status of the health and social care literature surrounding models and frameworks of care for children and young people with learning disabilities.

Background

Dawn was funded by Improvement Cymru to undertake this secondary data analysis looking at and evaluating services of health and social care in Wales. A previous Public Health Wales scoping review had indicated that there were problems with implementation of care models, with a lack of fit between what was meant to be delivered and what was delivered to families.

It was found that there were some pockets of excellence around Wales, where best practice was implemented and families were receiving good care and services, but there was also evidence of poor practice. Existing policies prescribe integration from various services in the health and care sectors to deliver a seamless, holistic service to families enshrined in co-production principles. However, care was often fragmented for many families, or there was a lack of care models to begin with.

Method

Dawn was tasked with writing a literature review to provide a thorough evidence base to build on with primary research in the future. The difference with this review was that Dawn adopted a critical realist framework, which means that instead of providing statistics and percentages, Dawn was immersed in the literature, interpreting and evaluating it instead of simply summarising. Dawn explored what was going right or wrong in the sector, identifying any solution-focused strategies that worked, but also looking at the grey literature and grassroots testimonies and anecdotes in the form of films and blogs.

Findings

Design and Delivery of Integrated Services Models

  • All services had a broad commitment to integrative, rights-based, and person-centred frameworks
  • There are problems with implementation
  • The vision is lost somewhere along the way
  • Multi-agency meetings are not attended by both agencies and there is sometimes antagonism between attendees, which can lead to delayed care and confusion over financial decisions
  • Having a named accessible professional who can coordinate for families and has knowledge across sectors is helpful
  • In some local authorities, health and social care services have different ways of working, for example; the age a child or young person would transfer to adult services may be 16 in one county, but 25 in another
  • Health and social care sectors may also work to different ages of transfer to adult services, resulting in service-provision that can be complex to manage for both families and professionals

Skills and Knowledge Bases across Teams in Health and Social Care

  • Sectors have different thinking about needs across health and social care, e.g., reasonable adjustment are interpreted as accessibility to the physical environment by health professionals, but reflect deeper social needs by social care sectors
  • There is often reluctance to be open and discuss difference perceptions or models
  • Named key workers are a key factor to facilitate good outcomes

Authentic Engagement with Co-production

  • Finding out consistently what the individuals’ ongoing needs are
  • There is a lack of meaningful engagement
  • Co-production should be routine rather than one-time events
  • There is a need for more accessible mechanisms to support ongoing communication of needs, e.g., those with more complex needs are overlooked and excluded.

Data Collection

  • Data collected is fragmented
  • Discrepancies between how health and social care sectors define learning disability and how they measure learning disabilities; different sectors are measuring different concepts with no coordination
  • Those with learning disabilities say data should be collected more regularly rather than a feedback sheet after attending a one-off event

Summary

Dawn concluded by saying that everyone involved in health and social care want things to work for the families and children with learning disabilities, and they want carers and families to be involved in care delivery and decisions; the vision is shared, but there are different perspectives on how best to reach the desired outcomes.

The take home message is that all services should be considering ‘rights and not services,’ being person-centred from the start and maintaining this perspective. It was also suggested that parents and carers could train the professionals and offer their valuable perspectives.

Next, Dawn hopes to talk to families and children to gather opinions and perspectives and how they are experiencing health and care services. If you are interested in the research, please contact dawn.jones@wrexham.ac.uk.

Final report.

Powerpoint Presentation

Content Accordions

  • Past Seminars

    Dr Sharon Wheeler

    In November, Dr Sharon Wheeler gave us some fascinating insights into the world of compassion. Sharon’s title was “Empowered Compassionate Practice” and the session was chaired by Dr Caroline Hughes, who introduced Sharon and took questions at the end. 

    Sharon opened with three important questions from a short story by Leo Tolstoy: 

    • When is the most important time? 
    • Who is the most important person? 
    • What is the most important thing to be doing? 

    The audience guessed two out of three correctly, with the answers being the most important time is now, the most important person is the person you are with, and the most important thing to be doing is caring. 

    Sharon presented research on workplace wellbeing in the health and care sector, showing stark statistics that over 46% of respondents felt unwell as a result of work stress. Staff, particularly in the NHS, often witness extreme trauma and the emotional labour required is often taken for granted. Three persuasive arguments to invest in health and wellbeing is a moral duty, for recruitment and retention, and also financial return.  

    So what is compassion? Compassion is an awareness of suffering of self and others, coupled with a desire to relieve it.  

    Sharon proceeds to talk about compassion fatigue within compassionate care and how there is limited clinical evidence or case studies describing how it is even operationalised. There also seems to be a gap between cognitive compassion and compassionate behaviour, whereby the understanding of compassion exists but it is not put into practice.  

    Sharon was to clear to differentiate compassion and empathy, suggesting that empathy leads to distress in the one feeling empathy for another, whereas compassion can overcome this negatively by framing situations positively.  

    Next, Sharon outlines their own research project of conducting 20 interviews with social prescribers, who are often healthcare professionals working outside the NHS. From the results, Sharon created an in-depth logic model, which allows the reader to understand the differences between empathy and compassion, as well as self-compassion.  

    We can’t wait for the full logic model to be published as an academic article that is bound to create impactful change.  

    Thank you, Sharon, for a wonderful start to the Cyfiawnder Research Seminar Series. Next up, we have Dr Dawn Jones who will outline their work of evaluating national care models and frameworks providing care for children and young people with learning disabilities in Wales on 9 January, 2024.