Our children are invisible”: Including the voices of people with Profound and Multiple Learning Disabilities and their families in health research

In October 2019, SLDO and PAMIS hosted a one-day workshop for people with Profound and Multiple Learning Disabilities (PMLD) and their families to explore the question: “How would you like to be involved in health research?”

This workshop was part of the Research Voices project. This project is funded by the Wellcome Trust and aims to work with people with learning disabilities to include their voices in health research. As a part of this project, we are facilitating a Citizens’ Jury for people with learning disabilities. This group will listen to evidence from ‘Expert Witnesses’ to have a chance to have an informed discussion before making recommendations.  However, we recognise that a Citizens’ Jury may not be an inclusive way to connect with adults with PMLD and their families, so we brought together an additional network of people with PMLD and their families to explore health research with the support of PAMIS.

Throughout the day, we had attendance from seven family members of people with PMLD and one PAMIS staff member. All of the family participants were mothers of children or adult children with PMLD. The group was given conversation prompts throughout the session to guide conversation, though many of topics were overlapping. The conversation was not recorded, but detailed notes were taken, including quotes from participants. Personal details have been changed so that people who shared their stories cannot be identified. Below is a summary of the conversation at the workshop, organized into themes, where relevant.

The context

At the start of the workshop participants took the time to share their background, their experience and their interest in research. As part of these introductions, the group spoke about their experiences of health and care provision more generally. Some group members spoke about experiencing discrimination and isolation. Some parents discussed the stress involved with having to advocate for their child and make very difficult decisions in a health system that often didn’t cater to their child’s needs.

One group member with a younger child with PMLD said that their experience as a carer had made them feel powerless at first, but that they had then attended a course about influencing policy and decided, “My voice is very important, so I will go to these government meetings.”

In fact, some group members noted that there was progress in terms of the quality of service provision available, but that this progress was:

  • Not quick enough
  • Not wide enough
  • Not consistent enough

Some participants described the experience of caring for someone with PMLD as isolating and described feeling segregated. However, the group overall agreed that there was a lot of benefit to being involved in networks and meeting other people with similar experiences. In addition, one group member spoke about how deficit based their conversations about their children were, specifically citing applying for benefits. The need to shift from deficit-based thinking is reflected in the research questions the groups identified later in conversation.

The group felt that there was an overall lack of accountability in the systems of care and support around them. These contextual experiences and opinions are important because they inform the way in which the group approached questions around health research.  

Discussion point 1: The role of family voices in research

Research often relies on families or ‘proxies’ for the person with profound learning disabilities to express what the individual’s views and experiences are. But there is evidence to suggest that proxies find it hard to divest themselves of own views (Cummins, 2002)

  • How do you feel about the role of families as proxy?
  • Can families be ‘neutral’ in presenting their child’s views and preferences? 

Understanding our children

The group questioned the idea of neutrality in research in principal: “Who is neutral? Nobody!

One group member felt that some family members can act as proxy and are capable of separating their own feelings and experiences from their children. An example this participant gave was her experience of taking her child to respite in a facility that also provides palliative care to children at the end of their life:

“When I go to respite to [respite location], my son sees it as a place of laughter and fun… but I see it as a place where children come to die”

The example illustrates this group member’s ability to separate her own emotional experience, and be able to read cues from her child’s communication and behaviour about their experience separately.

A carer’s emotions or experience clouding their interpretation of their children’s experience was something the group said could happen, but one group member suggested that emotion was how she was “deeply” connected to her child and how she could understand their experience: “we use empathy for that, we need to”

The group also acknowledged that there were limitations of a proxy; “I can’t always know what he’s doing.” Two parents spoke about this being particularly challenging during times of transition (for example, puberty), where they needed to step back and reevaluate their understanding of their child to fit in with their child’s stage in life. One mother had to be told by a friend “He’s an f-ing teeny bopper now!” to reframe her understanding of her child’s communication.

The sacrifice of participation

Some participants in the group spoke about participating in research as being minimally rewarding, and often requiring a lot of emotional labour and distress.

This was compounded when research participants were not able to see the benefit of their participation in the long term: “You see the poster. But where does it go?” The view of the group was that research should have demonstrable impact, and it is frustrating for families to make the sacrifices involved in taking part to have no follow up or no funded intervention because of the research.

This was also difficult in the case of trialing new assistive technologies. One family member had the experience of testing an assistive communication technology which was effective for her and her adult child, before learning that the trial wouldn’t go any further and there was no way to implement this technology in her adult child’s day to day life. She continues to follow this up but has not been able to use this technology for her adult child.

Another perspective in the group was that families should question the agenda behind research, particularly how that research was funded and whether the findings may be used in a way that has a negative impact on the people who took part. An example given was that findings are used to show inconsistencies in service delivery, which serves to divide otherwise coherent groups of families.

Discussion point 2: Allies in research

‘Most people with learning disabilities need allies to do research’ (Walmsley, 2001 p. 198)

  • Do we agree with this point?
  • Who are these allies to you?
  • What connections should be made between people who are responsible for research and their allies?

Who are allies?

The group broadly agreed with the statement: “we all need allies!” However, members of the group also noted that people with PMLD have fewer opportunities to have allies, and have fewer avenues to self-present in research. The voice of people with learning disabilities in research and policy is often people with moderate learning disabilities, which can mean the experiences of people with PMLD and their families are lost.

The group named allies such as PAMIS, SLDO and charities who work with disabled people.

In an interesting discussion, the group said they would not consider the NHS to be an ally in research, but could name single link people involved in their child’s health care who they would trust to approach them about relevant health research opportunities.

The relationship that participants in the discussion described with the NHS was sometimes fraught, complex and often crisis-based. In fact, some of the group felt that recruiting participants with PMLD and their families through the NHS would not be appropriate, going so far as to say, “They’re not our allies, they’re our enemies”. This statement did not relate to all NHS staff, but spoke to a wider mistrust that some members of the group had after traumatic experiences and challenging interactions with health professionals and the wider health system. This point may be important for researchers when considering recruiting individuals with PMLD and their families.

Discussion point 3: Research into practice

How do we get more research into practice in ways that are meaningful to the lives of people with profound and multiple learning disabilities and their families?

  • What kind of research would make the most difference?
  • What are the best methods of getting research into practice?

Making a difference

The group were able to develop research themes and questions naturally through conversation, looking at where they felt gaps in knowledge and provision were. These questions are noted in the final section of this write-up.

The group felt that research should focus on intervention and improvement. It should not just be about practitioner views or individual experiences, but about the structural barriers that stop progress, and the good practice interventions that address them. Two members of the group discussed their very different experiences of calling an ambulance for their child. Both parents had a traumatic experience with hospital admittance for their children and discussed the ways in which they had to work with inflexible systems and demand to be heard. However, the disparity in both parents’ stories acted as evidence to the group that there were wider systems challenges that needed to change for both families to get the quality of care they needed. Throughout the discussion, inconsistency of experience was something families brought up.

One group member felt that employing co-researchers with learning disabilities could help researchers understand more about the experience of PMLD, as co-researchers with learning disabilities may have more empathy and understanding of their experience.  

The group were disappointed about research not making enough impact on their lives, and repeated this throughout the workshop. One participant gave the example of the ‘Coming Home’ report produced by the Scottish Government as an example of vital research with strong recommendations that has yet to influence policymakers in a way that had changed her child’s situation.

Research priorities may be different at different stages of life

Some group members felt that research questions and research projects should acknowledge that the experience of people with PMLD and their carers is not the same throughout their lives. One person suggested that it might be useful to break this down into neonatal experience, childhood, education, transition and adulthood. This is the same for parents and families, who may have different experiences based on milestones and age. The group also noted that work with families should also include siblings.

Recording PMLD in routinely collected data

The group looked at examples of research done by the Scottish Learning Disabilities Observatory using routinely collected data and data linkage to understand the health of people with learning disabilities. The group noted that people with PMLD were not always identifiable in routinely collected data, and wondered why the severity of a person’s learning disability was not included as a question on the census or pupil census. This was a recommendation they put forward so that people with PMLD were not lost. One member noted; “We are a minority of a minority”

There is data available from GPs that does identify people with PMLD, which can be used in research. However, there are also flaws in this data that pose challenges.

Conversations around consent

Towards the end of the workshop, the facilitator introduced the idea of consent and assent to the group, to understand how they felt about the potential complexity around people with PMLD consenting to participate in health research.

The group felt that families should not just be seen as research participants, but support in the planning of research, so that the methods used in research would reflect their childrens’ abilities and the reality of PMLD:

“This is why the families of people with profound learning disabilities need to be involved in the [research] design. We could say, you know, that’s just not going to work”

Generally, the group felt that decisions would need to take into account what is in the best interest for the person. They also noted that the onus should be on researchers to meet people with PMLD at home where they are comfortable and calm.

How would you like to be involved in health research?

Overall, the group was enthusiastic about the opportunities of health research despite feelings of frustration at the pace of change in their childrens’ lives. They understood that it might seem complex to plan research with people with PMLD and their parents without context. However, none of the mothers present knew much about PMLD before their journey either, but are now immersed in the world. One group member noted: “None of us bought our ticket... we were given it, but you can come along with us.  It’s a golden ticket, it really is.”

One member answered the question: “It is really nice to be asked”

Research questions 

Through the course of the workshop, participants identified research themes and research questions they felt were relevant and interesting.

  • What is the experience of loss like for people with PMLD? Not just of grief, but of the routine loss of staff, teachers, and the loss that comes with insecure living situations. This research could benefit from the experience of people with more moderate learning disabilities who experience the same transient relationships and may be able to express this loss.
  • What is the impact of people with PMLD’s health and health experiences on their carers’ mental health?
  • How does spirituality help carers of people with profound and multiple learning disabilities cope? Can we explore the impact of hope on the experience of people with PMLD and their carers?
  • What is the experience of Self Directed Support for families of people with PMLD - how is it inconsistent? How can it save money? How does it impact on quality of life?
  • What is the impact of diet and food on the wellbeing of people with PMLD?
  • Should we have mandatory training on PMLD for NHS staff?
  • What are the positives of having a child with PMLD for families?
  • In developing small supported housing services - What works? What are the facilitators? What legal processes need to be in place? How can we relate to the local authority in these services?
  • What planning and support do people with PMLD need in a hospital setting? How do we move from bad practice to good practice? **

**This question relates not just to the experience in hospital, but also to the experience of getting to the hospital by ambulance or alternative transport, which is often a challenge in itself. The group discussed how poor planning and inflexible experiences around hospitalizations could lead to otherwise preventable health crises and potentially even preventable deaths.

November 2019