Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers’ experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process

Overview of study

The study had two elements; a series of workshops with people with a learning disability and focus groups or interviews with family-carers of people with a learning disability. CHANGE allocated two different members of staff, one of whom has lived experience of a learning disability, to recruit to the project, facilitate the workshops, and support the reference group for the workshops.

We ran five workshops with each of two groups of six participants who had a learning disability to explore their views and perceptions of emergency care treatment planning and how it might work for them, and to co-produce support materials for healthcare professionals to use in emergency care treatment planning.

We convened a Reference Group of people with lived experience of a learning disability to co-design the workshops with the study team, contribute to analysis of the workshop findings, and review the co-produced resources. The reference group was also invited to participate in an autoethnographic evaluation of their experience as part of the study. Thus, reference group members occupied a dual position as PPI members of the study team and study participants in the autoethnography. We have reported the autoethnography elsewhere²⁷.

Family carers of people with a learning disability were invited to take part in an online focus group or individual semi-structured interview to share their experiences and perspectives regarding emergency care treatment planning for both themselves and the person they cared for. Focus groups were managed by the core study team.

Patient and public involvement

We had identified that neither the voices of people with a learning disability nor their carers were being heard in the wider research project. We decided to create an additional work package that would focus on the experiences of people with a learning disability and their carers. We partnered with CHANGE a human rights charity led by people with a learning disability based in Leeds, and part of the Advonet Group²⁸. CHANGE operates a co-working model, employing people with learning disabilities to co-run projects, co-deliver training and co-create accessible information. Two CHANGE members worked with the study team to develop the study design and, later, the participant facing documentation. We convened a Reference Group of people with lived experience of a learning disability to co-design the workshops with the study team, contribute to analysis of the workshop findings, and review the co-produced resources. A further two CHANGE members, one with lived experience of a learning disability, worked with the study research fellow (JL) to facilitate reference group meetings and study workshops.

Reference Group members were recruited through CHANGE’s national networks of learning disability organisations. An email with relevant study information was circulated and interested participants were asked to contact CHANGE directly. CHANGE provided further study information, checked eligibility and capacity to participate in the Reference Group, and that prospective participants would be able to attend meetings in person at CHANGE. Further easy-read information and a consent form was then provided to eligible, interested participants, and a second contact arranged to answer further questions and take consent. Five members were originally recruited, however the reference group initially struggled to retain members due to their own personal circumstances therefore CHANGE entered a second round of recruitment following the same procedures as above. Thus, the initial preparatory meetings for the first workshop were held with the remaining participant and the facilitators from CHANGE. Three additional reference group members were then recruited by CHANGE following the protocol. The four final reference group members attended all remaining reference group meetings. Reference group, members received a shopping voucher after each meeting.

Reference group members co-designed the activities in the workshops, reviewed the findings from the workshops and the carer focus groups and collated them to create a presentation for the stakeholder conference. Reference group members presented the work package findings at the stakeholder conference with the lead researcher. A report of the stakeholder conference and its recommendations was made accessible and presented to the reference group to inform their review and refining of the resources prior to final versions being produced.

One member of the workshops was working with an NHS trust on a Dying Matters event. They invited AR to present with them at the event. Because of their involvement and interest in advance care planning they were invited to attend the reference group meeting to review and feedback on the resources developed.

A summary of relevant chapter of the final project report to funders was created in an accessible format and presented to the reference group for feedback. This was revised following their comments.

The reference group conducted a collaborative autoethnography of their experiences of the project. We are planning to co-author a paper with the Reference Group on their experiences of working on the project so these data do not feature here. CHANGE will support the dissemination of findings though their networks.

Recruitment

To recruit to the workshops CHANGE disseminated relevant study information to national networks of learning disability carer and self-advocacy organisations. Individuals interested in participating in the workshops contacted the project lead at CHANGE by telephone or email. The CHANGE project lead responded to check eligibility (aged 18 years or over, capacity to consent to participate in co-production workshops, resident in England, internet access and able to use online platforms either themselves or with a supporter). If eligible, the CHANGE project lead explained more about the project and answered any questions. Further written information was provided and a second contact arranged to seek consent to participate in the workshop series. Prior to obtaining consent the CHANGE project lead checked that the person had read the information sheet, had it explained, that any questions had been answered, and the person understood what was involved in workshop participation. Verbal consent was then obtained and documented. At the start of each workshop the CHANGE project lead re-checked consent to participate and to record the meeting with all participants. Workshop participants received a shopping voucher for their time after they attended each workshop.

We sought expressions of interest for focus group participation from family carers of people with a learning disability through CHANGE’s contacts of learning disability and learning disability carers’ support organisations, and through online carers’ support forums and carers’ groups identified through social media platforms and internet searches. Potential participants contacted the study team directly and were provided with further information and offered a range of dates for planned focus groups. If they could not join the planned focus groups we offered an individual interview. All focus groups/interviews were held online, and participants were given a unique link to a Zoom™ meeting for the relevant focus group/interview. Prior to the focus group/interview, participants were sent a blank copy of the ReSPECT plan for reference, and a consent form. Prior to commencement of the focus group/interview the researcher went through the consent form with the participant and recorded their responses to each section. Participants received a shopping voucher as a thank you for participation.

The study was approved by London South East Research Ethics Committee (REC reference 21/LO/0455 date of approval 17.06.2021).

Workshop development and role of the reference group

The Reference Group met initially to familiarise themselves with the research, establish ways of working, and to plan the first workshop. They then met in-between workshops to receive feedback from the previous workshop(s) and plan the next. A total of eight meetings took place, with the final one dedicated to reviewing resources produced by workshop participants to support ReSPECT planning, and to reflect critically on the overall process and learning. A researcher (JL), along with the designated CHANGE staff member, attended both the reference group and workshops throughout to provide feedback from the workshops to the Reference Group members, link issues raised, and make connections with wider study findings. With consent, reference group meetings were audio recorded to supplement fieldnotes made by the researcher. A more detailed description of the iterative process between reference group and workshops is reported elsewhere²⁷.

Workshops with people with a learning disability. Five workshops were held each with six participants. Workshops were held online and facilitated by the researcher (JL) and two members of the CHANGE team (ID and SW). The second series of workshops began after the third workshop in series one so lessons learned from series one would inform series two. Workshop one involved providing information about emergency care treatment planning to participants and exploring their experiences of accessing primary care, familiarisation with the ReSPECT process and form, using story sheets (see supplementary material for examples of workshop support materials). Workshops two to four explored participants views of the ReSPECT process in more depth, including their suggestions for what were important prerequisites to support people with a learning disability in preparing for a ReSPECT planning conversation. Workshop five summarised what had been learned in the workshops and provided an opportunity for reflection and any additional comments or suggestions for resources to support people with a learning disability. Workshops were recorded with consent and a summary of each workshop was drafted by the researcher (JL) using field notes and the recording.

Focus groups and interviews with carers of people with a learning disability. A topic guide was developed by AR and JH and refined by a family carer and chief executive officer of a charity supporting people with learning disabilities (Special Needs Outreach Project (SNOOP)²⁹. The topic guide prompted participants to consider potential benefits and disadvantages of emergency care treatment planning for people with a learning disability and their carers; how an emergency care treatment planning process could be implemented with people with a learning disability, the role of carers in the process and a carer’s own emergency care planning in light of their caring role. Focus groups were facilitated by up to three researchers (JL, a critical community psychologist and expert in participatory research methods; AR, an applied health researcher and expert in health inequalities and learning disability, and JH, a social and policy scientist and qualitative researcher). All individual interviews were carried out by JL. All focus groups and interviews were recorded and transcribed.

Focus groups lasted between 38 and 76 minutes and interviews between 45 and 62 minutes.

Analysis and developing resources

Workshop summaries and focus group/interview transcripts were analysed using thematic analysis³⁰. JL and AR read a sample of workshop summaries initially coding deductively for issues relating to information, process, and support for engaging with the ReSPECT process (which fed into development of resources). The summaries were then re-read and coded inductively to capture participants views on the meaning of emergency care treatment planning for people with a learning disability. JL then coded all summaries and identified candidate themes which were then discussed and refined with AR and presented to the Reference Group. Focus group/interview transcripts were coded initially using the topic guide areas as a thematic framework. The themes identified from the workshop data were process, autonomy, and trust; and those from the focus groups with relative-carers were process, lack of trust in the system, and carers as advocates. Given the resonance noted between the themes from each data set AS then read the sections of summaries coded under corresponding themes for each data set (process, trust/lack of trust, and autonomy/advocacy), and identified themes that captured meaning across both data sets. These were discussed and refined with AR.

To develop resources to support people with a learning disability preparing for ReSPECT planning, researchers (JL) and (AR) reviewed all workshop summaries to identify key messages and suggestions around information, process, and support for engaging with the ReSPECT process. JL presented to the reference group the workshop findings and a summary of a stakeholder meeting held as part of the wider ReSPECT project and attended by members of the reference group. The group provided further feedback on the type and content of the resources, then two reference group members, one workshop participant who had experience of work on advance care planning, together with JL and the CHANGE team, prepared the content and format of the recommended outputs. These were then submitted to CHANGE to convert into Easy Read format. The full reference group reviewed draft versions and recommended minor modifications. Resources can be found here (https://warwick.ac.uk/fac/sci/med/research/hscience/sssh/research/respect/resources/ or here https://www.resus.org.uk/respect/respect-resources see Resources to Support those with learning disabilities).

Getting the process right

Overall participants with a learning disability and family carers were supportive of ReSPECT planning as a way of ensuring care and treatment in an emergency was tailored to the needs and preferences of the person whose plan it was.

Carers said that developing a ReSPECT plan for someone with a learning disability required careful thought about the needs of the person and who should be involved in the conversation. They all agreed that any ReSPECT conversation must include them as the primary carer and most felt that they should lead the conversation.

However they also emphasised the importance of including members of the multidisciplinary team providing care for the person and members of their family. One participant expressed that they would want support from someone who understood the process so they would feel confident in completing the plan for the person they cared for.

Workshop participants also emphasised the importance of getting the process right so that a person with a learning disability was supported and empowered to have their voice heard and reflected in their plan. Key to this was support to prepare for a ReSPECT conversation and support following completion of the plan to enable the person to reflect and consolidate their understanding of their plan. Having the right person to support them through this process was important. Reflecting on their creative representation of their needs for ReSPECT planning one participant explained;

Support was requested before, during and after the appointment for the ReSPECT conversation. Participants were concerned that the discussion may distress them and they would need to debrief afterwards.

They emphasised the need for time, both for preparation and during appointments for the discussion of ReSPECT.

Several participants said they did not get double appointments with their GP despite this being a recommended reasonable adjustment. The importance of having sufficient time to ensure that the plan properly reflected the person’s needs and preferences was a consistent finding across all our data.

All carers felt it was important to do this process early and review it regularly.

Several participants with a learning disability expressed the need for reasonable adjustments to the conversation with a clinician which apply more broadly to health appointments, for example, quiet waiting spaces, a clinician familiar to them, longer appointments, easy read information, alternative formats including videos to support understanding the process and a supporter present.

Workshop participants also wanted the language on the ReSPECT form to be understandable for them as the current version of the form needed further explanation. They emphasised accessible language explanations should be on the form and not in a separate document that may or may not be given to them.

Lack of trust as a barrier to ReSPECT planning

Several workshop participants described feeling that their learning disability distorted assessments of their other health care problems and needs during clinical appointments, and they thought this may also be the case in completing a ReSPECT plan. Describing their pictorial narrative of a ReSPECT journey, one participant identified as a key challenge, health care professionals not listening or understanding the needs of someone with a learning disability.

Family carer participants also referred to previous experience of negotiating with the health care system when seeking treatment for the person with a learning disability they cared for, leading to some doubt about how the ReSPECT process would work in practice. They expressed uncertainty about who would have the form and whether it would be read and acted on in an emergency.

Both carers and people with a learning disability referred to their experiences with Hospital Passports (another patient/carer held record), explaining that patient held forms are often not requested, nor read when presented.

Carers also worried that even if a plan was available, recommendations would not be followed if they were not present to reinforce them. For example, a parent carer, while expressing a lack of confidence in general about ReSPECT plans being followed, noted that her son’s was likely to be followed simply because she would be there to reinforce it, which would not happen without that advocacy.

However, some carers did have confidence that ReSPECT recommendations would be followed. Others accepted that sometimes external factors impacted on the ability/likelihood of health care professionals accessing or following the recommendations.

Yet for many repeat experiences of discrimination toward their child with a learning disability, exacerbated by the pandemic, meant they had little trust in the current system’s level of care for people with a learning disability. Several parent carers reported cases of healthcare professionals making assumptions about their adult child’s quality of life. As one carer described,

Person centred care: autonomy and advocacy

For our workshop participants the ReSPECT process provided an opportunity for them to be able to say what they wanted in terms of their future treatment and care. It provided recognition and respect for them as a person and reminded health care professionals in a future emergency that this person’s wishes should be respected.

However, based on their previous experiences they were concerned about the capacity assessment within the ReSPECT planning process and whether assumptions would be made that they lacked capacity. This would undermine their autonomy.

They felt strongly that any capacity assessment should be done transparently and recorded clearly, so it was apparent to someone reading the form that the values expressed were their own.

Family carers also thought a ReSPECT form could help clinicians responsible for making treatment decisions in an emergency when the carer may not be present to advocate for that person. This was seen as particularly important if the person with a learning disability had complex needs that the clinician may be unaware of.

Carers also thought the benefit of a ReSPECT plan was in providing a holistic picture of what was important to the person with a learning disability for the clinicians treating them in an emergency, so that treatment decisions were tailored for them and not based on assumptions.

However, in most circumstances carers saw themselves as representing and advocating for their family member in person, as they had always done. The ReSPECT plan was seen as a safeguard if they were not available to speak for the person with a learning disability but that it was unable to evolve to meet changing needs and circumstances. For one participant their advocacy role reduced the relevance of a ReSPECT plan.

For some carers, their focus on ensuring best care for their relative with a learning disability framed how they considered their own ReSPECT plan, their preferences regarding future treatment being driven by the impact they would have on the future care of the person they cared for.

Developing resources to support people with a learning disability in ReSPECT planning

From our analysis and discussion with the reference group we developed an Easy Read guide for health and social care professionals to use with someone with a learning disability to explain RESPECT, identify support needs for the person during the process, and explore what the person wanted to include in the plan. The resources included worksheets that could be used for the person to set out their needs and plan what they wanted to say. These were based on resources used and refined in the workshops. Reference group members felt strongly that storytelling and creative methods were a way to support a person with a learning disability to articulate what was important to them. They emphasised the need to focus on preparation, having the right people present and practical planning, like transport to a ReSPECT conversation. They felt poor access to services could derail the ReSPECT process before it began. All resources developed are available at RCUK and on the study website.

Strengths and limitations

This is the first study that we are aware of that directly engages with people with a learning disability about their views and experiences of anticipatory care planning. We collaborated with a learning disability advocacy organisation and established a Reference Group of people with lived experience of learning disability who were involved at all stages of the research. Thus, we are confident that our research captures the experiences and needs of people with a learning disability in participating in emergency care treatment planning. The requirement for the reference group to meet in person limited our recruitment sample and there were some initial challenges in recruiting and retaining reference group members which may have reduced its impact in the early stages of the study. Workshops were held on-line which again limited recruitment to those who could access and use electronic communications. Offering both focus group and individual interviews of carers of people with a learning disability increased accessibility for participation. However, the numbers of participants in all elements of the study are relatively low, and the views of participants may not capture the views of the wider learning disability community.

Future research

Future research should include evaluation of the implementation and efficacy of the resources we have developed. Future implementation and training will need to take into account the wider findings of our study including the need for personalised support, presence of family members when appropriate, and avoidance of assumptions about capacity. In addition, the wider challenges of implementing change within an institution⁴³, and in particular the context of a general mistrust of health care services among people with a learning disability and their carers should be considered and mitigation strategies developed.