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Ryan S, Wallace L, Tilley E, et al. Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study. Southampton (UK): National Institute for Health and Care Research; 2024 Jun. (Health and Social Care Delivery Research, No. 12.16.)

Cover of Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

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Chapter 6Work package 4: co-producing and evaluating resources to support preparations for parental loss, transitions in care, and end-of-life care for carers

Plain language summary

  • This part of the research was about the support needs of families of older people with learning disabilities living at home with elderly parents.
  • We wanted to find out what is important to older people with learning disabilities and their families.
  • We wanted to make and test resources to help families to prepare for what is going to happen in the future and end-of-life care for carers.
  • We found out what approaches older people with learning disabilities and family carers prefer, and designed and tested a set of discussion cards for families.

Introduction

A lack of viable alternative living arrangements and limited information and support for families means that family carers too often end up supporting their adult children into their older age.15,127 Families needed to develop plans for living and support arrangements that enable PWLD to lead independent and autonomous lives. For elderly parents’ own EOLC planning, considering what will happen to their daughter or son is a crucial aspect. However, studies have found a lack of such future planning.15,16,36

We used a co-design approach128 to developing future planning resources, which involved PWLD, parent carers and siblings throughout. The co-design process was split into three stages. Stage 1 involved interviews and focus groups with older PWLD living at home with parents; and with parents and siblings of older PWLD. Analysis showed participants’ varied experiences, hopes and concerns about future planning and changes to living and support arrangements. These findings fed into stage 2: a series of 12 online meetings with PWLD and families with the aim of co-designing a set of resources to support families with preparations for parental loss, moving, and EOLC for carers. This included a catalyst film presenting the stage 1 findings to stimulate group discussions about what resources are needed. The co-design group developed a set of ‘Planning Ahead’ cards to help families to think about the future. Stage 3, a small-scale evaluation study, tested the cards over a 2-month period, and relevant stakeholder groups provided feedback. Feedback was used to refine the cards before making them publicly available.

Stage 1: understanding experiences, hopes and concerns about future planning

Objective

The objective was to understand experiences, hopes and concerns about future planning, from the perspectives of older PWLD currently living at home with parent(s), and of their parents and their siblings.

Sample

Participants were recruited through family and carer organisations, including the Public Co-ordinator Vaid, and via social media. The sample comprised:

  • nine PWLD living at home with their parent(s) (aged ≥ 40 years, mean age 46 years)
  • eleven parents of a daughter/son aged ≥ 40 years who lived with them (mean age 73 years)
  • nine siblings of a sister/brother aged ≥ 40 years who lived with their parent(s) (mean age 50 years)
  • seven siblings of a sister/brother who had lived with their parent(s) until age ≥ 35 years but whose circumstances changed following parental death or otherwise (mean age 61 years).

Thirty-two participants were white/White British, three were black/Black British, and one was Asian/Asian British. Eleven participants were male and 25 were female.

Data generation

Semistructured interviews and focus groups took place January 2021–May 2022. Focus groups can help participants with learning disabilities feel supported to express their opinions and hear other similar experiences.129,130 Participants were given the choice of an online interview or in-person focus group, which was conducted by a researcher and co-researcher.

Interviews and focus groups with PWLD took place over two or three meetings to ensure participants felt comfortable, and to enable meaningful participation. PWLD were given the option of having someone (not a family member) present to support them. Flexible methods included adapted versions of Books Beyond Words (wordless stories in picture format) and Talking Mats™ (a visual framework that helps people to understand and respond more effectively).

Data analysis

The team held debriefing sessions and the interviews and focus groups were recorded, transcribed verbatim, and analysed using Framework analysis.131 This is a systematic way of organising the data by creating a matrix that summarises themes and participants. It is an adaptable and flexible method that has the advantage of allowing the engagement of people without qualitative experience, including co-researchers. Transcripts were read several times and key themes were identified. The research team discussed the themes using pictures and sticky notes with additional reflections in an analysis workshop. This workshop led to the development of four questions, presented in Figure 2. A coding framework was developed and applied to the transcripts. Themes, subthemes and interpretations were discussed within the team as the analysis developed. Comparisons were made across participants to identify different experiences, hopes and concerns, and to ensure that the analysis represented the data set. Pseudonyms are used throughout this chapter.

FIGURE 2. Themes identified in WP4 stage 1 interviews and focus groups.

FIGURE 2

Themes identified in WP4 stage 1 interviews and focus groups.

Stage 1 findings

Families were acutely aware of the importance of planning ahead. This was an urgent and crucial component of their own EOL planning. How this was addressed varied from actively looking for solutions to ignoring the issue. Participants had clear ideas about what they would like to happen in the future, but they were not sure what future options were, or had become convinced that suitable solutions were lacking.

The central concern was what matters for the PWLD to ensure that they have a good, happy life. ‘Having control and independence’ and ‘being valued’ were crucial to this. Participants raised questions about what the options were, when planning should happen, and who could help with planning.

What matters to me: control and independence

Moving away from parents was seen by some as increasing independence, while others felt that it could be a threat to independence and control. Not being able to continue doing the things they love was a concern for PWLD, parents and siblings alike:

He needs to live somewhere where he feels that he can do his own thing, live independently as much as possible. But with that safety net of somebody who can do his personal care, do his meals and make sure it’s safe … My mum dresses him really quite trendy and he has his hair spiked up and stuff and just keeping him living the way that he has always been used to and for things not to slip.

Claire, sibling

Andy had a busy life of sporting competitions and day trips. He knew of friends who were limited in what they could do each day and was worried that he might live somewhere without transport:

Well if you live in the countryside though you can’t do what you want on a Sunday, it takes Sundays out completely doesn’t it. Depending where you live though, if you live in the countryside you’ve got Sundays out really because there’s no transport.

Andy, PWLD

Most people preferred the idea of living on their own or with family, putting the ‘living with others’ card into the ‘very worried’ column of the Talking Mat. Some PWLD felt this following negative experiences in the past. Others simply did not want the potential stress, noise and other difficulties of house-sharing.

Oh, hell, no. [Laughs] No. No, it’s not that, it’s just that, no, I’d rather live by myself, or live with my boyfriend or whatever the case may be … With other people? Oh, no. Gosh, I can’t even – the noise will be like ‘Whoo!’ No.

Rochelle, PWLD

This reflects findings from WP3 that living alone or with a partner provides privacy, security and agency.

What matters to me: being valued

People with learning disabilities were valued members of the family, but there were concerns that entering the social care system would mean that support would become institutionalised. Participants described the importance of spending time with people you love and who love you. While some PWLD described some difficulties of living with their parents, family were central in their lives and regular family contact would be important for them if they were to move out:

That he’s somewhere where he feels secure with people that he knows and trusts. I think that’s it basically. It would be sort of a place and people that he knows. I wouldn’t think that it would be at all suitable for him to suddenly be uprooted and be among strangers … [he would need] somebody to give him a big hug and to be there for him.

Rose, mother

When should we plan?

While families were aware of the need to plan, the sense of urgency varied. For some there was a sense of a ‘time bomb’ waiting to go off and they described the ‘dread’ of what would happen when they died or became too frail to support their son/daughter at home. Anthony described himself as ‘desperate’ to find a solution:

Although, I can actually manage for the time being, I’m actually working on the basis that I can’t manage, because otherwise I’m never going to get there, and my nightmare will come true. I’ll drop dead, and then he’ll be down being sectioned and in a secure unit for the rest of his life, and that will happen.

Anthony, father

By contrast, some participants found this fear was too overwhelming to think about. They instead focused on their current caring role and delaying any possible crisis for as long as possible:

I’ve pushed it away. It’s not something that I can think about … I’m hoping to go on and on, and continue my caring role, because I can’t see no way out of it.

Margaret, mother

Many siblings were concerned that their parents would keep going until a crisis occurred. They struggled to talk to their parents about this:

In an ideal world, I would want to start talking a bit more now with my parents, but I honestly don’t think that they’ll want to deal with it until crisis point … I’ve tried. It’s met with, ‘Oh you’re talking as if me and your dad are gonna pop our clogs tomorrow’.

Claire, sibling

Other participants felt that there was little point planning while things were working well and the future could not be predicted. This could be frustrating for some PWLD who wanted to take the risk to have the opportunity for more independence. Sharon was asked about what was happening in a Books Beyond Words picture of a PWLD, parent and social worker looking at a picture of a house:

The mum’s listening but I think she’s nervous, because I’ve been there myself, so I kind of recognise the body language. He looks more enthusiastic where he’s like, ‘Great, this is great’. [The mum] looks like she wants to die. She looks like she’s like, ‘Don’t do it, don’t do it’.

Sharon, PWLD

Participants also thought that there was too much uncertainty around future support needs, how much funding they would be eligible for, and which services might be available by the time they felt ready to move. Some participants felt that the LA went through phases of preferring support models (e.g. residential communities) that would fall out of favour:

You can’t plan, because there’ll be something else come out where it will all be different … So there’s no tool out there, because things change too quickly.

Fern, mother

Some families were starting to plan and making smaller changes in their lives, as parents were beginning to struggle to give as much support as before. This could include trying to help the PWLD to be more independent. Siblings were also aware of this need:

She has a lot of abilities that we need to expand and give her that confidence that she can do it away from [the family] … to do shopping with somebody else, to travel in a bus, go to the shops, do the shopping for dinner and then come back and cook a meal with somebody else that’s not us.

Sofia, sibling

What are the options?

Participants thought that living alone with support was the best option for the future, either in a new flat or in the family home following the parents’ death. Clarity was needed about what was possible and how it might work. Some participants, particularly those with limited input from social services, did not know what was possible. There was little information available, and parents of people with profound learning disabilities worried that they would be pushed towards residential care settings.

Some participants did not think that any feasible, sustainable options were available. This was in part based on negative experiences of respite or setting up alternative living arrangements in the past:

That broke down. And it’s still the case now if what’s available is still off-the-shelf council services … Having experienced it once, you don’t have confidence in doing it and trying it again.

George, sibling, discussing respite care

Who will help?

Participants acknowledged that social services would need to be involved, but this was seen as a hoop to jump through, rather than as help or support. Experiences of support services were inconsistent, and participants were concerned about the lack of knowledge about the PWLD. Many felt that social workers deal with crises rather than proactively acting to prevent these crises:

I would feel like I would need to go with them with a fait accompli, I will need to go to them and say, this is what I’ve come up with, will you sign it off? I don’t feel like I could go to a social worker today and say this is where I’m at now I don’t need anything yet, but can we talk about it.

Claire, sibling

Support network is more to do with your family more than social worker, because social worker is a bit, some social workers are a bit hit and miss … If you want to people to live in their own house, well, then, give them a better social worker, and stop cutting them.

Rochelle, PWLD

The importance of knowing and valuing the person was key to that person leading a good life. Concerns about who would be there for their relative were most salient for families of people with more profound learning disabilities. Alongside concerns about finding appropriate professional support for their physical needs, they worried that, without family advocacy, people’s social lives would fall away:

We’ve done the Circles of Support and, obviously, the people with support needs have always got more people in their lives that are in paid roles, and less people in their inner circles. So because we work so hard at Max being present in the community and things like that, but without our facilitating, I think it would be less easy for him to have those contacts.

Louise, sibling

Summary of stage 1 results

  • Families were acutely aware of the need to plan ahead, and worried about the future.
  • PWLD were aware that their situation would need to change in the future.
  • Participants were concerned about the loss of independence and control, and of not being valued.
  • Participants did not know how to find suitable future solutions.
  • Participants felt that there was a lack of suitable options and a lack of support from social services.
  • Participants did not know who to talk to, and most did not talk about the future with their family.
  • Some participants actively sought solutions, while others did not engage in planning alternative living arrangements.
  • This further reduced opportunities for PWLD to lead autonomous lives.

Stage 2: co-designing resources to support older people with learning disabilities and their families to prepare for the future

Objective

The objective was to co-design resources for supporting older PWLD who live in the parental home, and their families, to prepare for parental death and transitions in care.

Design and data collection

There is increasing recognition of the importance of involving patients and the public in research and service improvement through co-design and co-production methods.132 Stage 2 used a modified version of experience-based co-design as described by the Point of Care Foundation.128 This approach aims to make meaningful changes to services by centring service users and health and social care staff experiences, and collaborating with these stakeholders to develop solutions to the issues they raise. The adaptation version focused on the experiences of families and PWLD, who chose to invite staff views and input where relevant. Key areas of concern were identified through a process of workshops and working together to address them.

The process involved creating a ‘catalyst film’ using film extracts from the interviews from stage 1. This film included the following sections:

  • When should we plan?
  • What are the options?
  • Can I keep my independence?
  • Who will help us to make plans?
  • Will it work?
  • Who will support us in the future?

A co-design group was created and attended 12 online workshops to co-design resources to help older PWLD and their families plan ahead. Each session lasted 2 hours. This was followed by an in-person celebration event. Feedback on the sessions was collected after sessions 3 and 12 using Easy Read questionnaires (see Report Supplementary Material 13).

Sample

Participants were selected from the stage 1 participants. Eleven people consented to participate, of whom eight regularly attended meetings. A core group comprised four PWLD and four parents. Two sets of participants were from the same family (with both the PWLD and their parent taking part).

Data analysis

The co-design sessions were recorded, but the data were not formally analysed as this stage straddled service development and research. There was a continuous appraisal and feedback loop, with team discussions, during the development of the resources.

Results of stage 2

Co-design sessions

Sessions 1 and 2: introduction, catalyst film and deciding how to run the group

These sessions included ice-breaker games, a discussion of the aims of the group and how the sessions would be run and watching the catalyst film.

Sessions 3–5: deciding approach, design and topics for resources

Over three sessions, the group discussed what sort of resources would be helpful, what they should look like, and what topics should be covered. Resources discussed included films, booklets, decision aids and conversation starters. The group wanted help to think in detail about what is important and what might be possible before talking to social workers.

It would be nice to have some sort of Easy Read process to go through. Like asking them would you like to live with a friend, would you like to live with someone else? Really detailed and think of all the different questions that would make them think what they want. Like John doesn’t like noise from other people. Then you could write in that book and then if you have your meeting with your social worker, you can say, this is what I want.

Fern, mother

The group decided to make a set of cards to help families start conversations and think and talk about the important things to tell social workers, along with a template to write this down.

Design

The group wanted accessible resources using pictures and large text that would help to start conversations:

I think it would be best to have both (pictures and headings) because some people can understand the picture and some people can understand the words.

Sharon, PWLD

I think having tips on the back of what to talk about might be great as well because it’s easy to forget about something important and get sidetracked.

Alison, mother

We discussed whether pictures from Photosymbols™ (a photo library featuring actors with learning disabilities) or illustrations would be better. While Photosymbols had the benefit of familiarity as they are regularly used in Easy Read documents, some parents said that their daughter/son would find these photos distracting:

I think [Photosymbols] tends to give the impression you’re talking about those particular people whereas the drawing can kind of direct their focus where you want it to go.

Anthony, father

The group decided to make cards with illustrations, simple headings, and tips about what to talk about in preparation for planning or assessment meetings with social workers.

Topics

An existing set of conversation cards, developed as part of the REACH Standards Toolkit133 to help support workers to talk with the people they support and ask questions to make sure they provide the support that person wants and needs, were shared with the group. These highlighted the need for resources to cover doing the things the PWLD wants to do, not just their daily support needs. Similarly, Alison pointed out they should cover the little things that are important but might be forgotten:

I think you need to be a little bit clear yourself before you engage with a social worker … Little things like my daughter really likes to get the newspaper. That’s the sort of thing we’d probably forget to tell people but it makes a big difference to her week … It would probably come up in the cards and you’d think, oh yeah we need to jot that down.

Alison, mother

One decision was how the prompts on the cards should be worded, asking about what is important now to build a picture of that person or asking specific questions about the future. In smaller groups, we discussed the potential topic of ‘where you live now’:

We’re talking about plans for the future so obviously experiences of where you live now would be crucial, but the main objective is what happens next … I think ‘where I live now’ is too specific, maybe ‘what’s important’, or ‘what do I want to carry forward’.

Anthony, father

In a wider group discussion, we agreed that the cards needed to help people to build on knowledge about what is important now to think about what would be needed in the future.

We asked about other topics that should be included:

How to pay a bill, how to get the balance of being independent, and getting the right support and advice.

Sharon, PWLD

What about financial advice? You know what it costs and how much money you can have in the bank before you get the help and all stuff like that.

Linda, mother

Information about what your rights are about choosing where you want to live.

Fern, mother

This led to the inclusion of a set of ‘information cards’, alongside the conversation starter cards.

We brought mocked-up examples of topic cards to the group and asked people to try them out. This particularly helped the development of the detailed prompts on the backs of the cards.

Sessions 6–9: guest speakers

In the subsequent four sessions, we invited guest speakers, based on what the group said would be helpful. Speakers included:

  • users of ‘Shared Lives’ services (a man with a learning disability and his Shared Lives carer)
  • the head of a community-based learning disability service and someone supported by that service
  • a social worker
  • the head of an organisation supporting PWLD to design their support using ‘life planning’.

These sessions started with ice-breaker games. Guest speakers were then asked to give a brief introduction about who they were and what they did. Guest speakers with learning disabilities were asked to talk about their experiences of their living situations. The members of the group were then invited to ask questions. The Q&A was structured as a conversation between the guest speakers and group members, with minimal input from the research team.

This helped to identify key issues to include in the conversation cards. The sessions about Shared Lives and community-based services highlighted questions around deciding where people might like to live (e.g. who they would like to live with or near, how much choice they would have over this). Several group members had no knowledge of the different sorts of service models, highlighting the need for information cards as well as conversation prompts. Conversations with the social worker and life planner about how they work showed that families needed to be able to explain in detail what their wants and needs are and why these are important and should be funded. It helped to focus the cards to prompt families to think about:

  • What are the big and small things that are important in your life?
  • What are the big and small things you need help with?
  • What would happen if you did not get this help?
  • What types of places to live would be appropriate or not and why?

Over the 2-month period of sessions 6–9, the research team developed an initial set of cards based on the feedback from the first five sessions and learnings from the guest speaker sessions.

Sessions 10–12: finalising resources

A full set of conversation cards were sent to group members for feedback. The initial set used Photosymbols images as a placeholder while an illustrator was commissioned. Sessions 10 and 11 focused on the content of the cards. An illustrator came to session 11 to get initial ideas from the group and show sample images. Between sessions 11 and 12 (7 weeks) the co-design group members were sent images of the cards as these were developed and provided feedback on the illustrations and format of the cards. Feedback led to decisions including:

  • Using illustrations rather than Photosymbols: ‘I think that most photos are too specific and don’t convey the concept or meaning … Your sketches would get the conversation going’ (Anthony, father); ‘It makes it feel a bit cosy and nice to approach’ (Alison, mother).
  • Keeping images and writing in separate white boxes: ‘I like it in the box’ (John, PWLD); ‘The box one seems clearer though, that’s like the picture there and the subject underneath’ (Andy, PWLD).
  • Changing from a picture on the front and prompts on the back to both a picture and prompts on the back so that people could see the picture and writing at the same time.
  • Font size was increased. Abbreviations were removed.
  • Creating an online version with downloadable, editable PDFs for notes.
  • Black and white illustrations: ‘Love the black and white one, colour ones are OK but guess would cost more and not sure they’re better’ (Alison, mother).
  • Changes to hairstyles and clothes to make people look less ‘dowdy’, more people with mobility aids, more people from different ethnic backgrounds, changes to individual pictures that were unclear.
  • Keeping the information content despite its density. ‘It seems like a lot but you’ve got a lot to cover, it’s good to have choice and pick out the relevant ones’ (Fern, mother). Clear instructions were included to emphasise that people did not need to look at all the cards.
  • Adding topics such as menopause and seeing a dentist.
  • Adding further detail to prompts, for example, having a lock on your door, having your girlfriend/boyfriend stay over.
  • Moving ‘ideas and tips’ to a separate card so that they do not distract from the conversation prompts.
  • Calling the cards ‘Planning Ahead’ cards and the booklet ‘Me and my plans’.
Celebration event

Group members chose to have an in-person event. This was an opportunity to meet in person and celebrate their achievements. The event included games, a quiz, group members bringing in their art, and time to socialise. Each group member was presented with a ‘goodie’ bag, including the finished cards and booklet, a card thanking them for their contribution, and a star ornament. Those who could attend fed back that this was an important event to end the project and meet other group members.

Feedback on sessions

Tables 8 and 9 show comments from the feedback questionnaires. Six group members gave feedback after the third session, and four after the final session (before the celebration event at which the final ‘Planning Ahead’ cards were shown).

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TABLE 8

Work package 4: feedback from stage 2 participants following session 3

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TABLE 9

Work package 4: feedback from stage 2 participants following the final session

This feedback led to inviting service providers as guest speakers and further clarifying plans for future sessions.

Reflections on the co-design process

Online meetings

The initial decision to run the groups online was practical as there was a wide geographical spread of participants and ongoing concerns about COVID-19 infections. Two PWLD who lived locally and could not use video-conferencing attended in person and joined online with support from the research team. There were some downsides to the online format, which reduced opportunities for informal conversations, and one participant commented that they were not sure if ‘the group “gelled” together effectively to make working outside of the meetings happen’. A WhatsApp (Meta, Menlo Park, CA, USA) group was set up in the final months of the co-design process, but this could have been done at the start of the project to encourage group members to stay in touch between sessions. The celebration event allowed the group to meet in person, although several members were unable to attend due to illness.

Flexibility

Flexibility was key to the co-design process. The workshops were originally planned to take place over 6 months, but this was extended to 8 months to allow time for the illustrator to design the cards and for the group to review and feedback on the cards. This meant that there was time to really listen to group members and make changes based on their feedback. Plans for stage 3 were adjusted to fit these timelines, ensuring that the decisions could be implemented and that maximising the group input into resource development could be prioritised. Similarly, by not planning all the sessions in advance, there was flexibility in the type of resources that could be developed, who would be invited as guest speakers, and how sessions were run.

The downside was it was harder to give group members a clear picture of the plans for the group sessions. This was reflected in the feedback that a group member said was ‘not as clear on aims and deadlines as those of you leading the project’. This could have been set out more clearly in the first sessions, and the group could have been reminded of the aims, progress and outstanding tasks at the beginning of each session.

Involving different perspectives

Keagan-Bull’s role co-facilitating the meetings was a key factor in the success of the group. He reflected, ‘I think that me giving my own experiences helped people to be able to talk a bit more’. PWLD and parents working together also enabled participants to share their perspectives. Feedback showed that group members particularly enjoyed the sessions involving guest speakers. Reciprocity is a key principle of co-production,134 and the opportunity to speak with professionals and people who used services was a benefit to the group.

Stage 2 output

A newly developed set of 102 ‘Planning Ahead’ cards (available in physical and digital formats; https://sway.office.com/5LjAwlV0OFsHjBAj) are designed to help families to prepare for meetings with social workers to discuss future plans (Figure 3). They are accompanied by a ‘Me and my plans’ booklet in which families can write down what they discuss and write a ‘to do’ list for future planning.

FIGURE 3. Example ‘Planning Ahead’ card.

FIGURE 3

Example ‘Planning Ahead’ card.

Cards are A5 size and include a picture, a label and prompts for discussions. There are seven categories of cards:

  • things I like to do
  • things I might need help with
  • home: what is important?
  • people in my life
  • about me
  • mum and dad getting ill or dying
  • information cards.

Stage 3: introducing and evaluating ‘Planning Ahead’ cards

Objective

The objective was to introduce and evaluate planning cards to support older PWLD and their families to prepare for parental loss and alternative living arrangements.

Design

Small-scale evaluation study and stakeholder feedback sessions.

Sample

The sample included eight families of PWLD (aged ≥ 35 years) who live at home with their parent(s). The cards were aimed primarily at family carers (parent, sibling or other close relative), but their relatives with learning disabilities were included as study participants if they were able (and wanted) to give informed consent. Seven parents, 1 sibling and 4 participants with learning disabilities were included (a total of 12 participants).

There were five relevant stakeholder groups, including the Public Advisory Group and the Greater Manchester Growing Older with Learning Disabilities (GM GOLD) group, and PWLD from 3 day centres who were interested in planning ahead.

Stage 1 participants who had not been part of the stage 2 co-design group were invited to take part in stage 3; gatekeepers from relevant organisations passed on study information to potential participants; and social media was used to publicise the study.

Data collection

Family feedback

Participating families were sent the following by post, with online links to the same material sent by e-mail:

  • baseline questionnaire
  • a set of ‘Planning Ahead’ cards and ‘Me and my plans’ booklet with information about using them
  • feedback questionnaire.

A follow-up questionnaire was sent 2 months after ‘Planning Ahead’ cards had been used.

Baseline questionnaire

This questionnaire asked for demographic data and participants’ current views on planning ahead, with regard to (1) level of concern about the future, (2) preparedness for the future and (3) steps taken to plan for the future in the last 6 months (see Report Supplementary Material 11).

Using the ‘Planning Ahead’ cards

We provided written information and a video about how to use the cards. The cards were designed to allow flexibility and so this included different ways of using them (with and without the family member with a learning disability, and using only some cards). Families were asked to use the cards on at least one occasion but had 2 months to use them as much as they wanted.

Feedback questionnaires

Participants were asked to complete a brief feedback questionnaire each time they used the cards. Family members and PWLD could complete this together. The questionnaire was sent via post and/or e-mail, according to the participants’ preference. It was developed specifically for this study and included questions about how they had used the cards, what they liked or did not like about them, and any thoughts, feelings or actions the cards prompted (see Report Supplementary Material 12).

Follow-up questionnaire

Two months after receiving the cards, participants were asked to complete the follow-up questionnaire (see Report Supplementary Material 13). This contained the same questions as the baseline questionnaire, with additional questions about the extent to which plans had been influenced by using the cards.

Stakeholder feedback

Five stakeholder groups were sent the cards, the booklet and a link to the online version. They were asked to provide feedback on how useful they thought the cards would be, how the cards might be used, and what changes might be needed.

Results of stage 3

Feedback on the cards from 12 family participants (7 parents, 1 sibling and 4 PWLD) and 5 stakeholder groups is presented below alongside an outline of actions taken as a result of this feedback. Family participants indicated that they used the cards one to three times over the 2-month period, sending the feedback questionnaires back at the end of this period. Those who provided feedback on individual cards did so for four to seven cards (all looked at cards from several different categories). Two families provided feedback on whole categories for two to four categories. Stakeholder groups gave general feedback about the cards as a set, with some comments about specific cards.

Design and content of cards

Overall, the design and content of the cards were well received, particularly the size, bright colours and pictures (Table 10). The number of cards could be overwhelming, but families said that they could choose the cards that were relevant to them and that the cards covered a good range of topics. The prompts on the backs of the cards were viewed as useful and helped families to think about details that they would not have considered without the cards. The ‘Mum and Dad getting ill or dying’ cards were challenging to look at, but families felt that this was an important topic to cover.

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TABLE 10

Work package 4: feedback on design and content of cards

The main criticism of the cards was that prompts on the back were not accessible to PWLD, meaning that they could not be used without support. While the cards were designed to be used within families, some people wanted to be able to look at them alone and some parents thought they would be easier to use together if the prompts were more accessible.

Table 10 provides examples of quotations from free-text feedback on the design and content of the cards.

Impact on planning

Feedback from participants suggested that the cards have the potential to aid future planning. Table 11 presents descriptive data on participants’ concerns, preparedness and steps towards planning for the future, at baseline and follow-up. Descriptive statistics show little change in average scores on these items, but the free-text responses show more nuance. Whereas some scores on these items improved, other participants felt more concerned and less prepared after using the cards. The free-text responses showed that this was often because the cards had prompted them to think about the future. For example, one mother whose ‘concern’ score increased from 1 to 8 stated, ‘My daughter is more concerned than me. Talking to my daughter has made me realise we need to sit down and have a proper family chat’. Her preparedness score increased from 4 to 6. Table 11 shows that the mean helpfulness score for the cards was 8.3 out of 10 (range = 6–10).

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TABLE 11

Work package 4: descriptive data on future planning at baseline and follow-up

The free-text responses gave detail about the impact the cards had on families’ planning (Table 12). Some cards, particularly the ‘Things I like to do’ set, prompted some shorter-term planning, such as plans to go on holiday, try different foods or restart attending a day centre. The cards also stimulated thinking and discussions about longer-term plans, including where the person may live in the future and what might be needed to put plans in place. In some cases, families used the cards to add to existing plans. Some feedback suggested that the cards would need to be used in collaboration with social care professionals for the plans to be put into place. There was frustration with the lack of support in this from professionals.

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TABLE 12

Work package 4: feedback on the ‘Planning Ahead’ cards

Actions following feedback

The feedback on the prompts on the back of the cards was mixed. The level of detail was reported to be important to generate conversations and suggest details that families had not previously considered. However, the prompts were inaccessible to some PWLD. Rather than reduce the level of detail and lose the benefits of the prompts, we developed new cards with two to four simple questions for each topic set that could be used when families did not want to use detailed prompts. The information about using the cards was updated so that it was clearer about how to use the prompts.

The cards were designed to be used by families in advance of meetings with professionals. However, feedback showed that involving social care professionals when looking at the cards could be beneficial. The information was updated to include reference to involving professionals. The cards will be included in the OpenLearn courses for families and professionals (see Chapter 7), and we are working with other organisations to ensure that the cards can be made widely available. We have also highlighted the ‘ideas and tips’ and ‘information’ cards, which give suggestions for putting plans into action and finding the right support, to address the lack of support from professionals that participants experienced.

Summary of stage 3 outcome

  • Families found the ‘Planning Ahead’ cards useful and fed back that the cards were well designed and covered relevant topics.
  • The cards have the potential to help families of PWLD begin to make plans for their future care/living situation. However, without professional support to put plans in place, families could end up feeling more concerned but unable to take actions to address these concerns.
  • Feedback suggested that the cards could be used more widely than within families and that social care professionals could be involved.
  • Changes to cards and accompanying information were made including an additional six ‘questions’ cards to make prompts more accessible.
  • Cards will be made available to PWLD, families and professionals.

Discussion

Across the three stages of WP4, findings showed that older PWLD and their families were aware of the need to make changes to their support and living arrangements, and many had made attempts to do so. However, they faced significant barriers to planning for such changes and had not received the support they needed.

What people want and need

A key barrier to planning was not seeing viable alternative living situations that would allow people to live a life based on being valued and having control and independence. Moving out of the parental home should be an opportunity for increased autonomy and independence, but PWLD and their families were concerned that it could have the opposite effect without the support to continue choose what the person does, with whom, and when.

Similar to WP3 findings, participants wanted to live alone (or with someone else they chose); be near family and friends; be supported by people who know them well and care for them; live in a location that suits their lives; and have control over what they do and when. However, this felt out of reach for many families and in some cases led to parents not making plans. Although WP3 findings show that good support is possible, it also found poor practice even in apparently excellent providers, suggesting that parents’ fears are well founded.

The planning process

Once PWLD and their families decided to plan for future support, they needed information about what might be available and how to start the planning process. Many worried that they would be slotted into ‘voids’ rather than having support built around what they need. There were concerns, particularly from families of people with more profound learning disabilities, that institutional, residential care would be their only option, reflecting concerns raised in previous studies.34 Families wanted information about alternative models of support, including examples from other PWLD who had moved and were living good, independent lives, supported by people who know them well.

Most participants found a lack of professional support to make plans. Conversations with social workers or other LA staff were seen as a hoop to be jumped through or a barrier to planning. Participants presented a picture of an overstretched system only able to respond to a crisis, reflecting WP1 findings of a lack of systemic approaches and support for planning for older age for PWLD and their families. The issue of reactive social services was highlighted in the 2012 government White Paper Caring for our Future: Reforming Care and Support,135 which called for people to have the information and support to make a choice between high-quality options. Our findings suggest that little has changed in the last decade.

‘Planning Ahead’ cards

Work package 4 originally proposed developing a ‘decision aid’ to use with social care professionals to plan ahead. Stage 1 showed that barriers extended beyond families needing help to make a defined set of decisions. Co-design participants wanted resources to give them confidence to tell social workers what they want and need. The ‘Planning Ahead’ cards were designed to help start conversations within families, highlight in detail what is important to the person and what they need, and help them to make the case to social workers and LAs about why these factors are important and should be supported. Initial testing of these cards suggested they have the potential to be a helpful first step for PWLD and their families wanting to make plans for changes to their living and support arrangements.

Conclusion

Work package 4 highlights the significant barriers that PWLD and their families face in making plans for changes to living situations and preparations for parental death. PWLD should be supported to live independent lives well in advance of their parents dying or becoming too unwell to support them at home, but many families were worried they would reach a crisis point without plans for this. The co-designed ‘Planning Ahead’ cards are a promising resource for families but are one small part of what is needed. PWLD and their families need to be confident that there are viable alternatives providing excellent support and help to choose the option that will enable them to live in a way they want and need.

Copyright © 2024 Ryan et al.

This work was produced by Ryan et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaptation in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

Bookshelf ID: NBK604510
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