Mindfulness‐based practices with family carers of adults with learning disability and behaviour that challenges in the UK: Participatory health research

Abstract Background Family carers of adults with learning disability and behaviours that challenge lead complex and stressful lives. Their caring role can leave them isolated and unsupported. In the UK, effective services designed to build resilience for people in long‐term caring roles are lacking. There are none (to our knowledge) designed using a participatory health research (PHR) approach with family carers and professionals. Objective With positive behaviour support (PBS) and mindfulness and acceptance and commitment therapy (ACT) as key elements, a PHR approach was used to understand the basis for a successful course that supported the capabilities and resilience of family members in long‐term caring roles. Design The research was guided by the principles of PHR with participation as the defining principle throughout. Central to the research were reflexive conversations (communicative spaces) where diverse knowledges were shared and critiqued. Findings Mindfulness/ACT can change long‐standing response behaviours and build personal resilience and improve mental health. Elements enabling positive change included a facilitation approach for collaborative reflexivity and the complementary, interactive approach to collaborative enquiry for learning and decision making afforded by PHR. Discussion The use of PHR accessed knowledges that would have been lost to more traditional, professional‐expert driven processes and facilitated change in constructs for action for both professionals and family carers. Findings challenge service providers to consider how experiential knowledge has agency in professional practice and service design. Reflection on the PHR process across the FaBPos project led to a re‐consideration of quality issues in relation to PHR and participation.


| INTRODUC TI ON
Approximately 170 000 households in England live with an adult family member with a learning disability and behaviour that challenges. 1 Studies carried out in the UK and Germany have demonstrated the strong commitment of family carers to providing excellent emotional, social and physical care for family members. [2][3][4] These studies also highlight the on-going, long-term stress families experience due to constant juggling of day-to-day home life, coping with their family member's unpredictable behaviours and battles with inadequate services. A systematic review and synthesis of 15 research studies 2 revealed a gap in support for long-term family carers of people with learning disability and challenging behaviours.
Originating from mindfulness-based stress reduction courses developed in the late 1970s, 5 mindfulness-based programmes (MBPs) have been adapted for a variety of clinical populations. 6 In 2006, a 12-week MBP for mothers of children with autism 7 found an increased sense of satisfaction in parenting skills and a decrease in challenging behaviour amongst their children. Higher levels of mindfulness, acceptance and self-compassion appear to reduce the impact of challenging behaviours on parental stress, anxiety and depression. 8,9 In 2019, a 30-week MBP with mothers of adolescents with ASD, or with intellectual disability, also reported significant reductions in their levels of stress and reductions in disruptive behaviours amongst their sons/daughters. 10 There are no known studies that examine the impact of MBPs with family carers of adults with a learning disability and no known intervention protocol for training-based support activities for building their resilience. 11 In the UK, the term learning disability describes an impairment of general mental abilities (typically measured as an IQ of 70 or below) along with a significant impairment of social and adaptive functioning. The terms learning disability and learning difficulties are often used interchangeably. In this paper, we have used the term learning disability as it was the term commonly used by most people involved in the project. Some self-advocacy organizations argue, however, for the use of learning difficulty "to get across the idea that our learning support needs change over time". 12 We acknowledge and respect that perspective on learning potential.
The combination of mindfulness and acceptance and commitment therapy (Mindfulness/ACT) differs from traditional cognitive behavioural therapy. Rather than trying to teach people how to control their thoughts and feelings, it teaches people to notice, accept and embrace these, including previously unwanted ones. The current cognitive model for explaining how mindfulness and ACT work together suggests they may alter the relationship with stressful thoughts that evoke powerful emotional responses. 13 The aim of the Family Based Positive Support (FaBPos) project was to understand the core components for an effective Mindfulness/ACT course for family carers of adults with learning disabilities and behaviour that challenges. Through the processes of participatory health research (PHR), the intention was to bring together the different sets of knowledge held by clinical psychologists (the facilitators) and family carers firstly to investigate the underpinnings for an effective course to support and develop resilience in the face of long-term stress and secondly to investigate the impact of collaborative research engagement (PHR) as a process.

| PARTI CIPATORY HE ALTH RE S E ARCH
In the UK, health research funders generally expect researchers to include the voices of patients in their projects. 14 A national advisory group for patient and public involvement (PPI) in research, INVOVLE, was established in 1996 to support active PPI in NHS, public health and social care research. 15 The term PPI is, however, applied to a broad range of engagement processes, from research that might engage the public as members of a research steering committee to the co-creation of research led by, and for, those whose lives are directly affected by such studies. The fundamental difference between the two examples given above is that the former is driven and led from an external, professional, more distanced standpoint and the latter, PHR, has, as a key aim, the maximization of the participation of those whose life or work is the subject of the research in all stages of the research process. 16 In recent years, there has been increased adoption of research approaches that move beyond collecting expert testament to embedding the knowledge of those whose lives/work are the subject of the study as a fundamental element of the research process. 17 This goes beyond service user involved, or service user led research in that it values and uses multiple ways of seeing as the core driver for the research. No single form of knowledge, such as academic knowledge or practitioner knowledge, is given primacy. New knowledge is produced collectively rather than unilaterally by a particular subset of individuals. Agency is provided to the voices of those with lived experience in understanding and shaping the research, alongside more traditional knowledge bearers (professionals and practitioners). Embedding "popular knowledge" 18 challenges the historical hierarchical view where professional knowledge is valued above situational and experiential knowledge, where professional observations are viewed as objective but service-user perceptions viewed as subjective. 19 If the subjective is considered less worthy or less important, this creates barriers to shared learning. It contributes to the gap between what is needed by service users and what is provided by services and historic notions of the professional as the knower and the service user as receiver of knowledge continue to shape how services are configured and delivered. [21][22][23] The intention of the FaBPos project was for people to work together to build new knowledge for action, through research processes that involved family carers and professionals in shared looking, acting, critical reflection and decision making.

| PREPARING FOR THE FAB P OS PROJ EC T
The original project design team (PDT) consisted of a consultant clinical psychologist with a wealth of experience using Mindfulness/ ACT, a university academic with experience as a practitioner working with family carers and of facilitating PHR, three family carers and a research assistant. Prior to undertaking the research, the team consulted with family carers in the local region about their caring experiences. They discussed what might support them in their car- ing role, what that support might look like and how they looked after themselves. Discussions with 4 mothers, 1 sister, 1 grandmother and 2 couples (mother and father) were held in their own homes. 4 group discussions were held in family carer centres with 12-25 family carers per group. Informal conversations were also held between family carer members of the PDT and family carers they associated with.
Learning from these consultations, outlined in Table 1, was then put together with the work of the PDT team and contributed to the design of the research project.
The project gained ethical approval from both University and NHS ethical governance processes. In the time, it took to gain funding and acquire the related ethical approvals; however, changes in the lives of the family carers and the research assistant meant they were no longer able to be researchers on the project. Two family carers remained connected as members of the Steering Group/ Advisory Committee, and a new research assistant was recruited.

| RE S E ARCH DE S I G N
The underpinning design for the research was a series of three

| Communicative spaces
Communicative spaces were places for "authentic participation" 24 ; spaces where people came together for "...mutual recognition, reciprocal perspective taking, a shared willingness to consider one's own conditions through the eyes of the stranger, and to learn from one another". 25 The aim was not to strive for consensus based on current knowledge, but to bring together, and wrestle with, "mutually incompatible alternatives". 26 This required the cultivation of an ethos of critical thinking, of "openness, receptivity, sensibility and critical reflection upon our assumptions, limitations, blind spots and discourse". 19 The communicative spaces were positioned to allow reflexive scrutiny of new understandings by all those taking part. This Maintaining a good quality of life for the person they cared for was priority, often at the expense of their own quality of life. Both family carers themselves, and services, paid little attention to the well-being of family carers Family carer experiences 24/7 care is very hard and takes a toll on physical and mental health. This gets more pronounces with age. Most family carers had taken part in courses delivered by professionals and/or third-sector organizations. They had not alleviated stress and did not foster space to build resilience. They had little confidence that future courses would help them. Being subjected to tests in relation to their lifestyles and mental health during previous engagements was described as being intrusive, an additional burden, and made them feel negative about themselves. They would not take part in a course that used such approaches. Time was very precious with time constraints a major factor in adding to their stress. Given their caring responsibilities, family carers considered full-day sessions would be too long Family carer views and expectations of a course They wondered whether family carers would recognize/prioritize the need to come to something that had a strong focus on themselves rather than their relatives. There was suspicion of the idea of Mindfulness/ACT and whether families could be convinced that it was worth trying. Some wanted to access informal support where they could talk with others rather than attend a course. Some wanted their knowledge to be recognized, valued and used in any course. They would like to help other families if they could. This would be a rationale for attending a course, to be with others in a practical way TA B L E 1 Learning drawn from precourse consultations recursive approach was the key means for generating and analysing data and the springboard for "the construction of knowledge with its enactment in practice". 27 Designing safe spaces for reflexive practice was important given the perceived hierarchical differences between professionals and family carers, and family carer predominantly negative perceptions of service provision. The need to be critical within the research process was introduced to family carers during discussions at the start of each course. It was framed as a way of supporting future families (a motivation for participation revealed during the initial interviews). If family carers were not honest about how the course was working, and said things were fine when they were not, it would perpetuate the cycle of family carers coming to ineffectual courses. This encouraged those who might be nervous of being critical, especially of those perceived as having expertise or power over them, to make their voices heard (not all family carers were, however, shy of being critical). • integrate learning from the meaning making.

Number Description
Originally standing outside the main body of the course, the com-

| Post-course communicative spaces and interview
After each course, all involved (family carers and facilitators) were in-

| Meta approach for collaborative meaning making (data analysis)
Once all courses had been completed, further collaborative group analysis was undertaken. The aim was to critique themes already drawn from each course and to identify any further meanings emerging from a meta-synthesis of data with people who had taken part in any of three courses. Bringing together people from different courses held the potential to bring different insights to the data.

| Recruitment
The key criteria for family carer recruitment were that the person they cared for was over 18  All family carers completed the course, although attendance was sometimes interrupted by emergency family issues. Two family carers began a course but had to drop out before the end due to such emergencies, but both re-joined later courses and completed the sessions. Presented below are firstly findings in relation to behavioural changes instigated through the processes of the course and secondly the impact of the PHR approach on course content and processes.

| Behavioural change: family carers
For most family carers, the effects of this short course were rapid, reportable and observable. 14/18 family carers reported making changes to their own behaviours that improved their mental (and in some cases physical) health during or after the course, and associated improvements in family life. Mindfulness practices such as mindful walking, or mindful eating, that did not need a special time or place, meant that family carers could, and did, practice them. Enabling people to maintain regular mindfulness practice (even if short) was a major factor for both short-and longer-term (3 months plus) change. For many, enjoyment and their own nourishment had been missing from their lives and they began to prioritize time to do things they took pleasure in. For most, it started small, making commitments to invest in 15 minutes for themselves to read a book, do a mindfulness exercise or simply be alone.
Some joined choirs and made time to go to cafes or time to go out with their husbands/wives/partners/friends and even their family members whose behaviour had gradually led them to constrict their own lives.
The initial interviews revealed the complex lives of family carers ( Figure 2

| Impact of the participatory approach
The process of shared recursive reflections and actions enabled people to see differently and find spaces to affect their own actions.
This was powerful not only for those whose voices were seldom heard and even more seldom afforded agency in change processes, but also for those who generally found themselves in the position of offering their professional knoweldges as expertise.

| Impact on course content
Consultations with family carers prior to designing the project showed how the concept of Mindfulness/ACT was seen as alien, and hence not relevant, for most people. In addition, because the course c PCCS denotes post-course communicative space. This highlights the need to create a shared space for learning and support which acknowledged their expertise and is delivered in a manner that promotes engagement and is helpful.

Being a Family Carer -Impact and Outcomes
focused on self-nourishment, and not the needs of the person they cared for, it tended to be viewed as less important. This led to the initial intention to include an element in the course that would focus on supporting family members, positive behaviour support (PBS).
PBS seeks to understand the reasons for behaviours exhibited by people with learning disabilities and focuses on the teaching of new skills to replace such behaviours. 30 As they became more deeply involved in the FaBPos project, however, family carers and facilitators recognized how family carers were re-prioritizing their need for self-nourishment, even those who had initially come seeking help for building their resilience. Seeking self-nourishment came to be recognized not only as a way of keeping healthy enough to be able to continue to provide for family members, but also intrinsically important for themselves. The outcome was that as the course evolved, this became a topic for discussion and led family carers to consider PBS as irrelevant for this particular course.

| Impact on professional learning
During course discussions, criticism of professionals that, in their clinical roles, psychologists were unlikely to hear was voiced.
Normally, in my role as a clinical psychologist, people don't say that to me. Because, I guess, they might feel I might be offended or... it's just not something people would say. But, in that forum, people were really candid about their experiences PCI:Fac e B Due to such honesty, those whose knowledge traditionally domi-  about the issues raised by those stories. Facilitators had to take their cue from family carers. What emerged was a process termed by one family carer as "invisible facilitation". Affecting "…understanding of these practices and the situations in which these practices are carried out" 34 is at the root of PHR.

| Impact on research methods
The initial design for the project had been determined by the consultations with family carers and using the expertise of the PDT.
Key changes to the research approach and course design continued, however, throughout the project. For example, in a postcourse feedback session, to try and elicit which materials in the course were working for family carers, the academic researchers deviated from the communicative space approach. They introduced an exercise for family carers to sort materials used during the course into the categories "most used", "used" and "least used".
The subsequent silence was broken by one family carer saying this could not be done. Knowing and discussing the concepts behind all the materials had enabled this person to make substantial changes to their life, but he/she did not use any of the materials.
To categorize them as "not useful" was not helpful and he/she did not want to do it as he/she believed that then other family car-

| D ISCUSS I ON
In the FaBPos project, the involvement of facilitators as researchers into their own practice was fundamental for effective change.
Institutional and professional capacity for change has been recognized as an obstacle to achieving changes needed to enhance health and well-being. Institutional relations are often rather closed to the engagement of other actors. 35 This enhances existing cleavages that contribute to distrust in both processes and outcomes instigated by institutions. Communicative spaces are not only spaces where data are generated and analysed but act as change mechanisms. Co-creating self-knowledge through co-labouring is a powerful tool. It was, therefore, essential in the FaBPos project to have communicative spaces that bridged diverging interests and perceptions and mobilized different knowledges and expertise for change. The PHR approach served to break down the more traditional notion of research "where professional knowledge is separated from, and valued above, situational, visual and experiential knowledge". 19 In PHR, the multiple perspectives and recursive opportunities for data generation and analysis, learning and action, confer strength, meaning and (to borrow a word from a more positivist paradigm) validity. 33 Different knowledges are recognized and valued as legitimate. If one person remains aloof as a so-called "objective" observer, this would have risked "…the worst kind of subjectivismthe objective observer is likely to fill in the process of interpretation with his own surmises in place of catching the process as it occurs in the experience of the acting unit which uses it". 36

| REFLEC TIONS
The This highlights the importance of facing the challenge of integrating the co-construction of knowledge with its on-going enactment in practice. This is not a passive act but a radical engagement where the "need to disrupt" is a central element for addressing traditional power imbalances and building pathways for democratic change.
This is not an easy or static process "…it's like building an aeroplane while we're flying it". C2:FacA.

ACK N OWLED G M ENTS
We would like to acknowledge the work of all the family carers and facilitators who have contributed to this project. Their time, energy, clear insights and deep commitment to this project have been truly inspiring. It is our sincere hope and intention that this work will go on to make a difference to how families are engaged in researching and developing service provision and the effectiveness of services due to that engagement.