How parents of young adults with intellectual disability make sense of their experiences of transitioning from learning disability CAMHS to learning disability adult health service: An IPA study

Abstract

Whilst existing literature describes the experience of transitioning in mainstream mental health services, little is known about specialist learning disability services. The following study aimed to explore how parents of young adults, aged 17 to 21, with intellectual disability make sense of their experiences of transitioning from learning disability Child and Adolescent Mental Health Service (CAMHS) to adult community learning disability teams. Semi-structured interviews were conducted with four parents of individuals diagnosed with a learning disability who were receiving care in the adult community learning disability team. Transcripts were analysed using interpretative phenomenological analysis. Three group experiential themes emerged: impact of transition on sense of control, making sense of challenges experienced, and wishing for a better service. The findings highlighted experiences of parents transitioning both through specialist health and social care services. Future research should seek to understand the impact of race on transition and experience of service.

Keywords

experiences intellectual disability IPA learning disability transition

Introduction

Bridges model of transition

Around 1.5 million people in the UK live with intellectual disabilities (Foundation for People with Learning Disabilities, 2018). In addition, people with learning disabilities are more likely to experience mental health difficulties than the general population (Bakken et al., 2010). Within mental health settings, transition refers to the pathway of young adults moving from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) (Russet et al., 2022). For individuals with learning disabilities, transition involves the process of them and their families attempting to work through complex pathways and systems (Forte et al., 2011) within health and social care. It requires a family-centred approach through early planning with individuals and their families, and collaboration between health and social care services (Hyman et al., 2020; Kuo et al., 2018).

The process of transition for individuals and families can be understood using Bridges’ transition model (Bridges, 2009). The model proposes that transition occurs in three linear stages: ending, neutral zone, and new beginnings (Arrowsmith et al., 2016). In the first stage of transition, the ‘ending’ stage, individuals end things that are familiar to them (Bridges, 2009). They tend to be resistant to change and can experience several emotions such as confusion and stress (Anghel, 2011). In the second stage, the ‘neutral zone’, individuals continue to experience many changes and may feel vulnerable, lost, and demotivated (Bridges, 2009). The final stage, ‘new beginnings’, is where individuals start to accept their new change and adapt and develop new identities and understanding (Bridges, 2009).

Difficulties experienced during transition

Health transition process can be challenging for individuals with intellectual disabilities and their carers (Brown et al., 2019); young adults are at a developmentally vulnerable stage where they are undergoing different life transitions such as social, family, and academic transitions (Patton et al., 2016; Singh et al., 2010). Likewise, significant changes are going on in the structure of their care (Brown et al., 2020) that may influence the experience of the transition process.

To allow for a smooth experience of transition, individuals need a sense of control and involvement in the process (Anghel, 2011; Bridges, 2009). However, research has evidenced that during the transition process, carers often feel a sense of loss, abandonment, and powerlessness (Davies et al., 2011; Lindgren et al., 2016; Schultz, 2013). With the implementation of the Mental Capacity Act (2005), parents of adult children with intellectual disabilities are found to experience perceived limited inclusion in the decision-making relating to their child and loss of control in situations surrounding the care of their child after the age of 16 and into adult services (Lawrence, 2018). This often leads to fear among parents that they will not be aware of important information relating to the well-being of their child following transition (Hill et al., 2019). Parents have also described the need to fight for effective health care after transition and a successful outcome was often dependent on the resourcefulness and persistence of parents (Brown et al., 2019). Resources drawn upon were informal support networks, time, and confidence in navigating health systems (Davies et al., 2011).

Research has evidenced a genetic component to intellectual disabilities, with parents of children with learning disabilities more likely to have mild to borderline intellectual disabilities than parents of children without learning disabilities (Emerson et al., 2015). Within childcare and family law proceedings, parents with intellectual disabilities are often disadvantaged in different ways (Booth and Booth, 2000). They are more likely to go through a child protection court case (Gould and Dodd, 2014) and are over-represented in social care (McConnell et al., 2011). It has been identified that parents with intellectual disabilities are significantly more socio-economically disadvantaged (Emerson et al., 2015) and less likely to seek support from professionals due to increased anxiety and fear of being disempowered (Ward and Tarleton, 2007). They are also found to have reduced support networks and experience a mistrust of services, especially social services (Pemberton, 2010). These experiences make it so that parents with intellectual disabilities feel alone in the support they wish to provide their child (Johansson et al., 2014), and stigmatised (Clarke and Winsor, 2010); it may be more difficult for parents to have a positive experience of services.

The need for understanding

Limited understanding of clinicians’ knowledge of the different service structures between mainstream CAMHS and AMHS (McLaren et al., 2013) can result in limited coordination between services (Hovish et al., 2012). In a systematic review of studies exploring the experiences of clinicians during the transition process (Hill et al., 2019), CAMHS clinicians highlighted that a lack of understanding about AMHS and uncertainty about the service leads to a lack of information being provided to families (Lindgren et al., 2014). This can cause families to transition to AMHS with unrealistic expectations (McLaren et al., 2013) and may lead to uncertainty and apprehension for families (Jivanjee et al., 2009). Thus, highlighting the importance of having clinicians in both CAMHS and AMHS equipped with knowledge about the different services to improve clinical practice and the experiences of families (Russet et al., 2022).

The importance of improving transitions from CAMHS to AMHS is increasingly being recognised by health services and policymakers (Davidson and Cappelli, 2011). A successful transition involves a planned and coordinated patient-centred process, with a period of parallel care between services (Singh and Tuomainen, 2015). This has been evidenced by research showing that young people transitioning between services perceive the consistency of clinicians and periods of parallel care important factors that enable effective transition (Jivanjee et al., 2009; Olibris et al., 2017).

Despite there being various research exploring the experiences of health transition, the focus of transition has mostly been on physical health services (Davies et al., 2011; Schultz, 2013) and mainstream mental health services (Jivanjee et al., 2009; Lindgren et al., 2016; McLaren et al., 2013; Schandrin et al., 2016). Likewise, literature exploring the transition experience of parents, emphasises the experience of their child transitioning into adulthood (e.g. Codd and Hewitt, 2021; Leonard et al., 2016). There is limited literature capturing the transition experience of parents of individuals with an intellectual disability moving from learning disability CAMHS to adult learning disability services. Similarly, these studies did not address parents’ views of what professionals can do differently. Given the important role parents play in the care of young people with complex intellectual disabilities, it is important to understand their experiences of health transitions. This may help inform health services (Theodore et al., 2018), ensure the needs of families are being met (Brown et al., 2020), and allow for strategies to be put in place to support parents. This is important because studies have reported that parents often wish to receive more support during the transition process (Clarke and Winsor, 2010; Johansson et al., 2014; Lindgren et al., 2016).

As a result, the following study will aim to explore how parents of young adults, with intellectual disabilities (aged 17 to 21), make sense of their experiences of transitioning from learning disability CAMHS to adult community learning disability team. The following areas will be explored: the experiences of parents with professionals during the transition of care from learning disability CAMHS to adult community learning disability team; what professionals could have done differently to support the transition process; and how learning disability CAMHS and adult community learning disability team can be better informed to support parents during the transition process.

Research questions

1. What kind of experiences have parents of young adults with learning disability had with professionals during the transition of care from learning disability CAMHS to adult community learning disability team and how do they make sense of these experiences?

2. What are the impacts of these experiences on parents?

3. What can professionals do differently to support the transition process?

4. How can learning disability CAMHS and adult community learning disability teams be better informed to support parents during the transition process?

Methods

Design

Qualitative research aims to explore, in-depth, the lived experiences and meaning-making of individuals (Wertz, 2011). The present study hoped to capture the voice of individuals regarding their experience of transitioning from learning disability CAMHS to adult community learning disability team. Thus, a qualitative research method was utilised to gain a detailed understanding of participants’ experiences (Carroll and Rothe, 2010).

It was assumed that the experiences of participants regarding the transition process would be dependent on their subjective interpretation and perception of events, therefore, a relativist ontological standpoint was taken (Khan, 2014). Likewise, the present study aimed to understand how parents make sense of their experiences, and the meaning attached to these experiences. Thus, an interpretative phenomenological analysis (IPA) (Smith et al., 2021) approach was taken as the qualitative framework. IPA is founded on a phenomenological epistemology approach that assumes that reality and meanings are subjectively constructed (Merriam and Tisdell, 2016). It is idiographic in nature as it focuses on the meaning and significance attached to the experience of an individual (Larkin and Thompson, 2012). The role of the researcher is critical in the understanding of the lived experiences of individuals from the standpoint of the individuals (Pope and Mays, 2020) through a double hermeneutics process. Therefore, it is acknowledged that the role of the researcher is not neutral within the research (Pope and Mays, 2020).

Participants

Four parents of individuals known to an integrated adult Learning Disability service in the East of England were recruited for the study. In this service, the transition age from children to adult services for both health and social care is 18 years old. This service also acted as a gatekeeper through which participants were recruited. IPA can be undertaken with small sample sizes of around 1-10 as this creates a means for an idiographic focus to be maintained (Reid et al., 2005).

Participants’ recruitment was based on a purposive sampling constructed to target parents of children with intellectual disabilities who have experienced or are experiencing transition from learning disability CAMHS to adult community learning disability team. Therefore, participants were recruited based on meeting all of the following criteria: parents of individuals known to the adult community learning disability team; parents of individuals aged 17 to 21 years old who are in transition to adult community learning disability team from learning disability CAMHS or their associated intensive support service; families who have received therapeutic input from learning disability CAMHS or the intensive support service; If discharged from the adult community learning disability team, this has been less than six months; and parents who live in the UK. To include parents with learning disabilities, information was made available in easy read.

The exclusion criteria included: carers of looked after children at the time of transition from learning disability CAMHS or the intensive support service to adult community learning disability team; families who have not received therapeutic input from learning disability CAMHS or the intensive support service due to expectation of transition to adult community learning disability team; families who have been discharged from adult community learning disability team for more than six months.

The researcher had originally aimed to recruit six to eight participants, however, retention of participants proved difficult. Of 22 individuals identified by services, only 12 met the study inclusion criteria. Of the 12 individuals, nine were approached and eight provided consent to be contacted. The remaining three individuals were not approached due to late identification; the study had a time scale to adhere to and the window of study recruitment had closed. Four participants withdrew at the point of interview. Three of the four individuals provided time constraints as a reason for withdrawal; the final individual provided no reason. All participants represented parents of adult children with complex behavioural needs. All but one participant transitioned from the intensive support service. No participants reported a diagnosis of learning disability. Table 1 provides demographic information of participants.

Table 1.

Demographic information of participants.

Participating parent^a	Ethnicity	Age of child (Years)	Diagnosis of child	Ethnicity	Route of transition
Iris	White British	21	Moderate to severe learning disability Autism Generalised anxiety disorder OCD Dyspraxia	White British	Intensive support learning disability CAMHS to adult community learning disability team
Jacob	White British	18	Severe learning disability Autism ADHD Developmental encephalopathy Multiple sensory processing disorders Visually impaired Challenging behaviour	White British	Intensive support learning disability CAMHS to adult community learning disability team
Katy	White British	21	Learning disability Autism Epilepsy OCD Challenging behaviour Anxiety PDA	White British	Intensive support learning disability CAMHS to adult community learning disability team
Val	Black African	19	Learning disability Autism Challenging behaviour	Black African	Learning disability CAMHS to adult community learning disability team

^aAll names are pseudonyms.

Background of researcher

The lead researcher is a 28-year-old black British–African female, without a learning disability and with prior experience of working with individuals diagnosed with a learning disability and their families. Being an individual from a black ethnic minority background, the researcher had an awareness of how disadvantaged minoritised ethnic groups are within the mental health system. Similarly, having clinically observed the experiences of individuals with learning disability and their families of services, the researcher was aware of some of the difficulties faced by individuals. Consequently, before undertaking the current study and based on the researcher’s prior knowledge, there was an assumption that the experiences of most individuals and their families moving from learning disability CAMHS to adult community learning disability service had not been straightforward. Knowing the difficulties faced by families and the limited research within the field of learning disability, the researcher, therefore, wanted to use the current study as an opportunity to give a voice to an underrepresented research population.

Data collection

One-to-one semi-structured interviews were used to explore participants’ experiences of transitioning. The interviews aimed to understand how participants made sense of the experiences of their children transitioning and the meaning attached to those experiences. The interview process was collaborative and emphasised on the expert role of participants, enabling the researcher to collate in-depth accounts of participants’ subjective experiences (Green and Thorogood, 2014).

An interview guide was used during the interview process. This was created through a comprehensive review of literature on the research topic. Patient and public involvement (PPI) was utilised during the development of the interview guide to ensure that the questions asked were appropriate for the research population. The PPI group were parents of individuals with intellectual disabilities who had experienced their children transitioning from child to adult services. Open-ended questioning such as ‘How have you made sense of this?’ was used to facilitate reflective responses. Questions, probes and language used in the interview guide were adapted to each participant and interview situation, as advised by Pope and Mays (2020).

Procedure

The recruitment of participants took place between July 2023 and February 2024. Clinicians were asked to approach eligible participants who met the criteria. Once consent to contact was established, the researcher made contact to gain consent to participate and arrange interviews. All interviews took place online via Microsoft Teams. The interview process took a conversational and interactive approach, encouraging participants to reflect on their experiences from the viewpoint of being a parent (Pope and Mays, 2020). Open-ended questions were asked to provide rich elaborated data (Burke and Miller, 2001). Interviews ranged from 60-90 minutes. Once the interview was completed, each participant was debriefed on the study’s purpose. As compensation for their time, participants received a gift voucher.

Analysis

All interviews were recorded on and initially transcribed by Microsoft Teams. The researcher went through each transcript manually to ensure their accuracy. Anonymised interview transcripts were analysed individually using IPA. IPA allowed for the subjective experiences of participants to be explored (Chapman and Smith, 2002) and the description of their sense-making process to be obtained (Brocki and Wearden, 2006).

IPA is based on the belief that human beings are sense-making creatures, consequently, it involves the in-depth examination of the lived experiences of individuals and how these are made sense of (Smith et al., 2021). The account narrated by participants will echo their attempts to make sense of their experience. To understand these experiences and sense-making, the researcher will need to interpret the account provided by the participant (Smith et al., 2021). As a result, the researcher is involved in a double hermeneutic as they try to make sense of the participants trying to make sense of their experience (Smith et al., 2021). The IPA process within this study focused on the researcher analysing and drawing out the lived experience of participants about their transition experience, the sense-making around this, and the meaning attached to these experiences.

The seven-steps IPA process (Smith et al., 2021) was utilised to analyse interview transcripts as shown in Table 2. Throughout the analysis stages, any of the researcher’s thoughts and feelings that came about from the reading and coding of participant’s transcripts were recorded in their reflective diary. This helped the researcher to ‘bracket’ off preconceptions from previous transcripts to maintain an idiographic focus and allow for the development of new themes and ideas (Smith et al., 2009). Due to the active role of the researcher within the analysis process, the researcher utilised a reflexive research diary and individual supervision to reflect on the research process to understand their role and impact on the study (Cassell, 2005). This helped ensure the quality, transparency, and rigour of data (Yardley, 2015).

Table 2.

Stages of analysis based on Smith et al. (2021).

Stage	Overview
1. Reading and re-reading the original data	Immersion into the data through thorough multiple readings of participants’ accounts. Audio recording of interviews was listened to, and notes were taken of non-verbal communication cues such as pauses and tone changes
2. Exploratory noting	A detailed commentary of the transcripts was created to identify the ways participants have understood, talked about, and thought about their lived experience of transitioning between services. Commentaries were descriptive, linguistic, and conceptual
3. Developing experiential statements	Exploratory comments were analysed to identify experiential statements. The experiential statements reflected both the participants’ original words and thoughts and the researcher’s interpretation, through the hermeneutic cycle
4. Searching for connections across experiential statements	The experiential statements were initially brought together and recorded chronologically and then re-organised into clusters of related statements. Clusters reflected the participant’s experiences
5. Naming the personal experiential themes (PETs) and consolidating and organising them in a table	Each large clusters of experiential statements were given a title to describe its characteristics. These clusters then became the participant’s PET. Smaller clusters within the PET were differentiated into sub-themes of the PET.
6. Moving to the next case	Steps 1-5 were repeated for each transcript before proceeding to the final stage of analysis
7. Developing group experiential themes (GETs) across cases	The final stage of analysis involved looking for patterns and connections across all participants’ PETs. This led to the development of GETs and group-level sub-themes

Results

Three group experiential themes (GETs) emerged from the analysis: ‘impact of transition on sense of control’, ‘making sense of challenges experienced’ and ‘developing the ideal service’. Each GETs has at least two group-level sub-themes themes. Table 3 shows the representation of participants’ comments within each theme. GETs and related group-level sub-themes are discussed below alongside supporting verbatim extracts taken from interview transcripts.

Table 3.

Representation of participants across themes.

GETs and group-level sub-themes	Total	Iris	Jacob	Katy	Val
Impact of transition on sense of control	4	×	×	×	×
Coming to terms with changes in role and responsibilities	3	×		×	×
Wanting more time for self	3	×	×	×
Making sense of challenges experienced	4	×	×	×	×
The desire for knowledge	4	×	×	×	×
The painful impact of not being heard	3	×	×	×
Issues of instability within social care	3	×	×	×
Wishing for a better service	4	×	×	×	×
Differences in support provided between the services	4	×	×	×	×
Making improvements: Transparency, preparedness, and cultural and racial sensitivity	3	×	×		×

Impact of transition on sense of control

This GET explains how participants made sense of their transitional experience through the impact it had on them, especially on their sense of control. This sense-making was expressed in two group-level sub-themes: coming to terms with changes in role and responsibilities, and wanting more time for self.

Coming to terms with changes in role and responsibilities

There was a perceived sense of change in roles and responsibilities following the transition to adult community learning disability team. This was reflected in how participants experienced decision-making in the care of their adult child. Val reflected here having “…to come [to] terms…” with not being the sole decision maker for her child following transition:

“…he’s being treated as an adult… before I would make decisions for him, now I can't really make a decision because it has to be an MDT [multidisciplinary team]… it's also something else that I had to come in terms with…” (Val).

There was an experience for Val that transition was not only occurring through the move to adult community learning disability team but also through transition into adulthood. With this, there was a sense of loss of power, autonomy, and control over the decision-making process of her adult child.

Furthermore, Val reflected on the impact of her cultural background on how she responded to the change in her parental role. She described that within her culture, “…you take care of somebody in your family, you don’t hand him over…”. In this instance, Val expressed having to “take a step back” in her role which provided an emotional distance to allow for control and a certain level of responsibilities to be relinquished to services. This need to step back was also shared by Katy.

The sense-making of participants in their experience of the transition process also centred around the responsibilities and burdens of being a carer. There was an experience that when things go wrong, parents “pick[ed] up the pieces”:

“…you have really no say in anything, so you have to just sit back and let things happen...but unfortunately, when things go wrong… you're the one to pick the pieces…” (Val).

This could provoke a sense of fear of being perceived as the ‘bad guy’ by their child. For Katy, this experience was “heartbreaking”. In response to these challenges, there was a need for participants to be resilient. For Iris, this meant that she had to become a “fighter”. There was an expectation for Iris that things could go wrong and as a result, she described the need for parents to be on guard.

Wanting more time for self

Participants experienced an impact of the transition process on their ability to attend to other activities outside of the transition process. Jacob, Iris and Katy commented on the time spent attending MDT meetings and how taxing this could be. Jacob described that the time spent attending various meetings often led to feelings of “exhaustion” and the inability to attend to things within the home:

“We are so time poor erm it's it's it's ridiculous… our house is filthy at the moment because we simply don't have the hours in the day…” (Jacob).

For Iris, there was a desire and a need for “…peace and quiet…” to allow for a break in the process.

Making sense of challenges experienced

This theme explains the difficulties faced by participants during the transition process and the factors influencing this. The difficult experience was expressed in three group-level sub-themes: the desire for knowledge, the painful impact of not being heard, and issues of instability within social care.

The desire for knowledge

The experience of transition not only reflected the transition to adult community learning disability team but also the transition within social care. Challenges faced by participants during the transition process were influenced by the perceived understanding of professionals, especially in relation to housing processes. Whilst describing his difficulties with the housing process, there was a sense that Jacob felt unsupported in the process due to the limited understanding of professionals:

“…Erm one of the big problems we had with the transition and to a certain extent continue to have is that no one knew the first thing about housing, uh, all of the people who did know about housing, we did not have access to um because X was [Continuing Health Care] funded…” (Jacob).

Katy also described this lack of professional guidance in her journey and felt that she “needed somebody who knew what they were doing”. For Val, the lack of professional understanding moved beyond housing processes to cultural and racial understanding. She described the need to educate professionals on things relating to personal care, such as telling them “…you need to do this to their hair…”. Likewise, negative interactions with professionals sometimes brought about uncertainty as to whether these interactions were racially driven. As a result, Val’s sense-making around this centred on the need to be “wary” of professionals supporting her child.

Participants also described experiences of how their own perceived lack of understanding affected their ability to engage in certain aspects of care following transition. Katy reflected below on how her limited understanding of things affected her ability to “keep up” with meetings:

“…if I attend an MDT meeting, there could have been nine or 10 people sitting around it… I can't keep up with it… I don't know who I'm looking at and talking to now.” (Katy).

There was a sense for Katy of not being properly inducted to the professionals around her which has impacted her understanding of things going on around her. She described that these experiences took a negative “toll” on her. However, she reflected that having a good and supportive MDT helped to mitigate the difficult feelings that came with the perceived lack of understanding. It helped her feel “settled” and more informed of the things going on within and post-transition.

The painful impact of not being heard

The way professionals interacted with participants during and after the transition process greatly influenced the experiences of participants. There was a collective experience of feeling unheard by professionals following transition. Iris recounted a need to shout to be heard before the sectioning of her child under the Mental Health Act after transition:

“…I was screaming and shouting at them, literally saying this is not right, you need to come and help, we need more input here, she is spiralling out of control…” (Iris).

There was a sense for Iris that not being listened to by professionals led to the worsening of her child’s mental health following transition. She recalled that her child “…was sliding downhill, but [professionals] weren’t recognising that.” (Iris). The sense-making of this experience centred on the belief that adult community learning disability team could have done more to prevent the decline in the mental health of her child; there was a sense of blame towards the service:

“…she was sectioned. Erm what more can you say? I mean, that is a shocking way to end up and that is your first two years in [adult] services…” (Iris).

Contrastingly, Val and Jacob had a shared experience of feeling blamed by services. For Val, this was regarding choices made by her adult child regarding accessing services. She felt that even if she were to express to professionals the choice of her child not wanting to be vaccinated, professionals would express that “…you’ve refused him to have that…”. In Jacob’s experience, a sense of blame occurred when he voiced out opposing opinions relating to aspect of transitional care within social service:

“…So, when we said “look, you know I appreciate that that may be an easy fix for the ICB [Integrated Care Board], but for X, that would cause real problems”, um, we were then portrayed as being obstructive difficult parents erm deliberately trying to make it difficult for for for the ICB…” (Jacob).

Jacob experienced a strong emotional reaction in response to this sense of blame as it made him feel “bitter” and “very angry”. In this instance, Jacob made sense of this perceived blame as a way for professionals not taking accountability when mistakes have been made. In his account, he described that professionals were “…desperate to, um, deflect some of the blame that the judge was was put putting at their door…”.

Issues of instability within social care

Although not specifically asked, when describing their experience of transitioning from learning disability CAMHS to adult community learning disability team, all participants described extensively the role of social care services in this transition process. Experience of transition within social care services had an impact on how transition was experienced in adult community learning disability team. Participants talked about the staffing difficulties experienced within social care which led to high staff turnover and constant changes in professionals. These professional changes not only impacted participants but also their children. Iris described that her child’s “…anxiety was starting to rocket…”. For Katy, the constant changes in professionals have led to a sense of confusion:

“Because the turnover of staff in X's life, from social worker to the process, has been phenomenal… I can't tell you how many social workers X's had. I can't tell you how long they stayed for… I don't know who I'm- I don't know who I'm talking to today.” (Katy).

Wishing for a better service

This GET highlights the differences in how service was experienced between learning disability CAMHS and adult community learning disability team. It also explores ways in which services could be improved. It was expressed through two group-level sub-themes: differences in support provided between the services and making improvements: transparency, preparedness, and cultural and racial sensitivity.

Differences in support provided between the services

There was a perceived difference in how support was experienced following transition. All participants viewed their experience of professional support in learning disability CAMHS, especially the intensive support team, to be considerably more positive compared to adult community learning disability team. Participants valued the intensity of support given and felt that the team worked jointly together and was proactive. Katy expressed that, receiving support from the learning disability CAMHS intensive support team was the “…best thing that ever happened…”.

The experience of support from adult community learning disability team was noted to be poor, with Iris attributing this to the decline of her child’s mental health. There was a perceived sense from Iris that professionals within the service “…weren’t doing what they should be doing…” to support her child:

“…They weren’t anywhere as proactive as er [intensive support CAMHS]… then it's not going to be the same level of support and sadly, sadly that was probably part of the reason that led to her demise and her erm poor mental health because she needed full-on support from the service to help her cope…as I say, they weren't doing what they should be doing…” (Iris).

Throughout Iris’ recall of her experiences, there was a sense of expectation that when transitioning from an intensive support team to adult community learning disability team, the same level of support should be maintained. Contrastingly, this expectation was not shared by Val whose child transitioned from standard learning disability CAMHS. Her sense-making was centred on the belief that with the transition to adult services, there was a change in the level of support provided once an individual became an adult.

Despite the experience of support received from adult community learning disability team being initially perceived as negative, it was acknowledged that over time, the team had “…done a really fantastic job…” (Iris). Participants also recognised and acknowledged other factors that could have impacted their perceived level of support. For example, limited resources were attributed to some of the negative experiences of support observed. Jacob described here his perception of the impact of lack of resources on the ability to provide support:

“…my suspicion is that they are horribly under-resourced…they have desperately inadequate provision… we get the sense that they're too rushed off their feet and in too much of a state of chaos to provide even a remotely good caring service.” (Jacob).

Making improvements: transparency, preparedness, and cultural and racial sensitivity

Participants expressed the need for better collaboration across learning disability CAMHS and adult community learning disability team during the transition process. Iris described that this would be “helpful”. Similarly, there was a need expressed for professionals and services to take accountability and be transparent in care provision. From his experience, Jacob expressed that if professionals had taken ownership of their mistakes, it would have made his transition experience better. There was a sense that he would not have felt blamed by professionals after voicing his opinion:

“…I think if someone had turned around and said, “look we are really sorry we just don't have anything we'll try and come up with some creative solutions…”…it would have been fine…” (Jacob).

There was an expressed desire for participants to be better prepared for the transition process. Val’s sense-making of the transition experience was positioned in the belief that parents are also transitioning together with their child, thus, parents should be better prepared for it:

“… I know paperwork is ok, but it's it's having those talks. Because as much as your child is transitioning, you're also transitioning, so it's a preparation for both of you… More you because erm you'll be able to support your child better… even though you have those leaflets, it doesn't prepare you” (Val).

The account of Val described the need for this support to be offered through spoken discussions with parents.

Alongside this, Val expressed a need for more cultural and racial awareness within services. There was a strong felt experience for Val on the role her ethnicity played within her interactions with professionals when support was being offered to her adult child.

“…sometimes also our background doesn't help because...as you know, not everybody is as welcoming” (Val).

Past negative experiences with others due to her racial background impacted Val’s ability to trust professionals in treating her adult child indifferently because of their race. Val’s sensemaking reflected the need for professionals and services to be aware of racial and cultural biases that might impact how families engage with services.

Discussion

Summary of findings

The present study explored how parents of young adults, aged 17 to 21, with intellectual disabilities make sense of their experiences of transitioning from learning disability CAMHS to adult community learning disability team. All participants provided an understanding of the experience families go through during transition and provided insight into the impact of social care transition on this process. Participants were able to provide recommendations of what professionals could have done differently, and how services can be better informed to support the transition process. As found by Brown et al. (2019), the health transition process for participants proved to be challenging, with some notable experiences of good transitional care.

Bridges’ transition model (Bridges, 2009) can be used to understand the transition experience of participants within this study. Participants experienced various stresses when ‘ending’ things that were familiar to them in learning disability CAMHS. However, there was no sense of resistance to the changes that were occurring. There was a sense in all participants that the continuous changes experienced brought about feelings of loss and vulnerability as expected when in the ‘neutral zone’ of the transition process. The progression of the transition process, saw participants eventually accepting the changes that came with transition, and adapting to the new identities developed in their parental role and responsibilities.

The theme ‘impact of transition on sense of self’ summarised the impact that transition had on participants. The sense-making of participants centred on the way they perceived their parental role and responsibilities changing following transition and the limited availability of time due to increased demands. Most participants experienced a lack of control around decision making and this impacted how they perceived their parental role following transition. Corresponding with previous literature (Davies et al., 2011; Lawrence, 2018; Lindgren et al., 2016; Schultz, 2013), participants expressed a sense of loss of control and power. This perceived limited control around decision-making could, however, highlight the implementation of the Mental Capacity Act (2005). The experience of decision-making for participants could reflect the process of decisions being made within an MDT in the best interest of their child. Despite parents’ involvement in this process, they may perceive less power over the decisions being made due to them not being the sole decision maker.

In previous research conducted, parents have described having to fight for effective health care after transition and successful outcomes were often dependent on their persistence (Brown et al., 2019). This was a relatable experience for participants in this study. There was a collective sense for participants to be resilient and on guard throughout the transition process.

In the theme ‘making sense of challenges experienced’, participants reported the difficulties experienced with the transition process. Previous research has documented how clinicians’ limited understanding of service structures results in limited coordination between services (Hovish et al., 2012; McLaren et al., 2013). This study also adds to this literature, especially in relation to knowledge around social care housing and accommodation. The perceived lack of professionals’ understanding contributed to the experience of uncertainty and the provision of limited information, as found by Lindgren et al. (2014). However, due to participants’ experience of high staff turnover within social care services, it could be speculated that the experiences of participants with the housing process reflect the lack of specialist social care provision or support to provide appropriate accommodation.

The experience of participants also reflected on the sense-making of participants feeling unheard, and a sense of blame. There was a contrast in how a sense of blame was experienced by participants. On one hand, some participants experienced feeling blamed by services, whilst on the other, blame was shifted on services. It could be speculated that feelings of blame and not being listened to echo a lack of effective communication taking place between parents and service providers.

In the theme ‘wishing for a better service’, the analysis showed the difference in the experience of professional support between learning disability CAMHS and adult community learning disability team. There was a sense for participants that professional support was better provided by learning disability CAMHS. Participants sense-making centred on the need for more support to be provided by adult community learning disability team during and after transition, which corroborated with previous research findings (Clarke and Winsor, 2010; Johansson et al., 2014; Lindgren et al., 2016). However, it should be noted that almost all participants in this study transitioned from the learning disability CAMHS intensive support team. The provision of support within this service may be perceived to be more intensive as the aim of support is to prevent hospital admission. Nonetheless, it was known that two of the participants’ adult children were sectioned under the Mental Health Act (2005) within the timeframe of this study, indicating that the parents were accurate in their experience of lack of support following transition. Similarly, this highlights that for families a gradual level of transition is required to maintain the same level of support previously received. However, it was acknowledged by participants that despite the initial move to adult community learning disability team being difficult and feeling unsupportive, over time the perceived sense of support increased, and participants felt supported.

The analysis of the theme also highlighted participants’ ideas of how services could be improved and things they wished could have been different in their journey. There was a reported need for transparency, accountability, early preparation for parents in terms of transition, and increased racial and cultural awareness within services.

Clinical implications

The understanding of the experiences of participants gathered in this study has implications for services supporting families of individuals with an intellectual disability during transition and when accessing care within adult mental health services. The experience of communication, with participants highlighting feeling unheard, evidence the need for the voices of families to be better considered to ensure a satisfactory experience of services.

The sense-making of professional support within the research highlights a need for improvement in how families are supported throughout transition process. Services should consider how parents are stepped down when transitioning from the learning disability CAMHS intensive support team to regular input from adult community learning disability team. This is important to maintain parents perceived level of support and input from services following transition.

Services need to consider the extra care burdens and responsibilities experienced by families during transition. Professionals should be mindful and more aware of assumptions made that parents may have an informed understanding of processes and the things going on around them. As seen from the findings of this study and previous studies, parents often report a lack of understanding of conversations going on in MDT meetings. Conversations need to be had with parents to induct them into meetings they will be engaging in. Where possible, professionals should share the agenda of meetings with parents beforehand, especially in cases where parents themselves might have a learning disability.

Due to parents feeling that professionals often do not have the relevant knowledge needed of services, there is a need for professionals supporting the transition process to be equipped with knowledge about the different services involved. There may be consideration given to ways to improve transition such as having a transition lead linking both the learning disability CAMHS and the adult community learning disability team. This individual will be able to have the relevant knowledge of both services when supporting transition.

Lastly, having acknowledged the limited cultural and racial diversity that might be experienced within services due to geographical region, there is a high need for professionals to be aware of unconscious biases and lack of knowledge they may have against different races and cultures. These biases may negatively impact the experiences of families when accessing services.

Strengths, limitations and future directions

The key strength of this study was its provision of a voice for an underrepresented population within research, allowing for an understanding of their experience of mental health services. As participants were still accessing support from the adult community learning disability team it captured the ongoing needs of these individuals.

Although participants described many experiences relating to their transition from learning disability CAMHS to adult community learning disability team, their experience also captured transition within social care services. The information captured provided new insight into the role of social care in transition processes. In the context of IPA, it is accepted that participants will select certain events as being of specific significance as these explain how they have developed their understanding of their experience (Lawler, 2008). Resultantly, the experience of social care transition, despite not being the aim of the study, was accepted as how participants have made sense of their lived experiences. It demonstrated how the perceived experience of health services is intertwined with social care services and yet locally, they are commissioned separately. It is, therefore, important to consider how these services could work better together to support a successful transition process for individuals and their families.

The small sample size could be said to be a weakness of the study. Of the eight parents who expressed an interest in the study, only four were able to commit the time for the interviews. This could be a reflection of how the burden within care may have had an impact on parents’ ability to attend to other things outside of their caring responsibilities. Nonetheless, the sample size is consistent with practice in IPA research (Smith et al., 2009). The accounts given by parents had similarities to the findings from related research. Likewise, there was heterogeneity within the sample as it reflects the experiences of participants who were parents of young adults experiencing various complex behavioural, physical and mental health needs, including three who received intensive support from learning disability CAMHS. On the other hand, the sample could be criticised for not having representation from a wider range of racially diverse individuals, however, due to the geographical location of where the research took place, there is less diversity represented. Future research should seek to understand racial impact on transition and experience of service as there may be different cultural expectations and needs amongst ethnic minorities.

Reflexivity and rigour

As a Trainee Clinical Psychologist, the researcher had clinical experiences working with individuals with intellectual disabilities and their families. Through this experience, they developed an awareness of some of the difficulties experienced by these groups of individuals within services. With limited research in the field of learning disability and mental health services, the desire to understand and evidence the experiences of individuals and their families prompted them to explore the transition experiences of these parent groups.

It could be considered that the researcher’s prior experiences could have potentially biased the interpretations of participants’ experiences. However, the researcher’s use of a reflexive research diary and individual supervision enabled them to understand their role and impact within the research, thus leading to increased integrity of the data (Vaismoradi et al., 2013).

As an ethnic minority individual, the researcher was able to relate to some of the racial experiences of a participant within the study who was also an ethnic minority individual. The researcher’s ethnicity could have influenced the participant’s ability to talk about this aspect of their experience. The researcher was able to use their experience and understanding to help them make sense of the participant’s experience within health services.

Conclusion

The findings of this research highlight both the experience of parents transitioning from learning disability CAMHS to adult community learning disability team and transitioning within social care services. It highlights the difficulties faced by parents during the transition process and the impact of limited professional knowledge and support on their transition experience. Future studies seeking to understand the impact of race on transition and the experience of service are needed to provide insight into how families from ethnic minoritised backgrounds can be better supported.

Footnotes

Acknowledgements

The authors wish to thank the participants who participated in this study.

ORCID iDs

Abisoye Sotonwa

Richard Meiser-Stedman

Corrina Willmoth

Ethical considerations

Ethical approval for the study was obtained from the Health Research Authority (HRA) assessment (Project ID: 321907), NHS Research Ethics Committee Review (Reference: 23/NI/0040), and the NHS Trust’s Research and Development. Pseudonyms were given to preserve the anonymity of participants and participants provided written informed consent before starting interviews.

Consent to participate

Respondents gave written consent for participation and an electronic signature before starting interviews.

Consent for publication

Respondents gave written consent for their anonymised information to be published in this article and an electronic signature before starting interviews.

Author contributions

Prof Meiser-Stedman assisted in the interpretation of the data and the revision of the manuscript. Dr Willmoth assisted in the interpretation of the data and contributed to the refining of the themes. They also assisted in the revision of the manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interest

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The data that underlies this research are openly available and accessible on the University of East Anglia Digital Repository.*

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