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Transitions: perspectives of young people and their families

Written by Dr Grace Krause and Dr Beti Thomas, edited by Dr Kat Deerfield and Dr Flossie Caerwynt 

In this evidence summary, we discuss research that looks at transitions from children’s to adults’ social care. We focus on what’s important to young people and their parents and carers in the transition process. 

We look at how social care can support young people’s autonomy during the process and how this increasing autonomy can be challenging for many families.  

We explore the importance of relationships and community to young people and how consistent support can help ease the transition into adult care. We also discuss how young people and their families want more flexibility and better communication in the transition process. 

Finally, we look at the role that parents and carers often take on to compensate for a lack of support. We explore how parents and carers can be supported better, as well as the potential inequalities facing young people who do not have that family support. 

Introduction

Becoming an adult can be challenging for everyone. Most young people at this point think about what kind of life they want and how to achieve it. For young people who access care and support, this can be a particularly difficult time. They have to navigate changes to their support as well as the usual challenges that come with growing up. 

One way to understand the transition from children’s to adults’ social care is to view it as having three different stages (Bridges, 1991; Codd and Hewitt, 2021): 

  1. an ending (leaving children’s social care)
  2. an in-between (moving over to the new situation)
  3. settling in (accessing new support). 

It makes sense that young people and families experience strong emotions throughout all three parts of this transition process. Transition into adult services can be a particularly challenging time, especially because it often means fewer support options. 

Sometimes people describe having to support their children’s transition into adult services as a “second shock” (Hanley-Maxwell et al., 1995), the first shock being the circumstances that led to them accessing support. The end of access to children’s social care causes a loss of relationships and routines. Difficulty finding or navigating appropriate adult services can cause families to feel overwhelmed and anxious about the future. Some parents describe this feeling as “stepping into the abyss or falling off a cliff” (Codd and Hewitt, 2021; see also Health and Social Care Alliance Scotland, 2017; Broad et al., 2017).  

We know from people accessing care and support in Wales that transitions from children’s to adults’ social care are challenging for many families. In our research priority setting exercise, young people and their parents and carers told us they often lacked the information they needed to make informed decisions. They also said it was difficult to find out what services were available and how to access them. This finding is reflected across studies, which also show that more support is needed within adult services for young people transitioning out of children’s services (Shanahan et al., 2020; Jacobs et al., 2021).

Three people having a conversation at a table

About this evidence summary

We’re producing a number of evidence summaries related to transitions from children’s to adults’ social care. These summaries aim to support people working in social care to help put the right support in place for young people experiencing transition. In this evidence summary, we look specifically at what research tells us young people and their families say is important for a good transition into adult services.  

There’s not much research available on what it’s like to transition from children’s to adults’ social care in Wales. That’s why we’ve used a number of sources that look at transitions in different contexts or in different places. From these, we can draw out lessons that might be helpful for those working in social care to ensure young people’s transition into adult services provides the best possible care experience.  

In this summary, we focus on research about young people accessing support for their mental health, young neurodivergent people, and young people with complex needs. There have been a number of studies looking at young people’s transitions into adult services within health care. There are also some studies that look at social care transitions in other countries. Of course, these experiences may not always correspond to the experiences of young people accessing social care in Wales. However, there are some elements within these studies that can help us understand the broader experiences of young people who transition from children’s to adults’ social care in Wales. 

Transition from children’s to adults’ social care in policy and legislation

Although we don’t have specific legislation that refers to this type of transition, we can look at wider policy and legislation for guidance. 

Social Services and Well-being (Wales) Act 2014

The Social Services and Well-being (Wales) Act 2014 regulates the delivery of social care in Wales. The Act’s core principles include: 

  • voice and control – putting the individual and their needs at the centre of their care and giving them a voice in, and control over, reaching the outcomes that help them achieve well-being
  • well-being – supporting people to achieve their own well-being and measuring the success of care and support
  • co-production – people should be involved in decisions about how services they access are developed and run. 

The Act also emphasises that there should be a focus on the individual accessing care and support, and that every person should have easy access to information about their care. 

When a young person moves from children’s to adults’ social care, the Act states that they have a right to ask for a new assessment (Welsh Government, 2015). This is because becoming an adult comes with many changes that could impact on what support someone can access. 

Shaking hands

Young people value having support in different areas of their life beyond the transition process

Seeing the whole person

In order to support young people’s transition into adult social care, it’s important to look at their lives in context. In an international study on transition into adult mental health support, young people emphasised the importance of having support in different areas of their life beyond the transition process (O’Hara et al., 2020).  

Throughout the studies we’ve referenced, young people and their families talk about the challenges of adjusting to new services at a time when so much is changing in their lives. In this evidence summary, we look at a number of things young people and their families say are important to them in the transition process. These are: 

  • autonomy
  • relationships
  • consistency
  • flexibility
  • information
  • support for the whole family. 

First, we explore how to support young people’s autonomy and the complex feelings that may come with it. We then discuss valuing the relationships that are important in young people’s lives. We look at the importance of consistency in care, flexibility in the timings of transitions, and good information about young people’s options. Finally, we discuss the importance of providing support for the whole family. We also look at how young people without family support are particularly vulnerable in the transition process.  

In this evidence summary, we’ve included material that mainly looks at transitions into adult social care from the perspective of young people who have family support. This is because the majority of research on transitions into adult services looks at both young people and their families. However, it’s important to understand that young people without family support are much more likely to fall through the cracks. This may mean they end up in a situation where they cannot access the social care they need, or indeed any form of care. 

Valuing autonomy

For most young people, moving into adulthood means taking responsibility for their own lives. Research shows that young people value support that helps them develop their autonomy. Young people and their families also say they’d like more control over the transition process itself.  

The importance of strengthening autonomy and decision making emerged as a strong theme in a study of 111 people across five countries (O’Hara et al., 2020). The study included people who either transitioned from children’s to adults’ mental health services themselves or had supported a family member through the process. Study participants said that giving young people control over the transition process was important as it helped them engage when they needed further support. They also emphasised the importance of assessing young people based on their individual needs, not just on what diagnosis they had (see also Broad et al., 2017; Culnane et al., 2023).  

One study explored what ideas young people with learning disability had about their futures, and what enabled or stopped them from realising those futures (Singh et al., 2024). The researchers found that young people had many different ideas of what their future should look like. Some wanted more independence and autonomy, while others focused more on wanting to stay close to family. In another study, some young people with mental health support needs described their transition into adult services as an opportunity to take more control over their own care (Broad et al., 2017). Because young people have different aspirations, it’s important for professionals to give them control over their transition process. This means involving young people and their families in decisions made about their care.  

More autonomy for young people entering adulthood can sometimes involve mixed feelings. Parents may have concerns around their children’s growing autonomy and its potential risks. Codd and Hewitt (2021) found that parents of children with a learning disability sometimes worry about their children being vulnerable to different forms of harm as they gain independence. For those providing care and support to young people and their families, it’s important to strike a balance between safeguarding concerns and supporting people’s right to make decisions over their own lives. This tension is also explored in our evidence summary on supporting people to make decisions about their care. 

A person looking at their phone while sitting up in bed

Because young people have different aspirations, it’s important to give them control over their transition process

Valuing relationships

As young people grow up, many expect to reach milestones like further education, getting a job, or leaving home. These journeys look different for every person. When working with people accessing care and support, it’s important to recognise that people may strive for different kinds of lives and futures.  

Jacobs et al. (2021) interviewed social care staff who supported young people with a learning disability in their transition to adulthood. They found that sometimes, professionals working with people who had high support needs focused on certain markers of adulthood without considering what was important to the young person. With some people who have high support needs, it can be hard to understand what their preferences are. This is especially the case when people have communication difficulties. Not every person accessing care and support expresses themselves best through verbal language. 

People with higher support needs can be underrepresented in data that relies on people talking about their lives, especially if the research is limited to collecting information through spoken or written language. We therefore also include research that uses other approaches, such as spending time with young people and observing the transition process, or talking to parents and carers or professionals.  

A group of four people, one raising their hand

Jacobs et al. (2021) argue that it’s important to focus on people’s connections and networks. The researchers observed that friendships were of particular importance to people with learning disabilities. This included connection with key workers. During transitions, they could lose these connections as well as other relationships that were maintained through support from key workers.  

Young people in the study led by Singh et al. (2024) also placed a very high value on relationships. They described struggling with social isolation and loneliness and said that they sometimes struggled to make friends. The lack of support for young people to socialise in adult services was also mentioned by respondents in Shanahan et al.’s (2020) study. Some parents expressed concern that their children were in danger of becoming isolated, or were only enabled to take part in activities that lacked stimulation. 

Valuing consistency

While personal relationships are important to young people in transition, some studies also emphasise the importance of relationships with staff in children family and adult services. Talking and trusting unfamiliar people can be challenging for young people accessing support. Research shows that young people accessing mental health support often see children’s and young people’s mental health services as warm and nurturing. However, they view adult mental health services as more impersonal and cold (Broad et al., 2017; Mulvale et al., 2019). 

One theme that emerges across studies is that it’s hard for families to secure support for their children as they grow up (Care Quality Commission, 2014). In a study in Scotland in 2014, parents said they “felt abandoned” by health and social care services during transition (Care Quality Commission, 2014). They reported having to chase up services constantly, and receiving little follow up from them. High staff turnover rates in social care services can also make transitions harder for young people and their parents and carers (Jacobs et al., 2021; Care Quality Commission, 2014). 

Young people in some studies also shared significant concerns about the possibility of loss of care when they age out of children’s services. They also said that having support from both children’s and adults’ services at the same time for a short while might ease their anxiety (Broad et al., 2017). 

In research about transitions into adult health services, some young people reported that meeting new professionals was challenging and anxiety inducing (Queen’s Nursing Institute, 2017). They suggested that meeting with previous health professionals at the same time as new professionals might reduce that anxiety. One young person in the study talked about having one designated nurse from children’s services support them through all their transition appointments. They reported that having this continued involvement made them feel more confident about the process (Queen’s Nursing Institute, 2017).  

There were some reports of positive experiences with “transition meetings” where young people and their parents or carers met with both children’s and adults’ services to discuss a handover. These joint meetings can be difficult to organise logistically, but young people and their families report valuing them highly (Shanahan et al. 2020).  

Stairs

Having support from both children’s and adults’ services at the same time for a short while might ease young people’s anxiety

Valuing flexibility

The literature also highlights that young people and their families can struggle with the abrupt transition into adult service. 

One study found that young neurodivergent people and their parents were concerned about the age at which transitions happen (Shanahan et al., 2020). Many described the move to adult services at 18 as extremely sudden and said a more gradual transition would have been helpful.

Young people with mental health issues can find this particularly difficult as many mental health conditions first emerge in adolescence. This means they have limited time to become familiar and comfortable with their support before they then transition into adult care (O’Hara et al., 2020). 

Similarly, Beresford et al. (2013) found that parents of young autistic people had concerns about the age of transition and whether this was appropriate for every young person. They felt the presence of developmental delays meant some young people might be better supported within children’s services for longer. 

Shanahan et al. (2020) suggest widening the transition time frame from an abrupt transition at age 18 to a process taking place between ages 16 to 20. As a wider time frame could reduce some sudden changes, this could help avoid unnecessary stress. 

Broad et al. (2017) also note that young people transitioning into adult mental health services valued gradual transitions that were adapted to their individual needs. They also emphasised the need for individual health plans, which allowed for some level of parallel care or joint working between child and adult mental health services.  

Valuing information 

Good information around transitions can refer to different things, such as: 

  • providing accessible information to help people make informed decisions
  • individuals’ right to access their own information
  • sharing information ethically between services. 

Research about care transitions shows that some young people struggle to make informed decisions about their future because they do not fully understand the process (Broad et al., 2017). Even when they were involved in the process, some said that they did not understand what professionals were saying (Broad et al., 2017; O’Loughlin, 2012). 

Information about young people held by services is also important. In Singh et al.’s (2024) study with people with a learning disability, young people often had ideas about their futures but felt that information about their options was not accessible.  

Some young people said transitions were more distressing because they had to repeat their story to new professionals. Better information sharing and joint meetings can make it easier for young people to access care and support without needing to revisit stressful or upsetting conversations (Broad et al., 2017). 

A game of tug of war with three people on one side and one person on the other side

Parents often feel they have to step in to organise their children’s care

Valuing support for the whole family

Family support plays a big role in making sure young people’s transitions go well. It’s important to recognise the hard work of many parents and carers in securing support for their children. It’s also important to make sure that the needs of parents and carers are also being met. At the same time, some young people do not have family support, or their families are less able to organise support. 

Family support can be particularly important for young people with a learning disability. In the UK, 40 per cent of people with a learning disability live with family or friends who provide care and support for them (Hatton et al., 2016).  

In research with family carers, some report that the work they do to organise support services for their family member can be particularly distressing (Griffith et al., 2011, Hassall et al., 2005, Codd and Hewitt, 2021). In research on young neurodivergent people and transitions, Shanahan et al. (2020) found that parents often felt they had to step in to organise their children’s care. This happened because the support their children needed to manage transition was simply not available. 

Parents described needing to secure access to care as extremely stressful and put them in danger of “burning out”. They reported difficulties finding available support as well as finding out how to access it. Similarly, parents of children with severe learning disabilities had to advocate strongly on behalf of their children to get any kind of support. They also expressed concern about young people who did not have parents advocating for them. They questioned whether this would mean those young people simply would not be able to access the support they needed (Jacobs et al., 2021; Commission for Social Care Inspection, 2007). Some parents also reported having to pay privately for their children to access support, or to have their own support needs met (Codd and Hewitt, 2021). This can create a significant financial burden on parents and carers.  

There are many things that can complicate support for a young person and their family. As Shanahan et al. (2020) point out, things can get complicated when a young person’s desire for independence conflicts with how a parent or carer advocates on their behalf. And young people who do not have the support of a parent or carer at all may be at a serious disadvantage. 

Conclusion

Every young person in Wales deserves to access care and support that will allow them to have the kind of life they want to lead. This means different things for different people, and it’s important that we listen to the voices of young people and their families.  

Becoming an adult is a difficult phase in most people’s lives, and everyone faces different challenges. Young people accessing care and support may face additional and more complex challenges than other young people. But social care can also support young people to live lives that are meaningful and successful on their own terms. Focusing on what’s important to young people and their families can help make sure that transitions from children’s to adults’ social care are as supportive and positive as possible.  

Additional reading

Here is a list of the five most relevant resources on transitions from the perspective of young people and their families that are either open access or freely available on the NHS Wales e-Library. 

  1. Broad K.L., Sandhu V.K., Sunderji N. and Charach A. (2017) ‘Youth experiences of transition from child mental health services to adult mental health services: a qualitative thematic synthesis’, BMC Psychiatry, 17 (380), doi:10.1186/s12888-017-1538-1, available at https://doi.org/10.1186/s12888-017-1538-1.
  2. Culnane, E., Efron, D., Williams, K., Marraffa, C., Antolovich, G., Prakash, C. and Loftus, H. (2023) ‘Carer perspectives of a transition to adult’ care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities’, Child: Care, Health and Development, 49 (2), pp. 281-291, doi:10.1111/cch.13040, available at https://doi.org/10.1111/cch.13040.
  3. Hanley-Maxwell, C., Whitney-Thomas, J. and Pogoloff, S. M. (1995) ‘The second shock: A qualitative study of parents’ perspectives and needs during their child’s transition from school to adult life’, Journal of the Association for Persons with Severe Handicaps, 20 (1), pp. 3-15, doi:10.1177/154079699502000102, available at https://doi.org/10.1177/154079699502000102.
  4. Jacobs, P., Quayle, E., Wilkinson, H. and MacMahon, K. (2021) ‘Relationships matter! — Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities’, British Journal of Learning Disabilities, 49 (3), pp. 329-340,doi:10.1111/bld.12380, available at https://doi.org/10.1111/bld.12380 .
  5. Singh, N., Justice, M., Melton, S., Kelly, A., Richards, B. and Loveridge, B. (2024) ‘Moving On Project: Exploring the experiences of young people with a learning disability as they move into adulthood’, available at https://movingon.blogs.bristol.ac.uk/about/ (accessed: 9 July 2025). 
References - click to expand

Beresford, B., Moran, N., Sloper, T., Cusworth, L., Mitchell, W., Spiers, G., Weston, K. and Beecham, J. (2013) Transition to adult services and adulthood for young people with autistic spectrum conditions, Social Policy Research Unit, University of York, available at https://www.york.ac.uk/inst/spru/pubs/pdf/TransASC (accessed: 10 February 2026). 

Bridges, W. (1991) Managing Transition: Making the Most of Change, Massachusetts, Addison-Wesley. 

Broad, K.L., Sandhu, V.K., Sunderji, N. and Charach, A. (2017) ‘Youth experiences of transition from child mental health services to adult mental health services: a qualitative thematic synthesis’, BMC Psychiatry, 17 (380), doi:10.1186/s12888-017-1538-1. 

Care Quality Commission (2014) From the pond into the sea – Children’s transition to adult health services, available at https://www.cqc.org.uk/sites/default/files/CQC_Transition%20Report.pdf (accessed 10 February 2026) 

Codd, J. and Hewitt, O. (2021) ‘Having a son or daughter with an intellectual disability transition to adulthood: A parental perspective’, British Journal of Learning Disabilities, 49 (1), pp. 39-51, doi:10.1111/bld.12327. 

Commission for Social Care Inspection (2007) Growing Up Matters: Better transition planning for young people with complex needs, available at https://www.bipsolutions.com/docstore/pdf/16064.pdf (accessed: 5 September 2025). 

Culnane, E., Efron, D., Williams, K., Marraffa, C., Antolovich, G., Prakash, C. and Loftus, H. (2023) ‘Carer perspectives of a transition to adults care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities’, Child: Care, Health and Development, 49 (2), pp. 281-291, doi:10.1111/cch.13040. 

Griffith, G. M., Hastings, R. P., Nash, S., Petalas, M., Oliver, C., Howlin, P. and Tunnicliffe, P. (2011) ‘”You have to sit and explain it all, and explain yourself.” Mothers’ experiences of support services for their offspring with a rare genetic intellectual disability syndrome’, Journal of Genetic Counselling, 20, pp.165-177, doi:10.1007/s10897-010-9339-4. 

Hanley-Maxwell, C., Whitney-Thomas, J. and Pogoloff, S. M. (1995) ‘The Second Shock: A Qualitative Study of Parents’ Perspectives and Needs during Their Child’s Transition from School to Adult Life’, Journal of the Association for Persons with Severe Handicaps, 20 (1), pp. 3-15, doi:10.1177/154079699502000102. 

Hassall, R., Rose, J. and McDonald, J. (2005) ‘Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support’, Journal of Intellectual Disability Research, 49, pp. 405-418. doi:10.1111/j.1365-2788.2005.00673.x. 

Hatton, C., Glover, G., Emerson, E. and Brown, I. (2016) People with learning disabilities in England 2015: Main report, Public Health England, available at https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england-2015 (accessed: 10 February 2026). 

Health and Social Care Alliance Scotland (2017) Experiences of Transitions to Adult Years and Adult services, available at https://www.alliance-scotland.org.uk/wp-content/uploads/2017/11/ALLIANCE-GIRFEC-Experiences-of-Transitions-to-Adult-Years-and-Adult-Services-2017-1.pdf (accessed: 29 August 2025). 

Jacobs, P., Quayle, E., Wilkinson, H. and MacMahon, K. (2021) ‘Relationships matter! — Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities’, British Journal of Learning Disabilities, 49 (3), pp. 329-340, doi:10.1111/bld.12380. 

Mulvale, G. M., Nguyen, T. D., Miatello, A. M., Embrett, M. G., Wakefield, P. A. and Randall, G. E. (2019) ‘Lost in transition or translation? Care philosophies and transitions between child and youth and adult mental health services: a systematic review’, Journal of Mental Health, 28 (4), pp. 379-388, doi:10.3109/09638237.2015.1124389. 

O’Hara, L., Holme, I., the MILESTONE Consortium, Tah, P., Franic, T., Vrljičak Davidović, N., Paul, M., Singh, S. P., Street, C., Tuomainen, H., Schulze, U. and McNicholas, F. (2020) ‘A cross-cultural qualitative study of the ethical aspects in the transition from child mental health services to adult mental health services’, Child and Adolescent Mental Health, 25 (3), pp. 143-149, doi:10.1111/camh.12377. 

O’Loughlin, S. (2012) ‘The transition from child and adolescent to adult services in eating disorders: a qualitative study of service user and carer perspectives’, PhD Thesis, University of Glasgow. 

Shanahan, P., Ollis, L., Balla, K., Patel, R. and Long, K. (2021) ‘Experiences of transition from children's to adult's healthcare services for young people with a neurodevelopmental condition’, Health and Social Care in the Community, 29 (5), pp. 1429-1438, doi:10.1111/hsc.13198. 

Singh, N., Justice, M., Melton, S., Kelly, A., Richards, B. and Loveridge, B. (2024) ‘Moving On Project: Exploring the experiences of young people with a learning disability as they move into adulthood’, available at https://movingon.blogs.bristol.ac.uk/about/ (accessed: 9 July 2025). 

The Queen’s Nursing Institute (2017) Young Peoples’ Transition project: Focus Group Summary, available at https://qicn.org.uk/wp-content/uploads/2017/02/Child_to_Adult_Focus_Groups_Report.pdf (accessed: 5 September 2025). 

Welsh Government (2015) Social Services and Well-being (Wales) Act 2014: Part 3 Code of Practice (assessing the needs of individuals), available at https://www.gov.wales/sites/default/files/publications/2019-05/part-3-code-of-practice-assessing-the-needs-of-individuals.pdf (accessed: 5 September 2025).