The Impact of an At-Risk Mental State Service on Parents/Carers
Research type
Research Study
Full title
The Impact of an At-Risk Mental State Service on Parents' and Carers' Experiences: An IPA Exploration
IRAS ID
349108
Contact name
Charlotte Fowell
Contact email
Sponsor organisation
University of Staffordshire
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
The research aims to explore the experiences of parents and carers of young people 14–25 receiving support from an At-Risk Mental State (ARMS) service and its impact on carer wellbeing.
The ARMS criteria identify individuals at high risk for developing psychosis (Yung, 1996). The criteria are characterised by low-level "psychotic-like symptoms" such as hearing voices, paranoia, and unusual beliefs, which cause distress, facilitating even earlier early intervention in psychosis (Yung et al., 1998).
ARMS services provide personalised care plans, including assessment, ongoing support for patients and families/carers, specialist psychological interventions, medical advice, practical support, social activities, assistance in accessing other services for improved wellbeing, and ongoing support from a key worker.
The study will involve an ARMS service located within the North Staffordshire Combined Healthcare Trust. Participants will be asked to participate in a 60-90 interview about their subjective experiences supporting their young person with an ARMS.
Research on parent and carer experiences in individuals with ARMS is limited, despite their crucial role in recovery. Hinojosa-Marqués et al. (2022) observed a neglect of the psychological needs of parents/carers during the ARMS period, underscoring the need for further research to comprehend the impact of ARMS on their psychological wellbeing. Despite significant literature on the views of parental/carer experience of psychosis, the experience of parents/carers of ARMS is still under-researched. The UK has conducted limited qualitative research on parents' and carers' experiences of ARMS services, which includes pathways into care, service involvement, and their needs throughout this process.
The study's goals are to learn more about these experiences and processes, find ways that services can help parents and carers more, and investigate the referral and assessment process, the effects of the help provided by an ARMS service, and the needs of parents and carers throughout the process.Lay Summary of Results:
Supporting a Young Person Through an At-Risk Mental State (ARMS) Service: Summary
Thank you to everyone who took part in this research and shared their experiences so openly. This summary is based on what you generously shared.
In this summary, “carer” means parents and other family members who supported the young person.
It may also be helpful for ARMS staff, NHS teams, and other professionals working with young people and families.
At-Risk Mental State, or ARMS, is a term used when a person is having experiences or changes that may mean they are at higher risk of developing psychosis. This can include unusual thoughts, unusual perceptions, or changes in how they are coping day to day. Being under an ARMS service does not mean that a person will definitely develop psychosis. It means that support may be helpful at an earlier stage (Yung et al., 1998). This stage can be confusing for people and families. The changes may be worrying, but not always easy to recognise or understand. Families may be unsure when concerns are serious enough for specialist support, and access to help can vary (Strelchuk et al., 2023). The word “risk” can also feel uncertain because ARMS refers to possible future vulnerability, rather than a clear diagnosis (Welsh, 2013). Carers often play an important role. They may be the first to notice changes, offer day-to-day support, encourage their young person to seek help, and speak with services. Research has shown that carers can feel unsure, under-supported, and affected in their own wellbeing while supporting someone under ARMS care (Izon et al., 2019; Parratt et al., 2021). There is still limited research focused on carers’ own experiences of ARMS services, including what support feels helpful and what carers need for themselvesThe study aimed to understand what it was like for carers to support a young person before and during their time with an NHS ARMS service. It explored the pathway into support, including referral and assessment, what ARMS support felt like once it was in place, how these experiences affected carers’ wellbeing, and what support carers felt they needed.
How was the research completed:
Step 1: The study was reviewed and approved by the University of Staffordshire, the NHS Health Research Authority/Research Ethics Committee, and the participating NHS Trust. This helped ensure the research was safe, appropriate, and carefully planned.
Step 2: Participants were recruited through one community-based NHS ARMS team. ARMS staff identified carers who met the study criteria and provided them with an information pack.
Step 3: All participants gave written consent before taking part. Verbal consent was checked again before the interview started. Participants were given pseudonyms, and identifying details were removed.
Step 4: Interviews took place by video call, telephone, or face-to-face. They were recorded and transcribed.
Seven carers took part. They were aged 21 to 65 and included mothers, a father, a sister, and a grandmother. The young people they supported were aged 14 to 22, although the study was open to carers supporting a young person aged 14 to 25. Most participants were women and White British, although some ethnic diversity was represented. The young people had been under the ARMS service for at least six months.
Carer input was included at different points in the project. Before the interviews began, ARMS staff and an ARMS volunteer with carer experience were invited to review the interview questions. After the analysis, participants were invited to comment on a summary of the final themes. Two people responded and described the themes as reflecting their experiences. Thank you also to those who reviewed a draft of this summary and shared feedback to help make it clearer and more useful. This helped keep carers’ voices close to how the study was planned, understood, and shared.
The interviews were analysed using Interpretative Phenomenological Analysis (IPA). IPA is a way of looking closely at how people make sense of important experiences in their lives (Smith et al., 2022). Each interview was read and listened to several times. Notes were made about what carers said, the words they used, the feelings they described, and what their accounts seemed to mean. Each person’s interview was looked at in detail before looking across all the interviews for shared patterns and differences. The analysis involved two layers of understanding. Carers were making sense of their own experiences, and the researcher was trying to understand what those experiences meant. A reflective diary and supervision were used to help keep interpretations close to what carers had shared.
When the interviews were analysed, three main themes were developed. Each theme included smaller subthemes, which helped show different parts of carers’ experiences. Short quotes are included to illustrate what they shared. In quotes, [YP] is used where the young person’s name has been removed.
Theme 1: “Something’s Wrong”: Finding a Way Into Support This theme was about the early part of the journey. Carers often felt that something was wrong, but it was hard to understand what was happening or how serious it was. Some first tried to explain the changes through more familiar ideas, such as the teenage years, physical health, or stress. This did not mean carers were unaware. Many were trying hard to make sense of changes that felt confusing, frightening, or hard to name.
“Looking back, I was wondering whether maybe some of what was going on was all about … the difficult teenage years … I think I put a lot of stuff down to that … And I kept thinking, oh, I can’t wait for this bit to be over and I can have my boy back.” (Winnie)
For many carers, support was reached only after things had got worse. Some described contact with crisis services, hospital attendance, or needing to name risks such as self-harm or hearing voices before help moved forward.
“As soon as I mentioned … the self-harm and the voices, they were really, really quick at getting everything going.” (Lola)
Getting help could feel stressful and hard work. Carers described repeating concerns, pushing for help, and trying to show how serious things were before support started.
“I was going back and forth with CAMHS at that time after first seeing the GP. The GP gave us some leaflet. So we self-referred to CAMHS and that was back and forth. They didn’t want to accept [YP]. So I think we were rejected about three times before CAMHS agreed.” (Washington)
Theme 2: “There Wasn’t a Time You Could Fully Relax”: Carrying the Weight of Care This theme was about the emotional and practical weight carers carried. Many described feeling worried much of the time. They were often thinking ahead, watching for signs that things might get worse, and trying to keep their young person safe. For some, this affected sleep, work, family routines, and whether they felt able to leave the house.
“I was worried all the time and I was like on edge. What’s it going to be like today? What’s going to happen to trigger him into something? ... and I was like anxious all the time thinking … oh my God, no, not again.” (Nora)
Some carers described safety routines that became part of everyday family life. This could make it very hard to rest or switch off.
“Every single night, we have to put an object by her door … we still do it now. So it was really impacting on everybody, our sleep. And sometimes too … we have to even watch when she’s asleep because we were so scared she might act on what she was saying.” (Washington)
Carers also spoke about putting their own needs to one side. At times, their focus was so strongly on the young person’s safety and wellbeing that there was little space to think about how they were coping.
“It’s [YP]. [YP] needs the help … I haven’t got time to talk about myself. I need to get him help … all I got in my head at the time was I need to keep my son alive.” (Anna)
Some carers also felt alone or unable to speak openly. This could be because of privacy, stigma, fear of judgement, or worry about how others might see the young person.
Theme 3: “They Also Had My Back”: Feeling Less Alone This theme was about what changed when ARMS support felt helpful. Carers often described ARMS as different from what had come before. It was not only that support was available. Carers felt listened to, taken seriously, and included as people who were also affected by what was happening.
“Before, we had nobody, it was just us as a family, there wasn’t nobody else there. We aren’t professionals, so we didn’t know what was going on.” (Lola)
For some carers, ARMS support helped them feel that responsibility was being shared. They were still very involved, but they no longer felt quite so alone with it.
“Before joining [ARMS team], obviously it was just mainly me talking to her, trying to support her. But having [ARMS keyworker] and obviously [ARMS team], it just felt like they also had my back as well … it just felt like a part of that responsibility had been taken off of me.” (Vani)
ARMS support also helped carers understand more about what their young person was going through and feel more confident in how to respond. This mattered because some carers worried that they might say or do the wrong thing, even when they were trying to help.
“I’ve had reassurance that I’ve been doing and saying the right things and I’m not making a terrible mess of everything … just to be validated that I’m not messing it up, really, I think it’s been really helpful.” (Winnie)
Carers also described hope beginning to grow. This did not mean that everything was fixed. Hope was often cautious. Things could feel more settled, lighter, or more manageable, while worries about the future still remained.
“We just feel like … a normal loving family … we have the fallouts of just daft stuff … I just feel lighter.” (Matilda)
The findings show that many carers were doing a lot before support was fully in place. They were noticing changes, trying to understand what was happening, looking for help, managing worry, and often putting their own needs to one side. Feeling unsure, frightened, tired, or overwhelmed was understandable. These feelings did not mean carers were doing something wrong. They showed how hard it can be to support a young person when there is risk, uncertainty, and no clear answer about what will happen next. Carers’ needs matter too. Carers may benefit from asking services for clear information about ARMS, what to do when their young person is distressed, who to contact in a crisis, and what support is available for them. It may also help carers to have space to talk about their own wellbeing.
The findings suggest that carers should be recognised earlier. This includes listening carefully when families first raise concerns, even when the young person’s difficulties are unclear or do not yet fit neatly into a service pathway. Awareness of ARMS may need to reach beyond specialist teams, so that schools, colleges, GPs, CAMHS, and other services that families may contact early on have clearer language for recognising possible risk. Services should also think about whether “early” support feels early enough to families. Some carers had already managed crisis, self-harm concerns, hospital contact, or long periods of worry before reaching ARMS support. Referral routes need to be clear, and carers’ concerns need to be taken seriously before difficulties escalate. Carers should be included from first contact as people affected in their own right, as well as people who hold important information about their young person. This means offering clear explanations about ARMS, practical guidance on how to respond to distress, and regular chances for carers to talk about their own worries and wellbeing. Support should be offered proactively. Some carers found it hard to speak openly because of stigma, privacy, fear of judgement, or not knowing what they were allowed to say. Services may need to keep checking in rather than waiting for carers to ask for help. Finally, support should not end suddenly. Carers in this study described hope growing, but uncertainty remained. Planned endings, gradual step-down, and clear information about what happens next may help carers feel less alone after ARMS support reduces or ends.
The study looked closely at carers’ experiences, which is an area where there is still limited research. There were also some limits. It took place in one NHS ARMS service, so findings may not reflect other services. All carers had a young person who had accessed and stayed under ARMS care, so less is known about families who never reached services, left early, or declined support. The sample was small and not very diverse, with most carers being women, White British, and parents. Most young people were in mid-adolescence, so the findings may fit less well with older ARMS groups.
More research is needed on what carers need from ARMS services and what kinds of support help most. Future studies could include carers from different ARMS services and a wider range of families, including fathers, partners, and people from different cultural backgrounds. It would also be helpful to follow carers over time, from early help-seeking through to support ending, to understand how their needs change. Future research could also look at which family-focused approaches help carers manage risk, feel more confident, and live with ongoing uncertainty.
This study showed that carers played a key role in the ARMS pathway but were not always recognised or supported in that role. When ARMS support worked well, carers felt listened to, included, and less alone. Supporting the young person also means recognising and supporting the people around them.
References
Izon, E., Berry, K., Law, H., Au-Yeung, K., & French, P. (2019). “I don’t know how to fix it and sometimes it’s so overwhelming” identifying the barriers and facilitators for family caregivers supporting someone at high-risk of psychosis: A qualitative study. Psychosis, 12(1), 57-67. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fdoi.org%252F10.1080%252F17522439.2019.1688858%2FNBTI%2F71-HAQ%2FAQ%2Fc8b464ae-89f4-4065-8467-5b41d1c82894%2F1%2Fo0-OTYGVuf&data=05%7C02%7Csurrey.rec%40hra.nhs.uk%7C7760cbf042f84a5a143008defa11cc31%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639223151508038409%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=N994O5e%2BHj4ojOxlHbukEXnUdU%2Ft0Mb1sAWyYdMzEWI%3D&reserved=0
Parratt, G., Sanderson, C., Gupta, A., & Bradbury, G. (2021). An interpretative phenomenological analysis of parents’ experience of making sense of at risk mental state. Psychosis, 13(2), 119-129. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fdoi.org%252F10.1080%252F17522439.2020.1830154%2FNBTI%2F71-HAQ%2FAQ%2Fc8b464ae-89f4-4065-8467-5b41d1c82894%2F2%2FTgfG2yzXkd&data=05%7C02%7Csurrey.rec%40hra.nhs.uk%7C7760cbf042f84a5a143008defa11cc31%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639223151508064483%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=7us%2BwrWCwWoFnBboymMZyTde%2B0pCv7JilmcOw3smul8%3D&reserved=0
Smith, J. A., Flowers, P., & Larkin, M. (2022). Interpretative phenomenological analysis: Theory, method and research (2nd ed.). SAGE.
Strelchuk, D., Wiles, N., Derrick, C., Zammit, S., & Turner, K. (2023). The identification and management of people with an at‐risk mental state (ARMS) for psychosis in primary and secondary care services: A qualitative interview study. Early Intervention in Psychiatry, 17(11), 1116-1124. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fdoi.org%252F10.1111%252Feip.13412%2FNBTI%2F71-HAQ%2FAQ%2Fc8b464ae-89f4-4065-8467-5b41d1c82894%2F3%2FHbqBo4D1Oj&data=05%7C02%7Csurrey.rec%40hra.nhs.uk%7C7760cbf042f84a5a143008defa11cc31%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639223151508080538%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=BZmLYEFBoT82YIWsPDF2a9eQMgGx0GRczPrbmPuQVUQ%3D&reserved=0
Welsh, P. R. (2013). The at-risk mental state (ARMS) for psychosis in children and adolescents [Unpublished doctoral dissertation]. Durham University.
Yung, A. R., Phillips, L. J., McGorry, P. D., McFarlane, C. A., Francey, S., Harrigan, S., Patton, G. C., & Jackson, H. J. (1998). Prediction of psychosis. British Journal of Psychiatry, 172(S33), 14-20. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fdoi.org%252F10.1192%252Fs0007125000297602%2FNBTI%2F71-HAQ%2FAQ%2Fc8b464ae-89f4-4065-8467-5b41d1c82894%2F4%2F2xptTtpbNa&data=05%7C02%7Csurrey.rec%40hra.nhs.uk%7C7760cbf042f84a5a143008defa11cc31%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C639223151508459676%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=s0ZCbmPDkCN1Uwqk84nwvG6yfrxiQ7oD3Y4wStY26go%3D&reserved=0Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: N/A
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Pending
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected: 30/10/2026
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: Yes
If yes, describe and/or provide URLs to materials shared and how they were shared: An Executive Summary has been emailed to all participants
If pending, date when feedback is expected:
If no, explain why they haven't:
Have you enabled sharing of study data with others?: Yes
If yes, describe or provide URLs to how it has been shared: Executive Summary send to the R&D lead and of the participant Trust and participating service. - Study will also be submitting for publication
If no, explain why sharing hasn't been enabled:
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: N/A
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London - Surrey Research Ethics Committee
REC reference
25/PR/0965
Date of REC Opinion
1 Aug 2025
REC opinion
Further Information Favourable Opinion