This is a summary of the paper published in CAMH – Stewart et al. Navigating an unfamiliar world: how parents of young people who self‐harm experience support and treatment. Child and Adolescent Mental Health doi: 10.1111/camh.12205
Self-harm is a common reason for contact with clinical services, however to date there is very little research focused on parents’ perspectives of care following self-harm. Findings from community studies indicate that the impact on families can be devastating. In this study we explored how parents of young people who self-harm experience support and treatment and aim to generate information for parents and clinicians to help them navigate through this experience.
The study was part of a wider qualitative investigation exploring parental views on self-harm. Semi-structured interviews were conducted with 37 parents of 35 young people who had self-harmed at any point in the past. The majority of the young people were daughters and 20 of them had been admitted to hospital (either general or psychiatric). Interviews consisted of an open-ended section where parents were able to describe their experience followed by prompts on specific areas. Interviews were transcribed and analysed using a modified grounded theory, identifying key themes.
Participants described a range of reactions to treatment and support for themselves and the young person. We identified three main themes: attitudes towards the young person, practical aspects of help and the need for parents to be involved.
Attitudes towards the young person
Many parents described the importance of the professionals’ attitude towards their child, ranging from very helpful and caring approaches to a judgemental approach which was experienced as very distressing. Less positive attitudes were described, particularly if self-harm had occurred on more than one occasion.
Parents described that the experience of assessment, could be felt as an interrogation or a “tick-box exercise” that may make it hard for the young person to open up. Others described how the young person was not always taken seriously. When the young person was taken seriously, this was considerably reassuring for the parent. Many parents described the importance for the young person of building up a relationship with the clinician. This made all the difference to engagement.
“The CPN is very very honest with her and ……she won’t buy into what she’s saying. She will challenge her. Sometimes it doesn’t go down very well, as you can imagine. Sometimes she’s very angry with her (CPN) but on the whole, they have a trusting good relationship and that’s really important…..It’s quite important for my peace of mind as well as hers.” Joy.
Practical aspects of help
Parents reported on practical aspects to treatment, including access to care, and the location, frequency, intensity and continuity of care. Prompt access to care was described as very important but did not always happen. Intensive support early on made a huge difference to parents. Those that had the support of a crisis team at the beginning of treatment found this immensely helpful. Many parents wanted very practical advice on how to respond to the young person, and appreciated information sheets and web resources when these were available. The main psychological treatments for the young people described by parents were cognitive behavioural therapy and dialectical behaviour therapy. These were both seen as offering the young person practical tools to manage. There were mixed reactions to the use of medication, some parents finding this helpful for the young person, others feeling that it made things worse.
“…you’re very fragile, very vulnerable, you’re not thinking straight, you don’t … know what to do. We needed somebody to sit down and talk to myself, my husband, my oldest daughter and say “right, this is what you’ve got to do”. Don’t give us any choices, just say “ right, our experience tells us that this is what you should do, one, two , three.” Jacqueline.
Many parents talked about the importance of families being involved, in order to support the young person effectively and to be able to provide information for the clinicians. Support for parents was seen as crucial by many parents who reported feeling uncertain what to do and wanting clinical support. Some parents felt there was not enough help for parents. Others described how useful a parents group could be, where parents could share ideas with others and receive mutual support. Parents talked about the need to speak to a clinician on their own, particularly in the early stages of care. A strong theme was the need for clinicians to listen to parents and involve them in care.
This quote from a parent encapsulates this view.
“Clinicians, please talk to carers Don’t exclude us. We’re part of the solution. We may be part of the problem. I think often clinicians’ perception, certainly in my experience can be that you are part of the problem. Well. I may be, but actually if you help me out, I can maybe be part of the solution too.” Nadine.
Overall, parents felt unprepared for the task of caring for a young person following self-harm and appreciated support to help them navigate this unfamiliar world.
Early intensive help, was seen as crucial in helping parents manage their child’s behaviour, including advice on practical strategies and access to written information. A major theme was the need to feel listened to and involved. Parent forums were seen as a useful way of providing support and information.
The wider qualitative project of which this study was a part has led to the creation of a healthtalk.org website for parents/carers, giving them access to views and experiences of other parents, including tips on how to help. This is accessible at the healthtalk website.