The experience of engaging with mental health services among young people who hear voices and their families: a mixed methods exploratory study

BACKGROUND: Research shows us that auditory hallucinations or ‘hearing voices’ may be more common than previously thought, particularly in childhood and adolescents. Importantly, not all individuals are affected negatively by their voice hearing experiences, yet child and adolescent mental health services (CAMHS) have traditionally understood voice hearing as a symptom of psychosis and severe mental illness, with implications for the way interventions are offered. The purpose of the present study was to gain an understanding of how young people who hear voices and their families find engaging with mental health service, and to better understand their experience of mental health professionals. METHODS: A two-stage, mixed methods study was used. In the first stage, semi-structured interviews were carried out with two young people and their parents who had engaged with mental health services, and the collected data were analysed using Interpretative Phenomenological Analysis (IPA). In the second stage, a questionnaire was designed to test the generalizability of the themes arising from the first stage, and was completed online by 32 young voice hearers and 27 parents. RESULTS: IPA analysis produced 4 themes: (1) The struggle to understand the hearing voices phenomenon; (2) Battle with the Mental Health Services; (3) ‘Stuck in a limbo’; and (4) The wish for a more holistic approach from mental health services and professionals. The survey partially confirmed the findings of study one, with young people and parents finding useful information difficult to come by, and many reported feeling lost in CAMHS. Additionally, young voice hearers and parents often felt not listened to, and many parents expressed the need for a holistic care, whilst young people wanted a more normalizing and less stigmatizing experience. CONCLUSIONS: Young people and their families had varying experiences of mental health services. Whilst the survey showed that some young people and their families had more positive experiences, many expressed dissatisfaction. To fulfil the needs of young people and their families, mental health services would benefit from developing alternative approaches to voice hearing and running support groups that could form part of a ‘normalising’ and ‘holistic care’ package. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-014-0527-z) contains supplementary material, which is available to authorized users.