The length of time between onset of psychotic experience and support being offered by mental health services is referred to as the duration of untreated psychosis (DUP).
A meta-analysis published in Br-J-Psych last year (Penttilä, 2014) has suggested that there is a small correlation between increasing DUP and worsening outcomes over time. This small correlation, and the idea of withholding treatment, obviously mean that studies to demonstrate the efficacy of reducing DUP are not practical. However it can clearly be argued that if an individual is suffering with distressing psychotic experiences that early treatment and support represent a moral good in their own right. Reducing DUP has become a target for many mental health services.
The experience of psychosis is a complex phenomenon which is influenced by a myriad of personal and group psychological factors. Help-seeking in relation to psychotic experience is similarly complicated, and greater understanding of the manner in which individuals interact with families, communities and potential sources of support is needed.
In an effort to address this issue Connor (2014) and colleagues present their findings from a recent study seeking to explore the experience among families who sought help in relation to psychotic experiences, but for whom DUP was prolonged. The authors’ aims were:
- To examine the help-seeking narratives of families experiencing first episode psychosis (FEP)
- To explore families experience of first help seeking contact with their GP when seeking support for FEP
- Participants were approached if they had greater than 12 months DUP
- Recruitment targeted family dyads whereby individual carers (author description) and clients both participated in the study
- Semi-structured interviews were conducted with participants individually
- Interviews focussed on questions relating to what prevented the family from seeking help, whom help was sought from and the experience of accessing GP supported care and assessment
- Analysis followed an approach known as framework analysis – wherein interviews are assessed in terms of their thematic content, with significant themes being identified and formed into a framework to describe the findings
- Experiences refuting the overall framework were sought by researchers
- The researchers were not involved in the clinical care of the participants
- 14 client and family member pairs were interviewed
- The ethnicity of participants was South Asian (7), White (4), Black (3)
- Average client age was 25.6 years
- 10 of the clients interviewed were male
- 11 of the clients lived with their families, 3 lived alone
Significant thematic findings are summarised below:
- Withdrawal – “he wouldn’t talk to anyone”
- Participants described efforts to isolate themselves from others, and a general withdrawal of the client from their family members. This isolation risked the development of discussion within families that were hidden from the client.
- Normalisation – “she’s going through a teenage phase…”
- Efforts to normalise family experience in the face of psychosis were described – allowing behaviours to be seen as normal, but also avoiding confrontation with ideas of distress, or disorder. Controllable explanations for behaviours were sought, for example drug use, and these appeared to allow family members to maintain a degree of control of their understandings of the experiences of clients.
- Fear of stigma – “you know how people in the community are”
- Families feared the interpretation of experience by members of their community – citing concerns about being described as mentally ill, being judged by communities, or fears relating to cultural interpretations of psychic distress.
- Fear of loss and parental guilt: “… he would not be the same person ever, ever again”
- Family members feared losing loved ones, or of there being some form of irrevocable change in them.
- Lack of knowledge: “I thought the GP could only help me with my body, not like mentally”
- Families described complex dynamics in terms of who would seek support for their difficulties, but also in terms of where such support may be offered, stating that they did not appreciate that primary care facilities could offer support for mental distress for example.
- Triggers for help-seeking: “Mum, I know I need help”
- Seeking support from others was described as being a collective action within families – often in response to critical events or an amassing of behaviours that the family could not account for.
- GP contact: “…he spoke to my sister more than he spoke to me”
- Most contact between families and primary health care were described as being positive – however some families described difficulties in terms of communication and understanding, with clients feeling excluded from discussions, or that their concerns were dismissed.
Two families offered descriptions of experiences that were different to other accounts. The first described their experiences in trying to access mental health support without first accessing their GP, or other primary care, this was their choice owing to previous adverse experiences within the family. In the second case the client described seeking help against the wishes of his family.
The authors’ conclude:
Families play a key role in facilitating help-seeking for FEP, but attempts are often derailed by complex family responses to illness. Public mental health interventions should focus on increasing community awareness of psychosis and improving access and alternative routes to mental health services. However, improvements will have little impact unless primary care and other help-seeking sources engage in open and easy dialogue with the families and young people trying to access their specialist services.
This study takes an important step in its effort to address the experiences of families in seeking support in relation to psychotic experiences. Methodologically little explanation is offered as to the cultural and theoretical understandings of the researchers however – this reflexive issue is significant in this study where cultural interpretations of distress appear to have been a significant theme of discussion.
The study title describes itself as a narrative account of experience – however the analytic strategy is more restrictive than this, this is somewhat disappointing as a richer narrative approach to data analysis may have produced a deeper understanding of the experiences described.
The authors recommend greater focus on education and anti-stigma campaigns in order to address the barriers they identify. This is in itself a complex process as anti-stigma campaigns do not necessarily always produce the results expected (Angermeyer, 2013).
The inclusion of family understanding of psychotic experience is clearly an important step however and more research in this field is to be welcomed.
Connor, C., Greenfield, S., Lester, H., Channa, S., Palmer, C., Barker, C., et al. (2014). Seeking help for first-episode psychosis: a family narrative. Early Intervention in Psychiatry 2014; Oct 9 doi:10.1111/eip.12177 [PubMed abstract]
Penttilä, M., Jääskeläinen, E., & Hirvonen, N. (2014). Duration of untreated psychosis as predictor of long-term outcome in schizophrenia: systematic review and meta-analysis. The British Journal of Psychiatry 2014 Aug; 205(2), 88-94 doi:10.1192/bjp.bp.113.127753 [PubMed abstract]
Angermeyer, M. C., Matschinger, H., & Schomerus, G. (2013). Attitudes towards psychiatric treatment and people with mental illness: changes over two decades. The British Journal of Psychiatry : the Journal of Mental Science 2013; 203(2), 146–151. doi:10.1192/bjp.bp.112.122978 [PubMed abstract]
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