Abstract
There is a recognised need to develop clear service models and pathways to provide high quality care in the community for people with complex emotional needs, who may have been given a "personality disorder" diagnosis. Services should be informed by the views of people with these experiences. To identify and synthesise qualitative studies on service user experiences of community mental health care for Complex Emotional Needs. We searched six bibliographic databases for papers published since 2003. We included peer reviewed studies reporting data on service user experiences and views about good care from community-based mental health services for adults with CEN, including generic mental health services and specialist "personality disorder" services. Studies using any qualitative method were included and thematic synthesis used to identify over-arching themes. Forty-seven papers were included. Main themes were: 1) The need for a long-term perspective on treatment journeys; 2) The need for individualised and holistic care; 3) Large variations in accessibility and quality of mental health services; 4) The centrality of therapeutic relationships; 5) Impacts of 'personality disorder' diagnosis. Themes tended to recur across studies from different countries and years. Recurrent major themes included wanting support that is individualised and holistic, provides continuity over long journeys towards recovery, and that is delivered by empathetic and well-informed clinicians who are hopeful but realistic about the prospects of treatment. Care that met these simple and clearly stated priorities tended to be restricted to often limited periods of treatment by specialist "personality disorder" services: generic and primary care services were often reported as far from adequate. There is an urgent need to co-design and test strategies for improving long-term support and treatment care for people with "personality disorders" throughout the mental health care system.
Highlights
Service user experiences of community services for complex emotional needs detailed search strategy and precise inclusion criteria are available in the supplementary information
The prevalence of “personality disorder” diagnoses is high amongst people using community and outpatient services in Europe and the USA, with estimates ranging between 40 and 92% [1]
Given the seriousness of critiques of diagnostic labels, we have chosen in this paper to use an alternative term—complex emotional needs (CEN) to describe needs often associated with a diagnosis of “personality disorder”
Summary
The prevalence of “personality disorder” diagnoses is high amongst people using community and outpatient services in Europe and the USA, with estimates ranging between 40 and 92% [1] Despite such significant levels of potential need and help-seeking, many concerns remain about the quality and accessibility of services for people given this diagnosis [2]. A substantial literature, including service user commentaries, discusses some advantages of making a diagnosis of “personality disorder” in terms of clear explanations for service users and reliable categorisation for research. Balanced against this are serious critiques of diagnoses of “personality disorder” as stigmatising and potentially misogynistic, and of the lack of progress in delivering effective care that has been associated with its use. Services should be informed by the views of people with these experiences
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