All participants had been greatly affected by the onset of the psychosis in their brother or sister. Most siblings did not identify themselves as carers, although most played a significant part in their brother's or sister's life. Participants wanted dynamic, robust and accessible services, especially information and peer support to meet their needs.
The care-giving experience of carers of young adults with early onset psychosis is relatively unexplored. New carers are less likely to be engaged with local services for carers and families, than those more established in their caring role. Understanding the experience of these carers provides some valuable insight into the value of caring and in guiding service development. This paper reports on a study designed to explore carers' experiences of caring for a young adult diagnosed with a first psychotic episode and their needs in relation to the development of an early intervention for psychosis service. A phenomenological approach was used. Eleven carers were given a semi-structured interview in their own homes. All of the carers in the study had a son with early onset psychosis. The outcome revealed that all carers were providing a comprehensive range of practical, emotional and financial support for their son including initiating and sustaining engagement between them and local mental health services. Many carers were felt to be invisible and silent partners in care and felt under-valued by mental health services.
The growth of early intervention in psychosis services (EIPS) has prompted needed research to provide a robust evidence base to underpin practice. The typical service model embraces key psychosocial interventions, including family interventions. A literature review revealed a number of relevant studies that recognized the role of siblings in families affected by severe mental illness or mental impairment, but little was found about the impact of first-episode psychosis on siblings. To address this apparent oversight, we conducted a study to gain an understanding of sibling experiences. Ten siblings (ages 16 to 30) with a brother or sister diagnosed with first-episode psychosis took part in individual semi-structured interviews. The key findings were grouped in regard to emotional impact, relationships in the family, and siblings' roles and coping patterns. The study also revealed that families are able to identify positive gains out of a fundamentally negative experience.
This paper describes a series of practice and service development initiatives to incorporate the family-inclusive approach into the newly established Early Intervention in Psychosis Service in Berkshire, England. Following a local study on carers' experiences and needs from those who cared for a young adult with a first-episode psychosis (FEP), a series of flexible services for this group of carers has been developed incorporating the much-researched psycho-educational family interventions. The findings of our local phenomenological study on the carers for young adults with FEP clearly specified the unique needs of this group of carers and that well-established approaches in family work and carers support facilities may have to be adapted to meet such needs. This paper reports the service development process through which a series of specially designed carers' services were set up for carers caring for a young adult with FEP. These services were developed to address carers' needs for knowledge, skills and support to cope with their caring roles and situation, from the stressful beginning of a potentially long caring journey.
There is growing evidence of the benefits of family and carers interventions using a psycho-educational model for carers of people with psychosis. In order to get this work into clinical practice, a network of interrelated services for carers and families of people with psychoses has been established in Reading, Berkshire. This paper reports the experience of the authors in establishing these services using a series of practice development initiatives including training for staff, education programmes, integration projects and collaboration across organizations. This work illustrates change processes through which evidence-based practice has been incorporated into routine clinical care and in which research-based assessment and evaluation tools have being used in routine clinical practice to measure outcomes.
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