Developing services for the carers of young adults with early‐onset psychosis – implementing evidence‐based practice on psycho‐educational family intervention

Abstract

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.

Families' Experience With Seeking Treatment for Recent-Onset Psychosis

“…This can be channeled into political action through participation in family groups, such as the National Alliance on Mental Illness, which has played a strong role in obtaining legal parity of coverage for health care. As described in other studies (18,19), this study showed that families want information and support and more involvement in the care and recovery of their loved ones. Their wishes are consonant with calls by the President’s Commission for more patient- and family-centered care (29) and calls by the IOM for involving patients and families in the design, administration, and delivery of treatment and recovery services (31).…”

“…Focus groups have identified that families want more involvement, support, advice on managing symptoms, aid in navigating treatment systems, and contact with other families (18,19). Specifically, families requested multifamily psychoeducational groups in which patients are not present, rapid outreach after diagnosis, phone support from trained peers, and information on illness and treatment.…”

Family Perceptions of Benefits and Barriers to First Episode Psychosis Carer Group Participation

“…FEP carers tend to be unfamiliar with symptoms and behaviors associated with psychosis, unfamiliar with medications and side-effects, unfamiliar with mental health services and systems, with limited knowledge of the process of recovery or common treatments, and inexperienced in developing coping mechanisms (Lowenstein, et al, 2010;Sin, Moone, & Newell, 2007). Since onset of FEP is typically early 20s, individuals remain living with their families for an extended period, resulting in the parental role being extended for carers (Askey et al, 2007;Lowenstein et al, 2010).…”

Family-focused practice in mental health care: An integrative review

“…Several papers described embedding support within service or treatment (e.g. Gopalan, et al, 2014;Lee et al, 2009;Sin, Moone & Newell, 2007). Sometimes support aimed to empower the consumer or family, for example, the clinician supported parents to solve their own problems, rather than rely on professionals (Lee et al, 2009).…”

“…Research on "age" as a variable in FFP needs further evidence: for example, day hospital treatment for infants, toddlers and preschoolers (Furniss et al, 2013); and "early" onset diagnoses such as psychosis (Sin et al, 2007) and bipolar disorder (Miklowitz et al, 2006) where families may be encountering mental health clinicians and services for the first time, and when the consumer is a child, youth or transitioning adult. Other areas include family psychoeducational needs in relation to the differences between developmental-and illness- Further research is required to explore whether particular practice settings and professional disciplines should dictate the range of family-focused activities that occur, especially considering the continuum of family-focused practices that exist and the potential differences in the capacity of different healthcare disciplines to engage in FFP (see Maybery et al, 2014).…”