Perceived needs of carers of people with psychosis: An Australian longitudinal population-based study of caregivers of people with psychotic disorders

Abstract

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers' needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi-structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy-eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well-being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers' and Users' Expectations of Services-Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers' perceived needs. There was minimal improvement in carers' perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well-being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers' perceived needs more holistically in current mental health services. To support carers' recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well-being.

A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers

“…smaller scale and qualitative studies of carers, which have identified a similar range of unmet needs for information and support (Lawn and McMahon, 2015;Poon et al, 2018). For example, Poon et al (2018) found that carers of people with psychotic disorders also reported needs for financial support, respite care and emotional support, consistent with the main unmet needs identified by mental health carers in the 2012 SDAC.…”

“…smaller scale and qualitative studies of carers, which have identified a similar range of unmet needs for information and support (Lawn and McMahon, 2015;Poon et al, 2018). For example, Poon et al (2018) found that carers of people with psychotic disorders also reported needs for financial support, respite care and emotional support, consistent with the main unmet needs identified by mental health carers in the 2012 SDAC. While previous studies have highlighted the importance of emotional support tasks for mental health carers (Pirkis et al, 2010;Carers Victoria, 2013), to our knowledge, this is the first study to quantify differences in caring tasks for mental health v. other disability carers; specifically that more mental health carers provide emotional support but fewer assist with practical tasks and ADLs.…”

Caregivers’ experiences of service transitions in adult mental health: An integrative qualitative synthesis

“…On one hand, caregivers express concern that divulging information poses risks to relationships and may diminish trust. On the other hand, professionals describe a lack of confidence in sharing information with caregivers (Poon, Joubert, & Harvey, ; Rapaport, Bellringer, Pinfold, & Huxley, ). This is despite the availability of a range of published guidance for both professionals and caregivers about ways to manage information without compromising regulations about confidentiality (Slade et al, ; Rethink Mental Illness, no date; Royal College of Psychiatrists, no date), suggesting incomplete implementation of guidelines into practice and may indicate a training need for both professionals and caregivers.…”

“…There may therefore, be value in research designed to explore tailored family‐based interventions at times of service transition. Attention must however be paid to effective implementation of any such intervention to avoid the implementation gaps in family based interventions reported internationally for some time (Poon et al, ).…”

Efectividad de una Intervención Psicoeducativa en la Reducción de la Sobrecarga del Cuidador Informal del Paciente con Esquizofrenia (EDUCA-III-OSA)

“…La adaptación del programa a las características de los cuidadores de pacientes con esquizofrenia fue posible gracias a la similitud de necesidades entre ambas poblaciones. Tanto los cuidadores de enfermos con demencia como con trastorno mental grave manifiestan similares necesidades de información, apoyo emocional, manejo del paciente y autocuidados (Poon, Joubert y Harvey, 2017;Sachs, 2006;Whitlatch y Orsulic-Jeras, 2018). Para ello, se modificó el lenguaje y los contenidos de las sesiones (los ejercicios prácticos y los materiales didácticos).…”