The protector, the coach and the nurse: the experiences of parents of young adults with early psychosis

Abstract

BACKGROUND: Family support is considered a crucial element of positive rehabilitation outcomes for early psychosis. This interpretive phenomenological study provides insights on the beliefs, roles, struggles, and needs of parents of young adults with early psychosis. METHODS: Eight parents of young adults (under 30 years old) identifying themselves as main caregivers were recruited via a hospital psychiatric clinic. Seven mothers and one father (aged 41-62 years) participated in a semi-structured interview on the illness experience and their parenting capacities. RESULTS: Almost all parents assumed full responsibility to take care of their child’s condition (as with other illnesses), placing upon themselves the obligation to help patients recover. Most parents learned to relinquish prior academic / career expectations or family rules, shifting the parental priority towards creating peaceful, stabilising environments and maintaining harmonious relationships with patients. To stabilise patient emotions, parents may even fulfill patients’ superstitious requests. A struggle which prevailed across families was balancing unconditional acceptance and support with disciplining (avoiding over-indulgence and patient-identities) which was manifested when patients were seen as ‘lazy’, emotional outbursts, etc. Parents saw upon themselves a need to coach patients on coping with auditory hallucinations and handling emotions, often with self-derived tactics or through value cultivation. Underlying that was a deep-seated belief that a change in cognition, rather than medicine, would be the ultimate cure for their child. Parents were also the keystones for medication adherence, battling personal beliefs about medication efficacy while advocating for dose reduction. While trying to understand their child, parents put up with constant blame despite an utter lack of support. CONCLUSIONS: Lived experiences provided insight on effective and non-stigmatising services for family members which they themselves felt was lacking. Practical suggestions proposed by parents would be shared.