Caring for an intimate stranger: parenting a child with psychosis.

Abstract

The care of an adult son or daughter with psychosis is filled with overwhelming demands caused by the symptomatology and illness exacerbations. Parents display disenfranchised grief over multiple losses and report increased levels of emotional burden. Most studies use quantitative methods and rely on pre-existing theoretical frameworks to investigate, through psychometric measures, the effects of being a carer. Meaning attributions to the disorder, and changes in parent-child relations over time, are poorly understood. This hermeneutic phenomenological study illuminates the subjective experience of parenting a son or daughter with psychosis, as it is lived and described by parents of young adults with psychosis. Findings suggest that the parents' perceptions of their child changes over the course of the disorder, leading to a redefinition of the parent-child relationship, causing alternations in attachment. Findings illuminate the parents' profound guilt over having contributed or not prevented the disorder, over not being 'good' parents and feeling ambivalent towards an 'intimate stranger.' Guilt is compensated by absolute dedication to the son or daughter's care, at the expense of their own well-being. Interventions for parents must be available as soon as possible, both during hospitalization and after discharge. Professionals should provide a therapeutic space, where parents could express intimate thoughts and feelings, address guilt, fear and resentment issues, be assisted in their parenting role as well as in the reconstruction of a sense of self and self-esteem. Professionals are invited to facilitate illness acceptance, provide accurate information, assist parents to redefine their relationship to the child and facilitate the integration of the traumatic experience into their personal and family narrative. Professionals must develop in depth awareness of their biases and attitudes, have an ongoing training on how to respond to the parents' needs, facilitate therapeutic change and accompany families through the course of their adult child's illness trajectory. Introduction Children who are diagnosed with psychosis often rely on their parents for prolonged care. The impact of such care is partially understood as most studies use quantitative methods and pre-existing theoretical frameworks that limit their investigation to emotional burden, and emotional responses. Aim Explore the parents' lived experience of caring for a child with psychosis. Method A hermeneutic phenomenological design was used with a sample of 16 parents of children with psychotic disorders who were hospitalized or attended the outpatient clinic of a large psychiatric Greek hospital. Results Identified themes were as follows: (i) the psychosis experience, (ii) redefinition of the parent-child relationship over the course of the disorder and (iii) challenges of parenting a child with psychosis. Discussion 'Caring for an intimate stranger' reflects the parents' overall experience, involving changes in the parent-child relationship, ambivalence towards caretaking and profound guilt, compensated by self-sacrifice parenting practices. Findings highlight the necessity to train mental health professionals to provide individualized information; facilitate family communication; address the parents' guilt, ambivalence, meaning attributions that compromise adjustment; and support them through the challenges of parenting a son or daughter with psychosis.