Elaine Stasiulis

A descriptive review of qualitative studies in first episode psychosis

Aim: The aim of this paper is to provide a descriptive review of published qualitative research studies on first episode psychosis (FEP).

I'll show them: the social construction of (in)competence in survivors of childhood brain tumors.

Multimodal therapy for the treatment of childhood cancer has resulted in increased survival rates, yet as growing cohorts of children mature, late effects are becoming apparent. Specifically, brain tumor survivors tend to have poor social skills, peer relationship problems, academic difficulties, and delayed college entry. This article addresses findings specific to the unique experience of childhood cancer survivors as they transition from adolescence to adulthood. Qualitative methods involving focus groups and in-depth interviews with 14 childhood cancer survivors and 22 family members were used. The dialectic of incompetence/competence pervaded all narratives. Contradictory concepts of integration/ isolation, realistic/unrealistic goals, and the need for special help/no help were underscored by respondents. The struggle to deal with these contradictory factors led to the simultaneous resistance and acceptance of feelings of competence.

Youth at ultra high risk for psychosis: using the Revised Network Episode Model to examine pathways to mental health care

Aim: This paper aims to identify the ways in which youth at ultra high risk for psychosis access mental health services and the factors that advance or delay help seeking, using the Revised Network Episode Model (REV NEM) of mental health care.

Arts-based health research and academic legitimacy: transcending hegemonic conventions

Using the Canadian context as a case study, the research reported here focuses on in-depth qualitative interviews with 36 researchers, artists and trainees engaged in ‘doing’ arts-based health research (ABHR). We begin to address the gap in ABHR knowledge by engaging in a critical inquiry regarding the issues, challenges and benefits of ABHR methodologies. Specifically, this paper focuses on the tensions experienced regarding academic legitimacy and the use of the arts in producing and disseminating research. Four central areas of tension associated with academic legitimacy are described: balancing structure versus openness and flexibility; academic obligations of truth and accuracy; resisting typical notions of what counts in academia; and expectations vis-à-vis measuring the impact of ABHR. We argue for the need to reconsider what counts as knowledge and to reconceptualize notions of evaluation and rigor in order to effectively support the effective production and dissemination of ABHR.

Reflections of young people who have had a first episode of psychosis: what attracted them to use alcohol and illicit drugs?

Aim: To identify factors that contribute to the initiation of alcohol and street drug use from the perspective of people who were enrolled in early intervention programmes for a first episode of psychosis.

Shared decision making in the management of children with newly diagnosed immune thrombocytopenia.

This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants’ experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of “anxiety, fear, and confusion”; the need to “understand information”; and “treatment choice,” the experience of which was age dependent. For parents, “anxiety, fear, and confusion” was a dominant theme; “treatment choice” revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, “comfort level” highlighted factors contributing to professionals’ comfort with offering options; “assumptions” were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; “providing information” was informative regarding modes of facilitating SDM; and “treatment choice” revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.