Abstract
BackgroundSchizophrenia is a complex, heterogeneous disorder, with highly variable treatment outcomes, and relatively little is known about what is important to patients. The aim of the study was to understand treatment outcomes informal carers perceive to be important to people with schizophrenia.MethodQualitative interview study with 34 individuals and 8 couples who care for a person with schizophrenia/schizoaffective disorder. Interviews were transcribed verbatim and analysed by a thematic framework based approach.ResultsCarers described well-recognised outcomes of importance, alongside more novel outcomes relating to: Safety (of the patient/others); insight (e.g. into non-reality of psychotic phenomena); respite from fear, distress or pain; socially acceptable behaviour; getting out of the house; attainment of life milestones; changes in personality and/or temperament; reduction of vulnerability to stress; and several aspects of physical health.ConclusionsThese findings have the potential to inform the development of patient- or carer- focused outcome measures that take into account the full range of domains that carers feel are important for patients.
Highlights
Schizophrenia is a complex, heterogeneous disorder, with highly variable treatment outcomes, and relatively little is known about what is important to patients
Carers described well-recognised outcomes of importance, alongside more novel outcomes relating to: Safety; insight; respite from fear, distress or pain; socially acceptable behaviour; getting out of the house; attainment of life milestones; changes in personality and/or temperament; reduction of vulnerability to stress; and several aspects of physical health. These findings have the potential to inform the development of patient- or carer- focused outcome measures that take into account the full range of domains that carers feel are important for patients
Where a carer identified that the person they cared for experienced ongoing difficulties with engaging in physical activity, or that they wished the person they cared for could have the energy to engage in physical activity, this was interpreted as the carer indicating that being able to engage in physical activity was an important outcome, and it was coded within the ‘physical activity’ category
Summary
Schizophrenia is a complex, heterogeneous disorder, with highly variable treatment outcomes, and relatively little is known about what is important to patients. The aim of the study was to understand treatment outcomes informal carers perceive to be important to people with schizophrenia. Improving treatment outcomes and quality of life for people with long-term mental health conditions are key aims of health care policy [1, 2]. Schizophrenia is a important target, being associated with poor quality of life [3] and individual and societal impacts [4,5,6], and requiring long-term treatment [7]. This study sought to explore the treatment outcomes that carers feel are important for people with schizophrenia.
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