Research ethics

Background: Mental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants. Objective: This study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers.

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process.

In keeping with developments in children's rights, research is increasingly including the views of children. Accessing a hard to reach population of children can, however, raise significant ethical and methodological challenges for researchers. Negotiating access through gatekeepers, securing parental consent and limits on confidentiality are central issues in the recruitment process of children. This paper is based on a qualitative study of young carers in the Irish population.

Changes to approaches in dementia care and subsequent services over the last decade have meant that quality of care for people with dementia and their carers has undoubtedly improved. However, few in-depth dementia service evaluation studies are documented. Those that are tend to focus on traditional evaluation measures such as length of stay or functional improvement, or they concentrate on the perspectives of carers. This study used multiple methods within Fourth Generation Methodology to evaluate (SPECAL) Specialized Early Care of Alzheimer's, a dementia care service and approach.

The author, a service user with schizophrenia,  discusses how she can utilize her position and produce research that is acceptable, reliable, and credible. She discusses this in relation to a research proposal to examine the role of the carer in the recovery process of people with schizophrenia.