ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Whose story is it? Mental health consumer and carer views on carer participation in research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it, 9 citations in OpenAlex.
- Participatory research with carers: A systematic review and narrative synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Views on mental health research in the context of schizophrenia: perspectives of peer support workers and researchers with lived experience - a qualitative study.Research involvement and engagement · 2026Article
- It's Not Really the Words; It's How They Land: Lived Experience Perspectives on the Use of Language and Labels in Mental Health.International journal of environmental research and public health · 2026Article
- Mental health consumers' perspectives of physical health interventions: An integrative review.International journal of mental health nursing · 2022Review
- A framework for involving coproduction partners in research about young people with type 1 diabetes.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Whose story is it? Mental health consumer and carer views on carer participation in research.Health expectations : an international journal of public participation in health care and health policy · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMental 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.
objectiveThis study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers.
designA public forum (n = 14; consumer = 5, carer = 9) and a subsequent series of interviews (n = 10; consumer = 5, carer = 4, both = 1) were conducted to investigate consumer and carer views on mental health research ethics. Data collection and analysis drew strongly on methodological features of grounded theory.
resultsConducting research involving carers and consumer-carer relationships raises potential concerns related to story ownership. Lived experience stories have shared and separate elements; thus, it is important to consider potential risks to the privacy of non-participants and of social harm to participants' relationships when conducting research in this space. These risks could be minimized and managed through communication between researchers and participants, and within relationships.
conclusionsWhen conducting research involving carers and consumer-carer relationships, researchers may need to facilitate the negotiation of information-sharing boundaries within relationships and the safe and confidential telling of shared stories.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.