Whose story is it? Mental health consumer and carer views on carer participation in research.
Health Expect
; 24 Suppl 1: 3-9, 2021 05.
Article
en En
| MEDLINE
| ID: mdl-31461561
ABSTRACT
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.DESIGN:
A 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.RESULTS:
Conducting 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.CONCLUSIONS:
When 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.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Cuidadores
/
Servicios de Salud Mental
Tipo de estudio:
Qualitative_research
Límite:
Humans
País/Región como asunto:
Oceania
Idioma:
En
Revista:
Health Expect
Asunto de la revista:
PESQUISA EM SERVICOS DE SAUDE
/
SAUDE PUBLICA
Año:
2021
Tipo del documento:
Article
País de afiliación:
Australia