Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia

Abstract

BackgroundAustralia’s commitment to consumer and community participation in health and medical research has grown over the past decade. Participatory research models of engagement are the most empowering for consumers.MethodsAs part of a project to develop a diagnostic instrument for fetal alcohol spectrum disorders (FASD) in Australia (FASD Project), the Australian FASD Collaboration (Collaboration), including a consumer advocate and two consumer representatives, was established. On completion of the FASD Project an on-line survey of Collaboration members was conducted to assess their views on consumer involvement. Women in the community were also invited to participate in Community Conversations to discuss real life situations regarding communications with health professionals about alcohol and pregnancy. Community Conversation feedback was analysed qualitatively and attendees were surveyed about their views of the Community Conversation process.ResultsThe on-line survey was completed by 12 members of the Collaboration (71%). Consumer and community participation was considered important and essential, worked well, and was integral to the success of the project. The 32 women attending the Community Conversations generated 500 statements that made reference to prevention, how information and messages are delivered, and appropriate support for women. Nearly all the attendees at the Community Conversations (93%) believed that they had an opportunity to put forward their ideas and 96% viewed the Community Conversations as a positive experience.ConclusionsThe successful involvement of consumers and the community in the FASD Project can be attributed to active consumer and community participation, which included continued involvement throughout the project, funding of participation activities, and an understanding of the various contributions by the Collaboration members.

Prevenção da síndrome alcoólica fetal: subsídios para a prática de enfermeiras obstétricas [Prevention of fetal alcohol syndrome: input to obstetrical nurses’ practice]

“…A primeira categoria foi constituída por sete artigos [11][12][13][14][15][16][17] , totalizando 47% dos estudos; a segunda, por oito [18][19][20][21][22][23][24][25] , totalizando 53%.…”

“…Discute-se os conhecimentos e práticas de gestantes e profissionais da saúde sobre o uso do álcool na gravidez e as estratégias para a sua prevenção [11][12][13][14][15][16][17] . …”

“…Os participantes referiram ambivalência quanto ao consumo materno de álcool, com as respostas variando sobre a abstinência, a aceitabilidade de beber pequenas quantidades e o consumo do vinho tinto, considerado benéfico para a saúde 12 . Poucos participantes identificaram os problemas relacionados à SAF como uma consequência do consumo.…”

“…Baseando-se nessas informações, as mensagens de profissionais da saúde devem ser consistentes e precisas quanto à abstinência alcoólica e a necessidade de buscar atendimento, mesmo sendo a SAF incurável, já que o diagnóstico precoce fornece estratégias para criança e sua família com vistas à melhoria da qualidade de vida 12 . Ao abordar o consumo de bebidas alcoólicas durante a consulta, deve-se perguntar sobre dieta e o estilo de vida.…”

Two Methods for Engaging with the Community in Setting Priorities for Child Health Research: Who Engages?

“…This type of phenomenological approach is useful for researchers to gain perspectives into research topics and into ideas for further research that might not otherwise be apparent from data analysis alone or considered by researchers, clinicians, funding bodies or government agencies. [ 33 ]…”