Participatory Health Research International Experience from Four Portuguese-Speaking Countries

Abstract

Thinking about participatory health research (PHR) in Portuguese-speaking countries implies diversity and specifically cultural diversity. Four years after the chapter’s co-authors were integrated into the International Collaboration for Participatory Health Research (ICPHR) network, they decided to reflect on how PHR is emerging in Portuguese-speaking countries. Participatory research builds on co-created knowledge by doing research with people not on them, so it becomes challenging to reflect on the singularities of PHR among Portuguese-speaking projects due to cultural diversity. This chapter presents the reflexive synthesis of nine PHR projects developed in Angola, Brazil, Cape Verde, and Portugal using comparative analysis. PHR coordinators were invited to co-author this chapter with the purpose of synthesizing and comparing (i) research design and validity, (ii) participation, and (iii) impact of research and dissemination. The projects were focused on topics such as “partygoer” college and university students, young people living in violent communities, people living with chronic diseases, women without access to cervical cancer screening, and primary health-care practices. These projects revealed PHR “good practices” and the potential to support social change through person-/community-centered services and greater responsiveness/inclusion in the health-care system. The barrier between scientific and lay knowledge must be overcome so that proposals can emphasize the impact of powerlessness in people’s daily lives.

Appendices

Appendix 1. Template to Synthesize PHR Projects

	Units of analysis and categories, according to ICPHR (2013)	A1	B2	B3	B4	B5	C6	P7	P8	P9
Objective, relevance, and context of the research	Relevance of the research:
	Academic interest (professional skills)	x	x	x	x	x				x
	Magnitude of the problem	x	x	x	x	x	x	x	x	x
	Mobilization of groups/community			x	x	x		x	x	x
	Context of the research:
	Health/social services		x	x	x			x
	Community institutions					x	x
	Community	x		x		x		x
	Higher education institutions		x	x	x	x		x	x	x
	Objective of the research:
	Improve health literacy and personal/social skills	x	x	x	x	x	x	x	x	x
	Improve health indicators	x	x	x	x	x	x	x	x	x
	Reduce social determinants of health problems		x	x		x	x	x		x
	Promote healthy contexts			x	x	x		x	x	x
	Produce health/social policies				x		x		x	x
Target group and participation mode	What were the modes of participation of people whose life, health/illness, or work is the focus of the research?
	Contractual	x	x	x	x	x	x	x	x	x
	Consultative	x	x	x	x	x	x	x	x	x
	Collaborative	x	x	x	x	x	x	x	x	x
	Collegiate							x	x	x
	How was the community (or group) contacted:
	Researcher	x	x	x	x	x		x		x
	Person appointed by the group/community	x		x			x	x	x	x
	Health/social services		x	x	x		x	x
Data collection and analysis methods and dissemination	Elaboration of the research question:
	Researchers	x	x	x	x	x				x
	People whose life, health/illness, or work is the focus of the research			x	x	x	x	x	x	x
	Local structures and partners	x	x	x		x	x	x	x	x
	Selection of data collection methods:
	Researchers	x	x	x	x	x	x	x	x	x
	People whose life, health/illness, or work is the focus of the research	x		x	x	x		x	x	x
	Local structures and partners		x			x	x	x	x	x
	Data analysis and discussion of results:
	Researchers	x	x	x	x	x	x	x	x	x
	People whose life, health/illness, or work is the focus of the research			x	x	x	x	x	x	x
	Local structures and partners		x		x	x	x	x	x	x
	Dissemination of results:
	Researchers	x	x	x	x	x	x	x	x	x
	People whose life, health/illness, or work is the focus of the research			x	x	x			x	x
	Local structures and partners	x	x	x		x	x		x	x

Appendix 2. Summary of PHR Projects Under Review

Principal investigator(s)	Authors	Title (in Portuguese and translation into English)	N
Maria da Conceição Martins da Silva	Maria da Conceição Martins da Silva, Irma da Silva Brito, Maria Adriana Pereira Henriques, Bebiana Calisto Bernardo, Eurica da Natividade Sinclética Graça Neves da Rocha, Ana Maria Pascoal, Judith Arminda Venâncio Candeias	Cancro do colo do útero: conhecimento e prática sobre a prevenção do cancro do colo do útero de mulheres vendedoras de um mercado do município de Luanda-Angola	A1
		Cervical cancer: knowledge and practices on the prevention of cervical cancer in women market vendors in the municipality of Luanda- Angola
Hayda Alves	Hayda Alves, Andréa de Araújo Viana, Bruno Ferreira Teixeira, Cláudia Pontes Braz, Irma Brito, Lidia Santos Soares, Michella Florência Câmara, Paula Martins Sirelli, Rafaela Cristina de Andrade Santos, Thamires Rodrigues da Silva	(Des) embarazo: pesquisa-ação participante com adolescentes para prevenção da gravidez (RO, RJ, Brasil)	B2
		(Des) embarazo: participatory action research with adolescents for pregnancy prevention (RO, RJ, Brazil)
Lina Marcia Berardinelli	Lina Berardinelli, Nathália Aparecida Costa Guedes Miranda, Louise Theresa de Araújo Abreu, Larissa Pereira Costa	Produção de cuidado participativo com pessoas que vivenciam a fibromialgia	B3
		Production of participatory care with patients with fibromyalgia
Vanessa Corrêa	Vanessa Corrêa, Sonia Acioli	Projetos terapêuticos: uma construção coletiva para a prática do enfermeiro na estratégia saúde da família	B4
		Therapeutic projects: a collective construction for nurses’ practice in the family health strategy
Crystiane Ribas Ribeiro	Crystiane Ribas Ribeiro, Vera Maria Sabóia	Impacto ambiental, trabalho e saúde de pescadores da Baía de Guanabara – RJ, Brasil: A Educação pelos Pares como estratégia de prevenção	B5
		Environmental impact, work and health of Guanabara Bay fishers – RJ, Brazil : peer education as a prevention strategy
Fernando Mendes and Irma Brito	Fernando Mendes, Irma Brito, Suzana Delgado, Filipa Homem, Maria do Rosário Mendes, and Cape Verde Ministry of Youth	Bo Ki Ta Disidi. Educação, apoio e aconselhamento para reduzir a violência juvenil nas cidades de Cabo Verde	C6
		Bo Ki Ta Disidi. Education, support, and counseling to reduce youth violence in the cities of Cape Verde
Donizete Vago Daher and Irma Brito	Irma Brito, Donizete Daher, Ana Pedro Costa, Maria de Fátima Cravo, Ana Filipa Cardoso, António Fernandes, Cristina Neves, Janete Ferreira, Sónia Ribeiro, Catarina Simões, Cristina Ventura	Reconstruindo o viver com diabetes	P7
		Rebuilding life with diabetes
Fernanda Príncipe and Irma Brito	Fernanda Príncipe, Irma Brito, António Ferreira, Henrique Pereira, Maribel Carvalhais, Manuela Ferreira, Ana Torres, Sónia Novais, Liliana Mota, Alexandra Brandão, Fernando Mendes	PEER-IESS. Ativar instituições de ensino superior na promoção de contextos salutogénicos, através da pesquisa-ação participativa baseada na comunidade estudantil	P8
		PEER-IESS. Activate higher education institutions for the promotion of healthy settings through participatory action research based on the student community
Irma Brito and Fernando Mendes	Irma Brito, Fernando Mendes, Filipa Homem, Verónica Coutinho, Paulo Anjos, Armando Silva, Maria da Alegria Simões, Luís Paiva, Maria do Rosário Mendes, Lucília Rodrigues	Antes que te Queimes: saúde e segurança em contextos recreativos	P9
		Before you get burned: health and safety in nightlife settings