Intersectionality and gender mainstreaming in international health: Using a feminist participatory action research process to analyse voices and debates from the global south and north

Critiques of gender mainstreaming (GM) as the officially agreed strategy to promote gender equity in health internationally have reached a critical mass. There has been a notable lack of dialogue between gender advocates in the global north and south, from policy and practice, governments and nongovernmental organisations (NGOs). This paper contributes to the debate on the shape of future action for gender equity in health, by uniquely bringing together the voices of disparate actors, first heard in a series of four seminars held during 2008 and 2009, involving almost 200 participants from 15 different country contexts. The series used (Feminist) Participatory Action Research (FPAR) methodology to create a productive dialogue on the developing theory around GM and the at times disconnected empirical experience of policy and practice. We analyse the debates and experiences shared at the seminar series using concrete, context specific examples from research, advocacy, policy and programme development perspectives, as presented by participants from southern and northern settings, including Kenya, Mozambique, India, the Democratic Republic of Congo, Canada and Australia. Focussing on key discussions around sexualities and (dis)ability and their interactions with gender, we explore issues around intersectionality across the five key themes for research and action identified by participants: 1) Addressing the disconnect between gender mainstreaming praxis and contemporary feminist theory; 2) Developing appropriate analysis methodologies; 3) Developing a coherent theory of change; 4) Seeking resolution to the dilemmas and uncertainties around the ‘place’ of men and boys in GM as a feminist project; and 5) Developing a politics of intersectionality. We conclude that there needs to be a coherent and inclusive strategic direction to improve policy and practice for promoting gender equity in health which requires the full and equal participation of practitioners and policy makers working alongside their academic partners

Intersectionality and gender mainstreaming in international health: Using a feminist participatory action research process to analyse voices and debates from the global south and north

a b s t r a c t Critiques of gender mainstreaming (GM) as the officially agreed strategy to promote gender equity in health internationally have reached a critical mass. There has been a notable lack of dialogue between gender advocates in the global north and south, from policy and practice, governments and nongovernmental organisations (NGOs). This paper contributes to the debate on the shape of future action for gender equity in health, by uniquely bringing together the voices of disparate actors, first heard in a series of four seminars held during 2008 and 2009, involving almost 200 participants from 15 different country contexts. The series used (Feminist) Participatory Action Research (FPAR) methodology to create a productive dialogue on the developing theory around GM and the at times disconnected empirical experience of policy and practice. We analyse the debates and experiences shared at the seminar series using concrete, context specific examples from research, advocacy, policy and programme development perspectives, as presented by participants from southern and northern settings, including Kenya, Mozambique, India, the Democratic Republic of Congo, Canada and Australia. Focussing on key discussions around sexualities and (dis)ability and their interactions with gender, we explore issues around intersectionality across the five key themes for research and action identified by participants: 1) Addressing the disconnect between gender mainstreaming praxis and contemporary feminist theory; 2) Developing appropriate analysis methodologies; 3) Developing a coherent theory of change; 4) Seeking resolution to the dilemmas and uncertainties around the 'place' of men and boys in GM as a feminist project; and 5) Developing a politics of intersectionality. We conclude that there needs to be a coherent and inclusive strategic direction to improve policy and practice for promoting gender equity in health which requires the full and equal participation of practitioners and policy makers working alongside their academic partners

Congenital titinopathy: Comprehensive characterisation and pathogenic insights

Objective: Comprehensive clinical characterization of congenital titinopathy to facilitate diagnosis and management of this important emerging disorder. Methods: Using massively parallel sequencing we identified 30 patients from 27 families with 2 pathogenic nonsense, frameshift and/or splice site TTN mutations in trans. We then undertook a detailed analysis of the clinical, histopathological and imaging features of these patients. Results: All patients had prenatal or early onset hypotonia and/or congenital contractures. None had ophthalmoplegia. Scoliosis and respiratory insufficiency typically developed early and progressed rapidly, whereas limb weakness was often slowly progressive, and usually did not prevent independent walking. Cardiac involvement was present in 46% of patients. Relatives of 2 patients had dilated cardiomyopathy. Creatine kinase levels were normal to moderately elevated. Increased fiber size variation, internalized nuclei and cores were common histopathological abnormalities. Cap-like regions, whorled or ring fibers, and mitochondrial accumulations were also observed. Muscle magnetic resonance imaging showed gluteal, hamstring and calf muscle involvement. Western blot analysis showed a near-normal sized titin protein in all samples. The presence of 2 mutations predicted to impact both N2BA and N2B cardiac isoforms appeared to be associated with greatest risk of cardiac involvement. One-third of patients had 1 mutation predicted to impact exons present in fetal skeletal muscle, but not included within the mature skeletal muscle isoform transcript. This strongly suggests developmental isoforms are involved in the pathogenesis of this congenital/early onset disorder. Interpretation: This detailed clinical reference dataset will greatly facilitate diagnostic confirmation and management of patients, and has provided important insights into disease pathogenesis. Ann Neurol 2018;83:1105–1124.SCOPUS: ar.jinfo:eu-repo/semantics/publishe