The role of gender and other aspects of diversity in the experiences of people with a progressive neuromuscular disease: applying an intersectional lens to qualitative data

People with neuromuscular disease (NMD) face progressive disability and ensuing loss of functioning. There are differences in the way in which NMD patients experience their disease and respond to physical and psychological setbacks, which leads to variations in several patient outcomes such as quality of life, functional decline, or labor participation,. These differences might be related to differences in social contexts: research increasingly shows that illness experiences of people with NMD are determined by various sociocultural factors. The role of sociocultural factors in illness experiences and level of societal participation also in paid work suggests that aspects of social identity (such as gender, age and class) play a role in the experiences of people with NMD, however, little is known about how and to what extent. This lack of insight might be caused by the fact that so far, disability researchers have been paying little attention to the role of gender and other aspects of diversity, while at the same time women’s health, men’s health and gender medicine researchers have failed to take disability into account. However, all these aspects and their intersections influence societal participation including labor participation. In addition, researchers that do investigate the impact of social identities on health experiences and outcomes use only single categories of analysis (for instance gender or age or socioeconomic position), focusing on between-group differences while overlooking within-group differences. As a result, potentially relevant gender and diversity-related differences between people with NMD and their illness experiences remain hidden. The objective of this project is to increase our understanding of the influence of gendered identities across their intersections on the way in which individuals with NMD in the Netherlands experience their illness, including participation. We will analyze existing in-depth qualitative interviews (N=26) with people with NMD from the perspective of four categories of difference (sex/gender, age, class and disability) and their intersections. The data were collected during a mixed methods research project that ran between 2008 and 2015 (the Fitness And Cognitive Behavioral Therapies for Fatigue and the Activities in Neuro-Muscular Disease (FACTS-2-NMD) study program - ZonMW ID 89000003). Qualitative data are specifically suited to explore processes that underlie the relationship between sociocultural background, illness experiences, and labor participation. We will carry out an intersectional analysis building on and adding to a previously executed analysis from a disability perspective (Bakker et al., 2016). The aim of the intersectional analysis is to explore how and to what extent the themes that emerged from the disability analysis intersect with gender, class and age. The aim of the inductive analysis is to explore whether an intersectional analysis yields new themes and perspectives. By carrying out a qualitative investigation from an intersectional point of view, we hope to add new information about the role social factors play in the illness-and participation- related experiences of people with NMD. The insights gained with this study will be both theoretical and methodological, and are as follows: (1) an intersectional analysis might yield new information related to identity, illness experience and labor participation, or shed new light on existing information. More insight into the processes that underlie the relationship between sociocultural factors and illness experiences is essential to identify differences and inequalities within the NMD population, and to subsequently develop targeted, inclusive and responsive health and social care programs, practices and policies. A social system that is adjusted to the needs of people with a disability - and to the variety of social identity-based needs that exists within this population - is essential to optimize the quality of life, wellbeing and participation of patients with NMD; (2) this study could yield methodological advances, because it will improve our understanding of both the usefulness and feasibility of intersectional (secondary) qualitative analysis, and contribute to existing knowledge of the usefulness and feasibility of qualitative data sharing. Content-related and theoretical study findings will be disseminated by means of a dissemination workshop and through media channels of implementation partners (e.g. Centre for ClientExperiences, Spierziekten Nederland). Methodological insights and experiences will be shared with other qualitative researchers by means of a methodological tool for intersectional (secondary) qualitative analysis.