An exploration of the lived experiences of parents with multiple sclerosis

Abstract

Multiple sclerosis (MS) is “a chronic, [immune-mediated,] often disabling disease of the central nervous system (the brain and the spinal cord)” (National Multiple Sclerosis Society, 2016b, p.2). It is common around child-rearing age and its presentation includes unpredictable cycles of relapsing and remitting nature of manifested symptoms. An individual who has acquired impairments in view of a chronic, unpredictable disease such as MS may experience a profound impact in multiple life domains such as parenthood. Therefore, this study sought to explore the lived experiences of parents with MS, according to the meanings they ascribed to them. This was done through a qualitative research approach under an existential-hermeneutic phenomenology conceptual framework, along with emancipatory disability research principles. An advisory group comprising four parents with MS met twice for a focus group; at the beginning of the study in order to devise an interview guide, and following data collection to discuss the findings. Individual, face-to-face semi-structured interviews were carried out with six different parents with MS. All study participants were recruited through purposeful intensity sampling procedures. Five superordinate themes were generated following an interpretative phenomenological analysis, including The Experience of Living with MS, The Importance of Being a Parent: ‘Children were a blessing in this whole thing’, Parenting Roles: A Social Construct?, Concerns Around the Child’s Well-being and their Families, and Availability of Support. Some of the lived experiences could be compared and contrasted; however, each experience was unique in its own way, where existential dimensions of being-in-the-world were fundamental to create the unique sense-making of each person’s lived experience. As proposed by the participants in this study, there is the need to improve public awareness about both MS and disability awareness in general through the use of the media and disability-awareness campaigns, in order to address the actual realities of living with MS and its effect on life domains, and enable effective social change, such as in the socio-cultural attitudes, political policies, agendas and services.