Parents’ Experiences of a Multiple Sclerosis (MS) Diagnosis in Their Young Adult Sons/Daughters: An Interpretative Phenomenological Study

Background: Multiple Sclerosis is the most common neurological disorder in young people, specifically across the ages of 20-40 when initial diagnosis occurs (Rejdak, Jackson & Giovannoni, 2010; MS Ireland 2017). Given the complexity of the disease and its impact on an individual’s quality of life, research is wide ranging with regards to the needs and experiences of individuals with MS (Irish Health 2013; MS Society UK, 2013).However, when one considers the impact such a disease has on the parents of a young adult, research is significantly underdeveloped in this area in Ireland and worldwide. Objectives: The aim of this study was to explore the lived experiences of parents’ presented with an MS diagnosis in their young adult sons/daughters. The study objectives were: • To explore the experience of parents’ with young adult sons/daughters with a diagnosis of MS. • To explore the impact the diagnosis has on the lives of the parents. Methods: The design used was a hermeneutic phenomenological approach grounded in Heidegger’s philosophy. Non-probability purposeful sampling was used to recruit a sample size of 8 participants, with the population group accessed through the Multiple Sclerosis Society of Ireland. Data was collected through the use of unstructured interviews and analysed as per Colaizzi’s framework (1978). Results: Using Colazzi’s method and framework for data analysis, four main themes emerged from this qualitative study exploring the lived experiences of parents’ presented with an MS diagnosis in their young adult sons/daughters; Balance, Uncertainty, Isolation and Support. Each theme also led to the discussion of a number of relevant sub themes. Conclusions: A number of themes emerged while exploring parents’ experiences of an MS diagnosis in their young adult son/daughter. These themes supported the emergence of four main themes within the study, i.e., balance, uncertainty, isolation and support. All parents identified with elements of each of the four themes. Parents acknowledged a personal struggle with balance. They must now balance their biological need to protect their child with the need to respect their position as a young adult with independent reasoning and decision-making abilities. Uncertainty surrounded all parents’ experiences of an MS diagnosis, owing to the instability of the disease itself. Uncertainty manifested in terms of unknown disease progression, silent symptoms and the perceived inability to care effectively. Isolation resulted from a collaboration of other emotions. Fear and guilt experienced by parents often resulted in relationship breakdowns, disruption to family dynamics and contributed to their subsequent inability to ask for help when needed. Experiences of support may have varied among the parents involved but all identified the need for support structures, additional resources and information for those caring for their young adult.

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