Background: Multiple sclerosis (MS) is a chronic, progressive autoimmune inflammatory disorder. Its impact is felt not only by individuals but also by their families; however, little is known about the effect on their parents. This study of a cohort from the United Kingdom aimed to develop a conceptual understanding of the parental role and how it changes over time when an adult son or daughter has MS via firsthand accounts.
Methods: Twelve parents of adults with MS were recruited from a UK hospital providing outpatient services to people with MS and a branch of a national MS charity. A social constructivist grounded theory approach informed audio-recorded semistructured interviews and subsequent data analysis.
Results: In this sample, parents of adults with MS strove to limit the impact of MS on their son or daughter by undertaking practical caring activities and providing emotional support. The developed theoretical model illustrates how, in their efforts to meet this aim, parents experienced competing demands between prioritizing their child's needs and managing the effects on their life, between managing the emotional experience and protecting their child from the burden of their experience, and between an intensified instinct/desire to help while maintaining their child's independence.
Conclusions: Findings indicate that parents may be uniquely affected by their adult son or daughter having MS, advocating for their inclusion in research and clinical interventions addressing family adjustment to MS. Further research is needed to ascertain the generalizability of these findings in comparable samples and to determine the impact of sociodemographic and cultural variables on the observed phenomena.
Keywords: adjustment; family; grounded theory; multiple sclerosis; parents.
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