A Qualitative Descriptive Study Exploring the Adaptation of Families of Children with Multiple Sclerosis from the Perspective of Caregivers

摘要

Two to 5% of the US population of individuals afflicted with multiple sclerosis (N = 400,000) are diagnosed prior to the age of 18 with pediatric onset multiple sclerosis (POMS). Most children and teens with POMS have a relapsing remitting course of the disease with unpredictable relapse onset causing cognitive and physical disability. This can result in school absences, hospital and outpatient visits, poor academic performance and interruption in normal social activities. In turn, these individuals may develop an inability to provide self-care, which could lead to poor quality of life. POMS can affect the individual diagnosed but may also cause temporary and/or permanent disruption in the structure of the family. In the initial phases of the disease, families may adjust by making day-to-day changes to their roles and responsibilities. Over time, families may also adapt their level of functioning to meet the demands of the unexpected nature of the disease. No research exists on the factors that influence the adaptation of families of children diagnosed with POMS. The purpose of this qualitative descriptive study is to gather rich and in-depth accounts of the factor that influence how families adjust and adapt to diagnoses from the perspective of family caregivers.;Twenty female family caregivers who participated in a semi-structured, one-on-one interview with the researcher. The caregivers ranged in age from 28 to 55 years with a mean age of 44. The participants were caregivers of children that ranged from age 7 to 22 previously diagnosed with POMS for at least one year or more. In addition to the in-terview, each participant also provided socio-demographic data about themselves, the child living with POMS and other individuals living within the household. Verbatim transcripts were analyzed by thematic analysis using NVivo Pro software to organize the data into themes. Demographic data was analyzed using SPSS software. Seven themes emerged from the data: stress and strain; adjusting to the diagnosis; communication; coping with the diagnosis; sources of strength; achieving balance; and the overall expe-rience of the family.;Overall findings provided insight into the family experiences of adapting to a diagnosis of POMS when there are unique challenges faced in this population. Findings also suggested implications for practice as well as implications for future research with regard to families of children with POMS.