FC02
A Qualitative Descriptive Study Exploring the Adaptation of Families of Children with Multiple Sclerosis from the Perspective of Caregivers
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. To date, there has not been any research to explore factors that influence the adaptive process that takes place in families of children with POMS.
Objectives:
To conduct a qualitative descriptive study to explore family factors that influence adaptation in families of children with POMS seen at a southeastern specialty center. The specific aims of the study are to: 1) explore the initial and ongoing psychosocial, financial, emotional and behavioral impact on families who have a child with POMS; 2) explore how the family adjust to raising a child with POMS; 3) explore strategies that are utilized for coping and balancing the needs of the child with POMS and their family; and 4) identify the resources that are available to families to assist in caring for a child with POMS.
Methods:
Purposeful sampling of 20 family caregivers of children with POMS who will participate in a semi-structured, one-on-one interview. Demographic data about the participants, the child living with POMS and other individuals living within the household will be gathered to develop a detailed description and therefore, validate the findings in the study.
Results:
After each interview is transcribed, they will be analyzed using qualitative thematic data analysis. The demographic data will be analyzed using statistical software to develop descriptive data of the participants, the child with POMS and those individuals who live in the household. The results of this study are pending.
Conclusions:
The conclusions of this study are pending.