Free
Poster Session
Issue Date: July 2015
Published Online: July 01, 2015
Updated: April 30, 2020
How Do We Live With a Chronic Condition Without Expectations? A Family’s Story of Thriving With Dravet Syndrome
Author Affiliations
  • Medical University of South Carolina
  • Medical University of South Carolina
Article Information
Neurologic Conditions / Pediatric Evaluation and Intervention / Translational Research
Poster Session   |   July 01, 2015
How Do We Live With a Chronic Condition Without Expectations? A Family’s Story of Thriving With Dravet Syndrome
American Journal of Occupational Therapy, July 2015, Vol. 69, 6911520180. https://doi.org/10.5014/ajot.2015.69S1-PO5103
American Journal of Occupational Therapy, July 2015, Vol. 69, 6911520180. https://doi.org/10.5014/ajot.2015.69S1-PO5103
Abstract

Date Presented 4/17/2015

This research aims to increase awareness of the lived experiences of parents and siblings of a family member with Dravet syndrome (DS) and the impact of DS on the family’s engagement of meaningful occupations for the development of family-centered and occupation-based occupational therapy interventions.

SIGNIFICANCE: This is the first study to examine the lived experiences of parents and siblings of a family member with Dravet syndrome (DS) and its impact on the family’s meaningful occupations.
INNOVATION: Engaging a family with a first-degree relative with DS in a Photovoice experience was an innovative project that fills a need for participatory and translational research (i.e., bench to bedside). With an occupational therapist’s (OT’s) lens, in this project researchers collected data within a family’s natural environment/context, examined the data, and applied the findings to their personal context.
APPROACH: The purpose of this study is to examine the perspectives of parents and siblings of a family member diagnosed with DS and to describe the impact of DS on the meaningful engagement in occupations of the family. Occupational therapy’s domain is “achieving health, well-being, and participation in life through engagement in occupation” (American Occupational Therapy Association [AOTA], 2014, p. S2). Occupational deprivation and occupational disruption are two concepts experienced by families with children diagnosed with chronic conditions. These concepts reveal deprived conditions and their causes and identify barriers to meaningful participation in occupations. DS is a rare, chronic, and severe form of epilepsy with behavioral and development issues, impaired movement, growth and nutrition issues, sleeping difficulties, and autonomic nervous system disruptions. Caring for children with DS poses high demands and unique problems for their families.
METHOD: This non-experimental, participatory study used Photovoice methods with a family of 4 (2 parents and 2 siblings, aged 13 to 53 yr) of a boy with DS. Participants completed two Photovoice training sessions. Data collected were demographics, participant-generated photos, and interviews. The family and researchers established two photo assignments. Phase 1 of the data analysis consisted of participant analysis of photos guided by an adaptation of Wang’s SHOWED approach during interviews.
Phase 2 of the data analysis consisted of researchers’ initial analysis of the interviews. Content analysis was used for initial codes, and summary statements were generated for each code on the basis of the World Health Organization’s International Classification of Functioning, Disability and Health (ICF). Summary statements were combined into key themes.
RESULTS: The overarching theme—“Live, don’t expect”— described the family’s perspective on living with a child diagnosed with a chronic condition. Despite the complexities of DS, it did not disrupt the family’s engagement in their preferred occupations. Two secondary themes emerged: normalcy despite the impact of DS and the daily realities of DS. Family dynamics and interactions during daily life as well as major events posed challenges; yet, established support systems, relationships, and attitudes promoted activity participation.
CONCLUSION: This study identified an enhanced level of functioning by a family with a first-degree relative with DS. These data reveal that interruptions of prolonged preclusion from engagement in occupations of necessity and/or meaning are observed within families of children diagnosed with chronic conditions. Other families with children with chronic conditions and OTs may use Photovoice to identify and share the realities of their lives. This research approach may promote the development of effective family-centered interventions. Limitations of this study include self-censorship of data presented by study participants and limited OT knowledge related to families living with the effects of DS.
References
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