A Qualitative Analysis of Self-Care Management Resources Among Caregivers of Children with Sickle Cell Disease for the Development of Parent Advocacy Toolkits
Year: 2009
Type: article
Abstract: Sickle Cell Disease (SCD) is an inherited blood disorder that affects 80,000 individuals in the United States. SCD is of public health significance as individuals with this disease are at risk of early mortality, morbidity, and disability. These conditions arise as a result inadequate clinical treatment and improper self-care management, which are potentially modifiable with optimum disease management. The Theory of Self-Care Management for Sickle Cell Disease proposes that self-care management resources have the ability to improve poor health outcomes; however, previous studies indicate that individuals with SCD and their caregivers lack appropriate resources. Consequently, this study was designed to qualitatively assess where caregivers receive self-care management resources; determine what type(s) of information has already been acquired; learn about the type(s) of self-care management resources that intended audiences need; and explore the most appropriate media and channels to disseminate self-care management resources. A focus group was conducted with ten caregivers of children with SCD to facilitate a discussion to address these specific questions. Transcripts were analyzed using the questions from the moderator's guide to generate a table to identify themes that emerged throughout the discussion. Results revealed that caregivers primarily relied on routine services to provide self-care management resources and sickle cell educational information was found to be the only self-care management resource provided. This resource provided "basic" information, causing caregivers to seek additional information from alternative sources like the internet and by asking questions. Caregivers did not acknowledge receiving additional resources, nor did they report receiving self-care management resources for their children. Caregivers acknowledged the importance of these resources and suggested that they be disseminated through all available media by obstetrician/gynecologist's offices and schools to caregivers based on their individual preferences for receiving the resources all at once or in stages. Furthermore, the caregivers began acknowledging that it may be their responsibility to provide information and education to their communities. Consequently, additional self-care management resources should be created by other caregivers and peers based on their experiences. Further research should be conducted to develop and pretest these self-care management resources and to determine their impact on health outcomes.
Author: Samantha Post
Language: English
Subfield: Genetics (clinical)
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W1506212365