A Pragmatic Guide to Qualitative Analysis for Pediatric Researchers

Background Little is known about the strategies utilized by family caregivers managing medications for their children with special healthcare needs (CSHCN), those who require higher than normal care due to their multifaceted healthcare needs. Medication management strategies are a set of methods or techniques developed or adapted by caregivers to overcome medication‐related barriers and ensure successful therapeutic outcomes. An in‐depth understanding of such strategies is a requisite first step toward developing interventions that support caregiver‐mediated medication management. Methods We conducted semi‐structured qualitative interviews with 20 family caregivers of CSHCN who were recruited as part of a community engaged research between Purdue University College of Pharmacy and Indiana Family to Family. Interviews were conducted through zoom and audio recorded. Each participant was provided with a $50 honorarium. Interviews were professionally transcribed and content analyzed to generate categories of medication management strategies. Results Five overarching categories of medication management strategies were identified. These included (1) medications, supplies and equipment inventory management; (2) organizing and tracking medications, supplies and equipment; (3) medication‐related communication, coordination and engagement; (4) medication administration and (5) researching and learning about medications. Within each category, caregivers developed or adapted specific strategies to overcome barriers in diverse care contexts (e.g., when interacting with healthcare systems, school staff or other members of their household). Conclusion These findings can inform current clinical practice through improved awareness of different strategies employed by caregivers and lay a foundation to develop interventions designed to support caregiver mediated medication management.

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“…Interviews were professionally transcribed and subjected to a thematic content analysis (Kiger & Varpio, 2020;Thompson et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

“…Interviews were professionally transcribed and subjected to a thematic content analysis (Kiger & Varpio, 2020; Thompson et al, 2022). In doing so, transcripts were coded for key ideas or strategies.…”

Section: Methodsmentioning

confidence: 99%

Medication management strategies by family caregivers of children with special healthcare needs

Min

Wheeler²,

Hennessy³

et al. 2023

Child

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“…Inductive reflexive thematic analysis was employed to explore and interpret patterns of meaning within the interview data. Reflexive thematic analysis is an established qualitative interpretatively focused approach that is commonly used to analyze qualitative data ( Thompson et al, 2022 ). Unlike other qualitative approaches such as interpretative phenomenological analysis ( Smith, 1996 ), reflexive thematic analysis is theoretically flexible, meaning that it can be used with a diverse range of theoretical frameworks ( Braun & Clarke, 2022 ).…”

Section: Methodsmentioning

confidence: 99%

Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study

Jordan,

Parchment,

Gauntlett-Gilbert

et al. 2024

Journal of Pediatric Psychology

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Objective Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. Methods Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. Results Two themes were generated. Theme 1, “overstimulated and striving for control” described how adolescents’ experience of heightened sensitivity enhanced adolescents’ levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, “not everyone fits the mold” captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents’ ability to engage with and benefit from the standard treatment for chronic pain. Conclusions Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

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“…At least two trained research staff will perform inductive content analysis [ 52 , 53 ] on open-ended survey items and report emergent themes by study group (VDOT vs. attention control) and participant type (adolescent/young adult vs. caregiver). Kappa scores will be calculated to report inter-rater reliability.…”

Section: Methodsmentioning

confidence: 99%

Study protocol for ADHERE (Applying Directly observed therapy to HydroxyurEa to Realize Effectiveness): Using small business partnerships to deliver a scalable and novel hydroxyurea adherence solution to youth with sickle cell disease

Walden,

Brown,

Seiguer

et al. 2024

PLoS ONE

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Sickle cell disease (SCD) is an inherited blood disorder that affects approximately 100,000 Americans, primarily from underrepresented racial minority populations, and results in costly, multi-organ complications. Hydroxyurea, the primary disease-modifying therapy for SCD, is effective at reducing most complications; however, adherence to hydroxyurea remains suboptimal and is the primary barrier to clinical effectiveness. Video directly observed therapy (VDOT) has shown promise as an adherence-promoting intervention for hydroxyurea, yet previous VDOT trials were limited by high attrition from gaps in technology access, use of unvalidated adherence measures, and healthcare system limitations of delivering VDOT to patients. As such, we fostered a small business partnership to compare VDOT for hydroxyurea to attention control to address previous shortcomings, promote equitable trial participation, and maximize scalability. VDOT will be administered by Scene Health (formerly emocha Health) and adherence monitoring will be performed using a novel electronic adherence monitor developed to meet the unique needs of the target population. Adolescent and young adult patients as well as caregivers of younger patients (<11 years of age) will be recruited. In addition to visit incentives, all participants will be offered a smartphone with a data plan to ensure all participants have equal opportunity to complete study activities. The primary objectives of this pilot, multi-center, randomized controlled trial (RCT) are to assess retention and sustained engagement and to explore needs and preferences for longer-term adherence monitoring and interventions. This RCT is registered with the National Institutes of Health (NCT06264700). Findings will inform a future efficacy RCT applying VDOT to hydroxyurea to address adherence gaps and improve outcomes within this vulnerable population.

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A Pragmatic Guide to Qualitative Analysis for Pediatric Researchers

Cited by 13 publications

References 63 publications

Medication management strategies by family caregivers of children with special healthcare needs

Medication management strategies by family caregivers of children with special healthcare needs

Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent–maternal dyadic study

Study protocol for ADHERE (Applying Directly observed therapy to HydroxyurEa to Realize Effectiveness): Using small business partnerships to deliver a scalable and novel hydroxyurea adherence solution to youth with sickle cell disease

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