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  11. A Necessity Of Disease Management: Unpacking Young Adult Couple Experiences Of Accessing Care In The Management Of Sickle Cell Disease.
  1. Home
  3. Research Domains
  5. Health Sciences
  7. Health Services And Systems
  9. Family Care
  11. A Necessity Of Disease Management: Unpacking Young Adult Couple Experiences Of Accessing Care In The Management Of Sickle Cell Disease.

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A necessity of disease management: Unpacking young adult couple experiences of accessing care in the management of sickle cell disease.

Brittany Huelett-Lyons1, Jaqueline Williams-Reade1, Zephon Lister1

  • 1Department of Human Development Family Studies and Counseling, Texas Woman's University.

Families, Systems & Health : the Journal of Collaborative Family Healthcare
|August 21, 2025

View abstract on PubMed

Summary
This summary is machine-generated.

This study examined how couples coping with sickle cell disease (SCD) navigate healthcare together. Partners' perspectives significantly shape their shared journey, emphasizing the need for collaborative care strategies.

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Area of Science:

  • Medical Family Therapy
  • Health Psychology
  • Chronic Illness Management

Background:

  • Young adults with sickle cell disease (SCD) face unique challenges in managing their condition and interacting with healthcare systems.
  • Previous research has largely focused on individual experiences, neglecting the dyadic impact of SCD on couples.
  • This study addresses the gap by exploring the shared experiences of couples navigating healthcare with SCD.

Purpose of the Study:

  • To explore the healthcare experiences of young couples where one partner has sickle cell disease (SCD).
  • To understand how partners' perspectives influence joint navigation of the healthcare system.
  • To inform the development of couple-centered care strategies for chronic illness.

Main Methods:

  • A qualitative study involving 18 individuals (nine couples) affected by SCD.
  • Interviews were conducted between August 2021 and February 2022.
  • Transcendental phenomenology was used to analyze individual and shared perspectives on healthcare navigation.

    • Main Results:

    • Two major themes and five subthemes emerged from the analysis.
    • Partner perspectives were found to significantly influence the couple's collective experience of healthcare engagement.
    • The findings highlight the dyadic nature of navigating chronic illness within the healthcare system.

    Conclusions:

    • Incorporating both individual and shared perspectives is crucial for developing effective, collaborative healthcare strategies for young adults with SCD.
    • Improving disease management and healthcare interactions can enhance the well-being of couples managing chronic illness.
    • This research underscores the importance of a systemic approach to supporting couples affected by sickle cell disease.