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December 8, 2025BloodOpen Access

Support isn't always supportive: Relational and cultural misalignment in black sickle cell disease adult caregiving norms

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Authors

PAPersis AyehSJSeethal A. Jacob

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Overview

Qualitative analysis highlights caregivers' emotional support needs and cultural communication strategies in sickle cell disease.

Key Points

  • This study explores how caregivers assess and navigate support within the context of sickle cell disease.
  • Conducted 19 in-depth semi-structured interviews with caregivers of adults with sickle cell disease.
  • Participants included diverse caregivers self-identifying as B/AA from various states.
  • Data analyzed through Tracy's phronetic iterative approach, focusing on social cognitive theory.
  • Caregivers perceived support as often conditional, misaligned with their actual needs.
  • Emotional support was primarily visible only during illness, leading to feelings of isolation.
  • Participants adjusted help-seeking behaviors to manage emotionally taxing or judgmental support.

Cite This Study

Ayeh et al. (2025) studied this question.

synapsesocial.com/papers/69362f7f4fa91c937236e53bhttps://doi.org/10.1182/blood-2025-2662
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Strength in Silence: The Invisible Burdens of Caregivers of Adults with Sickle Cell Disease2026
  2. 2Psychosocial Dimensions of Caregiver Support in Geriatric Care: A Thematic Review2026
  3. 3Reflective Reappraisal and Coping Among Long-term Amyotrophic Lateral Sclerosis Family Caregivers2026
  4. 4Unpredictability of caregiver gaps in multiple myeloma: Results from a survey of >1000 patients2025
  5. 5How Community-Based Health and Social Care Professionals Support Unpaid Caregivers: Experiences From One Health Authority in Ontario, Canada2024 · 2 citations