The 46th annual meeting of the European society for blood and marrow transplantation: nurses group oral session (NO001-NO015)
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December 11, 2020
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0 min
Support Needs of Family Caregivers and Pain Management in HSCT Procedures
Overview
A longitudinal study of family caregivers during allogeneic hematopoietic stem cell transplantation (allo-HSCT) revealed persistent unmet support needs, particularly regarding information and emotional support. Additionally, a nationwide Italian survey highlighted variability and gaps in pain and anxiety management during bone marrow aspirations (BMAs), especially in adult transplant centers.
Background
Family caregivers of allo-HSCT patients face significant challenges, balancing caregiving duties with their own emotional distress. Understanding their evolving support needs is crucial to improving care. Bone marrow aspirations are invasive and painful procedures commonly performed in transplant programs, with pain and anxiety management practices differing widely, particularly between pediatric and adult settings. Optimizing these protocols can improve patient experience and outcomes.
Data Highlights
| Parameter | Value |
|---|---|
| Family caregivers enrolled | 88 |
| Caregiver relationship | 66% partners, 18% children, 10% parents, 6% others |
| Caregivers female | 76% |
| Caregivers living with patient | 67% |
| Mean caregiver age | 55 years (SD 13.2) |
| Top 3 support needs at baseline | Knowing what to expect (79%), Dealing with feelings/worries (70%), Understanding illness (65%) |
| Support needs at 16 weeks post-HSCT | Over 50% still reported top 3 needs; 'knowing what to expect' increased |
| Italian transplant centers surveyed | 59/94 (62.8%) |
| Pediatric centers | 13 |
| Adult centers | 46 |
| Centers without SOPs for BMA | 11 (18.6%) |
| Centers without patient info materials | 43 (72.9%) |
| Use of local analgesia | 100% |
| Use of oral pain therapy before BMA | Rare (95.4% do not use) |
| Deep sedation in pediatric centers | 100% |
| Deep sedation in adult centers | Not used in 49.1%, used only in particular cases in 33.9% |
| Perceived pain level of BMA (Likert 1-10) | Median 8 (SD 2.7) |
| Perceived anxiety level of BMA (Likert 1-10) | Median 8 (SD 3.0) |
Key Findings
- Family caregivers of allo-HSCT patients have high unmet support needs, especially regarding future expectations, emotional coping, and understanding the illness.
- These support needs decrease over time but remain significant even 16 weeks post-transplant, with some needs increasing.
- Most Italian transplant centers use local analgesia for BMAs, but many lack standardized protocols and patient educational materials.
- Deep sedation is universally applied in pediatric BMAs but is underutilized in adult centers, often only used upon patient request.
- Pain and anxiety during BMAs are rated as high by healthcare providers, indicating a need for improved management strategies.
- Inadequate timing of local analgesia application in some centers contributes to increased patient distress during BMAs.
Clinical Implications
Healthcare providers should proactively assess and address the evolving support needs of family caregivers throughout the allo-HSCT trajectory, including providing tailored information and psychological support. Transplant centers should standardize pain and anxiety management protocols for BMAs, ensuring appropriate use and timing of analgesia and sedation, particularly in adult patients, to improve patient comfort and procedural experience.
Conclusion
Family caregivers of allo-HSCT patients experience persistent unmet support needs that require targeted interventions. Concurrently, variability in pain and anxiety management during BMAs highlights the need for standardized, patient-centered approaches to optimize care in transplant programs.
References
- Kisch et al. 2020 -- Family Caregivers Support Needs during Allo-HSCT - A Longitudinal Study
- Gargiulo et al. 2020 -- Pain and Anxiety Management during Bone Marrow Aspirates in Italian Transplant Programs
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