Reasons for failure to continue home therapy in patients with hemophilia: A qualitative study

Background

Home therapy for hemophilia reduces pain, deformity and incidence of complication-induced hospitalizations. Therefore, it is an important component of comprehensive hemophilia care. Unfortunately, most hemophilic families in Shanxi province, China do not continue home therapy.

Objective

To analyze the reasons that hemophilic families do not continue home therapy and to provide a foundation for formulating targeted interventions by the Hemophilia Treatment Center (HTC) in Shanxi Province.

Methods

A qualitative phenomenological approach using purposeful sampling of 17 hemophilic families, two physicians, and one nurse from 11 branches across 11 cities in Shanxi Province. Interviews were recorded, transcribed verbatim and analyzed using qualitative content analysis.

Results

Four themes were identified: (1) home therapy was generally positively evaluated; (2) concerns about the safety of home therapy; (3) an imperfect social medical security system; and (4) inadequate continuous nursing of hemophilia.

Conclusions

Home therapy for hemophilia remains in a preliminary stage in Shanxi Province, and inadequate family and social support systems have obstructed the implementation of home therapy. It is necessary to develop a home therapy model suitable for hemophilic families in Shanxi Province as soon as possible. Such a model would improve the community and home care medical systems for hemophilia and guarantee home therapy throughout the entire medical care system, thus enabling more hemophilic families to carry out home therapy. Achieving these goals requires urgent research and attention from medical staff.