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

Zhao, Hua; Zhao, Peng; Wang, Yanni; Guo, Yulin; Wu, Ruihong

doi:10.1016/j.cnre.2017.10.004

Cited by 3 publications

(5 citation statements)

References 13 publications

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“…Portanto, para além de unidades de serviços especializados, o tratamento domiciliar além de mais cômodo para os pacientes, pode gerar também economia para a união, pois o cuidado integrado ao paciente hemofílico deve incluir a supervisão por uma equipe multidisciplinar coordenada e centralizada (Yeung et al 2016). Dado ressaltado por Zhao et al (2017) ao descreverem que enfermeiros profissionais de hemofilia desempenham papéis importantes de coordenação no tratamento multidisciplinar da hemofilia. No entanto, tanto a contratação quanto os níveis de habilidade dos enfermeiros envolvidos nos cuidados com a hemofilia precisam ser promovidos.…”

Section: Resultsunclassified

“…A terapia domiciliar para hemofilia se refere à prevenção, avaliação e tratamento do sangramento pelo hemofílico e/ou seus familiares em situações rotineiras em casa, essa estratégia tem sido aprovado pelos pacientes e famílias geralmente por representar diversos benefícios do treinamento para hemofiliaterapia no domicílio (Zhao et al, 2017).…”

Section: Considerações Finaisunclassified

See 1 more Smart Citation

Terapêutica Domiciliar Em Pacientes Hemofílicos: Orientações Da Enfermagem No Cuidar

Lima¹,

Barbosa²,

Damasceno³

et al. 2021

Pesquisa, Saúde E Graduação: Monografias Que Entrelaçam E Contribuem Para O Ser-Profissional

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Section: Resultsunclassified

Section: Considerações Finaisunclassified

Terapêutica Domiciliar Em Pacientes Hemofílicos: Orientações Da Enfermagem No Cuidar

Lima¹,

Barbosa²,

Damasceno³

et al. 2021

Pesquisa, Saúde E Graduação: Monografias Que Entrelaçam E Contribuem Para O Ser-Profissional

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“… 28 However, a recent study from the Shanxi province reported that home therapy for hemophilia remains in a preliminary stage due to certain obstacles. 29 Certain factors behind unsuccessful home therapy are: Lack of professional knowledge and home therapy skills, Lack of confidence in carrying out home therapy, Limited access to therapy. Low usage of prophylaxis care: Primary prophylaxis is usually not possible in China because of inadequate resources, particularly in rural areas.…”

Section: Challenges In Chinamentioning

confidence: 99%

Section: Challenges In Chinamentioning

confidence: 99%

The existing scenario of haemophilia care in Canada and China - A review

Pratap¹,

Misra²,

Varun³

et al. 2020

Hematology, Transfusion and Cell Therapy

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Hemophilia is an X-linked recessive genetic disorder which affects approximately 400,000 people globally. Differing healthcare reimbursement systems, budgetary constraints and geographical and cultural factors make it difficult for any country to fully deliver ideal care. Although developed countries have sufficient treatment products available, they are burdened by the higher expectation of outcomes, coupled with insufficient supportive care to monitor adherence and outcomes and to implement regular follow-up. In contrast, developing regions may not have ready access to factor replacement, but have developed excellent physiotherapy and rehabilitation programs. Although there are multiple studies that have attempted to assess country-specific variations in hemophilia care, very few compare hemophilia care between economically unequal countries and the challenges in achieving optimal hemophilia care. This literature review tries to bridge this gap and throws light on the country-specific differences in epidemiology, standard of hemophilia care and challenges faced in Canada and China. Data sources resulted in 20 studies (11 from Canada and 9 from China), which were reviewed. In a developed country, the main advantages are: the early treatment of bleeding episodes and the presence of a specialized interdisciplinary and comprehensive treatment concept. This is not the case in most developing countries, where the government does not have the resources to buy the necessary quantities of coagulation factors in the face of more urgent health priorities and hardly a few patients can afford to pay for their own treatment, even the on-demand home therapy.

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“…For example, a Danish study explored female patients' experience of fatigue, and the findings suggested that patients had physical and mental symptoms of fatigue that led to significant limitations on their social interactions, life and work, and these triggered some negative emotions such as anger and frustration (Beck et al, 2013). Chinese scholars found that fatigue hindered patients from living positively with CD, and understanding, care and support from family members, medical staff and society were needed to promote recovery of the patients' social functions (Zha et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

The symptom experience of newly diagnosed Chinese patients with Crohn's disease: A longitudinal qualitative study

Chen

Zhou

2023

Journal of Advanced Nursing

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AimsTo longitudinally explore the symptom experience of Chinese patients with Crohn's disease within the first year following their diagnosis.DesignA longitudinal qualitative study.MethodEighteen newly diagnosed Chinese patients with Crohn's disease were recruited through purposive sampling. Semi‐structured interviews were conducted at four time points: soon after diagnosis, 3, 6 and 12 months post‐diagnosis. Data were collected between January 2021 and February 2022. Conventional content analysis was used for data analysis of each time point. Afterwards, the data of each time point were compared longitudinally. COREQ checklist was followed.ResultsThree themes and eight sub‐themes were formed through analysis: feelings towards symptoms (symptoms make me feel uneasy, symptoms make me feel inferior and symptoms make me feel helpless); acceptability of symptoms (difficult to accept, have to accept, be able to accept); functions of symptoms (assessing disease conditions and treatment effects, warning of disease management).ConclusionsOverall, the negative emotions related to symptoms gradually decreased over time, and the patient's acceptance of symptoms increased within the first year following diagnosis. In addition, when the disease was in remission after treatment, the warning function of symptoms gradually weakened.ImpactThe process of how patients accept their symptoms found in this study provides a basis for nurses to improve patients' acceptance of symptoms and reduce their symptom‐related negative emotions. This study also emphasizes the phenomenon that patients gradually ignore some symptoms with their increased acceptance level, which warrants additional health education to strengthen their awareness of self‐management.Patient or public contributionNo patient or public contribution was required to design or undertake this study. Patients contributed only to the data collection and member checking.

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

Cited by 3 publications

References 13 publications

Terapêutica Domiciliar Em Pacientes Hemofílicos: Orientações Da Enfermagem No Cuidar

Terapêutica Domiciliar Em Pacientes Hemofílicos: Orientações Da Enfermagem No Cuidar

The existing scenario of haemophilia care in Canada and China - A review

The symptom experience of newly diagnosed Chinese patients with Crohn's disease: A longitudinal qualitative study

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