Challenges facing community-dwelling adults with hemophilia: Implications for community-based adult education and nursing

Abstract

Community-dwelling adults are members of society residing in community settings. Communitybased adult education is designed for local residents and groups, to enable them to improve their quality of life within their community. Hemophilia is a bleeding disorder that can be inherited or acquired. World Hemophilia Day 2018 helped to raise awareness about the importance of sharing knowledge and the experience of hemophilia, as well as to improve access to care and treatment among people with this bleeding disorder. We used the documentary method of research, which has been adopted in recent review articles, to collect and analyze the findings of published literature on hemophilia. Our results showed that community-dwelling adults with hemophilia have concerns that merit the attention of government and non-governmental agencies. Some challenges faced by many community-dwelling adults with hemophilia include the cost of treatment and employment challenges. Herein, we discuss the implications for community-based health education and nursing with respect to patient care, adult education, nursing education, management, research, and policy. Finally, the authors note that sustainable efforts are needed in the provision of local, national and international leadership and educational resources to improve and sustain health care for community-dwelling adults with hemophilia.

Defining the Impact of Social Drivers on Health Outcomes for People with Inherited Bleeding Disorders

“…Additionally, pain showed a wide duration range, varying from 1 month in three age groups to 612 months (51 years) in the adult’s group [ 18 ]. While Okide et al, conducted a literature review, a finding from published literature was that many community-dwelling adults with hemophilia may choose to work in jobs that are unsuitable for them to obtain or maintain insurance coverage [ 17 ]. At the same time, many with insurance coverage face rising costs of co-payments and lifetime restrictions [ 17 ].…”

“…Major themes analyzed for the articles that fell under Education were increased school absences and positive impacts of a prophylactic treatment. In the literature review from Okide et al, the authors recommend that community-based adult education and nursing interventions rooted in psychosocial counseling and support services can be helpful in this regard [ 17 ]. As reported by Pinto et al, among adults, work/school absences were reported by 42.4% participants and could last up to 293 days.…”

“…Furthermore, a survey conducted by Pinto et al, in Portugal showed that people with hemophilia do not experience higher unemployment than the general male population, nonetheless, 50% of the sample population declared an impact of the disease on their professional activity [ 18 ]. A literature review conducted by Okide et al, found that many community-dwelling adults with hemophilia may choose to work in jobs that are unsuitable for them to obtain or maintain insurance coverage [ 17 ]. Such a finding emphasizes the remaining unmet needs for reducing the economic burden with sustainable population health strategies and treatment options for people living with inherited bleeding disorders.…”

“…Furthermore, the need for a multidisciplinary comprehensive care team to address physical, psychosocial, and emotional needs of people with hemophilia and other inherited bleeding disorders as a priority target in the improvement of health status and QOL in people with bleeding disorders was raised [ 14 , 17 , 18 , 19 , 27 ]. Given the COVID-19 pandemic, this is a crucial time to lend a voice to the importance of patient access to a multidisciplinary team to deliver whole-person, integrated, accessible, and equitable healthcare by interprofessional teams [ 28 ].…”

Terapêutica Domiciliar Em Pacientes Hemofílicos: Orientações Da Enfermagem No Cuidar

“…Dentre os muitos desafios enfrentados por adultos acometidos por hemofilia estão os custos financeiros do tratamento, trabalhos inadequados, vulnerabilidade ao sofrimento, preocupações com a perda de independência e com a autorrevelação, etc (Okide et al, 2019). Por isso, o aconselhamento em saúde e orientação pelo profissional de enfermagem torna-se importante ao auxiliar os familiares e pacientes fornecendo orientações eficazes para o manejo, processo de luto e lidar com a convivência com a hemofilia, bem como a escolher uma carreira adequada e buscar a educação ou o treinamento necessário para atingir seus objetivos pessoais (OKIDE et al, 2019).…”