Psychological interventions for people with hemophilia

Cassis, F.; Emiliani, Francesca; Pasi, John; Palareti, Laura; Iorio, Alfonso

doi:10.1002/14651858.cd010215

Cited by 16 publications

(37 citation statements)

References 19 publications

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“…Unfortunately, relatively little is known about the current baseline perceptions of patients or parents of children with haemophilia with regard to adherence to current treatments, control of disease, outlook for the future and its broader impact on psychosocial issues . Furthermore, difficulties with access to both comprehensive care and treatment may affect attitudes of PWH or parents who live in areas that are remote or that lack even basic treatment resources . The evidence base describing the range of treatment‐related factors that may affect care and quality of life in haemophilia from a patient perspective is limited, particularly for less developed countries.…”

Section: Introductionmentioning

confidence: 99%

Haemophilia Experiences, Results and Opportunities (HERO) study: treatment‐related characteristics of the population

Nugent

Kalnins²,

Querol

et al. 2014

Haemophilia

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The HERO (Haemophilia Experiences, Results and Opportunities) quantitative surveys collected information on characteristics and perceptions of adult persons with haemophilia (PWH) and parents of children with haemophilia. The aim of this article is to describe the perceptions of PWH and parents on psychosocial aspects related to treatment. Two online surveys (one for PWH, one for parents) were conducted in 10 countries. Among 675 PWH respondents, 77% reported having responsibility for their own care; 72% of 561 parent respondents had the main responsibility for their son. PWH were most commonly treated on demand (45% of 648 adults using factor concentrate), with 32% on regular prophylaxis and 23% treated on demand with short-term prophylaxis (e.g. for sports/physiotherapy). Children were most often treated with prophylaxis (65% of 549 children using factor concentrate), with 26% treated on demand and 8% treated on demand with short-term prophylaxis. Factor was generally used as instructed at home. Some respondents (41% PWH; 30% parents) had difficulties/concerns with factor availability/affordability. PWH reported more bleeds in the last 12 months than parents reporting their son's bleeds (mean 17.8 vs. 8.7). Both PWH and parents generally perceived that overall, their (their son's) haemophilia was well controlled. Results differed by country. The HERO study captured new, patient-based data regarding many facets of life relevant to PWH, including treatment. The information conveyed in this article largely represents new insights regarding perceptions of treatment and provides initial benchmark statistics for further research.

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Section: Introductionmentioning

confidence: 99%

Haemophilia Experiences, Results and Opportunities (HERO) study: treatment‐related characteristics of the population

Nugent

Kalnins²,

Querol

et al. 2014

Haemophilia

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“…Our findings intimate that greater education on the complexity of issues faced by older people with haemophilia and advocacy for retaining well-connected, comprehensive services that address the holistic needs of older people with haemophilia are required. Social workers are well-suited to these roles as evidenced by their wide-ranging involvement in the HIV and HCV transmission scares in the 1980s (Allen & Kachalsky, 2010) and their role in supporting and assisting children and young adults with haemophilia and their wider whānau with accepting and living well with their condition through education, advocacy and capacity building (Cassis, 2007). Haemophilia social workers can also draw on their experience of providing psychoeducation to families, and in identifying the possibilities and resources that can be accessed in various systems and communities.…”

Section: Discussionmentioning

confidence: 99%

“…They also highlight that social work with older people with haemophilia is an area that would benefit from more thorough examination. Other contemporary literature that addresses the connection between social work and people with haemophilia focuses primarily on organising insurance for treatment and care (which is not relevant in Aotearoa New Zealand as treatment is publicly funded) and the provision of support to newly diagnosed families, young children, and adolescents (Cassis, 2007). In contrast, during the 1980s, when human immunodeficiency virus (HIV) and hepatitis C virus (HCV) transmissions increased for people with haemophilia as a result of inadequate blood transfusion screening, the wide-ranging roles played by social workers in supporting people with haemophilia of all ages and their families were more visible in the literature (Allen & Kachalsky, 2010).…”

Section: Qualitative Researchmentioning

confidence: 99%

A qualitative exploration of the unique challenges facing older men with haemophilia and the implications for social work practice

Elliott

Deane

Staniforth

2017

ANZSWJ

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INTRODUCTION:For the first time, people who have haemophilia are facing the same aging issues as the general population, adding further complexity to their care and treatment. Worldwide, there has been little research on the psychosocial effects of growing older with haemophilia. This study investigated the holistic experiences of older men with haemophilia in Aotearoa New Zealand. Support services, particularly the roles that social workers could play in facilitating wellbeing, have also been explored. METHODS:A focus group was conducted with a purposive sample of five older men living with haemophilia in Aotearoa New Zealand. Thematic analysis through Braun and Clarke's (2006) six-phased model was used to provide insight into their experiences. FINDINGS:Substantial physical and new medical challenges existed for the participants and these had flow-on effects for their psychosocial wellbeing. Existing services were well regarded but the anticipated complexity of multi-specialist and continuing care provoked anxiety. Connection with others with similar challenges was seen as an important social resource. CONCLUSIONS:The complexities associated with an aging population of people with haemophilia has generated a need for a wide-range of services and supports. Social workers need to take new and different approaches to fill the roles of advocating for, educating, and providing support to older men with haemophilia.

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“…Therefore, preventing and treating medical‐related stress and chronic complications, and achieving the highest HRQOL are the main goals of haemophilia management nowadays . However, the challenge is to empower patients to manage their circumstances and challenges autonomously .…”

Section: Introductionmentioning

confidence: 99%

Psychosocial care for children with haemophilia and their parents in the Netherlands

et al. 2017

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Psychological interventions for people with hemophilia

Cited by 16 publications

References 19 publications

Haemophilia Experiences, Results and Opportunities (HERO) study: treatment‐related characteristics of the population

Haemophilia Experiences, Results and Opportunities (HERO) study: treatment‐related characteristics of the population

A qualitative exploration of the unique challenges facing older men with haemophilia and the implications for social work practice

Psychosocial care for children with haemophilia and their parents in the Netherlands

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