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

Abstract

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.

“What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia

“…H aemophilia is a genetic condition, primarily affecting males [1] . It is a lifelong condition that impairs the clotting ability of the blood, resulting in prolonged internal or external bleeding [2] . This bleeding occurs due to the lack of an essential blood-clotting factor [1] .…”

“…These haemorrhages, or 'bleeds', can occur spontaneously or following trauma; they occur in the joints, muscles and soft tissues, resulting in damage, bruising or swelling, often accompanied by pain and physical restrictions [3] , and in the absence of treatment they can cause crippling arthropathy [1] . Historically haemophilia has contributed to a shorter life expectancy, but due to treatment advances [3] including the availability of safe and effective blood coagulation treatment [2,4] , life expectancy for people with haemophilia is now approaching that of the general male population [5] , and life with the condition has drastically improved in recent generations.…”

“…Calculations based on 50 respondents rather than 51 as data for one respondent was incomplete 2. Calculations based on 45 respondents who reported adherence to treatment 3.…”