Objective:
Describe social worker and nurse perspectives on the Hemophilia Experiences, Results and Opportunities (HERO) results from Canada.
Methods:
Adults with hemophilia (“adults,” ≥18 years) and parents of children (<18 years) with hemophilia (“parents”) were recruited through local hemophilia organizations and completed an online psychosocial assessment. Advisory board meetings with Canadian social workers and nurses were held to discuss the HERO results in January and April 2013, respectively.
Summary:
Key psychosocial issues identified by social workers and nurses included issues with sex life, pain, and employment. One-half (9/18) of adults with hemophilia in Canada reported that hemophilia had affected the quality of their sex life. Social workers noted that there is a need for more discussions and professional support regarding sexual intimacy, in addition to a need for more training for healthcare professionals (HCPs) on how to engage in conversations about sexual intimacy. Possible solutions to this issue provided by nurses include handouts to start conversations, education on strategies for HCP seminars, websites with patient testimonials, and information nights through local hemophilia chapters. Overall, 9/30 adults with hemophilia reported that pain had interfered with their daily life extremely or quite a lot. Of 27 adults, 9 reported pain all the time and 13 reported pain all the time that gets worse when they have a bleed. Social workers noted that there is a lack of chronic pain care and there needs to be an increase in sensitivity toward pain issues. Solutions proposed by nurses included a literature review about pain-assessment tools for hemophilia, developing tools to teach parents how to assess pain, developing an application for assessing and managing hemophilia-specific pain, offering pain intervention, developing distraction tool kits, and teaching alternative ways to cope with pain. Only 15/29 Canadian adults with hemophilia were employed; 35/39 parents were employed. Social workers noted that there is discrimination at work and school. To improve career guidance, nurses suggested the following: explore vocational issues, increase hemophilia treatment center (HTC) awareness, capture facts around what is or is not possible with respect to jobs, vocational support programs to start earlier, and clarify the HTC’s role in advocacy.
Conclusions:
HERO provided key insights into psychosocial issues facing Canadian adults with hemophilia and Canadian parents of children with hemophilia. Nurses and social workers provided strategies that could help improve the lives of both patients and parents.