While social workers have functioned as essential members of the multidisciplinary care teams at the core of U.S. hemophilia treatment center (HTC) network since its establishment in 1975, a breakdown of their primary roles, both actual and “ideal,” have not been clearly established. The latter ideal role is important as it denotes a social worker’s perceived roles as that they would like to practice, and feel are the most important for the bleeding disorder patients and families that they serve.
A new descriptive study was therefore conducted to engage SWs via an online survey on six key roles/work tasks, including counselling, case management, financial/insurance, outreach/programs, administrative, and grants/research. The purpose of this research was to uncover significant disparities between actual and ideal roles, and to identify potential barriers that could be contributing to these disparities.
A paper detailing their findings, “The Actual and Ideal Roles of Haemophilia Treatment Centre Social Workers in the United States and the Barriers to Ideal Roles,” was published in the journal Haemophilia. This research project was financially supported a by the National Hemophilia Foundation’s Social Work Working Group (SWWG) Award of Excellence, which was granted in 2015.
Study design, survey dissemination, data analysis, and publication of the results were all carried out by a highly experienced group of HTC SWs.
In December 2015, investigators utilized Survey Monkey to distribute their 40-question survey to 147 SWs employed at 141 federally funded HTCs. In all, 81 SWs completed the survey, representing a 55% response rate. The availability of data from a 2010 HTC SW survey gave the authors an opportunity to make some demographic comparisons relevant to gender, age, education, and salary.
The heart of the study however produced some eye-opening disparities between actual and ideal roles within a typical work week. Overall, respondents cited case management as the actual role that occupied most of their time (48%), followed by financial/insurance assistance (30%), with their remaining time spent fulfilling counselling, outreach/programming, administrative tasks, and grants/research roles.
The lack of alignment is readily apparent in the ideal role responses. 51% of respondents actually selected counselling as their ideal, hence most important role, followed by case management at 27%. The remaining ideal roles were ranked significantly lower with financial/insurance assistance at 13%, outreach at 10%, and administrative tasks and grants/research rated 0%. The presence of certain disparities in actual vs ideal roles were persistent within social work practice amongst specific client subgroups, including pediatric patients, adult patients, and family members.
These findings beg the question about what barriers are preventing HTC SWs from preforming their ideal roles. Additional survey answers revealed potential barriers relevant to autonomy, as only 32% reported determining their own roles within the HTC. Instead, 43% indicated that HTC staff determined their roles, with the remaining 25% designated by either the hospital/university/host institution (19%) or actual patients and families (6%).
Further barriers cited by 42% of respondents centered on conflicts between budgeted work time vs. actual work time spent. Unmet roles, including those related to outreach, administration, counselling, finance, case management, were associated with knowledge/training gaps were noted as contributing factors.
34% indicated that additional budgeted time and staff would help address this issue, while 46% cited the need for more training in grants/research and 26% reported a need for more training in financial/insurance issues. Respondents also noted training insufficiencies in the early stages of their HTC careers, as 30% felt that education they received within the first year did provide an adequate hemophilia knowledge base, and 12% received no initial training.
Another notable finding was relevant to supervision, as only 51.9% of respondents reporting having received supervision from their HTC or institutional staff, leaving nearly half of the respondents somewhat adrift and, in some instances having to pay out-of-pocket for their own supervision.
“Since most SWs work alone at their HTC, they may not have a mentor to guide and educate them in their roles. The multidisciplinary small team approach utilized in HTCs may also add role requirements such as outreach, administrative tasks, and assisting with grants and research, posit the authors. “HTC staff expectations, as well as individual preferences and expertise for certain tasks, may lead to blurring of roles among SWs, nurses and other HTC staff. This may also be a source of role confusion in these small work teams.”
The authors hope this study helps prompt further discussion and investigation on this important topic, establishing clarity for this vital provider group, and refocus attention on counselling, arguably a social worker’s most fundamental role. “More research is needed to determine and validate SW roles in HTCs in the United States, and to explore barriers to the performance of ideal SW roles, including but not limited to salary, training and supervision, and self-determination of roles. Research could also seek to demonstrate positive outcomes of HTC SW counselling, when supported by HTCs and their parent institutions.”
Geary MK, Kachalsky E, Parnes A. The Actual and Ideal Roles of Hemophilia Treatment Center Social Workers in the United States and the Barriers to Ideal Roles. Haemophilia. 2021;1-7. https://doi.org/10.1111/hae.14414