While it has been well established that bleeding disorders camps (BDCs) in the U.S. have played a key part in empowering affected children for decades, comprehensive knowledge of their capacity and functioning is historically lacking.
In order to fill these knowledge gaps, a pair of national surveys were designed, one for BDC administrators (CAs) and one for healthcare providers (HCPs). Analysis of the results, “A Descriptive Study of United States Bleeding Disorder Camps,” were published in The Journal of Haemophilia Practice (JHP).
Developed through a collaborative effort by both the National Hemophilia Foundation’s (NHF’s) Research Team and members of its Nursing and Physical Therapy Working Groups, the surveys were designed, in part, to uncover the types of inconsistencies and vulnerabilities in the BDC system that could jeopardize the current model’s long-term viability.
While every effort was made to cast a wide net by including all U.S. BDCs in the survey process, the authors ran up against certain limitations such as undeliverable emails, firewalls, and non-responses. Despite these and other limitations, a 30.5% response was achieved, encompassing 121 respondents (101 HCPs and 20 CAs).
Of the total 59 BDC camps in the US, 46 (78%) were represented in the study; 19 camps were represented by the 20 CA respondents; 37 camps were represented by the 75 HCPs who had participated in camp during the past five years. The number of HCPs per camp who completed the survey ranged from 1 to 12. Eighteen out of 73 (24.7%) HCPs reported participation in multiple camps.
The surveys gleaned a wealth of information relevant to BDC policies and procedures, camp composition, funding, administration, plus HCP staffing expectations of their HTCs, among other topics.
The authors identified certain disparities and financial challenges that have direct impact on HCP participation in BDCs. “In general, diminishing financial resources threaten the existence of BDCs. Fifty percent of the CAs identified a combination of funding sources, with chapters and HTCs holding a significant responsibility. All HCP respondents who participated in camp indicated some form of compensation. Those who did not participate in camp cited barriers associated with the use of personal time, employers not compensating or allowing time to participate, and not being licensed in the state where the BDC was held. This may explain why 70% of camps allow specialty pharmacy, specialty homecare, or industry representatives to serve as camp staff,” explained the authors.
Another theme of these surveys was an uneven adherence to available BDC guidelines, which include instructions for formal trainings for camp staff on a host of matters, such as proper medication storage.
According to the JHP article, “Despite the existence of state, national, NHF, and American Camp Association guidelines, adherence is variable. Approximately half of the CAs reported following these guidelines. NHF’s 2017 Health Center Guidelines for Camps Serving Persons with Bleeding Disorders indicate that all staff should receive education, which the authors interpret as at least an ‘orientation’. Despite this recommendation, many respondents reported no official orientation.”
Another eye-opening finding was relevant to self-infusion education, a fundamental component of BDC programs for many years, whereby children learn to administer their own factor under the guidance of expert camp staff. While this practice can offer tremendous benefits for affected children, feedback suggests that in many instances there is little-to-no post-instruction follow up with children. In fact, 70% of CAs and 44.4% HCPs surveyed reported zero follow-up. This represents a lost opportunity to reinforce educational gains and to monitor a child’s fledgling progress towards independence.
Instead, the authors encourage HTCs and parents to work closely post-BDC to develop a follow-up program, complemented with practical educational resources such as a self-infusion tip sheet for parents. They also recommend implementation of a “standardized quality improvement” (QI) program to increase the effectiveness of self-infusion education programs at camps.
The authors go on to suggest that a positive correlation between camp participation and enhanced independence will cultivate the value of BDCs, with positive implications for funding moving forward. Challenges notwithstanding, the authors see ample opportunities for further study of, and enhancements to, BDCs.
“While BDCs are known by reputation to be very successful, this survey demonstrates opportunities for continued growth and research. Future studies should focus on assessing the multiple benefits BDCs provide to those who attend them, not only to understand how camps can better serve the BD community in the future, but also to improve the experience of the camper addressing their increasing psychosocial and medical complexity,” concluded the authors.
Santaella, Maria E., Nichols, Cynthia and Witkop, Michelle. "A descriptive study of United States bleeding disorders camps" The Journal of Haemophilia Practice, vol.8, no.1, 2021, pp.1-10. https://doi.org/10.17225/jhp00171