Canadian Social Worker and Nurse Perspectives on the Haemophilia
Experiences, Results and Opportunities (HERO) Study Results From Canada
Introduction


The Haemophilia Experiences, Results and Opportunities (HERO) initiative aimed
to increase the understanding of psychosocial issues impacting people with
haemophilia by collaborating with an International Advisory Board that included
healthcare providers (HCPs), patients, and caregivers.
Ten countries participated between June 2011 and February 2012 (Figure 1).
2. A. Iorio
McMaster University
Hamilton, ON, Canada
HERO results: sex life

Social Workers
Haemophilia Nurses
Key
Key insights
insights and
and unmet
unmet needs
needs
Proposed
Proposedsolutions
solutions

Of the 29 Canadian adults with haemophilia who responded on employment,
15 (52%) were employed full-time, employed part-time, or self-employed.
– Overall, 4 patients (14%) reported long-term disability.

Of the 39 Canadian parents of children with haemophilia who responded on
employment, 35 (90%) were employed full-time, employed part-time, or were
self-employed.
HERO results: pain


HCPs need training on how to engage and take cues from
patients and parents.

HCPs need to discuss sex life more, and there is a need for
professional support on how to approach the topic (eg, a timeline
for parents, brochure).
USA
UK
Spain
Italy
Germany


Sex life
Possibility to approach the topic more appropriately with patients
(eg, give the parent a brochure with timeline for talking to kids).

Handouts to start conversations.

Educational seminars on strategies for HCP seminars.

Website with patient testimonials.
– Create business cards linking to the website.

Youth group discussions through local haemophilia chapters.

Information nights through local haemophilia chapters.
HCPs should ask about sex life at every opportunity.


There is still discrimination at work and school; this has a negative
impact on patients and parents.

Social workers question whether patients are underperforming
(eg, salary) in relation to education.

Social workers wonder whether they are doing a good enough job
educating about the future and advice for transition (eg, should
they recommend desk jobs?).

Capture the facts (what’s possible or not with respect to jobs).

Vocational support programs need to start early.

Prophylaxis research (is there a link between adherence and
good job choices?).

Clarify Haemophilia Treatment Centre role in advocacy.

Develop a literature review about pain assessment tools for
haemophilia.

Teach parents how to assess pain (develop tools for this).

Develop an application for assessing and managing
haemophilia-specific pain.

Offer pain intervention (pain teams specialist clinic).
Develop distraction tool kits.
Teach ways to cope (eg, pharmacologic, alternative, relaxation
methods).


To describe social worker and haemophilia nurse perspectives on the Canadian
HERO results.


Methods


Surveys were developed for adults with haemophilia (≥18 years) or parents of
children (<18 years) with haemophilia either currently receiving factor replacement
or with spontaneous joint bleeding in the past 12 months.
Advisory board meetings with Canadian social workers and nurses were held to
discuss the HERO results in January and April 2013, respectively.

Results


Overall, 30 adults and 41 parents from Canada responded to the HERO survey.
– Adults with haemophilia from Canada reported a median age of 38 years.
– Parents of children with haemophilia reported a median age of 37 years.
Independently, both social workers and nurses identified the same key
psychosocial issues.
– These included issues with sex life, employment, and pain (Figure 2).

Employment
Social workers wonder what the impact is on parent’s (both
mother and father) career.
Explore vocational issues and increase Haemophilia Treatment
Centre awareness of the issues.
Social workers wonder how they can do a better job before
patients start work (eg, disclosure, their rights).
In Canada, there is a higher percentage of patients reporting
suffering from pain compared to the US and total HERO
population.
– Social workers wonder whether pain recognition is “better” in
Canada compared to other countries?
There is a lack of chronic pain care/service.
Pain

There is a lack of acute pain treatment in children.


There needs to be an increase in sensitivity to pain issues.

Presented at NHF’s 65th Annual Meeting; Anaheim, California; October 3-5, 2013.
Overall, 9/30 (30%) adults with haemophilia reported that in the past 4 weeks, pain
had interfered with their daily life extremely or quite a lot; 8/30 (27%) reported
moderate interference, 13/30 (43%) reported a little or no interference.
– Of 27 adults, 9 (33%) reported pain all the time and 13 (48%) reported pain all
the time that gets worse when they have a bleed; 3 (11%) reported pain only
when a bleed occurs and 2 (7%) did not know when pain occurs.
Items that the nurses identified they would do differently after
seeing the HERO results

Objective
Of the 18 Canadian adults with haemophilia who responded about their sex life,
9 (50%) reported that haemophilia had affected the quality of their sex life.
HERO results: employment
France
China
Canada
Argentina
Kiddies Health Care Inc.
Toronto, ON, Canada
Figure 2 Top 3 psychosocial issues independently identified by Canadian social workers and haemophilia nurses were
sex life, employment, and pain
Figure 1 HERO participants
Algeria
1. A. M. Stain


Add more items to a clinic checklist, such as asking patients with haemophilia if
they see a family physician and the last time they saw the physician or nurse.
Take a closer look at obesity in patients with haemophilia and assess whether a
dietician is needed.
– In addition, explore the possibility of creating a patient discussion group to
discuss healthy eating practices.
Work more closely with the haemophilia social worker.
Work collaboratively with the Canadian Hemophilia Society to develop topics of
interest for patients and families.
Conclusions

HERO provided key insights into psychosocial issues facing
Canadian adults with haemophilia and Canadian parents of children
with haemophilia.

At independent advisory board meetings, both social workers and
nurses identified the same key psychosocial issues impacting
patients and parents.

Nurses and social workers provided strategies that could help
improve the lives of both patients and parents.

Nurses and social workers may approach challenges differently. But
when they work to their strengths, they better understand the key
issues and work together as a team to provide comprehensive care
to patients and their caregivers.