The CHS/Novo Nordisk Psychosocial Research Program

/The CHS/Novo Nordisk Psychosocial Research Program
The CHS/Novo Nordisk Psychosocial Research Program2018-09-05T19:10:45+00:00
 
The Canadian Hemophilia Society – Novo Nordisk Canada Psychosocial Research Program was created to engage professionals/graduate students from the allied health disciplines (ie. Nursing, Physiotherapy & Social Work) in research activities addressed to understanding the psychosocial impact of hemophilia and other inherited bleeding disorders and to improve the quality of life of persons and families whose lives are affected by these disorders.

The Research Grants are made possible thanks to generous financial support from Novo Nordisk Canada. Novo Nordisk develops, manufactures and markets products that make a significant difference to patients, the medical profession and society. Novo Nordisk has a leading position within areas such as coagulation disorders, growth disorders and hormone replacement therapy. In addition, Novo Nordisk is also the world leader in diabetes care. The CHS is proud to be in a partnership with Novo Nordisk in order to offer this important Research Program.

The primary intent of this program is to offer one or two $20,000 research grants, to a maximum of $40,000 for one year.

Depending upon the number and quality of applications, funding for different amounts is possible, as is the offering of more than one research grant, within however, the allotted total budget stated above.

The major portion of each grant would be to cover the research time for the successful candidate(s), including the time for research assistants. A small amount can be devoted to project expenses.

Eligibility:

To be eligible the applicant must be a Social Worker, Nurse, or Physiotherapist with professional experience in a hemophilia treatment centre or other comparable settings in which care has been provided to people with hemophilia and other inherited bleeding disorders or persons interested in the field of inherited bleeding disorders. Professionals who have appointments in universities and who can dedicate time to research are encouraged to apply.  Students must be in a PhD program in one of the allied health disciplines. Professional experience in a hemophilia treatment centre is desirable but not required.

The proposed research must have relevance to current practice in bleeding disorders care and may incorporate a broad spectrum of quantitative and qualitative research methods addressing professional practice with individuals, families, groups and communities, organizational issues, public health, and education.

It is expected that the focus will: (1) promote the integration of psychosocial care with biomedical components of comprehensive care; 2) promote delivery of quality services to patients and families; 3) contributed to the literature on the psychosocial impact of bleeding disorders; (4) demonstrate nursing, physiotherapy or social work outcomes of the research or clinical project.

Interest areas and methodologies might include: impacts of social work/clinical practice on evolving chronic illness and/or disability care modalities; psychosocial  and mental health issues for those affected with bleeding disorders/HIV/HCV; education and vocational issues; increased understanding of issues raised in the HERO (Hemophilia Experiences Results Opportunities) research; media projects and/or learning tools for patient/professional development and evaluation; participatory action, applied and operational research initiatives; interpersonal, gender, sexuality, cultural diversity, workplace, stigma and poverty issues.

Multidisciplinary Collaboration:

Collaboration with multidisciplinary care providers and/or between two or more hemophilia centres is accepted and encouraged. Collaboration efforts may include, for example, nursing, social work, physical therapy and genetics. It thus may be possible for a hemophilia centre team to jointly submit a cooperative research project. Additionally, inter-regional applications will be considered.

Applications and Deadline:

A letter of intent should be submitted to the Canadian Hemophilia Society by November 15, 2018. This should be a letter of a maximum of two pages identifying the applying researcher and organization and providing a summary description of the intended area of research.

Multidisciplinary applications are welcomed.  Please note that if a multidisciplinary project is sought, you are encouraged to indicate in the letter of intent and in the application how the project would proceed if only one fellowship were to be awarded.

The CHS Peer Review Committee will invite a limited number of candidates to submit a more detailed proposal by January 17, 2019 in order to make a final selection. Grants will be offered for a one-year period to begin in April 2019.

Funds available for the Canadian Hemophilia Society – Novo Nordisk Canada Psychosocial Research Program

The Canadian Hemophilia Society – Novo Nordisk Canada Psychosocial Research Program was created to engage professionals/graduate students from the allied health disciplines (ie. Nursing, Physiotherapy & Social Work) in research activities addressed to understanding the psychosocial impact of hemophilia and other inherited bleeding disorders and to improve the quality of life of persons and families whose lives are affected by these disorders.

Eligibility 

A candidate must be a Canadian citizen or permanent resident.

To be eligible the applicant must be a Social Worker, Nurse, or Physiotherapist with professional experience in a hemophilia treatment centre or other comparable settings in which care has been provided to people with hemophilia and other inherited bleeding disorders or persons interested in the field of inherited bleeding disorders. Professionals who have appointments in universities and who can dedicate time to research are encouraged to apply. Students must be in a PhD program in one of the allied health disciplines. Professional experience in a hemophilia treatment centre is desirable but not required.

The proposed research must have relevance to current practice in bleeding disorders care and may incorporate a broad spectrum of quantitative and qualitative research methods addressing professional practice with individuals, families, groups and communities, organizational issues, public health, and education.

It is expected that the focus will: (1) promote the integration of psychosocial care with biomedical components of comprehensive care; 2) promote delivery of quality services to patients and families; 3) contributed to the literature on the psychosocial impact of bleeding disorders; (4) demonstrate nursing, physiotherapy or social work outcomes of the research or clinical project.

Interest areas and methodologies might include: impacts of social work/clinical practice on evolving chronic illness and/or disability care modalities; psychosocial  and mental health issues for those affected with bleeding disorders/HIV/HCV; education and vocational issues; increased understanding of issues raised in the HERO (Hemophilia Experiences Results Opportunities) research; media projects and/or learning tools for patient/professional development and evaluation; participatory action, applied and operational research initiatives; interpersonal, gender, sexuality, cultural diversity, workplace, stigma and poverty issues.

Multidisciplinary Collaboration:

Collaboration with multidisciplinary care providers and/or between two or more hemophilia centres is accepted and encouraged. Collaboration efforts may include, for example, nursing, social work, physical therapy and genetics. It thus may be possible for a hemophilia centre team to jointly submit a cooperative research project. Additionally, inter-regional applications will be considered.

Grantees must devote full or part time to the research program during the tenure of the Grant as per their proposal which the CHS will have accepted.

Stipend / Duration of Support

The primary intent of this program is to offer one or two $20,000 research grants, to a maximum of $40,000 for one year.

Depending upon the number and quality of applications, funding for different amounts is possible, as is the offering of more than one research grant, within however, the allotted total budget stated above.

The Research Grant will normally begin on April 1. Research projects must be initiated by December 31 of the year awarded. Funds are to be used mainly for salary support of the investigators and research assistants and will normally be disbursed in two payments. A small amount can be devoted to project expenses.

Evaluation

All applications are subjected to a rigorous peer review process and will be reviewed by an independent peer review committee composed of Canadian medical and healthcare professionals and a patient representative. Applications are critiqued on scientific merit and relevance to CHS research priorities and scored in terms of significance, approach, innovation, investigator, and environment/support. The committee will rank the applications and will make recommendations to the CHS Board of Directors on funding of the proposals. The final decisions regarding awards will be made by the CHS Board of Directors. No appeals will be considered.

1. General Conditions

1.1 Application Forms

A letter of intent must first be submitted to the Canadian Hemophilia Society before completing an application form. This is the first step of the application process. Only candidates selected by the CHS will be invited to send an application form.

Application forms may be obtained by clicking on the following link: Application form

Applications forms must be completed and submitted electronically to the Canadian Hemophilia Society (chs@hemophilia.ca) and one (1) original paper copy, including signatures, must be sent to the National Office of the Canadian Hemophilia Society:

301-666 Sherbrooke Street West, Montreal, QC H3A 1E7

1.2 Application Deadline

A letter of intent should be submitted to the Canadian Hemophilia Society by November 15, 2018. This should be a brief one to two-page letter identifying the applying researcher and organization and providing a summary description of the intended area of research.

Multidisciplinary applications are welcomed. Please note that if a multidisciplinary project is sought, you are encouraged to indicate in the letter of intent and in the application how the project would proceed if only one project were to be awarded.

The CHS Peer Review Committee will invite a limited number of candidates to submit a more detailed proposal by January 17, 2019 in order to make a final selection. Grants will be offered for a one-year period to begin in April 2019.

If the CHS receives the application after the deadline date but it is postmarked on or before the deadline date, then it is considered to have been submitted on time. The names of the successful applicants will be announced in March, 2019.

First time applicants are encouraged to seek advice from experienced investigators in the preparation of their applications.

Please note that the Research Proposal (Item 13 of the application) must not exceed 2,500 words or 5 pages, excluding figures and references.

Supporting materials should include only previously published articles or materials accepted for publication.

1.3 Grant Year and Amount

Support for the Grant in the maximum amount of $20,000 is normally made for a one-year period starting on April 1. Awards must be initiated by December 31 of the year awarded. The primary intent of this program is to offer one or two $20,000 research grants, to a maximum of $40,000 for one year.

Depending upon the number and quality of applications, funding for different amounts is possible, as is the offering of more than one grant, within however, the allotted total budget stated above.

The major portion of each grant would be to cover the research time for the successful candidate(s) and research assistants. A small amount can be devoted to project expenses.

1.4 Payments 

Award payments are normally made twice a year to the financial officer of the host institution.

1.5 Research Summaries

The Canadian Hemophilia Society (CHS) requires, within the application form, a 200-word typewritten lay description of the research to be undertaken (in non-scientific, Grade 12 readability) for inclusion in the Society’s publications should the proposal be accepted.

1.6 Notification of Grants

Following funding decisions, successful applicants will be sent official notification informing them of the type, duration and amount of their grant. A copy of the notification is sent to the accountant at the institution concerned. The award must be acknowledged by returning an acceptance note within 15 days of the CHS notification otherwise the award will be withdrawn. Unsuccessful applicants are also advised at the conclusion of the project application review process.

1.7 Appeals

The Research Peer Review Committee of the Canadian Hemophilia Society will make recommendations on the awarding of the grants and the final decision will be made by the CHS Board of Directors. No appeals will be considered.

2. Additional Grant Conditions and Grantee Obligations

2.1 Statement of Expenditures

A statement of all expenditures for the grant, signed by the candidate and the financial officer of each institution, must be received at the CHS’s offices within 2 months of the end date of the grant term. An institution finance/expenditure report is acceptable to avoid duplication of effort by the researcher. Failure to fulfill this requirement may lead to exclusion from future research grant competitions. If delay is anticipated, the CHS must be informed.

2.2 Use of the Grants

The Grant is to be used mainly to support the salary of the grantee, research assistant and project expenses.

Grantees must devote full time or part time to the research during the tenure of the Grant as per their proposal which has been accepted by the CHS.

Please note that awardees must notify the Canadian Hemophilia Society immediately if there is any change to the research or its term.

The use of funds for purposes other than stated in the application must be approved in advance by the CHS.

2.3 Unexpended Balances

The Canadian Hemophilia Society does not permit carrying forward into the next grant year an unexpected balance in excess of $5,000. Prior written request to the CHS is required to carry forward a balance that exceeds $5,000.

2.4 Termination of the Grant

Upon termination of the Grant, any unexpended balance of funds must be returned to the CHS.

2.5 Travel Expenses

A grantee may use $1,500 annually from the award for the purpose of travel in connection with the grant and, if needed, an additional amount representing one percent (1%) of the annual value of the award.

2.6 Title to Equipment

Title to any equipment obtained with the Canadian Hemophilia Society’s funds shall be held by the host institution on the condition that for a 12 month period following termination of grant, the CHS may transfer title to another institution. Prior written authorization for the transfer of funds or equipment by a grantee to another institution must be obtained from the CHS.

2.7 Interim, Final Report & Abstract Requirements

Research grant recipients are required to provide a project progress report; this report summarizing the progress to date will serve as the basis for project continuance and will also provide supporting rationale, if required, for approval of project modifications, and/or extension requests.

Within 2 months of the end of the funding period, the Canadian Hemophilia Society requires a final report on activities undertaken during the tenure of the Grant and on the results of the project. The CHS also requires that the researcher provide an approximately 250-word lay abstract (Grade 12 readability) describing his or her activities and the results of the project for inclusion in the Society’s publications and for presentation at the CHS medical and scientific symposia.

Failure to fulfill these requirements can lead to exclusion from future fellowship/research grant competitions. If delay is anticipated, the CHS must be informed.

2.8 Acknowledgement of Support

The Canadian Hemophilia Society MUST be informed of any publications that are based on research funded by the Canadian Hemophilia Society and all such publications, scientific communications and media releases related to the award MUST acknowledge the support of the Canadian Hemophilia Society and Novo Nordisk Canada. Researchers are encouraged to present study results, when possible, even if preliminary, at hemophilia conferences (e.g., World Federation of Hemophilia Congress, Rendez-Vous, etc.).

2.9 Proprietary Rights

The CHS must be informed of any commercial exploitation arising from the CHS-supported activity. However, the CHS does not claim proprietary rights to inventions resulting from research supported by its funds. The onus is on the grantee to seek patent protection in collaboration with the university or institute for inventions or developments arising from the CHS-supported research.

2.10 Indirect / Overhead Costs

Grant funds must contribute towards the direct costs of the research program or project for which the funds were awarded. The Institution provides for indirect or overhead costs, such as the costs associated with facilities and basic utilities, the purchase and repair of office equipment, administration fees, insurance for equipment and research vehicles, and basic communication devices such as telephones and fax machines. The funds must be used effectively and economically, and the expenses must be essential for the research supported by the grant.

Health Charities Coalition of Canada Position Statement on Indirect Costs of Research (May 14, 2007):

It is the policy of the Health Charities Coalition of Canada (HCCC) that health charities should not fund the indirect costs associated with the research they fund. All HCCC members have agreed not to fund indirect costs. While the HCCC recognizes that these may indeed be legitimate expenditures, we believe the funding of such costs is the responsibility of governments and not donors.

While the CHS is not a member of HCCC, it nonetheless supports the position that indirect costs associated with research it funds and fellows it supports are the responsibility of governments and/or research institutions and not its donors.

3. Ethical Considerations

3.1 Adherence to Research Guidelines
An application to the Canadian Hemophilia Society for research support constitutes a pledge on the part of the applicants and their research institutions to respect all the guidelines of the Canadian Hemophilia Society, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December 2010 (TCPS2), the Canadian Institutes of Health Research (CIHR), Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada and the Canadian Council on Animal Care. In the event that these guidelines are not adhered to, the CHS will withhold funding.

Completed forms required for research involving human subjects, gene therapy in humans, animals and biohazards must be received by the CHS as soon as possible; funding of successful applications for research will be withheld by the CHS until full Research Ethics Board approval is provided in writing to the CHS. CHS review of the applications, by its Peer Review Committee, can proceed prior to Research Ethics Board (REB) approval.

3.2 Research Involving Human Subjects 
Each project in a research proposal involving human subjects and gene therapy in humans must submit the complete designated form, authorized by the local institutional Research Ethics Board in accordance with the TCPS2 document of the Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada,and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December 2010. The Tri-Council Policy Statement is available from the following website: www.pre.ethics.gc.ca/pdf/eng/tcps2/TCPS_2_FINAL_Web.pdf

The responsibility for filing a Clinical Trial Application ( CTA) with Health Canada for a human drug clinical trial rests with the Principal Investigator. Guidance on whether a CTA is required is found at:

www.hc-sc.gc.ca/dhp-mps/prodpharma/applic-demande/guide-ld/clini/cta-eng.php See: Overview of the Clinical Trial Application Process and Institution/Investigator Initiated Clinical Trials.

In addition, all continuing grantees involved in human subjects must submit the complete designated form on an annual basis. Receipt of this form is required for continuation of payment by the CHS of any funds committed for the following year.

3.3 Research on Somatic Cell Gene Therapy in Humans 
The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December 2010 must be adhered to. Any research related to this area must be reviewed by the local institutional Research Ethics Board.

3.4 Care and Use of Experimental Animals 

The CHS requires that all experiments involving animals be conducted in an ethical way. The facilities for, and the care and use of animals, in any investigation the CHS supports must be in strict accordance with the guidelines set out by the Canadian Council on Animal Care (CCAC) in its publication, Guide to the Care and Use of Experimental Animals (Vol. 1, 1980 and revised in 1993; Vol. 2, 1984), available from:

The Canadian Council on Animal Care
1000 – 151 Slater St.
Ottawa, Ontario Canada K1P 5H3

Each proposal involving animals must have one copy of the designated form, completed and authorized by a local institutional Animal Care Committee, confirming its ethical acceptability (the composition of the committee is set forth in the CCAC Guide). In addition, all continuing grantees involved in research using animals must submit one complete form on an annual basis. Receipt of this form is required for continuation of payment by the CHS of any funds committed for the following year.

3.5 Research Involving Biohazards 

Investigators proposing to engage in research involving animal and human pathogens and animal cells are required to comply with the Government of Canada’s Canadian Biosafety Standard (CBS), 2nd Edition, 2015 developed jointly by the Public Health Agency of Canada (PHAC) and the Canadian Food Inspection Agency (CFIA). This standard is used by laboratory researchers and workers in facilities possessing, handling, storing or using human and terrestrial animal pathogens and toxins.

Each proposal involving research proposals covering the areas noted above must have one completed form, authorized by a local institutional committee, confirming that the level of containment implemented by the investigator meets the Canadian Biosafety Standard (CBS) requirements.

In addition, all continuing grantees participating in research involving biohazards must submit a completed form on an annual basis. Receipt of this form is required for continuation of payment by CHS of any funds committed for the following year.

Disposal of Hazardous and Radio Active Materials

3.6 Research Involving Hazardous Compounds 
Researchers are responsible for ensuring that their research conforms with the provincial statutes regarding disposal of chemical wastes. Researchers are also responsible for ensuring that research assistants and laboratory personnel are aware of any hazards posed by materials required for the research, that these personnel are adequately trained in handling and containment of such compounds, and that protective procedures are enforced, in compliance with the Occupational Health and Safety regulations of the province in which work is carried out.

3.7 Research Involving Radioactive Materials
Applicants who will be carrying out research using radioactive materials must be aware of, and comply with, all Atomic Energy Control Board regulations, recommended procedures, and safety precautions governing the use of such materials in Canada. Further information may be obtained from:

Office of Public Information
Atomic Energy Control Board

P.O. Box 1046, Station ‘B’
270 Albert Street
Ottawa, Ontario Canada K1P 5S9
Tel:  613-995-5894 Fax: 613-995-5086

Please note that a letter of intent must first be submitted to the CHS. A limited number of application will be invited by the CHS to submit a more detailed application form.

Application form for Novo Nordisk – CHS Psychosocial Research Program.

For additional information, contact:
Canadian Hemophilia Society
chs@hemophilia.ca
1-800-668-2686

Pain Assessment and Treatment in Bleeding Disorders: The Need for Social Work Specific Education

Jennifer King  BSW RSW (SK)
Saskatchewan Health Authority – Saskatoon, Saskatchewan
One year funding
Co-investigators:
Dr. Susan Tupper, Saskatchewan Health Authority
Social Workers are trained as generalists with the ability to conduct psychosocial assessments and interviews.  Through this process, consideration is given to family and social supports, housing, occupation, finances, attitudes towards hemophilia and treatment, and other medical health concerns. While discussing these concerns social workers use skills to help reframe a difficult situation, provide communication skills, and assist in helping find resources and bringing about change as desired by the client.

As a result of the HERO Study and other pain related research in hemophilia care, social work is beginning to explore how they assess and manage pain with their clients.  As social workers increase their own knowledge of pain management, there should be positive outcome reports from those who receive this care from their social worker.

This study examines what is needed in social work pain education for Hemophilia Treatment Centers (HTC’s).  By examining the International Association for the Study of Pain (IASP) Curriculum Outline for Pain in Social Work, the working group will gain better understanding of how to become educated and provide best care for clients.

Reliability, validity, and clinical utility of the Pain Treatment Planning Questionnaire for bleeding disorders outpatient clinics

Susan Tupper PT, PhD   & Dr. Kelsey Brose
Royal University Hospital, Saskatoon (SK)

One year funding.

Many people with bleeding disorders rely on health care providers at bleeding disorder programs for advice about pain treatment. Getting the right advice improves treatment outcomes and reduces risks from unnecessary treatments. To provide good advice, health care providers need to communicate with clients about different aspects of pain. We developed the Pain Treatment Planning Questionnaire (PTPQ) to improve communication about pain and pain treatment between clients and clinicians. We will do two studies. The first study will involve 214 people with a bleeding disorder from 6 Canadian clinics. These individuals will answer an online survey about pain and pain treatments at one time-point (30 minute time commitment). With this information we will describe the different types of pain people experience and what treatments they choose. We can compare the PTPQ to other questionnaires to determine how well the new questionnaire performs. The second study will involve health care providers at 6 participating clinics. In discussion groups we will ask their opinions about the PTPQ and how they use it to communicate about pain. This information will lead to understanding about successful ways to use the new tool, and more research to improve pain management for people with bleeding disorders.

Virtual Peer-to-Peer Support Mentoring (VP2P) for youth with hemophilia: A needs assessment

Vanessa N. Bouskill, MN, NP 
Hospital for Sick Children – Toronto
One year funding

Co-investigators:
Dr. Vicky R. Breakey, McMaster Children’s Hospital – Hamilton;
Dr. Sara Ahola Kohut, Hospital for Sick Children – Toronto; and
Dr. Jennifer N. Stinson, Hospital for Sick Children – Toronto

Hemophilia is a rare bleeding disorder that can be complicated to manage. While the child and family share management of hemophilia, teens are expected to take on a greater role in managing their hemophilia as they mature. Yet, most teens with hemophilia do not receive comprehensive education on how to self-manage their hemophilia. Peer mentoring is proposed as one solution to address this gap in clinical care. Peer mentoring can provide meaningful social support and has also been associated with improved health outcomes. An online Skype-based peer mentoring program (Virtual Peer-to-Peer Support Mentoring Program; VP2P) exists for teens with arthritis and chronic pain. However these groups are primarily female therefore making changes to this program necessary for the male teens with hemophilia. The goal of this study is to identify the peer mentoring wants and needs of youth with hemophilia in order to determine necessary changes to the VP2P for youth with hemophilia. Thirty youth diagnosed with hemophilia (n = 20 adolescents; n = 10 young adults) will be interviewed. Audiotaped interviews will be transcribed word for word and analyzed qualitatively. The data will then be used to make necessary changes to the VP2P for teens with hemophilia.

How is quality of life impacted by vocational experiences and opportunities among males (≥16) with moderate and severe hemophilia throughout the lifecycle?

Claude Bartholomew, RSW
St-Paul’s Hospital (Vancouver)
One year funding. Start: April 30, 2014;  to end March 31, 2015.

Co-investigators:
Linda Waterhouse, RSW, Hamilton Health Sciences (Ontario)
Shannon Lane, McMaster University (Ontario)
Neale Smith, Vancouver Coastal Health Authority (BC)
Michelle Sims, RSW, Saskatchewan Bleeding Disorder Program (SK)
Employment is an important contributor to people’s overall health and well-being. But we know that employment is affected by people with hemophilia (PWH). There can be additional factors, beyond the physical effects of the illness itself, which can/has reduced quality of life among PWH. We believe that additional research needs to be completed, in a Canadian context, to understand the experiences and effects of employment throughout the lifecycle among PWH.

Our proposed research will seek to answer this question: How is quality of life among males (16 years) with moderate or severe hemophilia affected by work and vocational experiences over the course of their lives?

The research will be conducted in British Columbia, Manitoba, Ontario, and Saskatchewan. We will use qualitative and quantitative methods. An initial focus group with PWH will help to develop a survey questionnaire that asks about vocational issues of prime interest to PWH at all ages: young adulthood, mid-adulthood/career, and late career/retirement. The questionnaire will be given to patients of hemophilia clinics in each province (estimated total response=180). Finally, focus groups at each site will be held with some survey respondents to further reflect on and better understand the survey findings.

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