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Bibliography for Social Workers

 

SOCIAL WORK BIBLIOGRAPHY –

In this section, you will find psychosocial and educational topics, including: Adoption, aging, alternative therapies, health reform, insurance and school issues.  Article topics are arranged alphabetically with hyperlinks.

 

ADOPTION

 

ADVOCACY

 

AGING AND BLEEDING DISORDERS

  • "Actively Aging" Beamer - 2014-04-15 15:43 Hemaware

https://hemaware.org/story/actively-aging     

  • "Managing Disease While Aging with Hemophilia" By Sarah Aldridge | 02.17.2010

            https://hemaware.org/story/getting-older-hemophilia"

https://hemaware.org/story/planning-your-future

Alternative Therapies and Supplements

Carriers

 

Child Issues, Abuse and Neglect

 

 

              http://pediatrics.aappublications.org/content/131/4/e1314

 

 

CHILD ISSUES, BULLYING

  • Are Adolescents with Chronic Conditions Particularly at Risk for Bullying?” Arch Dis Child (2014). P. 95, 711-716. (Pittet, I., Berchtold, A., Akre, C., Michaud, P.A., & Suris, J.C.)
  • “Peer Victimization Among School-aged Children With Chronic Conditions”  Epidemiologic Reviews (2012) P. 34, 120-128 (Sentenac, M., Arnaud, C., Gavin, A., Molcho, M., Gabhainn, S.N., & Godeau, E)

 

CHILD ISSUES AND DEVELOPMENT

 

CHILD ISSUES, SAFETY

 

COMPREHENSIVE CARE/HEMOPHILIA TREATMENT CENTERS (HTC)

 

  • "Ground Breaking Guidelines" Menaka Pai, BSc, MSc, MD, FRCPC | 10.26.2016

              https://hemaware.org/story/groundbreaking-guideline 

DENTAL CARE

 

  • “Finding a Dentist Who Treats People with Bleeding Disorders,” NHF Hemaware.org September 2011

 

EDUCATIONAL/INFORMATIVE

 

  • "HERO Highlights" Global study unearths unmet psychosocial issues-By Nancy Mann Jackson | 01.30.2015 | en español https://hemaware.org/story/hero-highlights
  • ER Know How: Planning and Preparation Take the Sting Out of Emergency Department Visits,” NHF Hemaware July/August 2006 p. 47

 

EMPLOYMENT

 

 

FACTOR

FAMILY

 

 

FAMILY PLANNING

 

 

HEALTH CARE REFORM

 

  • "What The Healthcare Reform Means To Hemophilia Patients" Healthcare reform will occur in stages. By David Linney | 09.23.2010 NHF Hemaware

               https://hemaware.org/story/hemophilia-and-healthcare-reform-what-you-need-know

 

  • Costs and Coverage of New Hepatitis C Drugs; NHF Hemaware Fall 2011 p. 13

 

 

HISTORY of HEMOPHILIA     

 

  • “A Journey of the Heart” Gammage, L and Francis, D (2013)
  •  
  • Past, Present and Future of Hemophilia: a Narrative Review. Franchini M, Mannucci M (2012) Orphanet Journal of Rare Diseases 7: 24. 

 

HIV/AIDS

 

 

           

MEN with HEMOPHILIA

 

  • Social Worker Perceptions and Observations Regarding Men’s Management of Hemophilia and Use of Community-Based SupportOxford Journals: Health & Social Work June 2015 V 40, Issue 3 p. 239-244

 

MENTAL HEALTH

 

  • “Prevalence of Depression in Adults with Haemophlia,” Haemophilia (2012) p.1-7 (Iannone, M., Pennick, L., Tom, A., Cui, H., Gilbert, M., Weihs, K. & Stopeck, A.)
  • Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology 8: 455–480. Compas E, Jaser S, Dunn J, . (2012) 

 

  • HERO international advisory board psychosocial aspects of haemophilia: a systematic review of methodologies and findings. By: CASSIS, F. R. M. Y Publication Date: 2012 Journal: Haemophilia Volume: 18 Issue: 3 Page: e101 ISSN: 1351-8216Resource: Article DOI: 10.1111/j.1365-2516.2011. 02683.x

 

NEWLY DIAGNOSED

  • Complications of haemophilia in babies (first two years of life): a report from the Centers for Disease Control and Prevention Universal Data Collection System: R. Kulkarni, R. J. Presley, J. M. Lusher, A. D. Shapiro, J. C. Gill, M. Manco-Johnson, M. A. Koerper, T. C. Abshire, D. DiMichele,W. K. Hoots, P. Mathew, D. J. Nugent, S. Geraghty, B. L. Evatt, J. M. Soucie Haemophilia; Volumn 23 Issue 2 March 2017 Pages 207-214.

           

ON-LINE/SOCIAL MEDIA

  • The Quality and Accuracy of Hemophilia Information on the Internet.                                                         Vicky R Breakey, Danial M Ignas, Avram E Denburg and Victor S. Blanchette; Blood 2009 114:244;

OUTREACH

  • An approach to outreach patients with von Willebrand disease in Egypt by targeting women with heavy menstrual bleeding and/or bleeding symptoms: N. Sherif,,H. Goubran,,A. Hassan,T. Burnouf, M. El-Ekiaby; Haemophilia;Volumn 20, Issue 2, March 2014 , Pages 238- 248
  • von Willebrand disease Outreach into Integrated Care Education (VOICE): a call to action:    M. Wang, B. A. Konkle, R. F. Sidonio Jr,V. Flood,C. Koenig,R. Kulkarni. May 26 2017.

 

Pain and PAIN MANAGEMENT

  • “Assessment of Acute and Persistent Pain management in Patients with Haemophilia,” Haemophilia (2011), p. 17, 612-620.
  • The Pain Management Book for People with Haemophilia and Related Bleeding Disorders,” Treatment of Hemophilia – WFH April 2000
  • Pain management strategies: Dealing with joint bleeds and chronic pain. Hemaware Bruce Goldfarb 12.11.2009  https://hemaware.org/story/pain-management-strategies

 

PARENTS

PSYCHOSOCIAL ISSUES

 

 

 

 

  • Challenges in transition to adulthood for young adult patients with hemophilia: Quantifying the psychosocial issues and developing solutions. Witkop, M., Guelcher, C., Forsyth, A., Quon, D., Hawk, S., Curtis, R., Cutter, S., Molter, D., and Cooper, D.L. (2015).  American Journal of Hematology,90(S2).Doi:10.1002/.24217http://onlinelibrary.wiley.com/doi/10.1002/ajh.24217/pdf
  • Physical and psychosocial challenges in adult hemophilia patients with inhibitors. duTreil, S. (2014).  Journal of Blood Medicine, 5: 115-122.  http://doi.org/10.2147/JBM.S63265

 

  • Hemophilia care in the pediatric age Bertamino, M., Riccardi, F., Banov, L., Svahn, J., and Molinari, A.C. (2017). Journal of Clinical Medicine, 6,54; doi:10.3390/jcm605005 http://www.mdpi.com/2077-0383/6/5/54/htm

 

  • Cognitive and psychological profiles in treatment compliance: A study in an elderly population with hemophilia. Riva, S., Nobili, A., Djade, C.D., Mancuso, M.E., Santagostino, E., and Pravettoni, G. (2015). Clinical Interventions in Aging, 10 1141-1146. Doi.org/10.2147/CIA.S54749 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4501679/  

 

 

 

 

 

QUALITY OF LIFE

 

 

  • Health-related quality of life in children and adolescents with hereditary bleeding disorders and in children and adlescents with stroke: Cross-sectional comparison to siblings and peers. Neuner, B., von Mackensen, S., Holzhauer, S., Funk, S., Klamroth, R., Kurnik, K., Krumpel, A., Halimeh, S., Reinke, S., Fruhwald, M., and Nowak-Gottl, U. ( 2016). Biomed Research International,2016,1579428 10.1155/2016/1579428https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4884589/

 

 

 

 

  • Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18-30 years) with hemophilia. Witkop, M., Guelcher, C., Forsyth, A., Hawk, S., Curtis, R., Kelley, L., Frick, N., Rice, M., Rosu, G., and Cooper, D.L. (2015). American Journal of Hematology, 90:S3-S10. http://onlinelibrary.wiley.com/doi/10.1002/ajh.24220/epdf

 

 

 

 

 

 

 

 

 

  • Perceptions about quality of life in a school-based population of adolescents with menorrhagia: Implications for adolescents with bleeding disorders. Pawar, A., Krishnan, R., Davis, K., Bosma, K., and Kulkarni, R. (2008).  Haemophilia, 14, 579-583. Doi:10.1111/j.1365-2516.2008.01652.x

 

 

 

  • Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study. Palareti, L., Potì, S., Cassis, F., Emiliani, F., Matino, D., & Iorio, A. (2015). International Journal of Qualitative Studies on Health and Well-Being10, 10.3402/qhw.v10.28915. http://doi.org/10.3402/qhw.v10.28915 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649019/

 

  • Predictors of quality of life among adolescents and young adults with a bleeding disorder. McLaughlin, J.M., Munn, J.E., Anderson, T.L., Lambing, A., Tortella, B., and Witkop, M.L. (2017). Health and Quality of Life Outcomes, 15:67. DOI 10.1186/s12955-017-0643-7

 

  • Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experienes, Results, and Opportunities into Solutions (B-HERO-S) study. Buckner, T.W., Witkop, M., Guelcher, C., Frey, M.J., Hunter, S., Peltier, S., Recht, M., Walsh, C., Kessler, C.M., Owens, W., Clark, D.B., Frick, N., Rice, M., Iyer, N.N., Holot, N., Cooper, D.L., and Sidonio Jr, R. (2017). European Journal of Haematology, 98:5-17. Doi.org/10.1111.ejh.12854  http://onlinelibrary.wiley.com/doi/10.1111/ejh.12854/full

 

  • Impact of pain and functional impairment in US adult people with hemophilia (PWH): Patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment, and quality of life (P-FiQ) study. Kempton, C.L., Recht, M., Neff, A., Wang, M., Buckner, T.W., Soni, A., Quon, D., Witkop, M., Boggio, L., and Cooper, D.L. ( 2015). Blood, 126:39 http://www.bloodjournal.org/content/126/23/39

 

  • Self-reported prevalence, descripton and management of pain in adults with haemophilia:Methods, demographics and results from the Pain, Functional Impariment, and Quality of life (P-FiQ) study. Witkop, M., Neff, A., Buckner, T.W., Wang, M., Batt, K., Kessler, C.M., Quon, D., Boggio, L., Recht, M., Baumann, K., Gut, R.Z., Cooper, D.L., and Kempton, C.L. (2017).Haemophilia, 1-10. Doi:10.1111/hae.13214http://onlinelibrary.wiley.com/doi/10.1111/hae.13214/full

 

 

  • Gene therapy for hemophilia. Nienhuis, A.W., Nathwani, A.C., and Davidoff, A.M. (2016). Human Gene Therapy, 27:4, 305-308. Doi: 10.1089/hum.2016.018

             http://online.liebertpub.com/doi/pdf/10.1089/hum.2016.018

 

SCHOOL ISSUES

 

  • High School Competition Rates Among Men With Hemophilia,” American Journal of Preventive Medicine (2010), p. 38(4); Supplemental 489-494 (Drake, J., Soucie, M., Cutter, S., Forsberg, A.)https://www.ncbi.nlm.nih.gov/pubmed/20331948

 

 

 

 

 

 

 

 

SOCIAL WORK

 

 

 

 

 

 

 

 

 

 

 

 

 

: de Wee EM, Fijnvandraat K, de Goede-Bolder A, Mauser-Bunschoten EP, Eikenboom JCJ, Brons PP, Smiers FJ, Tamminga R,de Wee EM, Fijnvandraat K, de Goede-Bolder A, Mauser-Bunschoten EP, Eikenboom JCJ, Brons PP, Smiers FJ, Tamminga R,

 

  • Impact of von Willebrand disease on health-related quality of life in a pediatric population. de Wee EM, Fijnvandraat K, de Goede-Bolder A, Mauser-Bunschoten EP, Eikenboom JCJ, Brons PP, Smiers FJ, Tamminga R, Oostenbrink R, Raat H, van der Bom JG, Leebeek FWG, for the WiN study group J Thromb Haemost 2011; 9: 502–9.http://onlinelibrary.wiley.com/doi/10.1111/j.1538-7836.2010.04175.x/epdf

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

SUMMER CAMPS

 

 

Trials

 

 

  • BE EMPOWERED, a specialty pharmacy education program for hemophilia B patients, impacts adult joint bleeds and pediatric use of RICE. Blankenship, C.S., Tortella, B.J., and Bruno, M. (2014). Journal of Managed Care Pharmacy, 20(2):151-158. http://www.jmcp.org/doi/10.18553/jmcp.2014.20.2.151

 

 

 

 

                                            

  • Hemophilia management via data collection and reporting: Initial findings from the comprehensive care sustainability collaborative. Tarantino, M.D., and Pindolia, V.K. (2017).  Journal of Managed Care & Specialty Pharmacy, 23(1): 51-56. http://www.jmcp.org/doi/10.18553/jmcp.2017.23.1.51

 

 

Social Security/Disability

 

  • Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY). Riva, S., Bullinger, M., Amann, E., and von Mackensen, S. (2010).  Health and Quality of Life Outcomes, 8:139.  https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-8-139

 

SPORTS

 

 

  • A Survey of Team Physicians on the Participation Status of Hemophilic Athletes in National Collegiate Athletic Association Division I Athletics. Fiala, K. A., Hoffmann, S. J., & Ritenour, D. M. (2003). Journal of Athletic Training38(3), 245–251.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC233179/

 

 

SURVEILLANCE

 

 

 

THROMBOSIS/THROMBOPHILIA         

 

  • Thrombophilia: clinical–practical aspects,” Journal of Thrombosis and Thrombolysis, April 2015, Volume 39, Issue 3, pp 367–378
  • “Guidance for the evaluation and treatment of hereditary and acquired thrombophilia,” Journal of Thrombosis and Thrombolysis, January 2016, Volume 41, Issue 1, pp 154–164
  • Thrombophilia in Pregnancy Treatment & Management,” International Journal of . Molecular Science. 2015, Volume 16, issue 12, pp 28418-28428

 

TRAVEL/VACATION

 

 

UNIVERSAL DATA COLLECTION

 

               

VENOUS ACCESS DEVICES

 

  • Easier Access: The Pros and Cons of Infusion Devices,” NHF Hemaware March/April 2009 p. 56      

 

VON WILLEBRAND DISEASE

 

  • Von Willebrand Disease: diagnosis and management, “Pediatrics and Child Health,:  August 2015, Volume 25, Issue 8, pp354–359

 

  • Von Willebrand Disease: An Overview. Bharati, K. P., & Prashanth, U. R. (2011).  Indian Journal of Pharmaceutical Sciences, 73(1), 7–16.

 

 

WOMEN & GIRLS WITH BLEEDING DISORDERS

 

  • “Females With Severe or Moderate Hemophilia A or B: A U.S. study,” Blood (2007) p. 110(11); 2146 (DiMichele, D.M., Gibb, C.B., Lefkowitz, J.M., Ni, Q., Louides, P.A., Gerber, L.M., & Ganguly) (“Severe and Moderate Hemophilia A and B in U.S. Females,” Haemophilia (2014), p. 20(2); e136-e143 (DiMichele, D.M., Gibb, C.B., Lefkowitz, J.M., Ni, Q., Louides, P.A., Gerber, L.M., & Ganguly)
  • “Are Women Affected by Bleeding Disorders?” Hemophilia Federation of America,http://www.hemophiliafed.org/bleeding-disorders/can-women-have-bleeding-disorders/
  • “Issues for girls and women with VWD,” World Hemophilia Federation, 2012. World Hemophilia Federation  https://www.wfh.org/en/page.aspx?pid=675
  • The impact of menstrual disorders on quality of life in women with inherited bleeding disorders. Kadir RA, Edlund M, von Mackensen S    Haemophilia 2010; 16: 832–839.
  • Reproductive health in women with bleeding disorders. Kadir RA, James AH World Federation of Hemophilia (WHF), 2009 http://www1.wfh.org/publication/files/pdf-1206.pdf

 

YOUTH/TEEN ISSUES

 

 

 

 

 

 

 

 

 

 

 

 

Instructions: Please add international/national org as a new heading to resource section of the SW web site.  

RESOURCES

 

International and National Hemophilia Organizations

 

National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. The organization also includes: Medical and Scientific Advisory Council (MASAC) which was created in 1954 to issue recommendations and advisories on treatment and research, HANDI- Which has been NHF’s full-fledged resource center on hemophilia and other bleeding disorders.

For over 50 years, the World Federation of Hemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

Hemophilia Alliance is a non- profit organization that works to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders.

Hemophilia Federation of America, Inc. (HFA) is a patient education, services and advocacy organization serving the rare bleeding disorders community. HFA is exclusively focused on the bleeding disorders patient and caregiver community.

  • Partners in Bleeding Disorders education- http://partnersprn.org/  The Partners in Bleeding Disorders Education Program promotes excellence in care through education created by and for the federally recognized Hemophilia Treatment Center (HTC) Network and providers from a variety of disciplines that serve patients with bleeding and other coagulation disorders. Programs include Basic Partners, Advanced Partners, Presentation Skills Workshop, and Partners PRN online learning activities.
  • The National Blood Clot Alliance: http://www.stoptheclot.org

Patient education, services and advocacy organization serving the clotting disorders community.

  • Foundation for Women and Girls With Blood Disorders: http://www.fwgbd.org  The Foundation for Women & Girls with Blood Disorders seeks to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage. 
  • Parents Empowering Parents (PEP) http://pepprogram.org  is a program designed to promote effective parenting skills to parents of children with hemophilia, and to educate and support parents through classroom discussions and exercises.  PEP.Suzanne@gmail.com or 248-952-4PEP
  • PEN Parent Exchange Newsletter-http://www.kelleycom.com/newsletters.html- Lauren Kelley newsletters- The oldest US newsletter on hemophilia,  produced by a parent of a son with hemophilia. Provides medical, scientific, consumer, parenting articles and news.