Acceso abierto

You think you know the patient inside-out. But do you know the outside-in?


Cite

Thirsk LM, Clark AM. What is the ‘self’ in chronic disease self-management? Int Journal Nurse Studies 2014; 51(5): 691–3.ThirskLMClarkAMWhat is the ‘self’ in chronic disease self-management?Int Journal Nurse Studies2014515691310.1016/j.ijnurstu.2013.10.00824216597Search in Google Scholar

Kendall P. Investing in prevention: improving health and creating sustainability. The Provincial Health Officer's special report. British Columbia: Office of the Provincial Health Officer, 2010. Available from https://www.health.gov.bc.ca/library/publications/year/2010/Investing_in_prevention_improving_health_and_creating_sustainability.pdf (accessed 16 November 2018).KendallPInvesting in prevention: improving health and creating sustainability. The Provincial Health Officer's special reportBritish Columbia: Office of the Provincial Health Officer2010Available fromhttps://www.health.gov.bc.ca/library/publications/year/2010/Investing_in_prevention_improving_health_and_creating_sustainability.pdfaccessed 16 November 2018Search in Google Scholar

Bury M. The sociology of chronic illness: a review of research and prospects. Sociol Health Illn 1991; 13(4): 451–68.BuryMThe sociology of chronic illness: a review of research and prospectsSociol Health Illn19911344516810.1111/j.1467-9566.1991.tb00522.xSearch in Google Scholar

Bury M. Chronic illness as biographical disruption. Sociol Health Illn 1982; 4(2): 167–82.BuryMChronic illness as biographical disruptionSociol Health Illn1982421678210.2307/j.ctt1t895q0.11Search in Google Scholar

UKHCDO. UK bleeding disorder statistics for April 2016 to March 2017. A report from the UK National Haemophilia Database. 2017. Available from http://www.ukhcdo.org/wp-content/uploads/2018/02/Bleeding-Disorder-Statistics-for-April-2016-to-March-2017-for-UKHCDO.pdf (accessed 16 November 2018).UKHCDOUK bleeding disorder statistics for April 2016 to March 2017. A report from the UK National Haemophilia Database2017Available fromhttp://www.ukhcdo.org/wp-content/uploads/2018/02/Bleeding-Disorder-Statistics-for-April-2016-to-March-2017-for-UKHCDO.pdfaccessed 16 November 2018Search in Google Scholar

Sager R. Women with haemophilia: more than just carriers. J Haem Pract 2014; 1(2): 2–7. doi: 10.17225/jhp.00016.SagerRWomen with haemophilia: more than just carriersJ Haem Pract2014122710.17225/jhp.00016Open DOISearch in Google Scholar

Khair K, Meerabeau L, Gibson F. Self-management and skills acquisition in boys with haemophilia. Health Expect 2015; 18(5): 1105–13.KhairKMeerabeauLGibsonFSelf-management and skills acquisition in boys with haemophiliaHealth Expect201518511051310.1111/hex.12083506084923711015Search in Google Scholar

Schrijvers LH, Schuurmans MJ, Fischer K. Promoting self-management and adherence during prophylaxis: evidence-based recommendations for haemophilia professionals. Haemophilia 2016; 22(4): 499–506.SchrijversLHSchuurmansMJFischerKPromoting self-management and adherence during prophylaxis: evidence-based recommendations for haemophilia professionalsHaemophilia201622449950610.1111/hae.1290427075653Search in Google Scholar

Marshall B. Fashion statement: hemophilia-inspired clothing line garners national attention. HemAware 17 November 2014. Available from https://hemaware.org/community-pulse/fashion-statement (accessed 16 November 2018).MarshallBFashion statement: hemophilia-inspired clothing line garners national attentionHemAware 17 November2014Available fromhttps://hemaware.org/community-pulse/fashion-statementaccessed 16 November 2018Search in Google Scholar

Henriques C. Chris Bombardier becomes first hemophiliac to climb 7 continents’ high peaks. Hemophilia News Today 7 February 2018. Available from https://hemophilianewstoday.com/2018/02/07/hemophiliac-chris-bombardier-becomes-first-ever-to-climb-seven-summits/ (accessed 16 November 2018).HenriquesCChris Bombardier becomes first hemophiliac to climb 7 continents’ high peaksHemophilia News Today 7 February2018Available fromhttps://hemophilianewstoday.com/2018/02/07/hemophiliac-chris-bombardier-becomes-first-ever-to-climb-seven-summits/accessed 16 November 2018Search in Google Scholar

Goldstein G, Kenet G. The impact of chronic disease on the family. Haemophilia 2002; 8(3): 461–5.GoldsteinGKenetGThe impact of chronic disease on the familyHaemophilia200283461510.1046/j.1365-2516.2002.00642.x12010452Search in Google Scholar

Beeton K, Neal D, Watson T, Lee CA. Parents of children with haemophilia – a transforming experience. Haemophilia 2007; 13(5): 570–9.BeetonKNealDWatsonTLeeCAParents of children with haemophilia – a transforming experienceHaemophilia2007135570910.1111/j.1365-2516.2007.01494.x17880446Search in Google Scholar

Gilbert L, Paroskie A, Gailani D, Debaun MR, Sidonio RF. Haemophilia A carriers experience reduced health-related quality of life. Haemophilia 2015; 21(6): 761–5.GilbertLParoskieAGailaniDDebaunMRSidonioRFHaemophilia A carriers experience reduced health-related quality of lifeHaemophilia2015216761510.1111/hae.12690461913725930174Search in Google Scholar

Doltani D, Imran A, Saunders J, Harmon D. Who accompanies patients to the chronic pain clinic? Ir J Med Sci 2017;186(1): 235–8.DoltaniDImranASaundersJHarmonDWho accompanies patients to the chronic pain clinic?Ir J Med Sci20171861235810.1007/s11845-016-1494-727566184Search in Google Scholar

Khair K, Holland M, Pollard D. The experience of girls and young women with inherited bleeding disorders. Haemophilia 2013; 19(5): e276-81.KhairKHollandMPollardDThe experience of girls and young women with inherited bleeding disordersHaemophilia2013195e2768110.1111/hae.1215523607927Search in Google Scholar

von der Lippe C, Frich JC, Harris A, Solbraekke KN. "It was a lot tougher than I thought It would be". A qualitative study on the changing nature of being a hemophilia carrier. J Genet Couns 2017; 26(6): 1324–32.von der LippeCFrichJCHarrisASolbraekkeKN"It was a lot tougher than I thought It would be". A qualitative study on the changing nature of being a hemophilia carrierJ Genet Couns201726613243210.1007/s10897-017-0112-928547664Search in Google Scholar

Roberts JC, Lattimore S, Recht M, et al. Goal attainment scaling for haemophilia (GAS-Hēm): testing the feasibility of a new patient-centric outcome measure in people with haemophilia Haemophilia 2018; 24(4): e199–e206.RobertsJCLattimoreSRechtMet alGoal attainment scaling for haemophilia (GAS-Hēm): testing the feasibility of a new patient-centric outcome measure in people with haemophiliaHaemophilia2018244e199e20610.1111/hae.1345429626387Search in Google Scholar

Gue D, Squire S, McIntosh K, et al. Joining the patient on the path to customized prophylaxis: one hemophilia team explores the tools of engagement. J Multidiscip Healthc 2015; 7(8) :527–34.GueDSquireSMcIntoshKet alJoining the patient on the path to customized prophylaxis: one hemophilia team explores the tools of engagementJ Multidiscip Healthc2015785273410.2147/JMDH.S93579467661626675989Search in Google Scholar

Alavian S, Hutchinson W, Morris A, Williams H, Pollard D. Nurse-led telephone review service for mild inherited bleeding disorders improves attendance rates, frees hospital resources and is highly rated by patients. J Haem Pract 2018; 5(1): 66–75. doi: 10.17225/jhp00113.AlavianSHutchinsonWMorrisAWilliamsHPollardDNurse-led telephone review service for mild inherited bleeding disorders improves attendance rates, frees hospital resources and is highly rated by patientsJ Haem Pract201851667510.17225/jhp00113Open DOISearch in Google Scholar

Cassis FR, Buzzi A, Forsyth A, et al. Haemophilia Experiences, Results and Opportunities (HERO) Study: influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia. Haemophilia 2014;20(4): e287–95.CassisFRBuzziAForsythAet alHaemophilia Experiences, Results and Opportunities (HERO) Study: influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophiliaHaemophilia2014204e2879510.1111/hae.1245424800872Search in Google Scholar

Khair K, Gibson F, Meerabeau L. ‘I can always rely on them’: the importance of social support for boys with haemophilia. J Haem Pract 2014; 1(1): 10–16.KhairKGibsonFMeerabeauL.‘I can always rely on them’: the importance of social support for boys with haemophiliaJ Haem Pract201411101610.17225/jhp.00005Search in Google Scholar

Torres-Ortuño A, Cid-Sabatel R, Barebero J, Garcia-Dasi M. Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support. Vox Sang 2017; 112(4): 301–9.Torres-OrtuñoACid-SabatelRBareberoJGarcia-DasiMLife experience of the adult and ageing patient with haemophilia. Practical aspects for psychological supportVox Sang20171124301910.1111/vox.1250128299792Search in Google Scholar

eISSN:
2055-3390
Idioma:
Inglés
Calendario de la edición:
Volume Open
Temas de la revista:
Medicine, Basic Medical Science, other, Clinical Medicine, Pharmacy, Pharmacology