Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition

References

• Lum A, Wakefield CE, Donnan B, et al. Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review. Child Care Health Dev. 2017;43(5):645–662. doi:10.1111/cch.12475
   PubMed Web of Science ®Google Scholar
• Tonkin BL, Ogilvie BD, Greenwood SA, Law MC, Anaby DR. The participation of children and youth with disabilities in activities outside of school: a scoping review. Can J Occup Ther. 2014;81(4):226–236. doi:10.1177/0008417414550998
   PubMed Web of Science ®Google Scholar
• Eton D, Ridgeway J, Egginton J, et al. Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Relat Outcome Meas. 2015;6:117. doi:10.2147/prom.s78955
   PubMedGoogle Scholar
• Alsadah A, van Merode T, Alshammari R, Kleijnen J. A systematic literature review looking for the definition of treatment burden. Heliyon. 2020;6(4):e03641. doi:10.1016/j.heliyon.2020.e03641
   PubMed Web of Science ®Google Scholar
• Boyd CM, Wolff JL, Giovannetti E, et al. Healthcare task difficulty among older adults with multimorbidity. Med Care. 2014;52(3):118–125. doi:10.1097/MLR.0b013e3182a977da
   PubMed Web of Science ®Google Scholar
• Demain S, Gonçalves AC, Areia C, et al. Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research. PLoS One. 2015;10(5):e0125457. doi:10.1371/journal.pone.0125457
   PubMed Web of Science ®Google Scholar
• Taylor RM, Franck LS, Dhawan A, Gibson F. The stories of young people living with a liver transplant. Qual Health Res. 2010;20(8):1076–1090. doi:10.1177/1049732310368405
   PubMed Web of Science ®Google Scholar
• Stasiulis IE, Gladstone B, Boydell IK, et al. Children with facial morphoea managing everyday life: a qualitative study. J Dermatol. 2018;179:245–246. doi:10.1111/bjd.16449
   Web of Science ®Google Scholar
• Lam CG, Cohen KJ, Roter DL. Coping needs in adolescents with cancer: a participatory study. J Adolesc Young Adult Oncol. 2013;2(1). doi:10.1089/jayao.2012.0011
   Web of Science ®Google Scholar
• Nicholas DB, Picone G, Selkirk EK. The lived experiences of children and adolescents with end-stage renal disease. Qual Health Res. 2011;21(2):162–173. doi:10.1177/1049732310382789
   PubMed Web of Science ®Google Scholar
• Cartwright T, Fraser E, Edmunds S, Wilkinson N, Jacobs K, Cartwright T. Journeys of adjustment: the experiences of adolescents living with juvenile idiopathic arthritis. Child Care Health Dev. 2015;41(5):734–743. doi:10.1111/cch.12206
   PubMed Web of Science ®Google Scholar
• De Simoni A, Horne R, Fleming L, Bush A, Griffiths C. What do adolescents with asthma really think about adherence to inhalers? Insights from a qualitative analysis of a UK online forum. BMJ Open. 2017;7:6. doi:10.1136/bmjopen-2016-015245
   Web of Science ®Google Scholar
• Livermore P, Gray S, Mulligan K, Stinson JN, Wedderburn LR, Gibson F. Being on the juvenile dermatomyositis rollercoaster: a qualitative study. Pediatr Rheumatol. 2019;17:30. doi:10.1186/s12969-019-0332-7
   PubMed Web of Science ®Google Scholar
• Ridosh M, Braun P, Roux G, Bellin M, Sawin K, Ridosh M. Transition in young adults with spina bifida: a qualitative study. Child Care Health Dev. 2011;37(6):866–874. doi:10.1111/j.1365-2214.2011.01329.x
   PubMed Web of Science ®Google Scholar
• Sliwinski SK, Gooding H, de Ferranti S, et al. Transitioning from pediatric to adult health care with familial hypercholesterolemia: listening to young adult and parent voices. J Clin Lipidol. 2017;11:147–159. doi:10.1016/j.jacl.2016.11.001
   PubMed Web of Science ®Google Scholar
• Poti S, Emiliani F, Palareti L. Subjective experience of illness among adolescents and young adults with diabetes: a qualitative research study. J Patient Exp. 2018;5(2):140–146. doi:10.1177/2374373517738234
   PubMedGoogle Scholar
• Kirk S. How children and young people construct and negotiate living with medical technology. Soc Sci Med. 2010;71(10):1796–1803. doi:10.1016/j.socscimed.2010.07.044
   PubMed Web of Science ®Google Scholar
• Aoto H, Nakatani H, Kanayama S, Okada SI, Fukada M, Hanaki K. Qualitative analysis of the psychosocial adaptation process in children with chronic kidney disease: toward effective support during transition from childhood to adulthood. Yonago Acta Med. 2018;61(3):166–174. doi:10.33160/yam.2018.09.004
   PubMed Web of Science ®Google Scholar
• Assa A, Ish-Tov A, Rinawi F, Shamir R. School attendance in children with functional abdominal pain and inflammatory bowel diseases. J Pediatr Gastroenterol Nutr. 2015;61(5):553–557. doi:10.1097/MPG.0000000000000850
   PubMed Web of Science ®Google Scholar
• Lazarus RS, Folkman S. Stress, Appraisal and Coping. Springer Publishing Company; 1984.
   Google Scholar
• Ridgeway J, Eton DT, Egginton JS, et al. Factors that lessen the burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Prefer Adherence. 2014;8:339–351. doi:10.2147/PPA.S58014
   PubMed Web of Science ®Google Scholar
• Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012;65(10):1041–1051. doi:10.1016/j.jclinepi.2012.05.005
   PubMed Web of Science ®Google Scholar
• Lemay J, Waheedi M, Al-Sharqawi S, Bayoud T. Medication adherence in chronic illness: do beliefs about medications play a role? Patient Prefer Adherence. 2018;12:1687–1698. doi:10.2147/PPA.S169236
   PubMed Web of Science ®Google Scholar
• Gast A, Mathes T. Medication adherence influencing factors—an (updated) overview of systematic reviews. Syst Rev. 2019;8(1):112. doi:10.1186/s13643-019-1014-8
   PubMed Web of Science ®Google Scholar
• Oddleifson DA, Sawicki GS. Adherence and recursive perception among young adults with cystic fibrosis. Anthropol Med. 2017;24(1):65–80. doi:10.1080/13648470.2017.1278865
   PubMed Web of Science ®Google Scholar
• Powell P, Saggu R, Jones S, et al. Discussing treatment burden. Breathe. 2021;17(1):200284. doi:10.1183/20734735.0284-2020
   Web of Science ®Google Scholar
• Schofield LM, Horobin HE. Growing up with primary ciliary dyskinesia in Bradford, UK: exploring patients experiences as a physiotherapist. Physiother Theory Pract. 2014;30(3):157–164. doi:10.3109/09593985.2013.845863
   PubMed Web of Science ®Google Scholar
• Harrison B. Seeing health and illness worlds - using visual methodologies in a sociology of health and illness: a methodological review. Sociol Health Illn. 2002;24(6):856–872. doi:10.1111/1467-9566.00322
   Web of Science ®Google Scholar
• de Jager A, Tewson A, Ludlow B, Boydell KM. Embodied ways of storying the self: a systematic review of body-mapping. Forum Qual Sozialforschung. 2016;17(2). doi:10.17169/fqs-17.2.2526
   Google Scholar
• Dew A, Smith L, Collings S, Dillon Savage I. Complexity embodied: using body mapping to understand complex support needs. Forum Qual Sozialforschung. 2018;19(2). doi:10.17169/fqs-19.2.2929
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• Green A, Meaux J, Huett A, Ainley K. It has its ups and downs”: adolescents’ quality of life after heart transplantation. Prog Transplant. 2011;21(2):115–120. doi:10.1177/152692481102100205
   PubMed Web of Science ®Google Scholar
• Eton D, Ramalho de Oliveira D, Egginton J, et al. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas. 2012;3:39–49. doi:10.2147/PROM.S34681
   PubMedGoogle Scholar
• Jordan S, Philpin S, Warring J, Cheung WY, Williams J. Percutaneous endoscopic gastrostomies: the burden of treatment from a patient perspective. J Adv Nurs. 2006;56(3):270–281. doi:10.1111/j.1365-2648.2006.04006.x
   PubMed Web of Science ®Google Scholar
• Sav A, Kendall E, Mcmillan SS, et al. “You say treatment, I say hard work”: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21(6):665–674. doi:10.1111/hsc.12052
   PubMed Web of Science ®Google Scholar
• Waldboth V, Patch C, Mahrer-Imhof R, Metcalfe A. Living a normal life in an extraordinary way: a systematic review investigating experiences of families of young people’s transition into adulthood when affected by a genetic and chronic childhood condition. Int J Nurs Stud. 2016;62:44–59. doi:10.1016/j.ijnurstu.2016.07.007
   PubMed Web of Science ®Google Scholar
• Taylor RM, Gibson F, Franck LS. The experience of living with a chronic illness during adolescence: a critical review of the literature. J Clin Nurs. 2008;17(23):3083–3091. doi:10.1111/j.1365-2702.2008.02629.x
   PubMed Web of Science ®Google Scholar
• Maurice-Stam H, Nijhof SL, Monninkhof AS, Heymans HSA, Grootenhuis MA. Review about the impact of growing up with a chronic disease showed delays achieving psychosocial milestones. Acta Paediatr. 2019;108:2157–2169. doi:10.1111/apa.14918
   PubMed Web of Science ®Google Scholar
• Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA. Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health. 2006;39(1):4–13. doi:10.1016/j.jadohealth.2005.03.011
   PubMed Web of Science ®Google Scholar
• Sav A, King MA, Whitty JA, et al. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expect. 2015;18(3):312–324. doi:10.1111/hex.12046
   PubMed Web of Science ®Google Scholar
• Cameron RA, Office D, Matthews J, et al. Treatment preference among people with cystic fibrosis. Chest. 2022;162(6):1241–1254. doi:10.1016/j.chest.2022.07.008
   PubMed Web of Science ®Google Scholar
• Pennant S,C, Lee S, Holm S, et al. The Role of Social Support in Adolescent/Young Adults Coping with Cancer Treatment. Children. 2019;7(1):2. doi:10.3390/children7010002
   PubMedGoogle Scholar
• Serlachius A, Frydenberg E, Northam E, Cameron F. Qualitative study exploring coping strategies in youth with type 1 diabetes. Children Australia. 2011;36(3):144–152. doi:10.1375/jcas.36.3.144
   Google Scholar
• McGrady ME, Hommel KA. Medication adherence and health care utilization in pediatric chronic illness: a systematic review. Pediatrics. 2013;132(4):730–740. doi:10.1542/peds.2013-1451
   PubMed Web of Science ®Google Scholar
• Rapoff MA, Calkins‐Smith A. Enhancing treatment adherence in young people with chronic diseases. In: The Wiley Handbook of Healthcare Treatment Engagement. Wiley; 2020:354–364. doi:10.1002/9781119129530.ch19
   Google Scholar
• Pai A, Ostendorf HM. Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: a literature review. Child Health Care. 2011;40(1):16–33. doi:10.1080/02739615.2011.537934
   Web of Science ®Google Scholar
• Schaefer MR, Kavookjian J. The impact of motivational interviewing on adherence and symptom severity in adolescents and young adults with chronic illness: a systematic review. Patient Educ Couns. 2017;100(12):2190–2199. doi:10.1016/j.pec.2017.05.037
   PubMed Web of Science ®Google Scholar
• Dobler CC, Harb N, Maguire CA, Armour CL, Coleman C, Murad MH. Treatment burden should be included in clinical practice guidelines. BMJ. 2018;363:k4065. doi:10.1136/bmj.k4065
   PubMed Web of Science ®Google Scholar
• Werkgroep psychosociale zorg bij een ingrijpende somatische aandoening. Kwaliteitsstandaard Psychosociale Zorg Bij Somatische Aandoeningen[Working group on psychosocial care in case of a major somatic disorder. Quality Standard Psychosocial Care for Somatic Disorders]; 2019. in Dutch.
   Google Scholar