Disease self-management needs of adolescents with cancer: Perspectives of adolescents with cancer and their parents and healthcare providers

Journal of Cancer Survivorship

Volumn 6, Issue 3, 2012, Pages 278-286

  Stinson, J N ^a,b   Sung, L ^a,b   Gupta, A ^a,b   White, M E ^a   Jibb, L A ^a,b   Dettmer, E ^a   Baker, N ^a  

^a HOSPITAL FOR SICK CHILDREN   (Canada)

^b UNIVERSITY OF TORONTO   (Canada)

Author keywords

Adolescent; Cancer; Neoplasms; Qualitative; Self care; Self management

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CHILD PARENT RELATION; DOCTOR PATIENT RELATION; FEMALE; FOLLOW UP; HEALTH CARE PERSONNEL; HUMAN; MALE; NEEDS ASSESSMENT; NEOPLASM; ORGANIZATION AND MANAGEMENT; PATIENT CARE; PATIENT EDUCATION; PILOT STUDY; PRIMARY HEALTH CARE; QUALITY OF LIFE; SELF CARE; SURVIVOR;

ADOLESCENT; ADULT; CHILD; CONTINUITY OF PATIENT CARE; FEMALE; FOLLOW-UP STUDIES; HEALTH PERSONNEL; HUMANS; MALE; NEEDS ASSESSMENT; NEOPLASMS; PARENTING; PATIENT EDUCATION AS TOPIC; PHYSICIAN-PATIENT RELATIONS; PILOT PROJECTS; PRIMARY HEALTH CARE; QUALITY OF LIFE; SELF CARE; SURVIVORS;

EID: 84865991494     PISSN: 19322259     EISSN: 19322267     Source Type: Journal    
DOI: 10.1007/s11764-012-0222-1     Document Type: Article

References (57)

1. Bleyer A. The adolescent and young adult gap in cancer care and outcome. Curr Probl Pediatr Adolesc Heath Care. 2005; 35: 182-217.
2. Thomas DM, Albritton KH, Ferrari A. Adolescent and young adult oncology: an emerging field. J Clin Oncol. 2010; 28: 4781-2.
3. Hinds PS, Quargnenti A, Bush AJ, et al. An evaluation of the impact of a self-care coping interaction on psychological and clinical outcomes in adolescents with newly diagnosed cancer. Eur J Oncol Nurs. 2000; 4: 6-17.
4. Butlow P, Palmer S, Pai A, et al. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol. 2010; 28: 4800-9.
5. Windebank KP, Spinetta JJ. Do as I say or die: compliance in adolescents with cancer. Pediatr Blood Cancer. 2008; 50: 1099-100.
6. Barrera M, Wayland LA, D'Agostino N, et al. Developmental differences in psychological adjustment and health related quality of life in pediatric cancer patients. Child Health Care. 2003; 12: 215-32.
7. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. J Am Med Assoc. 2002; 288: 2469-75.
8. Janson SL, Fahy JV, Covingtona JK, Paul SM, Gold WM, Boushey HA. Effects of individual self-management education on clinical, biological, and adherence outcomes in asthma. Am Journal Med. 2003; 11: 620-6.
9. Janson SL, Wong McGrath K, Covington JK, Cheng S, Boushey HA. Individualized asthma self-management improves medication adherence and markers of asthma control. J Allergy Clin Immun. 2009; 123: 840-6.
10. Kripalani S, Yao X, Haynes RB. Interventions to enhance medication adherence in chronic medical conditions: a systematic review. Arch Intern Med. 2007; 167: 540-9.
11. Barlow JH, Wright C, Sheasby J, et al. Self-management for people with chronic conditions: a review. Patient Educ Couns. 2002; 48: 177-87.
12. Foster C, Brown J, Killen M, et al. The NCRI cancer experiences collaborative: defining self management. Eur J Oncol Nurs. 2007; 11: 295-7.
13. Chodosh J, Morton SC, Jojica W, et al. Meta-analysis: chronic disease self-management programs for older adults. Ann Intern Med. 2005; 100: 427-38.
14. Warsi AM, Wang PS, LaValley MP, et al. Self-management education programs in chronic disease: a systematic review and methodological critique of the literature. Arch Intern Med. 2004; 164: 1641-9.
15. Barlow JH, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management for people with chronic conditions: a review. Patient Educ Couns. 2002; 48: 177-87.
16. Lorig K, Holman H. Arthritis self-management studies: a twelve year review. Health Educ Quart. 1993; 20: 17-28.
17. Morley S, Eccleston C, Williams A. Systematic review and meta-analysis of randomized controlled trials of cognitive-behaviour therapy and behaviour therapy for chronic pain in adults, excluding headache. Pain. 1999; 80: 1-13.
18. Superio-Cabuslay E, Ward MM, Lorig KR. Patient education interventions in osteoarthritis and rheumatoid arthritis: a meta-analytic comparison with nonsteroidal anti-inflammatory drug treatment. Arthrit Care Res. 1996; 9: 292-301.
19. Murray E, Burns J, See Tai S, Lai R, Nazareth I. Interactive Health Communication Applications for people with chronic disease. Cochrane Db Syst Rev. 2005; 4: 1-25.
20. Barlow JH, Ellard DR. Psycho-educational interventions for children with chronic disease, parents and siblings: an overview of the research evidence base. Child Care, Hlth Dev. 2004; 30: 637-45.
21. Eccleston C, Morley S, Williams A, Yorke L, Mastroyannopoulou K. Systematic review of randomized controlled trials of psychological therapy for chronic pain in children and adolescents, with a subset meta-analysis of pain relief. Pain. 2002; 99: 157-65.
22. Walco GA, Sterling CM, Conte PM, Engel RG. Empirically supported treatments in pediatric psychology: disease-related pain. J Pediatr Psychol. 1999; 24: 155-67.
23. Lavinge JV, Ross CK, Berry K, Pachman K, Ross R. Evaluation of a psychological treatment package for treating pain in juvenile rheumatoid arthritis. Arthrit Care Res. 1992; 5: 101-5.
24. Walco GA, Varni JW, IIowite NT. Cognitive-behavioral pain management in children with rheumatoid arthritis. Pediatrics. 1992; 89: 1075-9.
25. Barlow JH, Shaw KL, Southwood TR. Do psychosocial interventions have a role to play in paediatric rheumatology? Brit J Rheumatol. 1998; 37: 573-8.
26. Marks R, Allegrante JP, Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part I). Health Promot Pract. 2005; 6: 37-43.
27. Marks R, Allegrante JP, Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part II). Health Promot Pract. 2005; 6: 148-56.
28. Decker C, Phillips CR, Haase JE. Information needs of adolescents with cancer. J Pediatr Oncol Nurs. 2004; 21: 327-34.
29. Palmer S, Mitchell A, Thompson K, et al. Unmet needs among adolescent cancer patients: a pilot study. Palliative Supportive Care. 2007; 5: 127-34.
30. Wicks L, Mitchell A. The adolescent cancer experience: loss of control and benefit finding. Eur J Cancer Care. 2010; 19: 778-85.
31. Creswell JW. Qualitative inquiry and research design. Newbury Park: Sage; 1998.
32. Kvale S. Interviews: an introduction to qualitative research interviewing. Newbury Park: Sage; 1996.
33. Morgan DL. Focus groups as qualitative research. 2nd ed. Newbury Park: Sage; 1997.
34. SAS Institute Inc. SAS Version 9. 1. 3. North Carolina: SAS Institute Inc.; 2006.
35. QRS International. QSR NVivo8. Australia: QRS International Pty Ltd.; 2008.
36. Shapiro G, Markoff J. A matter of definition. In: Roberts CW, editor. Text analysis for the social sciences: methods for drawing statistical inferences from text and transcripts. Mahwah, New Jersey: Lawrence Erlbaum Associates; 1997. p. 9-24.
37. Miles M, Huberman M. An expanded source book: qualitative data analysis. Newbury Park: Sage; 1994.
38. Morse J, Field P. Qualitative research methods for health professionals. Newbury Park: Sage; 2005.
39. Cassell C, Symon G. Essential guide to qualitative methods in organizational research. London: Sage; 2004.
40. Strauss A, Corbin J. Basics of qualitative research: grounded theory, procedures and techniques. Newbury Park: Sage; 1990.
41. Giarelli E, Bernhardt B, Mack R, Pyeritz R. Adolescents transition to self-management of a chronic genetic disorder. Qual Health Res. 2008; 18: 441-57.
42. Iannotti RJ, Schneider S, Nansel TR, et al. Self-efficacy, outcome expectations, and diabetes self-management in adolescents with type 1 diabetes. J Dev Behav Pediatr. 2006; 27: 98-105.
43. Keough L, Sullivan-Bolyai S, Crawford S, Schilling L, Dixon J. Self-management of type 1 diabetes across adolescents. Diabetes Educator. 2011; 37: 486-500.
44. Stinson JN, Toomey PC, Stevens BJ, et al. Asking the experts: exploring the self-management needs of adolescents with arthritis. Arth Care Res. 2008; 59: 65-72.
45. Emmons K, Li FP, Whitton J, et al. Predictors of smoking initiation and cessation among childhood cancer survivors: a report from the childhood cancer survivor study. J Clin Oncol. 2002; 20: 1608-16.
46. Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the childhood cancer survivor study. Ann Fam Med. 2004; 2: 61-70.
47. Zebrack B. Information and service needs for young adult cancer patients. Supportive Care Cancer. 2008; 16: 1353-60.
48. Zebrack B. Information and service needs for young adult cancer survivors. Supportive Care Cancer. 2009; 17: 349-57.
49. Kelly D, Mullhall A. Adolescent cancer-the need to evaluate current service provision in the UK. Eur J Oncol Nurs. 2003; 7: 53-8.
50. Whelan JN. Where should teenagers with cancer be treated? Eur J Cancer. 2003; 39: 2573-8.
51. Palmer S, Mitchell A, Thompson K, Sexton M. Unmet needs among adolescent cancer patients: a pilot study. Palliative Support Care. 2007; 5: 127-34.
52. Dunsmore J, Quine S. Information, support, and decision-making needs and preferences of adolescents with cancer: implications for health professionals. J Psychosoc Oncol. 1995; 13: 39-56.
53. Decker CL. Social support and adolescent cancer survivors: a review of the literature. Psycho-Oncol. 2007; 16: 1-11.
54. Smetana JG, Campione-Barr N, Metzger A. Adolescent development in interpersonal and societal contexts. Annu Rev Psychol. 2006; 57: 255-84.
55. Ginsburg KR, Slap GB, Cnaan A, Forke CM, Balsley CM, Rouselle DM. Adolescents' perceptions of factors affecting their decisions to seek health care. J Am Med Assoc. 1995; 273: 1913-8.
56. Radecki L, Olson LM, Frintner MP, Tanner JL, Stein MT. What do families want from well-child care? Including parents in the rethinking discussion. Pediatr. 2009; 124: 858-65.
57. Yuan C. Self-management: where cancer nursing research will contribute for the coming decades. Cancer Nurs. 2010; 33: 329-30.