Family information needs at childhood cancer treatment completion

Pediatric Blood and Cancer

Volumn 58, Issue 4, 2012, Pages 621-626

  Wakefield, Claire E ^a,b   Butow, Phyllis ^c   Fleming, Catharine A K ^a,b   Daniel, Gunar ^a,b   Cohn, Richard J ^a,b  

^a SYDNEY CHILDREN'S HOSPITAL   (Australia)

^b UNIVERSITY OF NEW SOUTH WALES   (Australia)

^c UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Childhood cancer; Family studies; Information; Survivorship; Treatment completion; Unmet needs

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; CANCER SURVIVOR; CANCER THERAPY; CHILDHOOD CANCER; COPING BEHAVIOR; FAMILY; FATHER; FEMALE; FERTILITY; HUMAN; INSURANCE; LONELINESS; MALE; MEDICAL INFORMATION; MOTHER; PRIORITY JOURNAL; SIBLING;

ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; FAMILY; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NEOPLASMS; PATIENT EDUCATION AS TOPIC; SURVIVORS;

EID: 84856838210     PISSN: 15455009     EISSN: 15455017     Source Type: Journal    
DOI: 10.1002/pbc.23316     Document Type: Article

References (50)

1. Alfano CM, Rowland JH. Recovery issues in cancer survivorship: A new challenge for supportive care. Cancer J 2006; 12: 432-443.
2. Hodgkinson K, Butow P, Hunt GE, et al. Breast cancer survivors' supportive care needs 2-10 years after diagnosis. Support Care Cancer 2007; 15: 515-523.
3. Wakefield CE, McLoone J, Goodenough B, et al. The psychosocial impact of completing childhood cancer treatment: A systematic review of the literature. J Pediatr Psychol 2010; 35: 262-274.
4. Duffey-Lind EC, O'Holleran E, Healey M, et al. Transitioning to survivorship: A pilot study. J Pediatr Oncol Nurs 2006; 23: 335-343.
5. Maurice-Stam H, Oort FJ, Last BF, et al. Longitudinal assessment of health-related quality of life in preschool children with non-CNS cancer after the end of successful treatment. Pediatr Blood Cancer 2008; 50: 1047-1051.
6. Wakefield CE, McLoone JK, Butow P, et al. Parental adjustment to the completion of their child's cancer treatment. Pediatr Blood Cancer 2011; 56: 524-531.
7. Wijnberg-Williams BJ, Kamps WA, Klip EC, et al. Psychological adjustment of parents of pediatric cancer patients revisited: Five years later. Psycho-Oncol 2006; 15: 1-8.
8. Butow PN, Maclean M, Dunn SM, et al. The dynamics of change: Cancer patients' preferences for information, involvement and support. Ann Oncol 1997; 8: 857-863.
9. Ishibashi A. The needs of children and adolescents with cancer for information and social support. Cancer Nurs 2001; 24: 61-67.
10. Mitchell W, Clarke S, Sloper P. Care and support needs of children and young people with cancer and their parents. Psycho-Oncol 2006; 15: 805-816.
11. von Essen L, Enskar K, Skolin I. Important aspects of care and assistance for parents of children, 0-18 years of age, on or off treatment for cancer. Parent and nurse perceptions. Eur J Oncol Nurs 2001; 5: 254-264.
12. Davidson R, Mills ME. Cancer patients' satisfaction with communication, information and quality of care in a UK region. Eur J Cancer Care (Engl) 2005; 14: 83-90.
13. Dunsmore J, Quine S. Information, support, and decision-making needs and preferences of adolescents with cancer-Implications for health professionals. J Psychosoc Oncol 1996; 13: 39-56.
14. Hooker L. Information needs of teenagers with cancer: Developing a tool to explore the perceptions of patients and professionals. J Cancer Nurs 1997; 1: 160-168.
15. Hedstrom M, Skolin I, von Essen L. Distressing and positive experiences and important aspects of care for adolescents treated for cancer. Adolescent and nurse perceptions. Eur J Oncol Nurs 2004; 8: 6-17; discussion 18-19.
16. Palmer S, Mitchell A, Thompson K, et al. Unmet needs among adolescent cancer patients: A pilot study. Palliat Support Care 2007; 5: 127-134.
17. Nagel K, Eves M, Waterhouse L, et al. The development of an off-therapy needs questionnaire and protocol for survivors of childhood cancer. J Pediatr Oncol Nurs 2002; 19: 229-233.
18. Shields G, Schondel C, Barnhart L, et al. Social work in pediatric oncology: A family needs assessment. Soc Work Health Care 1995; 21: 39-54.
19. Dix DB, Klassen AF, Papsdorf M, et al. Factors affecting the delivery of family-centered care in pediatric oncology. Pediatr Blood Cancer 2009; 53: 1079-1085.
20. Kerr L, Harrison M, Medves J, et al. Supportive care needs of parents of children with cancer: Transition from diagnosis to treatment. Oncol Nurs Forum 2004; 31: E116-E126.
21. Jackson A, Stewart H, O'Toole M, et al. Pediatric brain tumor patients: Their parents' perceptions of the hospital experience. J Pediatr Oncol Nurs 2007; 24: 95-105.
22. Wijnberg-Williams BJ, Kamps WA, Klip EC, et al. Psychological distress and the impact of social support on fathers and mothers of pediatric cancer patients: Long-term prospective results. J Pediatr Psychol 2006; 31: 785-792.
23. Hobbie WL, Ogle SK, Reilly M, et al. Identifying the educational needs of parents at the completion of their child's cancer therapy. J Pediatr Oncol Nurs 2010; 27: 190-195.
24. Wilkins KL, Woodgate RL. A review of qualitative research on the childhood cancer experience from the perspective of siblings: A need to give them a voice. J Pediatr Oncol Nurs 2005; 22: 305-319, 315.
25. Oeffinger KC, Nathan PC, Kremer LCM. Challenges after curative treatment for childhood cancer and long-term follow up of survivors. Pediatr Clin North Am 2008; 55: 251-273.
26. Miles MB, Huberman AM. Qualitative data analysis: An expanded sourcebook. London: Sage; 1994.
27. Sankar P, Wolpe PR, Jones NL, et al. How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet 2006; 9: 78-86.
28. Hruschka D, Schwartz D, St John D, et al. Reliability in coding open-ended data: Lessons learned from HIV behavioral research. Field Methods 2004; 16: 307-331.
29. Denzin JM, Lincoln YS, editors. Handbook of qualitative research. London: Sage Publications; 1994.
30. Mays N, Pope C. Qualitative research: Rigour and qualitative research. Br Med J 1995; 311: 109.
31. Finney Rutten L, Arora NK, Bakos A, et al. Information needs and sources of information among cancer patients: A systematic review of research (1980-2003). Patient Educ Couns 2005; 57: 250-261.
32. Aitken TJ, Hathaway G. Long distance related stressors and coping behaviors in parents of children with cancer. J Pediatr Oncol Nurs 1993; 10: 3-12.
33. Central Intelligence Agency. 2010 29 June, 2010. CIA- The World Fact Book. Accessed 29 June, 2010.
34. Australian Bureau of Statistics. Household use of information technology, Australia, 2008-2009. Canberra: Australian Bureau of Statistics; 2009. Report nr 8146.0.
35. Lipworth W, Davey H, Carter S, et al. Beliefs and beyond: What can we learn from qualititative studies of lay people's understandings of cancer risk? Health Expectations 2010; 13: 113-124.
36. Ussher J, Kirsten L, Butow P, et al. What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med 2006; 62: 2565-2576.
37. de Bocanegra HT. Cancer patients' interest in group support programs. Cancer Nurs 1992; 15: 347-352.
38. Helgeson VS, Cohen S, Schultz R, et al. Group support interventions for women with breast cancer: Who benefits from what? Health Psychol 2000; 19: 107-114.
39. MacArthur N. Oncology Parents Group-Worth the effort? Sydney, Australia: Australian New Zealand Children's Haematology and Oncology Group (ANZCHOG) Annual Scientific Meeting; 2010.
40. Roberts CS, Piper L, Denny J, et al. A support group intervention to facilitate young adults' adjustment to cancer. Health Soc Work 1997; 22: 133-141.
41. Hobbie WL, Ogle SK, Ginsberg JP. Fertility concerns for young males undergoing cancer therapy. Semin Oncol Nurs 2009; 25: 245-250.
42. Levine J, Canada A, Stern CJ. Fertility preservation in adolescents and young adults with cancer. J Clin Oncol 2010; 28: 4831-4841.
43. Thewes B, Meiser B, Taylor A, et al. The fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol 2005; 23: 5155-5165.
44. van den Berg H, Langeveld NE. Parental knowledge of fertility in male childhood cancer survivors. Psycho-Oncol 2008; 17: 287-291.
45. Quinn GP, Vadaparampil ST. Fertility preservation and adolescent/young adult cancer patients: Physician communication challenges. J Adolesc Health 2009; 44: 394-400.
46. Goodwin T, Elizabeth Oosterhuis B, Kiernan M, et al. Attitudes and practices of pediatric oncology providers regarding fertility issues [see comment]. Pediatr Blood Cancer 2007; 48: 80-85.
47. Kendall M, Murray SA, Carduff E, et al. Use of multiperspective qualitative interviews to understand patients' and carers' beliefs, experiences, and needs. Br Med J 2009; 339: b4122.
48. Seitz DCM, Besier T, Goldbeck L. Psychosocial interventions for adolescent cancer patients: A systematic review of the literature. Psycho-Oncol 2009; 18: 683-690.
49. Haber M, Cohen J, Lucas T, et al. The relationship between self-reported received and perceived social support: A meta-analytic reveiw. Am J Commun Psychol 2007; 39: 133-144.
50. Arnold EM. The cessation of cancer treatment as a crisis. Soc Work Health Care 1999; 29: 21-38.