Psychosocial interventions for patients and caregivers in the age of new communication technologies: Opportunities and challenges in cancer care

Journal of Health Communication

Volumn 20, Issue 3, 2015, Pages 328-342

  Badr, Hoda ^a   Carmack, Cindy L ^b   Diefenbach, Michael A ^a  

^a MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CAREGIVER; HEALTH PROMOTION; HUMAN; HUMAN RELATION; MEDICAL INFORMATION; NEEDS ASSESSMENT; NEOPLASMS; PATIENT; PROCEDURES; PSYCHOLOGY; RANDOMIZED CONTROLLED TRIAL (TOPIC); SOCIAL MEDIA; SURVIVOR;

CAREGIVERS; HEALTH COMMUNICATION; HEALTH PROMOTION; HUMANS; INTERPERSONAL RELATIONS; NEEDS ASSESSMENT; NEOPLASMS; PATIENTS; RANDOMIZED CONTROLLED TRIALS AS TOPIC; SOCIAL MEDIA; SURVIVORS;

EID: 84925351663     PISSN: 10810730     EISSN: 10870415     Source Type: Journal    
DOI: 10.1080/10810730.2014.965369     Document Type: Review

References (90)

1. Amichai-Hamburger, Y., & Furnham, A. (2007). The positive net. Computers in Human Behavior, 23, 1033-1045.
2. Anderson, B. J., & Coyne, J. C. (1991). "Miscarried helping" in the families of children and adolescents with chronic diseases. Paper presented at the An adaptation of this paper was presented at the National Institute of Child Health and Human Development Conference on Compliance to Health-Promoting Behavior in Children, Washington, DC, Jul 1989.
3. Badr, H., & Carmack Taylor, C. L. (2008). Effects of relational maintenance on psychological distress and dyadic adjustment among couples coping with lung cancer. Health Psychology, 27, 616-627.
4. Badr, H., & Krebs, P. (2013). A systematic review and meta-analysis of psychosocial interventions for couples coping with cancer. Psycho-Oncology, 22, 1688-1704.
5. Baumeister, R. F., Heatherton, T. F., & Tice, D. M. (1994). Losing control: How and why people fail at self-regulation. Academic Press.
6. Bennett, G. G., & Glasgow, R. E. (2009). The delivery of public health interventions via the Internet: Actualizing their potential. Annual Review of Public Health, 30, 273-292.
7. Bodenmann, G., & Shantinath, S. D. (2004). The Couples Coping Enhancement Training (CCET): A new approach to prevention of marital distress based upon stress and coping. Family Relations, 53, 477-184.
8. Bonanno, A., & Choi, J. Y. (2011). Psychosocial aspects of orbitofacial disfigurement in cancer patients. In B. Esmaeli (Ed.), Ophthalmic oncology (pp. 311-318). New York, NY: Springer. MD Anderson Solid Tumor Oncology Series, Vol. 6.
9. Booth, S., Silvester, S., & Todd, C. (2003). Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers. Palliative and Supportive Care, 1, 337-344.
10. Cameron, L., & Leventhal, H. (2012). The self-regulation of health and illness behaviour: New York, NY: Routledge.
11. Campbell, A. J., Cumming, S. R., & Hughes, I. (2006). Internet use by the socially fearful: Addiction or therapy? Cyber Psychology & Behavior, 9, 69-81.
12. Carmack, C., Basen-Engquist, K, Shely, L., Baum, G., Giordano, S., Rodriguez-Bigas, M., ⋯ Demark-Wahnefried, W. (2013). Healthy Moves to improve lifestyle behaviors of cancer survivors and their spouses: Feasibility and preliminary results of intervention efficacy. Annals of Behavioral Medicine, 45(S2), s178.
13. Chou, W. S., Prestin, A., Lyons, C., & Wen, K. (2012). Web 2.0 for health promotion: Reviewing the current evidence. American Journal of Public Health, 103, 9-18.
14. Chou, W. Y. S., Hunt, Y. M., Beckjord, E. B., Moser, R. P., & Hesse, B. W. (2009). Social media use in the United States: Implications for health communication. Journal of Medical Internet Research, 11(4), e48.
15. Coleman, E., Smith, J., Frank, J., Min, S., Parry, C., & Kramer, A. (2004). Preparing patients and caregivers to participate in care delivered across settings: The Care Transitions Intervention. Journal of the American Geriatrics Society, 52, 1817-1825.
16. Cottrell, L., Spangler-Murphy, E., Minor, V., Downes, A., Nicholson, P., & Neal, W. A. (2005). A Kindergarten cardiovascular risk surveillance study: CARDIAC-kinder. American Journal of Health Behavior, 29, 595-606.
17. Coyne, J. C., Wortman, C. B., & Lehman, D. R. (1988). The other side of support: Emotional overinvolvement and miscarried helping. In B. H. Gonlieb (Ed.), Marshaling social support (pp. 305-330). Newbury Park, CA: Sage.
18. Cugelman, B., Thelwall, M., & Dawes, P. (2011). Online interventions for social marketing health behavior change campaigns: A metaanalysis of psychological architectures and adherence factors. Journal of Medical Internet Research, 13(1).
19. Deci, E. L., & Ryan, R. M. (1985). Intrinsic motivation and self-determination in human behavior. New York, NY: Plenum Press.
20. DeSimone, M., Spriggs, E., Gass, J. S., Carson, S. A., Krychman, M. L., & Dizon, D. S. (2012). Sexual dysfunction in female cancer survivors. American Journal of Clinical Oncology, 37, 101-106.
21. Diefenbach, M. A., & Butz, B. P. (2004). A multimedia interactive education system for prostate cancer patients: Development and preliminary evaluation. Journal of Medical Internet Research, 6(1).
22. Diefenbach, M. A., Mohamed, N. E., Butz, B. P., Bar-Chama, N., Stock, R., Cesaretti, J., ⋯ Hall, S. J. (2012). A pilot study to examine the feasibility and preliminary outcomes of an interactive, multimedia education and decision program for early-stage prostate cancer patients. Journal of Medical Internet Research, 14(1), e6.
23. DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment. Health Psychology, 23, 207-218.
24. DuBenske, L., Gustafson, D., Namkoong, K, Hawkins, R., Atwood, A., Brown, R., ⋯ Cleary, J. (2014). CHESS improves cancer caregivers' burden and mood: Results of an eHealth RCT. Health Psychology, 33, 1261-1272.
25. DuBenske, L., Chili, M.-Y., Dinauer, S., Gustafson, D. H., & Cleary, J. F. (2008). Development and implementation of a clinician reporting system for advanced stage cancer: Initial lessons learned. Journal of the American Medical Informatics Association, 15, 679-686.
26. DuBenske, L., Gustafson, D., Shaw, B., & Cleary, J. (2010). Web-based cancer communication and decision making systems: Connecting patients, caregivers, and clinicians for improved health outcomes. Medical Decision Making, 30, 732-744.
27. Dumont, S., Turgeon, J., Allard, P., Gagnon, P., Charbonneau, C., & Vezina, L. (2006). Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9, 912-921.
28. Ellison, N. B., Steinfield, C., & Lampe, C. (2007). The benefits of Facebook "friends": Social capital and college students' use of online social network sites. Journal of Computer-Mediated Communication, 12, 1143-1168.
29. Evers, K. E., Prochaska, J. M., Prochaska, J. O., Driskell, M. M., Cummins, C. O., & Velicer, W. F. (2003). Strengths and weaknesses of health behavior change programs on the Internet. Journal of Health Psychology, 8, 63-70.
30. Eysenbach, G. (2005). The law of attrition. Journal of Medical Internet Research, 7(1).
31. Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. BMJ, 328, 1166.
32. Farnham, S., Cheng, L., Stone, L., Zaner-Godsey, M., Hibbeln, C., Syrjala, K,⋯ Abrams, J. (2002, April). Hutch World: Clinical study of computer-mediated social support for cancer patients and their caregivers. Paper presented at the SIGCHI Conference on Human Factors in Computing Systems, Minneapolis, MN.
33. Fredman, S. J., Baucom, D. H., Gremore, T. M., Castellani, A. M., Kallman, T. A., Porter, L. S., ⋯ Carey, L. A. (2009). Quantifying the recruitment challenges with couple-based interventions for cancer: Applications to early-stage breast cancer. Psycho-Oncology, 18, 667-673.
34. Griffiths, C., Norton, L., Wagstaff, G., & Brunas-Wagstaff, J. (2002). Existential concerns in late stage cancer. European Journal of Oncology Nursing, 6, 243-246.
35. Gustafson, D., DuBenske, L., Namkoong, K, Hawkins, R., Chili, M., Atwood, A., ⋯ Cleary, J. F. (2013). An eHealth system supporting palliative care for patients with nonsmall cell lung cancer: A randomized trial. Cancer, 119, 1744-1751.
36. Gustafson, D., Hawkins, R., Boberg, E., Pingree, S., Serlin, R. E., Graziano, F., & Chan, C. L. (1999). Impact of a patient-centered, computer-based health information/support system. American Journal of Preventive Medicine, 16, 1-9.
37. Gustafson, D., Hawkins, R., McTavish, F., Pingree, S., Chen, W., Volrathongchai, K,⋯ Serlin, R. (2008). Internet-based interactive support for cancer patients: Are integrated systems better? Journal of Communication, 58, 238-257.
38. Gustafson, D., McTavish, F. M., & Hawkins, R. P. (1999). Computer-based support systems for women with breast cancer. JAMA, 281, 1268-1269.
39. Gysels, M. H., & Higginson, I. J. (2009). Caring for a person in advanced illness and suffering from breathlessness at home: Threats and resources. Palliative and Supportive Care, 7, 153-162.
40. Han, J., Hawkins, R., Shaw, B., Pingree, S., McTavish, F., & Gustafson, D. (2009). Unraveling uses and effects of an interactive health communication system. Journal of Broadcasting & Electronic Media, 53, 112-133.
41. Han, J., Wise, M., Kim, E., Pingree, R., Hawkins, R., Pingree, S., ⋯ Gustafson, D. (2010). Factors associated with use of interactive cancer communication system: An application of the comprehensive model of information seeking. Journal of Computer-Mediated Communication, 15, 367-388.
42. Institute of Medicine. (2002). Speaking of health: Assessing health communication strategies for diverse populations. Washington, DC: National Academies Press.
43. Jacobsen, P., & Stein, K. (1999). Is fatigue a long-term side effect of breast cancer treatment? Cancer Control, 6, 256-263.
44. Kalayjian, A. S. (1989). Coping with cancer: The spouse's perspective. Archives of Psychiatric Nursing, 3, 166.
45. Kopp, R. P., Marshall, L. M., Wang, P. Y., Bauer, D. C., Barrett-Connor, E., & Parsons, J. K. (2013). The burden of urinary incontinence and urinary bother among elderly prostate cancer survivors. European Urology, 64, 672-679.
46. Kumari, M., Head, J., & Marmot, M. (2004). Prospective study of social and other risk factors for incidence of type 2 diabetes in the Whitehall II study. Archives of Internal Medicine, 164, 1873-1880.
47. Lepore, S. J., & Revenson, T. A. (2007). Social constraints on disclosure and adjustment to cancer. Social and Personality Psychology Compass, 1, 313-333.
48. Liess, A., Simon, W., Yutsis, M., Owen, J. E., Piemme, K. A., Golant, M., & Giese-Davis, J. (2008). Detecting emotional expression in face-to-face and online breast cancer support groups. Journal of Consulting and Clinical Psychology, 76, 517-523.
49. Liu, X., & LaRose, R. (2008). Does using the Internet make people more satisfied with their lives? The effects of the Internet on college students' school life satisfaction. Cvber Psvchologv & Behavior, 11, 310-320.
50. Manne, S., & Badr, H. (2008). Intimacy and relationship processes in couples' psychosocial adaptation to cancer. Cancer, 112(11 Suppl), 2541-2555.
51. Manne, S., & Schnoll, R. (2001). Measuring supportive and unsupportive responses during cancer treatment: A factor analytic assessment of the partner responses to cancer inventory. Journal of Behavioral Medicine, 24, 297-321.
52. Manne, S., Taylor, K. L., Dougherty, J., & Kerneny, N. (1997). Supportive and negative responses in close relationships: Their association with psychological adjustment among individuals with cancer. Journal of Behavioral Medicine, 20, 101-126.
53. Markman, H. J., Renick, M. J., Floyd, F. J., Stanley, S. M., & Clements, M. (1993). Preventing marital distress through communication and conflict management training: A 4-and 5-year follow-up. Journal of Consulting and Clinical Psychology, 61, 70.
54. Matthews, A. B. (2003). Role and gender differences in cancer-related distress: A comparison of survivor and caregiver self-reports. Oncology Nursing Forum, 30, 493-499.
55. Mayer, D., Terrin, N., Kreps, G., Menon, U., McCance, K., Parsons, S., & Mooney, K. (2007). Cancer survivors information seeking behaviors: A comparison of survivors who do and do not seek information about cancer. Patient Education and Counseling, 65, 342-350.
56. McTavish, F. M., Hawkins, R. P., Gustafson, D. H., Pingree, S., & Shaw, B. R. (2000). Experiences of women with breast cancer: Exchanging social support over the CHESS computer network. Journal of Health Communication, 5, 135-159.
57. Milne, D., Sheeran, L., Holmes, M., Tidhar, G., & Aranda, S. (2012). Trialling a patient-led cancer care website in an acute cancer care setting. Journal of Research in Nursing, 17, 538-554.
58. Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. Annals of Internal Medicine, 151, 264-269.
59. Murray, S., Boyd, K, Kendall, M., Worth, A., Benton, T., & Clausen, H. (2002). Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their carers in the community. British Medical Journal, 325, 929.
60. Neff, L. A., & Karney, B. R. (2005). Gender differences in social support: A question of skill or responsiveness? Journal of Personality and Social Psychology, 88, 79.
61. Newman, M. W., Lauterbach, D., Munson, S. A., Resnick, P., & Morris, M. E. (2011, March). It's not that I don't have problems, I'm just not putting them on Facebook: Challenges and opportunities in using online social networks for health. Paper presented at the ACM 2011 conference on Computer Supported Cooperative Work, Hangzhou, China.
62. Norman, G. J., Zabinski, M. F., Adams, M. A., Rosenberg, D. E., Yaroch, A. L., & Atienza, A. A. (2007). A review of eHealth interventions for physical activity and dietary behavior change. American Journal of Preventive Medicine, 33, 336-345.
63. Northouse, L. L., Katapodi, M. C., Song, L., Zhang, L., & Mood, D. W. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 60, 317-339.
64. Osse, B. H., Vernooij-Dassen, M. J., Schadé, E., & Grol, R. P. (2006). Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nursing, 29, 378-388.
65. Owen, J. E., Bantum, E. O., & Golant, M. (2009). Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors. Psychooncology, 18, 144-155.
66. Patrick, K, Robinson, T. N., Alemi, F., & Eng, T. R. (1999). Policy issues relevant to evaluation of interactive health communication applications. American Journal of Preventive Medicine, 16, 35-42.
67. Pirri, C., Bayliss, E., Trotter, J., Olver, I., Katris, P., Drummond, P., & Bennett, R. (2013). Nausea still the poor relation in antiemetic therapy? The impact on cancer patients' quality of life and psychological adjustment of nausea, vomiting and appetite loss, individually and concurrently as part of a symptom cluster. Supportive Care in Cancer, 21, 735-748.
68. Pistrang, N., & Barker, C. (1995). The partner relationship in psychological response to breast cancer. Social Science & Medicine, 40, 789-797.
69. Poirier, J., & Cobb, N. K. (2012). Social influence as a driver of engagement in a web-based health intervention. Journal of Medical Internet Research, 14(1).
70. Porter, L. S., Keefe, F. J., Garst, J., McBride, C. M., & Baucom, D. (2008). Self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their informal caregivers: Associations with symptoms & distress. Pain, 137, 306-315.
71. Reis, J., McGinty, B., & Jones, S. (2003). An e-learning caregiving program for prostate cancer patients and family members. Journal of Medical Systems, 27, 1-12.
72. Schmaling, K. B., & Slier, T. G. (2000). The psychology of couples and illness. Washington, DC: American Psychological Association.
73. Schover, L. R., Yuan, Y., Sui, D., Neese, L., Jenkins, R., & Rhodes, M. M. (2012). A randomized trial of Internet-based versus traditional sexual counseling for couples after localized prostate cancer treatment. Cancer, 118, 500-509.
74. Sears, S. R., Stanton, A. L., & Danoff-Burg, S. (2003). The yellow brick road and the emerald city: Benefit finding, positive reappraisal coping and posttraumatic growth in women with early-stage breast cancer. Health Psychology, 22, 487-497.
75. Shaw, B. R., Hawkins, R., McTavish, F., Pingree, S., & Gustafson, D. H. (2006). Effects of insightful disclosure within computer mediated support groups on women with breast cancer. Health Communication, 19, 133-142.
76. Silveira, M. J., Given, C. W., Cease, K. B., Sikorskii, A., Given, B., Northouse, L. L., & Piette, J. D. (2011). Cancer Care Partners: Improving patients' symptom management by engaging informal caregivers. BMC Palliative Care, 10(1), 21.
77. Spek, V., Cuijpers, P., Nyklicek, I., Riper, H., Keyzer, J., & Pop, V. (2007). Internet-based cognitive behaviour therapy for symptoms of depression and anxiety: A meta-analysis. Psychological Medicine, 37, 319-328.
78. Thoits, P. A. (1986). Social support as coping assistance. Journal of Consulting and Clinical Psychology, 54, 416-423.
79. Tixier, M., & Lewkowicz, M. (2011). Design and evaluation of an online social support application for family caregivers. In A. Ant Ozok & P. Zaphiris (Eds.), Online communities and social computing (pp. 267-276). New York, NY: Springer.
80. van de Poll-Franse, L., & van Eenbergen, M. (2008). Internet use by cancer survivors: Current use and future wishes. Supportive Care in Cancer, 16, 1189-1195.
81. Van den Beuken-van Everdingen, M., De Rijke, J., Kessels, A., Schouten, H., Van Kleef, M., & Patijn, J. (2007). Prevalence of pain in patients with cancer: A systematic review of the past 40 years. Annals of Oncology, 18, 1437-1449.
82. Viola, R., Kiteley, C., Lloyd, N. S., Mackay, J. A., Wilson, J., & Wong, R. K. (2008). The management of dyspnea in cancer patients: A systematic review. Supportive Care in Cancer, 16, 329-337.
83. von Haehling, S., & Anker, S. D. (2010). Cachexia as a major underestimated and unmet medical need: Facts and numbers. Journal of Cachexia, Sarcopenia and Muscle, 1, 1-5.
84. Walther, J. B., & Boyd, S. (2002). Attraction to computer-mediated social support. In C. A. Lin & D. J. Atkin (Eds.), Communication technology and society: Audience adoption and uses, (pp. 153-188) New York, NY: Hampton Press.
85. Wang, H. X., Mittleman, M. A., & Orth-Gomer, K. (2005). Influence of social support on progression of coronary artery disease in women. Social Science and Medicine, 60, 599-607.
86. Weiss, J. B., & Lorenzi, N. M. (2005). Online communication and support for cancer patients: A relationship-centric design framework. In AMIA Annual Symposium Proceedings (pp. 799-803).
87. Weiss, J. B., & Lorenzi, N. M. (2006). Interface design for patient-caregiver integrated network. In AMIA Annual Symposium Proceedings (p. 1141).
88. Wingate, A. L., & Lackey, N. R. (1989). A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nursing, 12, 216-225.
89. Zabora, J., Brintzenhofeszoc, K., Curbow, B., Hooker, C., & Piantadosi, S. (2001). The prevalence of psychological distress by cancer site. Psycho-Oncology, 10, 19-28.
90. Zulman, D. M., Schafenacker, A., Barr, K. L. C., Moore, I. T., Fisher, J., McCurdy, K., ⋯ Northouse, L. (2012). Adapting an in-person patient-caregiver communication intervention to a tailored web-based format. Psycho-Oncology, 21, 336-341.