1.
Salsman JM, Yost KJ, West DW, Cella D (2011) Spiritual well-being and health-related quality of life in colorectal cancer: a multi-site examination of the role of personal meaning. Support Care in Cancer 19(6):757–764
CrossRef
2.
Rajandram RK, Jenewein J, McGrath C, Zwahlen RA (2009) Coping processes relevant to posttraumatic growth: an evidence-based review. Psychooncology 18(1):30–41
CrossRef
3.
Jansen L, Hoffmeister M, Chang-Claude J, Brenner H, Arndt V (2011) Benefit finding and post-traumatic growth in long-term colorectal cancer survivors: prevalence, determinants, and associations with quality of life. Support Care in Cancer 19(5):583–589
CrossRef
4.
Emslie C, Browne S, MacLeod U, Rozmovitz L, Mitchell E, Ziebland S (2009) “Getting through” not “going under”: a qualitative study of gender and spousal support after diagnosis with colorectal cancer. Soc Sci Med 68:1169–1175
CrossRefPubMedPubMedCentral
5.
Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F, Agrawal S (2008) Effects of caregiving demand, mutuality, and preparedness on family caregiving outcomes during cancer treatment. Oncol Nurs Forum 35(1):49–56
CrossRefPubMed
6.
Kayser K, Watson LE, Andrade JT (2007) Cancer as a “we disease”: examining the process of coping from a relational perspective. Families, Systems, Health 25(4):404–418
CrossRef
7.
Dumont S, Jacobs P, Turcotte V, Anderson D, Harel F (2010) Measurement challenges of informal caregiving: a novel measurement method applied to a cohort of palliative care patients. Soc Sci Med 71:1890–1895
CrossRefPubMed
8.
Berry LL, Dalwadi SM, Jacobson JO. (2016) Supporting the supporters: what family caregivers need to care for a loved one with cancer. J Oncol Practice, Dec 20 Epub ahead of print
9.
Havyer RD, van Ryn M, Wilson PM, Griffin JM. (2016). The effect of routine training on the self-efficacy of informal caregivers of colorectal cancer patients. Support Care Cancer, Nov 26 Epub ahead of print
10.
Bevans M, Sternberg EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307(4):398–403
CrossRefPubMedPubMedCentral
11.
Schumacher KL, Stewart BJ, Archbold PG (2007) Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiving outcomes. Nurs Res 56(6):425–433
CrossRefPubMed
12.
McLean LM, Walton T, Rodin G, Esplen MJ, Jones JM (2013) A couple-based intervention for patients and caregivers facing end-stage cancer: outcomes of a randomized controlled trial. Psycho-Oncology 22(1):28–38
CrossRefPubMed
13.
Northouse LL, Mood DW, Schafenacker A, Kalemkerian G, Zalupski M, Lorusso P, et al. (2012) Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psychooncology, 22(3), 555–563
14.
Northouse LL, Mood DW, Schafenacker A, Montie JE, Sandler HM, Forman JD, Hussain M et al (2007) Randomized clinical trial of family intervention for prostate cancer patients and their spouses. Cancer 110(12):2809–2818
CrossRefPubMed
15.
McMullen CK, Wasserman J, Altschuler A, Grant ML, Hornbrook MC, Liljestrand P et al (2011) Untreated peristomal skin complications among long-term colorectal cancer survivors with ostomies. Clin J Oncol Nurs 15(6):644–650
CrossRefPubMedPubMedCentral
16.
McMullen CK, Hornbrook MC, Grant M, Baldwin CM, Wendel SC, Mohler MJ et al (2008) The greatest challenges reported by long-term colorectal cancer survivors with stomas. J Support Oncol 6(4):175–182
PubMed
17.
Douglas M (1966) Purity and danger. Routledge, New York
CrossRef
18.
American Cancer Society (2017) Cancer facts & figures 2017. American Cancer Society, Atlanta
19.
Ramirez, M., Altschuler A., McMullen C., Grant M., Hornbrook M.C., Krouse R.S. (2013) ‘I didn’t feel like I was a person anymore’: realigning full adult personhood after ostomy surgery. Med Anthropol Q, in press
20.
Ramirez M, McMullen C, Grant M, Altschuler A, Hornbrook MC, Krouse RS (2009) Figuring out sex in a reconfigured body: experiences of female colorectal cancer survivors with ostomies. Women & Health 49(8):608–624
CrossRef
21.
Altschuler A, Ramirez M, Grant M, Hornbrook MC, Herrinton L, Krouse RS (2009) The influence of husbands’ support on their wives’ psychosocial adjustment to having an ostomy resulting from colorectal cancer. J Wound, Ostomy Continence Nurs 36(3):299–305
CrossRef
22.
Notter J, Burnard P (2006) Preparing for loop ileostomy surgery: women’s accounts from a qualitative study. Int J Nurs Stud 43(2):147–159
CrossRefPubMed
23.
Manderson L (2005) Boundary breaches: the body, sex and sexuality after stoma surgery. Soc Sci Med 61:405–415
CrossRefPubMed
24.
Downing A, Morris EJ, Richards J, Corner J, Wright P, Sebag-Montefiore D, Finan P, Dind P, Wood C, Lawton S, Feltbower R, Wagland R, Vernon S, Thomas J, Glaser AW (2015) Health-related quality of life after colorectal cancer in England: a patient-reported outcomes study of individuals 123–36 months after diagnosis. J Clin Oncol 33:616–624
CrossRefPubMed
25.
Krouse R, Grant M, Ferrell B, Dean G, Nelson R, Chu D (2007) Quality of life outcomes in 599 cancer and non-cancer patients with colostomies. J Surg Res 138(1):79–87
CrossRefPubMed
26.
Grant M, McMullen CK, Altschuler A, Mohler MJ, Hornbrook MC, Herrinton LJ, Wendel CS, Baldwin CM, Krouse RS (2011) Gender differences in quality of life among long-term colorectal cancer survivors with ostomies.
Oncology Nursing Forum 38(5):587–596 PMCID:PMC3251903
CrossRefPubMedPubMedCentral
27.
Morse J (1994) Critical issues in qualitative research methods. Sage Publications, Thousand Oaks, CA
28.
Quinn C, Clare L, Woods RT (2012) What predicts whether caregivers of people with dementia find meaning in their role? Int J Geriatr Psychiatr 27(11):1195–1202
CrossRef
29.
Poulin MJ, Brown SL, Ubel PA, Smith DM, Jankovic A, Langa KM (2011) Does a helping hand mean a heavy heart? Helping behavior and well-being among spouse caregivers. Psychol Aging 25(1):108–117
CrossRef
30.
Lyons KS, Stewart BJ, Archbold PG, Carter JH (2009) Optimism, pessimism, mutuality, and gender: predicting 10-year role strain in Parkinson’s disease spouses. The Gerontologist 49(3):378–387
CrossRefPubMed
31.
Shim B, Landerman LR, Davis LL (2011) Correlates of care relationship mutuality among carers of people with Alzheimer’s and Parkinson’s disease. J Adv Nurs 67(8):1729–1738
CrossRefPubMed
32.
Godwin KM, Swank PR, Vaeth P, Ostwald SK (2013) The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers. Aging Ment Health 17(4):423–431
CrossRefPubMedPubMedCentral
33.
Mackenzie A, Greenwood N (2012) Positive experiences of caregiving in stroke: a systematic review. Disabil Rehabil 34(17):1413–1422
CrossRefPubMed
34.
Archbold PG, Stewart BJ, Greenlick MR, Harvath T (1990) Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health 13(6):375–384
CrossRefPubMed
35.
Hirschfeld M (1983) Homecare versus institutionalization: family caregiving and senile brain disease. Int J Nurs Stud 20:23–32
CrossRefPubMed
36.
Cantor MH (1983) Strain among caregivers: a study of experience in the United States. The Gerontologist 23:597–604
CrossRefPubMed
37.
Noelker LS and Poulshock SW (1982) The effects on families of caring for impaired elderly in residence. Washington DC: Final Report submitted to the Administration on Aging
38.
Horowitz A Family caregiving to the frail elderly. Ann Rev Gerontol Geriatr 5:194–246
39.
Hornbrook MC, Wendel CS, Coons SJ, Grant M, Herrinton LJ, Mohler MJ et al (2011) Complications among colorectal cancer survivors: SF-6D preference-weighted quality of life scores. Med Care 49(3):321–326
CrossRefPubMedPubMedCentral
40.
Liu L, Herrinton LJ, Hornbrook MC, Wendel CS, Grant M, Krouse RS (2010) Early and late complications among long-term colorectal cancer survivors with ostomy or anastomosis. Dis Colon rectum 53(2):200–212
41.
Lofland J, Lofland L (1995) Analyzing social settings: a guide to qualitative observation and analysis. Wadsworth Publishing; New York
42.
Coeling H, Biordi D, Theis S (2003) Negotiating dyadic identity between caregivers and care receivers. J Nurs Scholarsh 35:21–25
CrossRefPubMed
43.
Richards L (1999) Using NVivo in qualitative research. Sage, Los Angeles, CA
44.
Luborsky M (1994) The identification and analysis of themes and patterns. In: Gubrium GF, Sankar A (eds) Qualitative methods in aging research. Sage, New York, NY, pp 189–210
45.
Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:349–357
CrossRefPubMed
46.
Hallet T (2003) Emotional feedback and amplification in social interaction. Sociol Q 44(4):705–726
CrossRef
47.
Fletcher BS, Miaskowski C, Given B, Schumacher K (2012) The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs 16(4):389–398
CrossRef
48.
Forsythe L, Parry C, Alfano C, Kent E, Leach C, Haggstrom D, Ganz P, Aziz N, Rowland JH (2013) Use of survivorship care plans in the United States: associations with survivorship care. J Natl Cancer Inst, 16 105(20):1579–1587
49.
McCabe MS, Faithfull S, Makin W, Wengstrom Y (2013) Survivorship programs and care planning. Cancer 119(Suppl 11):2179–2186
CrossRefPubMed
50.
Stricker CT, Jacobs LA, Risendal B, Jones A, Panzer S, Ganz PA et al (2011) Survivorship care planning after the Institute of Medicine recommendations: how are we faring? J Cancer Surviv 5:358–370
CrossRefPubMed
51.
Menne HL, Tucke SS, Whitlatch CJ, Feinberg LF (2008) Decision-making involvement scale for individuals with dementia and family caregivers. Am J Alzheimers Dis Other Dement 23(1):23–29
CrossRef
52.
McCullough LB, Wilson NL, Teasdale TT, Kolpakchi AL, Skelly JR (1993) Mapping personal, familial and professional values in long term care decisions. The Gerontologist 33:324–332
CrossRefPubMed
53.
Drigotas SM, Rusbult CE, Verette J (1999) Level of commitment, mutuality of commitment, and couple well-being. Pers Relat 6:389–409
CrossRef
54.
Siefert ML, Williams A, Dowd MF, Chappal-Aiken L, McCorkle R (2008) The caregiving experience in a racially diverse sample of cancer family caregivers. Cancer Nurs 31(5):399–407
CrossRefPubMedPubMedCentral