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Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives

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Abstract

Purpose

Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient’s illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers’ key challenges in coping with their family member’s advanced colorectal cancer from the perspective of patients and caregivers.

Methods

Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis.

Results

In nearly all cases, patient and caregiver reports of the caregiver’s key challenge were discrepant. Across patient and caregiver reports, caregivers’ key challenges included processing emotions surrounding the patient’s initial diagnosis or recurrence and addressing the patient’s practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient’s potential functional decline and prognosis and observing the patient suffer from various physical symptoms.

Conclusions

Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers’ challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

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References

  1. Blum K, Sherman DW (2010) Understanding the experience of caregivers: a focus on transitions. Semin Oncol Nurs 26:243–258

    Article  PubMed  Google Scholar 

  2. National Alliance for Caregiving (2009) National Alliance for Caregiving: Caregiving in the U.S., 2009. Available at: http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf.

  3. van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, Atienza AA, Phelan S, Finstad D, Rowland J (2011) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psychooncology 20:44–52

    Article  PubMed  PubMed Central  Google Scholar 

  4. Gaugler JE, Hanna N, Linder J, Given CW, Tolbert V, Kataria R, Regine WF (2005) Cancer caregiving and subjective stress: a multi-site, multi-dimensional analysis. Psychooncology 14:771–785

    Article  PubMed  Google Scholar 

  5. Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psychooncology 20:88–97

    Article  PubMed  Google Scholar 

  6. Kim Y, Schulz R (2008) Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. J Aging Health 20:483–503

    Article  PubMed  Google Scholar 

  7. Mosher CE, Bakas T, Champion VL (2013) Physical health, mental health, and life changes among family caregivers of patients with lung cancer. Oncol Nurs Forum 40:53–61

    Article  PubMed  Google Scholar 

  8. Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25:4829–4834

    Article  PubMed  Google Scholar 

  9. Fridriksdóttir N, Saevarsdóttir T, Halfdánardóttir SI, Jónsdóttir A, Magnúsdóttir H, Ólafsdóttir KL, Guethmundsdóttir G, Gunnarsdóttir S (2011) Family members of cancer patients: needs, quality of life and symptoms of anxiety and depression. Acta Oncol 50:252–258

    Article  Google Scholar 

  10. Mosher CE, Champion VL, Hanna N, Jalal SI, Fakiris AJ, Birdas TJ, Okereke IC, Kesler KA, Einhorn LH, Given BA, Monahan PO, Ostroff JS (2013) Support service use and interest in support services among distressed family caregivers of lung cancer patients. Psychooncology 22:1549–1556

    Article  PubMed  Google Scholar 

  11. Sklenarova H, Krümpelmann A, Haun MW, Friederich H-C, Huber J, Thomas M, Winkler EC, Herzog W, Hartmann M (2015) When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 121:1513–1519

    Article  PubMed  Google Scholar 

  12. Choi CW, Stone RA, Kim KH, Ren D, Schulz R, Given CW, Given BA, Sherwood PR (2012) Group-based trajectory modeling of caregiver psychological distress over time. Ann Behav Med 44:73–84

    Article  PubMed  Google Scholar 

  13. Lambert SD, Jones BL, Girgis A, Lecathelinais C (2012) Distressed partners and caregivers do not recover easily: adjustment trajectories among partners and caregivers of cancer survivors. Ann Behav Med 44:225–235

    Article  PubMed  Google Scholar 

  14. American Cancer Society (2015) Cancer Facts and Figures 2015. American Cancer Society, Atlanta, GA

    Google Scholar 

  15. Houldin AD (2007) A qualitative study of caregivers’ experiences with newly diagnosed advanced colorectal cancer. Oncol Nurs Forum 34:323–330

    Article  PubMed  Google Scholar 

  16. Kim Y, Kashy DA, Evans TV (2007) Age and attachment style impact stress and depressive symptoms among caregivers: a prospective investigation. J Cancer Surviv 1:35–43

    Article  PubMed  Google Scholar 

  17. Kim Y, Carver CS, Rocha-Lima C, Shaffer KM (2013) Depressive symptoms among caregivers of colorectal cancer patients during the first year since diagnosis: a longitudinal investigation. Psychooncology 22:362–367

    Article  PubMed  Google Scholar 

  18. Pettersson G, Bertero C, Unosson M, Borjeson S (2014) Symptom prevalence, frequency, severity, and distress during chemotherapy for patients with colorectal cancer. Support Care Cancer 22:1171–1179

    Article  PubMed  Google Scholar 

  19. Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101

    Article  Google Scholar 

  20. Miles MB, Huberman AM, Saldaña J (2014) Qualitative data analysis: a methods sourcebook, 3rd edn. Sage Publications, Thousand Oaks, CA

    Google Scholar 

  21. Guest G, Bunce A, Johnson L (2006) How many interviews are enough? Field Methods 18:59–82

    Article  Google Scholar 

  22. Lepore SJ, Revenson TA (2007) Social constraints on disclosure and adjustment to cancer. Soc Personal Psychol Compass 1:313–333

    Article  Google Scholar 

  23. Manne SL, Ostroff J, Winkel G, Grana G, Fox K (2005) Partner unsupportive responses, avoidant coping, and distress among women with early stage breast cancer: Patient and partner perspectives. Health Psychol 24:635–641

    Article  PubMed  Google Scholar 

  24. Cordova MJ, Cunningham LLC, Carlson CR, Andrykowski MA (2001) Social constraints, cognitive processing, and adjustment to breast cancer. J Consult Clin Psychol 69:706–711

    Article  CAS  PubMed  Google Scholar 

  25. Badr H, Carmack Taylor CL (2006) Social constraints and spousal communication in lung cancer. Psychooncology 15:673–683

    Article  PubMed  Google Scholar 

  26. Thomas C, Morris SM, Harman JC (2002) Companions through cancer: the care given by informal carers in cancer contexts. Soc Sci Med 54:529–544

    Article  PubMed  Google Scholar 

  27. Erickson RJ (2005) Why emotion work matters: sex, gender, and the division of household labor. J Marriage Fam 67:337–351

    Article  Google Scholar 

  28. Mosher CE, Jaynes HA, Hanna N, Ostroff JS (2013) Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer 21:431–437

    Article  PubMed  Google Scholar 

  29. Vanderwerker LC, Laff RE, Kadan-Lottick NS, McColl S, Prigerson HG (2005) Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 23:6899–6907

    Article  PubMed  PubMed Central  Google Scholar 

  30. Mosher CE, Given BA, Ostroff JS (2015) Barriers to mental health service use among distressed family caregivers of lung cancer patients. Eur J Cancer Care (Engl) 24:50–59

    Article  CAS  Google Scholar 

  31. Given B, Given CW, Sikorskii A, Jeon S, Sherwood P, Rahbar M (2006) The impact of providing symptom management assistance on caregiver reaction: results of a randomized trial. J Pain Symptom Manage 32:433–443

    Article  PubMed  Google Scholar 

  32. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60:317–339

    PubMed  PubMed Central  Google Scholar 

  33. O’Hara RE, Hull JG, Lyons KD, Bakitas M, Hegel MT, Li Z, Ahles TA (2010) Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliat Support Care 8:395–404

    Article  PubMed  PubMed Central  Google Scholar 

  34. Wen K-Y, Gustafson D (2004) Needs assessment for cancer patients and their families. Health Qual Life Outcomes 2:11

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgments

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number K05CA175048. Catherine Mosher’s work was supported by K07CA168883 from the National Cancer Institute. Rebecca Adams’s work was supported by R25CA117865 (V. Champion, PI) from the National Cancer Institute. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors would like to thank the study participants and Danielle B. Tometich for her assistance.

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Authors and Affiliations

  1. Department of Psychology, Indiana University-Purdue University Indianapolis, 402 North Blackford Street, LD 124, Indianapolis, IN, 46202, USA

    Catherine E. Mosher & Rebecca N. Adams

  2. Department of Medicine, Indiana University School of Medicine, Indiana Cancer Pavilion, 535 Barnhill Drive, Room 473, Indianapolis, IN, 46202, USA

    Paul R. Helft, Bert H. O’Neil & Safi Shahda

  3. Center for Health Information and Communication, Richard L. Roudebush VA Medical Center, 1481 West 10th Street, 11H, Indianapolis, IN, 46202, USA

    Nicholas A. Rattray

  4. Indiana University School of Nursing, 1111 Middle Drive, NU 340G, Indianapolis, IN, 46202, USA

    Victoria L. Champion

Authors
  1. Catherine E. Mosher
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  2. Rebecca N. Adams
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  3. Paul R. Helft
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  4. Bert H. O’Neil
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  5. Safi Shahda
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  6. Nicholas A. Rattray
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  7. Victoria L. Champion
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Corresponding author

Correspondence to Catherine E. Mosher.

Ethics declarations

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Conflict of interest

The authors declare that they have no competing interest.

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Mosher, C.E., Adams, R.N., Helft, P.R. et al. Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives. Support Care Cancer 24, 2017–2024 (2016). https://doi.org/10.1007/s00520-015-2995-z

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  • DOI: https://doi.org/10.1007/s00520-015-2995-z

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