Supportive Care in Cancer

, Volume 21, Issue 9, pp 2371–2379

Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer

  • Kathrin Milbury
  • Hoda Badr
  • Frank Fossella
  • Katherine M. Pisters
  • Cindy L. Carmack
Original Article

Abstract

Purpose

While spouses play a vital role in the care of cancer patients, caregiving exerts a physical and psychological toll. Caregiving burden may not only compromise spouses’ quality of life but also the quality of care and support they are able to provide. Consequently, spousal caregiving burden may also negatively impact patients’ psychological adjustment. However, the effect of caregiving burden on patients’ psychological distress is unknown. Thus, this 6-month longitudinal study examined the associations between caregiving burden and distress in both lung cancer patients and their spouses.

Methods

Patients and their spouses individually completed questionnaires within 1 month of treatment initiation (baseline) and at 3- and 6-month follow-up. Distress was measured with the Brief Symptom Inventory and caregiving burden with the Caregiver Reaction Assessment.

Results

Multilevel modeling of data from 158 couples revealed that baseline spouses’ reports of caregiving-related health problems were significantly associated with 3-month (p < 0.001) and 6-month (p = 0.01) follow-up distress in both patients and spouses even when controlling for baseline distress and dyadic adjustment. Furthermore, there was evidence that baseline spouses’ reports of schedule disruption (p = 0.05) predicted 3-month patients’ distress and baseline spouses’ reports of financial strain (p < 0.05) and lack of support (p < 0.10) predicted their own distress at 6 month.

Conclusion

Caregiving burden is problematic for both patients and spouses. Couples in which spouses report caregiving-related health problems may be at particular high risk of long-term elevated distress. Targets of future couple-focused interventions such as self-care and use of social support are discussed.

Keywords

Lung cancer Caregiving reactions Couples Distress Prospective research 

References

  1. 1.
    Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112(11 Suppl):2556–2568PubMedCrossRefGoogle Scholar
  2. 2.
    Coyne JC and V Fiske (1992) Couples coping with chronic and catastrophic illness. In: Akamatsu TJ et al. (eds) Family health psychology. Hemisphere, Washington, pp. 129–149Google Scholar
  3. 3.
    Neuling SJ, Winefield HR (1988) Social support and recovery after surgery for breast cancer: frequency and correlates of supportive behaviours by family, friends and surgeon. Soc Sci Med 27(4):385–392PubMedCrossRefGoogle Scholar
  4. 4.
    Carmack Taylor CL et al (2008) Lung cancer patients and their spouses: psychological and relationship functioning within 1 month of treatment initiation. Ann Behav Med 36(2):129–140PubMedCrossRefGoogle Scholar
  5. 5.
    Braun M et al (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25(30):4829–4834PubMedCrossRefGoogle Scholar
  6. 6.
    Kim Y et al (2005) Levels of depressive symptoms in spouses of people with lung cancer: effects of personality, social support, and caregiving burden. Psychosomatics 46(2):123–130PubMedCrossRefGoogle Scholar
  7. 7.
    Ji J et al (2012) Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation 125:1742–1747PubMedCrossRefGoogle Scholar
  8. 8.
    Swore Fletcher BA et al (2008) Symptom experience of family caregivers of patients with cancer. Oncol Nurs Forum 35(2):E23–E44PubMedCrossRefGoogle Scholar
  9. 9.
    Acitelli L, Badr H (2005) My illness or our illness? Attending to the relationship when one partner is ill. In: Revenson TA, Kayser K, Bodenmann G (eds) Couples coping with stress: emerging perspectives on dyadic coping. American Psychological Association, Washington, pp 121–136Google Scholar
  10. 10.
    Kim Y et al (2011) Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers. Psychooncology 20(7):762–770PubMedCrossRefGoogle Scholar
  11. 11.
    Kim Y et al (2008) Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers. Ann Behav Med 35(2):230–238PubMedCrossRefGoogle Scholar
  12. 12.
    Badr H, Carmack Taylor CL (2008) Effects of relationship maintenance on psychological distress and dyadic adjustment among couples coping with lung cancer. Health Psychol 27(5):616–627PubMedCrossRefGoogle Scholar
  13. 13.
    Milbury K, Badr H, Carmack CL (2012) The role of blame in the psychosocial adjustment of couples coping with lung cancer. Annals of Behavioral Medicine 44(3):331–340PubMedCrossRefGoogle Scholar
  14. 14.
    Nijboer C et al (1999) Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86(4):577–588PubMedCrossRefGoogle Scholar
  15. 15.
    Nijboer C et al (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91(5):1029–1039PubMedCrossRefGoogle Scholar
  16. 16.
    Given CW et al (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15(4):271–283PubMedCrossRefGoogle Scholar
  17. 17.
    Poulin MJ et al (2010) Does a helping hand mean a heavy heart? Helping behavior and well-being among spouse caregivers. Psychology and Aging 25(1):108–117PubMedCrossRefGoogle Scholar
  18. 18.
    Nijboer C et al (1999) Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Soc Sci Med 48(9):1259–1269PubMedCrossRefGoogle Scholar
  19. 19.
    Pusa S, Persson C, Sundin K (2012) Significant others’ lived experiences following a lung cancer trajectory: from diagnosis through and after the death of a family member. Eur J Oncol Nurs 16(1):34–41PubMedCrossRefGoogle Scholar
  20. 20.
    Zabora J et al (2001) The prevalence of psychological distress by cancer site. Psychooncology 10(1):19–28PubMedCrossRefGoogle Scholar
  21. 21.
    Degner LF, Sloan JA (1995) Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer. J Pain Symptom Manage 10(6):423–431PubMedCrossRefGoogle Scholar
  22. 22.
    Ellis J (2012) The impact of lung cancer on patients and carers. Chron Respir Dis 9(1):39–47PubMedCrossRefGoogle Scholar
  23. 23.
    Stone AM et al (2012) Caring for a parent with lung cancer: caregivers’ perspectives on the role of communication. Qual Health Res 22(7):957–970PubMedCrossRefGoogle Scholar
  24. 24.
    Mosher CE et al (2013) Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer 21:431–437PubMedCrossRefGoogle Scholar
  25. 25.
    Lambert SD et al (2013) Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Cancer 21:75–85PubMedCrossRefGoogle Scholar
  26. 26.
    Stommel M et al (2004) A longitudinal analysis of the course of depressive symptomatology in geriatric patients with cancer of the breast, colon, lung, or prostate. Health Psychol 23(6):564–573PubMedCrossRefGoogle Scholar
  27. 27.
    Choi CW et al (2012) Group-based trajectory modeling of caregiver psychological distress over time. Ann Behav Med 44(1):73–84PubMedCrossRefGoogle Scholar
  28. 28.
    Oken MM et al (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5(6):649–655PubMedCrossRefGoogle Scholar
  29. 29.
    Derogatis LR (1993) Brief symptom inventory: administration, scoring, and procedures manual, 3rd edn. National Computer Systems, MinneapolisGoogle Scholar
  30. 30.
    Given CW et al (1992) The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Heal 15:271–283CrossRefGoogle Scholar
  31. 31.
    Spanier GB (1976) Measuring dyadic adjustment—new scales for assessing quality of marriage and similar dyads. J Marriage Family 38(1):15–28CrossRefGoogle Scholar
  32. 32.
    Badr H, Acitelli LK, Taylor CL (2008) Does talking about their relationship affect couples’ marital and psychological adjustment to lung cancer? J Cancer Surviv 2(1):53–64PubMedCrossRefGoogle Scholar
  33. 33.
    Kenny DA, Kashy DA, Cook WL (2006) Dyadic data analysis. Guilford, New YorkGoogle Scholar
  34. 34.
    Campbell L, Kashy DA (2002) Estimating actor, partner, and interaction effects for dyadic data using PROC MIXED and HLM: a user-friendly guide. Pers Relat 9(3):327–342CrossRefGoogle Scholar
  35. 35.
    Wolfer R and C Sang (1995) Comparing the SAS GLM and MIXED procedures for repeated measures. in Proceedings of the Twentieth Annual SAS Users Group Conference, Cary, NC. SAS Institute, GaryGoogle Scholar
  36. 36.
    Snijders T, Bosker R (1999) Multilevel analysis. Sage, Thousand OaksGoogle Scholar
  37. 37.
    Cohen J (1988) Statistical power analysis for the behavioral sciences, 2nd edn. Earlbaum, HillsdaleGoogle Scholar
  38. 38.
    Cohen J (1992) A power primer. Psychol Bull 112(1):155–159PubMedCrossRefGoogle Scholar
  39. 39.
    Preacher KJ, Curran PJ, Bauer DJ (2006) Computational tools for probing interaction effects in multiple linear regression, multilevel modeling, and latent curve analysis. J Educ Behav Stat 31(4):437–448CrossRefGoogle Scholar
  40. 40.
    Brant JM et al (2011) Symptom trajectories in posttreatment cancer survivors. Cancer Nurs 34(1):67–77PubMedCrossRefGoogle Scholar
  41. 41.
    Roca RM et al (2000) [Impact of caregiving on the health of family caregivers]. Aten Primaria 26(4):217–223CrossRefGoogle Scholar
  42. 42.
    Gaston-Johansson F et al (2004) Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncol Nurs Forum 31(6):1161–1169PubMedCrossRefGoogle Scholar
  43. 43.
    Hopwood P, Stephens RJ (2000) Depression in patients with lung cancer: prevalence and risk factors derived from quality-of-life data. J Clin Oncol 18(4):893–903PubMedGoogle Scholar
  44. 44.
    Graves KD et al (2007) Distress screening in a multidisciplinary lung cancer clinic: prevalence and predictors of clinically significant distress. Lung Cancer 55(2):215–224PubMedCrossRefGoogle Scholar
  45. 45.
    Jensen S, Given B (1993) Fatigue affecting family caregivers of cancer patients. Support Care Cancer 1(6):321–325PubMedCrossRefGoogle Scholar
  46. 46.
    Fletcher BA et al (2009) Trajectories of fatigue in family caregivers of patients undergoing radiation therapy for prostate cancer. Res Nurs Health 32(2):125–139PubMedCrossRefGoogle Scholar
  47. 47.
    Kiecolt-Glaser JK, Newton TL (2001) Marriage and health: his and hers. Psychol Bull 127(4):472–503PubMedCrossRefGoogle Scholar
  48. 48.
    Burton LC et al (1997) Preventive health behaviors among spousal caregivers. Prev Med 26(2):162–169PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Kathrin Milbury
    • 1
  • Hoda Badr
    • 2
  • Frank Fossella
    • 3
  • Katherine M. Pisters
    • 3
  • Cindy L. Carmack
    • 4
    • 5
  1. 1.Department of General Oncology, Unit 642The University of Texas MD Anderson Cancer CenterHoustonUSA
  2. 2.Department of Oncological SciencesMount Sinai School of MedicineNew YorkUSA
  3. 3.Department of Thoracic/Head & Neck Medical OncologyThe University of Texas MD Anderson Cancer CenterHoustonUSA
  4. 4.Department of Behavioral ScienceThe University of Texas MD Anderson Cancer CenterHoustonUSA
  5. 5.Department of Palliative Care and Rehabilitation MedicineThe University of Texas MD Anderson Cancer CenterHoustonUSA

Personalised recommendations