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Published in: Supportive Care in Cancer 9/2013

01-09-2013 | Original Article

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

Authors: Kathrin Milbury, Hoda Badr, Frank Fossella, Katherine M. Pisters, Cindy L. Carmack

Published in: Supportive Care in Cancer | Issue 9/2013

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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.
Literature
1.
go back to reference Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112(11 Suppl):2556–2568PubMedCrossRef Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112(11 Suppl):2556–2568PubMedCrossRef
2.
go back to reference 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. 129–149 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. 129–149
3.
go back to reference 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):385–392PubMedCrossRef 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):385–392PubMedCrossRef
4.
go back to reference 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):129–140PubMedCrossRef 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):129–140PubMedCrossRef
5.
go back to reference Braun M et al (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25(30):4829–4834PubMedCrossRef Braun M et al (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25(30):4829–4834PubMedCrossRef
6.
go back to reference 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):123–130PubMedCrossRef 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):123–130PubMedCrossRef
7.
go back to reference Ji J et al (2012) Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation 125:1742–1747PubMedCrossRef Ji J et al (2012) Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation 125:1742–1747PubMedCrossRef
8.
go back to reference Swore Fletcher BA et al (2008) Symptom experience of family caregivers of patients with cancer. Oncol Nurs Forum 35(2):E23–E44PubMedCrossRef Swore Fletcher BA et al (2008) Symptom experience of family caregivers of patients with cancer. Oncol Nurs Forum 35(2):E23–E44PubMedCrossRef
9.
go back to reference 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 121–136CrossRef 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 121–136CrossRef
10.
go back to reference 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):762–770PubMedCrossRef 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):762–770PubMedCrossRef
11.
go back to reference 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):230–238PubMedCrossRef 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):230–238PubMedCrossRef
12.
go back to reference 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):616–627PubMedCrossRef 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):616–627PubMedCrossRef
13.
go back to reference 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):331–340PubMedCrossRef 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):331–340PubMedCrossRef
14.
go back to reference Nijboer C et al (1999) Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86(4):577–588PubMedCrossRef Nijboer C et al (1999) Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86(4):577–588PubMedCrossRef
15.
go back to reference Nijboer C et al (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91(5):1029–1039PubMedCrossRef Nijboer C et al (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91(5):1029–1039PubMedCrossRef
16.
go back to reference 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):271–283CrossRefPubMed 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):271–283CrossRefPubMed
17.
go back to reference 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):108–117PubMedPubMedCentralCrossRef 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):108–117PubMedPubMedCentralCrossRef
18.
go back to reference 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):1259–1269CrossRefPubMed 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):1259–1269CrossRefPubMed
19.
go back to reference 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):34–41PubMedCrossRef 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):34–41PubMedCrossRef
20.
go back to reference Zabora J et al (2001) The prevalence of psychological distress by cancer site. Psychooncology 10(1):19–28PubMedCrossRef Zabora J et al (2001) The prevalence of psychological distress by cancer site. Psychooncology 10(1):19–28PubMedCrossRef
21.
go back to reference 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):423–431PubMedCrossRef 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):423–431PubMedCrossRef
22.
23.
go back to reference Stone AM et al (2012) Caring for a parent with lung cancer: caregivers’ perspectives on the role of communication. Qual Health Res 22(7):957–970PubMedCrossRef Stone AM et al (2012) Caring for a parent with lung cancer: caregivers’ perspectives on the role of communication. Qual Health Res 22(7):957–970PubMedCrossRef
24.
go back to reference Mosher CE et al (2013) Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer 21:431–437PubMedCrossRef Mosher CE et al (2013) Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges. Support Care Cancer 21:431–437PubMedCrossRef
25.
go back to reference 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 21:75–85PubMedCrossRef 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 21:75–85PubMedCrossRef
26.
go back to reference 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):564–573PubMedCrossRef 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):564–573PubMedCrossRef
27.
go back to reference Choi CW et al (2012) Group-based trajectory modeling of caregiver psychological distress over time. Ann Behav Med 44(1):73–84PubMedCrossRef Choi CW et al (2012) Group-based trajectory modeling of caregiver psychological distress over time. Ann Behav Med 44(1):73–84PubMedCrossRef
28.
go back to reference Oken MM et al (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5(6):649–655PubMedCrossRef Oken MM et al (1982) Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol 5(6):649–655PubMedCrossRef
29.
go back to reference Derogatis LR (1993) Brief symptom inventory: administration, scoring, and procedures manual, 3rd edn. National Computer Systems, Minneapolis Derogatis LR (1993) Brief symptom inventory: administration, scoring, and procedures manual, 3rd edn. National Computer Systems, Minneapolis
30.
go back to reference Given CW et al (1992) The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Heal 15:271–283CrossRef Given CW et al (1992) The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Heal 15:271–283CrossRef
31.
go back to reference Spanier GB (1976) Measuring dyadic adjustment—new scales for assessing quality of marriage and similar dyads. J Marriage Family 38(1):15–28CrossRef Spanier GB (1976) Measuring dyadic adjustment—new scales for assessing quality of marriage and similar dyads. J Marriage Family 38(1):15–28CrossRef
32.
go back to reference 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):53–64PubMedCrossRef 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):53–64PubMedCrossRef
33.
go back to reference Kenny DA, Kashy DA, Cook WL (2006) Dyadic data analysis. Guilford, New York Kenny DA, Kashy DA, Cook WL (2006) Dyadic data analysis. Guilford, New York
34.
go back to reference 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):327–342CrossRef 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):327–342CrossRef
35.
go back to reference 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, Gary 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, Gary
36.
go back to reference Snijders T, Bosker R (1999) Multilevel analysis. Sage, Thousand Oaks Snijders T, Bosker R (1999) Multilevel analysis. Sage, Thousand Oaks
37.
go back to reference Cohen J (1988) Statistical power analysis for the behavioral sciences, 2nd edn. Earlbaum, Hillsdale Cohen J (1988) Statistical power analysis for the behavioral sciences, 2nd edn. Earlbaum, Hillsdale
39.
go back to reference 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):437–448CrossRef 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):437–448CrossRef
40.
go back to reference Brant JM et al (2011) Symptom trajectories in posttreatment cancer survivors. Cancer Nurs 34(1):67–77PubMedCrossRef Brant JM et al (2011) Symptom trajectories in posttreatment cancer survivors. Cancer Nurs 34(1):67–77PubMedCrossRef
41.
go back to reference Roca RM et al (2000) [Impact of caregiving on the health of family caregivers]. Aten Primaria 26(4):217–223CrossRef Roca RM et al (2000) [Impact of caregiving on the health of family caregivers]. Aten Primaria 26(4):217–223CrossRef
42.
go back to reference 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):1161–1169PubMedCrossRef 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):1161–1169PubMedCrossRef
43.
go back to reference 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):893–903PubMedCrossRef 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):893–903PubMedCrossRef
44.
go back to reference Graves KD et al (2007) Distress screening in a multidisciplinary lung cancer clinic: prevalence and predictors of clinically significant distress. Lung Cancer 55(2):215–224PubMedCrossRef Graves KD et al (2007) Distress screening in a multidisciplinary lung cancer clinic: prevalence and predictors of clinically significant distress. Lung Cancer 55(2):215–224PubMedCrossRef
45.
go back to reference Jensen S, Given B (1993) Fatigue affecting family caregivers of cancer patients. Support Care Cancer 1(6):321–325PubMedCrossRef Jensen S, Given B (1993) Fatigue affecting family caregivers of cancer patients. Support Care Cancer 1(6):321–325PubMedCrossRef
46.
go back to reference Fletcher BA et al (2009) Trajectories of fatigue in family caregivers of patients undergoing radiation therapy for prostate cancer. Res Nurs Health 32(2):125–139PubMedCrossRef Fletcher BA et al (2009) Trajectories of fatigue in family caregivers of patients undergoing radiation therapy for prostate cancer. Res Nurs Health 32(2):125–139PubMedCrossRef
47.
go back to reference Kiecolt-Glaser JK, Newton TL (2001) Marriage and health: his and hers. Psychol Bull 127(4):472–503PubMedCrossRef Kiecolt-Glaser JK, Newton TL (2001) Marriage and health: his and hers. Psychol Bull 127(4):472–503PubMedCrossRef
48.
go back to reference Burton LC et al (1997) Preventive health behaviors among spousal caregivers. Prev Med 26(2):162–169PubMedCrossRef Burton LC et al (1997) Preventive health behaviors among spousal caregivers. Prev Med 26(2):162–169PubMedCrossRef
Metadata
Title
Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer
Authors
Kathrin Milbury
Hoda Badr
Frank Fossella
Katherine M. Pisters
Cindy L. Carmack
Publication date
01-09-2013
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 9/2013
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-013-1795-6

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