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Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial

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Abstract

Background

Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role.

Objective

Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden.

Design

A randomized controlled study design, with a follow-up assessment after 24 months.

Setting and participants

Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden.

Intervention

A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners’ physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity.

Results

One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time.

Discussion and conclusion

Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial.

Registered on ClinicalTrials.gov Identifier

NCT02398799.

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References

  1. McMurray, J. J., Adamopoulos, S., Anker, S. D., Auricchio, A., Bohm, M., et al. (2012). ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2012: The Task Force for the diagnosis and treatment of acute and chronic heart failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart Failure Association (HFA) of the ESC. European Journal of Heart Failure, 14, 803–869.

    Article  CAS  PubMed  Google Scholar 

  2. Berry, C., & McMurray, J. (1999). A review of quality-of-life evaluations in patients with congestive heart failure. Pharmacoeconomics, 16, 247–271.

    Article  CAS  PubMed  Google Scholar 

  3. Campbell, R. L., Banner, R., Konick-McMahan, J., & Naylor, M. D. (1998). Discharge planning and home follow-up of the elderly patient with heart failure. Nursing Clinics of North America, 33, 497–513.

    CAS  PubMed  Google Scholar 

  4. Pattenden, J. F., Roberts, H., & Lewin, R. J. (2007). Living with heart failure; patient and carer perspectives. European Journal of Cardiovascular Nursing, 6, 273–279.

    Article  CAS  PubMed  Google Scholar 

  5. Shafazand, M., Schaufelberger, M., Lappas, G., Swedberg, K., & Rosengren, A. (2009). Survival trends in men and women with heart failure of ischaemic and non-ischaemic origin: data for the period 1987-2003 from the Swedish Hospital Discharge Registry. European Heart Journal, 30, 671–678.

    Article  PubMed  Google Scholar 

  6. Welstand, J., Carson, A., & Rutherford, P. (2009). Living with heart failure: an integrative review. International Journal of Nursing Studies, 46, 1374–1385.

    Article  PubMed  Google Scholar 

  7. Rosland, A. M., Heisler, M., Choi, H. J., Silveira, M. J., & Piette, J. D. (2010). Family influences on self-management among functionally independent adults with diabetes or heart failure: do family members hinder as much as they help? Chronic Illness, 6, 22–33.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Buck, H.G., Harkness K, Wion R, Carroll SL, Cosman T, et al. (2014) Caregivers’ contributions to heart failure self-care: A systematic review. European Journal of Cardiovascular Nursing, 14(1), 79–89. doi:10.1177/1474515113518434

    Article  PubMed  Google Scholar 

  9. Dunbar, S. B., Clark, P. C., Reilly, C. M., Gary, R. A., Smith, A., et al. (2013). A trial of family partnership and education interventions in heart failure. Journal of Cardiac Failure, 19, 829–841.

    Article  CAS  PubMed  Google Scholar 

  10. Daugherty, J., Saarmann, L., Riegel, B., Sornborger, K., & Moser, D. (2002). Can we talk? Developing a social support nursing intervention for couples. Clinical Nurse Specialist, 16, 211–218.

    Article  PubMed  Google Scholar 

  11. Lamura, G., Mnich, E., Nolan, M., Wojszel, B., Krevers, B., et al. (2008). Family carers’ experiences using support services in Europe: empirical evidence from the EUROFAMCARE study. Gerontologist, 48, 752–771.

    Article  PubMed  Google Scholar 

  12. Rabow, M. W., Hauser, J. M., & Adams, J. (2004). Supporting family caregivers at the end of life: “they don’t know what they don’t know”. JAMA, 291, 483–491.

    Article  CAS  PubMed  Google Scholar 

  13. Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428.

    Article  PubMed  Google Scholar 

  14. Carretero, S., Garces, J., Rodenas, F., & Sanjose, V. (2009). The informal caregiver’s burden of dependent people: Theory and empirical review. Archives of Gerontology and Geriatrics, 49, 74–79.

    Article  PubMed  Google Scholar 

  15. Ohman, M., & Soderberg, S. (2004). The experiences of close relatives living with a person with serious chronic illness. Qualitative Health Research, 14, 396–410.

    Article  PubMed  Google Scholar 

  16. Rees, J., O’Boyle, C., & MacDonagh, R. (2001). Quality of life: Impact of chronic illness on the partner. Journal of the Royal Society of Medicine, 94, 563–566.

    CAS  PubMed  PubMed Central  Google Scholar 

  17. Lavela, S. L., & Ather, N. (2010). Psychological health in older adult spousal caregivers of older adults. Chronic Illness, 6, 67–80.

    Article  PubMed  Google Scholar 

  18. Pinquart, M., & Sorensen, S. (2007). Correlates of physical health of informal caregivers: a meta-analysis. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 62, P126–P137.

    Article  Google Scholar 

  19. Bobinac, A., van Exel, N. J., Rutten, F. F., & Brouwer, W. B. (2010). Caring for and caring about: Disentangling the caregiver effect and the family effect. Journal of Health Economics, 29, 549–556.

    Article  PubMed  Google Scholar 

  20. Martensson, J., Dracup, K., Canary, C., & Fridlund, B. (2003). Living with heart failure: Depression and quality of life in patients and spouses. Journal of Heart and Lung Transplantation, 22, 460–467.

    Article  PubMed  Google Scholar 

  21. Luttik, M. L., Jaarsma, T., Veeger, N. J., & van Veldhuisen, D. J. (2005). For better and for worse: Quality of life impaired in HF patients as well as in their partners. European Journal of Cardiovascular Nursing, 4, 11–14.

    Article  PubMed  Google Scholar 

  22. Pihl, E., Jacobsson, A., Fridlund, B., Stromberg, A., & Martensson, J. (2005). Depression and health-related quality of life in elderly patients suffering from heart failure and their spouses: A comparative study. European Journal of Heart Failure, 7, 583–589.

    Article  PubMed  Google Scholar 

  23. Agren, S., Evangelista, L., & Strömberg, A. (2010). Do partners of patients with chronic heart failure experience caregiver burden? European Journal of Cardiovascular Nursing, 9, 254–262.

    Article  PubMed  PubMed Central  Google Scholar 

  24. van Exel, N. J., Koopmanschap, M. A., van den Berg, B., Brouwer, W. B., & van den Bos, G. A. (2005). Burden of informal caregiving for stroke patients. Identification of caregivers at risk of adverse health effects. Cerebrovascular Diseases, 19, 11–17.

    Article  PubMed  Google Scholar 

  25. Dunbar, S. B., Clark, P. C., Quinn, C., Gary, R. A., & Kaslow, N. J. (2008). Family influences on heart failure self-care and outcomes. Journal of Cardiovascular Nursing, 23, 258–265.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Molloy, G. J., Johnston, D. W., & Witham, M. D. (2005). Family caregiving and congestive heart failure. Review and analysis. European Journal of Heart Failure, 7, 592–603.

    Article  PubMed  Google Scholar 

  27. Clark, A. M., Freydberg, C. N., McAlister, F. A., Tsuyuki, R. T., Armstrong, P. W., et al. (2009). Patient and informal caregivers’ knowledge of heart failure: Necessary but insufficient for effective self-care. European Journal of Heart Failure, 11, 617–621.

    Article  PubMed  Google Scholar 

  28. Duhamel, F., Dupuis, F., Reidy, M., & Nadon, N. (2007). A qualitative evaluation of a family nursing intervention. Clinical Nurse Specialist, 21, 43–49.

    Article  PubMed  Google Scholar 

  29. Pressler, S. J., Gradus-Pizlo, I., Chubinski, S. D., Smith, G., Wheeler, S., et al. (2009). Family caregiver outcomes in heart failure. American Journal of Critical Care, 18, 149–159.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Eilayyan, O., Gogovor, A., Mayo, N., Ernst, P., & Ahmed, S. (2015). Predictors of perceived asthma control among patients managed in primary care clinics. Quality of Life Research, 24, 55–65.

    Article  PubMed  Google Scholar 

  31. Agren, S., Evangelista, L. S., Hjelm, C., & Strömberg, A. (2012). Dyads affected by chronic heart failure: a randomized study evaluating effects of education and psychosocial support to patients with heart failure and their partners. Journal of Cardiac Failure, 18, 359–366.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Liljeroos, M., Agren, S., Jaarsma, T., Arestedt, K., & Stromberg, A. (2015). Long term follow-up after a randomized integrated educational and psychosocial intervention in patient-partner dyads affected by heart failure. PLoS ONE, 10, e0138058.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Moser, D. K., Dickson, V., Jaarsma, T., Lee, C., Stromberg, A., et al. (2012). Role of self-care in the patient with heart failure. Current Cardiology Reports, 14, 265–275.

    Article  PubMed  Google Scholar 

  34. Riegel, B., Lee, C. S., & Dickson, V. V. (2011). Self care in patients with chronic heart failure. Nature Reviews Cardiology, 8, 644–654.

    Article  PubMed  Google Scholar 

  35. Luttik, M. L., Jaarsma, T., Lesman, I., Sanderman, R., & Hagedoorn, M. (2009). Quality of life in partners of people with congestive heart failure: Gender and involvement in care. Journal of Advanced Nursing, 65, 1442–1451.

    Article  PubMed  Google Scholar 

  36. Agren, S., Evangelista, L., Davidson, T., & Stromberg, A. (2010) The influence of chronic heart failure in patient-partner dyads-a comparative study addressing issues of health-related quality of life. The Journal of Cardiovascular Nursing.

  37. Elmstahl, S., Malmberg, B., & Annerstedt, L. (1996). Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation, 77, 177–182.

    Article  CAS  PubMed  Google Scholar 

  38. Andren, S., & Elmstahl, S. (2005). Family caregivers’ subjective experiences of satisfaction in dementia care: Aspects of burden, subjective health and sense of coherence. Scandinavian Journal of Caring Sciences, 19, 157–168.

    Article  PubMed  Google Scholar 

  39. Ware, J. E., Snow, K. K., & Kosinski, M. B. G. (1993). SF-36 ® health survey manual and interpretation guide. Boston: New England Medical Center, The Health Institute.

    Google Scholar 

  40. Sullivan, M., Karlsson, J., & Ware, J. E., Jr. (1995). The Swedish SF-36 Health Survey—I. Evaluation of data quality, scaling assumptions, reliability and construct validity across general populations in Sweden. Social Science and Medicine, 41, 1349–1358.

    Article  CAS  PubMed  Google Scholar 

  41. Beck, A. T., Ward, C. H., Mendelson, M., Mock, J., & Erbaugh, J. (1961). An inventory for measuring depression. Archives of General Psychiatry, 4, 561–571.

    Article  CAS  PubMed  Google Scholar 

  42. Beck, A. T., Steer, R. A., Brown, G. K., & Lindfors, J. (2006). BDI-II: Beck depression inventory: Manual, svensk version. Stockholm: Psykologiförlaget.

    Google Scholar 

  43. Arestedt, K., Agren, S., Flemme, I., Moser, D. K., & Stromberg, A. (2014) A psychometric evaluation of the four-item version of the Control Attitudes Scale for patients with cardiac disease and their partners. The Journal of Cardiovascular Nursing.

  44. Altman, D. G. (1991). Practical statistics for medical research. London: Chapman and Hall.

    Google Scholar 

  45. Cohen, J. (1988). Statistical power analysis for the behavioral sciences: Hillsdale. NJ: Erlbaum.

    Google Scholar 

  46. Lee, C. S., Vellone, E., Lyons, K. S., Cocchieri, A., Bidwell, J. T., et al. (2015). Patterns and predictors of patient and caregiver engagement in heart failure care: A multi-level dyadic study. International Journal of Nursing Studies, 52, 588–597.

    Article  PubMed  Google Scholar 

  47. Martire, L. M., Schulz, R., Helgeson, V. S., Small, B. J., & Saghafi, E. M. (2010). Review and meta-analysis of couple-oriented interventions for chronic illness. Annals of Behavioral Medicine, 40, 325–342.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Dalteg, T., Benzein, E., Fridlund, B., & Malm, D. (2011). Cardiac disease and its consequences on the partner relationship: A systematic review. European Journal of Cardiovascular Nursing, 10, 140–149.

    Article  PubMed  Google Scholar 

  49. Martire, L. M., Lustig, A. P., Schulz, R., Miller, G. E., & Helgeson, V. S. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23, 599–611.

    Article  PubMed  Google Scholar 

  50. Lyons, K. S., Vellone, E., Lee, C. S., Cocchieri, A., Bidwell, J. T., et al. (2015). A dyadic approach to managing heart failure with confidence. Journal of Cardiovascular Nursing, 30, S64–S71.

    Article  PubMed  Google Scholar 

  51. Agren, S., Frisman, G. H., Berg, S., Svedjeholm, R., & Stromberg, A. (2009). Addressing spouses’ unique needs after cardiac surgery when recovery is complicated by heart failure. Heart and Lung, 38, 284–291.

    Article  PubMed  Google Scholar 

  52. Dunbar, S. B., Clark, P. C., Deaton, C., Smith, A. L., De, A. K., et al. (2005). Family education and support interventions in heart failure: A pilot study. Nursing Research, 54, 158–166.

    Article  PubMed  Google Scholar 

  53. Sebern, M. D., & Woda, A. (2012). Shared care dyadic intervention: Outcome patterns for heart failure care partners. Western Journal of Nursing Research, 34, 289–316.

    Article  PubMed  Google Scholar 

  54. Lofvenmark, C., Saboonchi, F., Edner, M., Billing, E., & Mattiasson, A. C. (2013). Evaluation of an educational programme for family members of patients living with heart failure: A randomised controlled trial. Journal of Clinical Nursing, 22, 115–126.

    Article  PubMed  Google Scholar 

  55. Liljeroos, M., Agren, S., Jaarsma, T., & Stromberg, A. (2014). Perceived caring needs in patient-partner dyads affected by heart failure: A qualitative study. Journal of Clinical Nursing, 23, 2928–2938.

    Article  PubMed  Google Scholar 

  56. Kirby, R., Holmes, K., & Amoroso, P. (2010). Supporting the supporter: Helping the partner of patients newly diagnosed with prostate cancer. BJU International, 105, 1489–1490.

    Article  PubMed  Google Scholar 

  57. Vellone, E., Chung, M. L., Cocchieri, A., Rocco, G., Alvaro, R., et al. (2014). Effects of self-care on quality of life in adults with heart failure and their spousal caregivers: Testing dyadic dynamics using the actor-partner interdependence model. Journal of Family Nursing, 20, 120–141.

    Article  PubMed  Google Scholar 

  58. Pressler, S. J., Gradus-Pizlo, I., Chubinski, S. D., Smith, G., Wheeler, S., et al. (2013). Family caregivers of patients with heart failure: a longitudinal study. Journal of Cardiovascular Nursing, 28, 417–428.

    Article  PubMed  Google Scholar 

  59. Elbert, N. J., van Os-Medendorp, H., van Renselaar, W., Ekeland, A. G., Hakkaart-van Roijen, L., et al. (2014). Effectiveness and cost-effectiveness of ehealth interventions in somatic diseases: A systematic review of systematic reviews and meta-analyses. Journal of Medical Internet Research, 16, e110.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Altman, D. G. (2006). Practical statistics for medical research. London: Chapman and Hall.

    Google Scholar 

  61. Quinn, C., Dunbar, S. B., Clark, P. C., & Strickland, O. L. (2010). Challenges and strategies of dyad research: Cardiovascular examples. Applied Nursing Research, 23, e15–e20.

    Article  PubMed  Google Scholar 

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Acknowledgments

We thank patients with heart failure and their partners, Carina Hjelm at Linköping University hospital, Annette Waldemar and Lillevi Nestor at Vrinnevi hospital and Norrköping for support with the intervention.

Funding

The study was financially supported by grants from the Swedish Institute for Health Sciences.

Author information

Authors and Affiliations

  1. Division of Nursing Sciences, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden

    Maria Liljeroos, Susanna Ågren, Kristofer Årestedt & Anna Strömberg

  2. Centre for Clinical Research Sörmland, Uppsala University, Eskilstuna, Sweden

    Maria Liljeroos

  3. Department of Cardiothoracic Surgery, County Council of Östergötland, Linköping, Sweden

    Susanna Ågren

  4. Department of Social and Welfare Studies, Linköping University, Linköping, Sweden

    Tiny Jaarsma

  5. School of Health and Caring Sciences, Faculty of Health, Social Work and Behavioral Sciences, Linnaeus University, Kalmar, Sweden

    Kristofer Årestedt

  6. Department of Cardiology, County Council of Östergötland, Linköping, Sweden

    Anna Strömberg

  7. Department of Medicine, Mälarsjukhuset, Eskilstuna, Sweden

    Maria Liljeroos

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  1. Maria Liljeroos
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  2. Susanna Ågren
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  3. Tiny Jaarsma
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  4. Kristofer Årestedt
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Corresponding author

Correspondence to Maria Liljeroos.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

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.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Liljeroos, M., Ågren, S., Jaarsma, T. et al. Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial. Qual Life Res 26, 367–379 (2017). https://doi.org/10.1007/s11136-016-1400-9

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