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Understanding the experiences of older caregivers of patients with lung cancer during palliative chemotherapy in China: a qualitative study

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Abstract

Purpose

Although there has been an increase in research on caregivers of patients with cancer, there has been little focus on the specific experiences of older caregivers of patients with lung cancer and the effect of their cultural backgrounds on their experiences. This study explored the caregiver experience among the ageing population in China.

Methods

Older caregivers of patients with lung cancer undergoing palliative chemotherapy were recruited. Data were collected using a qualitative descriptive design involving semi-structured interviews, which were recorded, transcribed verbatim and analysed qualitatively using inductive content analysis.

Results

Eighteen caregivers aged 61–81 years completed the interviews. The following four themes were identified: physical difficulty, living with ambivalence, perception of role and role-related behaviour changes. These themes enabled a greater understanding of role-related behaviours in older caregivers and their challenges in addressing biological and psychosocial challenges related to older age.

Conclusion

The present study highlighted the vulnerability and perceived challenges of the role of older caregivers. These findings help lay the foundation for interventions to improve the care provided to caregivers and their health outcomes, especially caregivers with chronic conditions.

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Data availability

The authors have full control of all primary data and agree to allow the journal to review the data if requested.

Code availability

Not applicable.

References

  1. Cao W, Chen HD, Yu YW, Li N, Chen WQ (2021) Changing profiles of cancer burden worldwide and in China: a secondary analysis of the global cancer statistics 2020. Chin Med J (Engl) 134(7):783–791

    Article  Google Scholar 

  2. Ikander T, Jeppesen SS, Hansen O, Raunkiær M, Dieperink KB (2021) Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study. BMC Palliat Care 20(1):37

    Article  PubMed  PubMed Central  Google Scholar 

  3. Schwartz AJ, Riedel RF, LeBlanc TW, Desai D, Jenkins C, Mahoney E, Humphreys J, Hendrix CC (2019) The experiences of older caregivers of cancer patients following hospital discharge. Support Care Cancer 27(2):609–616

    Article  PubMed  Google Scholar 

  4. Pristavec T, Luth EA (2020) Informal caregiver burden, benefits, and older adult mortality: a survival analysis. J Gerontol B Psychol Sci Soc Sci 75(10):2193–2206

    Article  PubMed  PubMed Central  Google Scholar 

  5. Rha SY, Lee J (2017) Symptom clusters during palliative chemotherapy and their influence on functioning and quality of life. Support Care Cancer 25(5):1519–1527

    Article  PubMed  Google Scholar 

  6. Larkin M, Milne A (2017) What do we know about older former carers? Key issues and themes. Health Soc Care Community 25(4):1396–1403

    Article  PubMed  Google Scholar 

  7. Musich S, Wang SS, Kraemer S, Hawkins K, Wicker E (2017) Caregivers for older adults: prevalence, characteristics, and health care utilization and expenditures. Geriatr Nurs 38(1):9–16

    Article  PubMed  Google Scholar 

  8. Jones SL, Hadjistavropoulos HD, Janzen JA, Hadjistavropoulos T (2011) The relation of pain and caregiver burden in informal older adult caregivers. Pain Med 12(1):51–58

    Article  PubMed  Google Scholar 

  9. Phetsitong R, Vapattanawong P, Sunpuwan M, Völker M (2019) State of household need for caregivers and determinants of psychological burden among caregivers of older people in Thailand: an analysis from national surveys on older persons. PLoS One 14(12):e0226330

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Lynch SH, Shuster G, Lobo ML (2018) The family caregiver experience - examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes. Aging Ment Health 22(11):1424–1431

    Article  PubMed  Google Scholar 

  11. Kim Y, Baek W (2022) Caring experiences of family caregivers of patients with pancreatic cancer: an integrative literature review. Support Care Cancer 30(5):3691–3700

    Article  PubMed  Google Scholar 

  12. DuGoff EH, Canudas-Romo V, Buttorff C, Leff B, Anderson GF (2014) Multiple chronic conditions and life expectancy: a life table analysis. Med Care 52(8):688–694

    Article  PubMed  Google Scholar 

  13. Oldenkamp M, Hagedoorn M, Slaets J, Stolk R, Wittek R, Smidt N (2016) Subjective burden among spousal and adult-child informal caregivers of older adults: results from a longitudinal cohort study. BMC Geriatr 16(1):208

    Article  PubMed  PubMed Central  Google Scholar 

  14. Stolz-Baskett P, Taylor C, Glaus A, Ream E (2021) Supporting older adults with chemotherapy treatment: a mixed methods exploration of cancer caregivers’ experiences and outcomes. Eur J Oncol Nurs 50:101877

    Article  PubMed  Google Scholar 

  15. Van Hout E, Peters S, Jansen L, Rober P, van den Akker M (2020) An exploration of spousal caregivers’ well-being after the death of their partners who were older cancer patients - a phenomenological approach. Eur J Oncol Nurs 47:101779

    Article  PubMed  Google Scholar 

  16. Taylor J, Fradgley E, Clinton-McHarg T, Byrnes E, Paul C (2021) What are the sources of distress in a range of cancer caregivers? A qualitative study. Support Care Cancer 29(5):2443–2453

    Article  PubMed  Google Scholar 

  17. Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19(10):1013–1025

    Article  PubMed  Google Scholar 

  18. Knight BG, Sayegh P (2010) Cultural values and caregiving: the updated sociocultural stress and coping model. J Gerontol B Psychol Sci Soc Sci 65b(1):5–13

    Article  PubMed  Google Scholar 

  19. Miyawaki CE (2015) A review of ethnicity, culture, and acculturation among Asian caregivers of older adults (2000–2012). Sage Open 5(1). https://doi.org/10.1177/2158244014566365

  20. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA (2014) Standards for reporting qualitative research: a synthesis of recommendations. Acad Med 89(9):1245–1251

    Article  PubMed  Google Scholar 

  21. Guest G, Namey E, Chen M (2020) A simple method to assess and report thematic saturation in qualitative research. PLoS One 15(5):e0232076

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  22. Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24(2):105–112

    Article  CAS  PubMed  Google Scholar 

  23. Kyngäs HA, Mikkonen K, Kääriäinen M (2020) The application of content analysis in nursing science research. https://link.springer.com/book/10.1007/978-3-030-30199-6

  24. Polit DF, Beck CT (2008) Nursing research, generating and assessing evidence for nursing practice, 8th edn. Wolters Kluwer Health/Lippincott Williams & Wilkins, Philadelphia

  25. Celik E, Aslan MS, Sengul Samanci N, Karadag M, Saglam T, Cakan Celik Y, Demirci NS, Demirelli FH (2022) The relationship between symptom severity and caregiver burden in cancer patients under palliative care: a cross-sectional study. J Palliat Care 37(1):48–54

    Article  PubMed  Google Scholar 

  26. Ringborg CH, Schandl A, Wengström Y, Lagergren P (2022) Experiences of being a family caregiver to a patient treated for oesophageal cancer-1 year after surgery. Support Care Cancer 30(1):915–921

    Article  PubMed  Google Scholar 

  27. Potier F, Degryse JM, Aubouy G, Henrard S, Bihin B, Debacq-Chainiaux F, Martens H, de Saint-Hubert M (2018) Spousal caregiving is associated with an increased risk of frailty: a case-control study. J Frailty Aging 7(3):170–175

    CAS  PubMed  Google Scholar 

  28. Máximo RO, Lopes IC, Brigola AG, Luchesi BM, Gratão ACM, Inouye K, Pavarini SCI, Alexandre TDS (2020) Pre-frailty, frailty and associated factors in older caregivers of older adults. Rev Saude Publica 54:17

    Article  PubMed  PubMed Central  Google Scholar 

  29. Roth DL, Fredman L, Haley WE (2015) Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist 55(2):309–319

    Article  PubMed  PubMed Central  Google Scholar 

  30. Liu H, Lou VWQ (2019) Transitioning into spousal caregiving: contribution of caregiving intensity and caregivers’ multiple chronic conditions to functional health. Age Ageing 48(1):108–114

    Article  PubMed  Google Scholar 

  31. Thomas TH, Campbell GB, Lee YJ, Roberge MC, Kent EE, Steel JL, Posluszny DM, Arida JA, Belcher SM, Sherwood PR, Donovan HS (2021) Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop. Support Care Cancer 29(5):2423–2434

    Article  PubMed  Google Scholar 

  32. Slatyer S, Aoun SM, Hill KD, Walsh D, Whitty D, Toye C (2019) Caregivers’ experiences of a home support program after the hospital discharge of an older family member: a qualitative analysis. BMC Health Serv Res 19(1):220

    Article  PubMed  PubMed Central  Google Scholar 

  33. Goldzweig G, Schapira L, Baider L, Jacobs JM, Andritsch E, Rottenberg Y (2019) Who will care for the caregiver? Distress and depression among spousal caregivers of older patients undergoing treatment for cancer. Support Care Cancer 27(11):4221–4227

    Article  PubMed  Google Scholar 

  34. Hudson J, Ungar R, Albright L, Tkatch R, Schaeffer J, Wicker ER (2020) Older adult caregivers’ experiences in an online, interactive mindfulness intervention. J Evid Based Integr Med 25:2515690x20960659

  35. Xiu D, Fung YL, Lau BH, Wong DFK, Chan CHY, Ho RTH, So TH, Lam TC, Lee VH, Lee AWM, Chow SF, Lim FM, Tsang MW, Chan CLW, Chow AYM (2020) Comparing dyadic cognitive behavioral therapy (CBT) with dyadic integrative body-mind-spirit intervention (I-BMS) for Chinese family caregivers of lung cancer patients: a randomized controlled trial. Support Care Cancer 28(3):1523–1533

    Article  PubMed  Google Scholar 

  36. Chung BPM, Leung D, Leung SM, Loke AY (2018) Beyond death and dying: how Chinese spouses navigate the final days with their loved ones suffering from terminal cancer. Support Care Cancer 26(1):261–267

    Article  CAS  PubMed  Google Scholar 

  37. Aloweni F, Doshi K, Fook-Chong S, Malhotra R, Østbye T (2019) The types of caregiving reactions experienced by the older spouse caregivers. J Clin Nurs 28(23–24):4538–4548

    Article  PubMed  Google Scholar 

  38. Scherbring M (2002) Effect of caregiver perception of preparedness on burden in an oncology population. Oncol Nurs Forum 29(6):E70-76

    Article  PubMed  Google Scholar 

  39. Ugalde A, Krishnasamy M, Schofield P (2012) Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study. Support Care Cancer 20(6):1175–1181

    Article  PubMed  Google Scholar 

  40. Kim H, Thyer BA, Munn JC (2019) The relationship between perceived ageism and depressive symptoms in later life: understanding the mediating effects of self-perception of aging and purpose in life, using structural equation modeling. Educ Gerontol 45(2):105–119

    Article  Google Scholar 

  41. Lyons A, Alba B, Heywood W, Fileborn B, Minichiello V, Barrett C, Hinchliff S, Malta S, Dow B (2018) Experiences of ageism and the mental health of older adults. Aging Ment Health 22(11):1456–1464

    Article  PubMed  Google Scholar 

  42. Huang C, Lam L, Plummer V, Cross WM (2021) Feeling responsible: family caregivers’ attitudes and experiences of shared decision-making regarding people diagnosed with schizophrenia: a qualitative study. Patient Educ Couns 104(7):1553–1559

    Article  PubMed  Google Scholar 

  43. van Roij J, Brom L, Sommeijer D, van de Poll-Franse L, Raijmakers N (2021) Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study. Support Care Cancer 29(12):7975–7984

    Article  PubMed  PubMed Central  Google Scholar 

  44. Pethybridge R, Teleni L, Chan RJ (2020) How do family-caregivers of patients with advanced cancer provide symptom self-management support? A qualitative study. Eur J Oncol Nurs 48:101795

    Article  PubMed  Google Scholar 

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Acknowledgements

We are grateful to all the caregivers for participating in this study and for their time, and we are grateful to the staff of departments involved in palliative care who assisted with caregiver identification.

Author information

Authors and Affiliations

  1. Shandong Provincial Hospital Affiliated to Shandong First Medical University, No. 324, Jingwuweiqi Road, Jinan, Shandong, 250021, People’s Republic of China

    Min Xue, Haiyan Zhao, Yumei Zhao, Jing Li & Weijuan Chen

  2. Shandong Women’s University, 2399 Daxue Road, Jinan, Shandong, 250300, People’s Republic of China

    Xiaoyun Chen

Authors
  1. Min Xue
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  2. Xiaoyun Chen
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  3. Haiyan Zhao
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  4. Yumei Zhao
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  5. Jing Li
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  6. Weijuan Chen
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Min Xue, Xiaoyun Chen, Haiyan Zhao, Yumei Zhao and Jing Li. Jing Li recruited all the participants and Min Xue conducted the qualitative interviews. The first draft of the manuscript was written by Min Xue. Weijuan Chen supervised the overall project and critically revised the first manuscript for important content. All co-authors read and approved the final manuscript.

Corresponding author

Correspondence to Weijuan Chen.

Ethics declarations

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Shandong Provincial Hospital Affiliated to Shandong First Medical University, China (SWYX: NO.2021–497).

Consent to participate

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

Consent for publication

The authors affirm that human research participants provided informed consent for publication of the contents.

Conflict of interest

The authors declare no competing interests.

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Xue, M., Chen, X., Zhao, H. et al. Understanding the experiences of older caregivers of patients with lung cancer during palliative chemotherapy in China: a qualitative study. Support Care Cancer 30, 8011–8018 (2022). https://doi.org/10.1007/s00520-022-07247-4

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  • DOI: https://doi.org/10.1007/s00520-022-07247-4

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