The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents’ end of life (EOL), dying and death as well as their own advancing age.

Aim

This study aims to analyse the challenges of caregiving adult children regarding their parents’ end of life and the related burdens and barriers they report.

Material and Methods

Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach.

Results

The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent.

Discussion

The results indicate several potential burdens for centenarians’ caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents’ very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent’s death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients.

Limitations

The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented.

Conclusion

The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.

Conflict of interests

We have no conflict of interests to disclose.

References

1Teixeira L, Araújo L, Jopp D, Ribeiro O. Centenarians in Europe. Maturitas 2017; 104: 90–95.
10.1016/j.maturitas.2017.08.005
PubMed Web of Science® Google Scholar
2 Statistics Canada. Centenarians in Canada. Age and sex, 2011 Census. 2012. https://www12.statcan.gc.ca/census-recensement/2011/as-sa/98-311-x/98-311-x2011003_1-eng.pdf (last accessed 01 September 2019)
Google Scholar
3 U.S. Census Bureau. Centenarians 2010. 2010 Census Special Reports. https://www.census.gov/prod/cen2010/reports/c2010sr-03.pdf (last accessed 01 September 2019)
Google Scholar
4 National Institute of Population and Social Security Research. Population Statistics of Japan 2006. http://www.ipss.go.jp/p-info/e/PSJ2006.pdf (last accessed 01 September 2019)
Google Scholar
5Li Q, Zhang Z. Age trajectories of independence in daily living among the oldest old in China. Eur J Ageing 2018; 15: 393–406.
10.1007/s10433-018-0460-9
PubMed Web of Science® Google Scholar
6Christensen K, Doblhammer G, Rau R, Vaupel JW. Ageing populations: the challenges ahead. Lancet 2009; 374: 1196–208.
10.1016/S0140-6736(09)61460-4
PubMed Web of Science® Google Scholar
7Vestergaard S, Andersen-Ranberg K, Skytthe A, Christensen K, Robine JM, Jeune B. Health and function assessments in two adjacent Danish birth cohorts of centenarians: impact of design and methodology. Eur J Ageing 2016; 13: 15–23.
10.1007/s10433-015-0354-z
PubMed Web of Science® Google Scholar
8Cho J, Martin P, Poon LW. The older they are, the less successful they become? Findings from the Georgia Centenarian Study. J Aging Res 2012; 2012: 695854.
10.1155/2012/695854
PubMed Google Scholar
9Ailshire JA, Beltrán-Sánchez H, Crimmins EM. Becoming centenarians: disease and functioning trajectories of older U.S. adults as they survive to 100. J Gerontol A Biol Sci Med Sci 2015; 70: 193–201.
10.1093/gerona/glu124
PubMed Web of Science® Google Scholar
10Freeman S, Armstrong JJ, Tyas SL, Neufeld E. Clinical characteristics and patterns of health deficits of centenarians receiving home care and long-term care services. Exp Gerontol 2017; 99: 46–52.
10.1016/j.exger.2017.09.010
PubMed Web of Science® Google Scholar
11Boerner K, Jopp DS, Park MK, Rott C. Whom do centenarians rely on for support? Findings from the second heidelberg centenarian study. J Aging Soc Policy 2016; 28: 165–86.
10.1080/08959420.2016.1160708
PubMed Web of Science® Google Scholar
12Nolan M, Keady J, Grant G. Developing a typology of family care: implications for nurses and other service providers. J Adv Nurs 1995; 21: 256–65.
10.1111/j.1365-2648.1995.tb02522.x
CAS PubMed Web of Science® Google Scholar
13Nolan M, Lundh U. Satisfactions and coping strategies of family carers. Br J Community Nurs 1999; 4: 470–5.
10.12968/bjcn.1999.4.9.7452
Google Scholar
14Kuuppelomäki M, Sasaki A, Yamada K, Asakawa N, Shimanouchi S. Family carers for older relatives: sources of satisfaction and related factors in Finland. Int J Nurs Stud 2004; 41: 497–505.
10.1016/j.ijnurstu.2003.11.004
PubMed Web of Science® Google Scholar
15van Campen C, de Boer AH, Iedema J. Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work. Scand J Caring Sci. 2013; 27: 44–50.
10.1111/j.1471-6712.2012.00998.x
PubMed Web of Science® Google Scholar
16Bastawrous M. Caregiver burden–a critical discussion. Int J Nurs Stud 2013; 50: 431–41.
10.1016/j.ijnurstu.2012.10.005
PubMed Web of Science® Google Scholar
17Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 2003; 18: 250–67.
10.1037/0882-7974.18.2.250
PubMed Web of Science® Google Scholar
18Sanders GF, Pittman JF, Montgomery JE. Family caregivers of centenarians: Support for the very old. J Appl Gerontol 1986; 5: 113–25.
10.1177/073346488600500202
Google Scholar
19Freeman S, Kurosawa H, Ebihara S, Kohzuki M. Caregiving burden for the oldest old: a population based study of centenarian caregivers in Northern Japan. Arch Gerontol Geriatr 2010; 50: 282–91.
10.1016/j.archger.2009.04.008
PubMed Web of Science® Google Scholar
20Brandão D, Ribeiro O, Oliveira M, Paúl C. Caring for a centenarian parent: an exploratory study on role strains and psychological distress. Scand J Caring Sci 2017; 31: 984–94.
10.1111/scs.12423
PubMed Web of Science® Google Scholar
21Gellert P, von Berenberg P, Zahn T, Neuwirth J, Kuhlmey A, Dräger D. Multimorbidity profiles in German centenarians: a latent class analysis of health insurance data. J Aging Health 2017; 31: 580–94.
10.1177/0898264317737894
PubMed Web of Science® Google Scholar
22von Berenberg P, Dräger D, Zahn T, Neuwirth J, Kuhlmey A, Gellert P. Chronic conditions and use of health care service among German centenarians. Age Ageing 2017; 46: 939–45.
10.1093/ageing/afx008
PubMed Web of Science® Google Scholar
23Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005; 330: 1007–11.
10.1136/bmj.330.7498.1007
PubMed Web of Science® Google Scholar
24Clegg A, Young J, Iliffe S, Rikkert MO, Rockwood K. Frailty in elderly people. Lancet 2013; 381: 752–62.
10.1016/S0140-6736(12)62167-9
PubMed Web of Science® Google Scholar
25Bandeen-Roche K, Seplaki CL, Huang J, Buta B, Kalyani RR, Varadhan R, Xue QL, Walston JD, Kasper JD. Frailty in older adults: a nationally representative profile in the United States. J Gerontol A Biol Sci Med Sci 2015; 70: 1427–34.
10.1093/gerona/glv133
PubMed Web of Science® Google Scholar
26Hall S, Petkova H, Tsouros AD, Costantini M, Higginson IJ. Palliative care for older people: better practices. WHO Copenhagen 2011. http://www.euro.who.int/__data/assets/pdf_file/0017/143153/e95052.pdf (last accessed 01 September 2019).
Google Scholar
27Van den Block L, Smets T, van Dop N, Adang E, Andreasen P, Collingridge Moore D, Engels Y, Finne-Soveri H, Froggatt K, Gambassi G, Kijowska V, Onwuteaka-Philipsen B, Pasman HR, Payne S, Piers R, Szczerbińska K, Ten Koppel M, Van Den Noortgate N, van der Steen JT, Vernooij-Dassen M, Deliens L. Comparing Palliative Care in Care Homes Across Europe (PACE): protocol of a cross-sectional study of deceased residents in 6 EU countries. J Am Med Dir Assoc 2016; 17(566): e1–7.
PubMed Web of Science® Google Scholar
28Thompson GN, Roger K. Understanding the needs of family caregivers of older adults dying with dementia. Palliat Support Care 2014; 12: 223–31.
10.1017/S1478951513000461
PubMed Web of Science® Google Scholar
29Lloyd-Williams M, Kennedy V, Sixsmith A. The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying. J Pain Symptom Manage 2007; 34: 60–66.
10.1016/j.jpainsymman.2006.09.028
PubMed Web of Science® Google Scholar
30Fleming J, Farquhar M, Brayne C, Barclay S. Death and the oldest old: attitudes and preferences for end-of-life care-qualitative research within a population-based cohort study. PLoS One 2016; 11: e0150686.
10.1371/journal.pone.0150686
PubMed Web of Science® Google Scholar
31Kale MS, Ornstein KA, Smith CB, Kelley AS. End-of-life discussions with older adults. J Am Geriatr Soc 2016; 64: 1962–67.
10.1111/jgs.14285
PubMed Web of Science® Google Scholar
32Funk L, Stajduhar K, Toye C, Aoun S, Grande G, Todd C. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliat Med 2010; 24: 594–607.
10.1177/0269216310371411
CAS PubMed Web of Science® Google Scholar
33Milligan C, Turner M, Blake S, Brearley S, Seamark D, Thomas C, Wang X, Payne S. Unpacking the impact of older adults' home death on family care-givers' experiences of home. Health Place 2016; 38: 103–11.
10.1016/j.healthplace.2016.01.005
PubMed Web of Science® Google Scholar
34Soto-Rubio A, Pérez-Marín M, Barreto P. Frail elderly with and without cognitive impairment at the end of life: their emotional state and the wellbeing of their family caregivers. Arch Gerontol Geriatr 2017; 73: 113–19.
10.1016/j.archger.2017.07.024
PubMed Web of Science® Google Scholar
35Gysels M, Shipman C, Higginson IJ. Is the qualitative research interview an acceptable medium for research with palliative care patients and carers? BMC Med Ethics 2008; 9: 7.
10.1186/1472-6939-9-7
PubMed Google Scholar
36Kuckartz U. Qualitative Inhaltsanalyse. Methoden, Praxis, Computerunterstützung [Qualitative Content Analysis. Methods, Practice, Software-Use]. 2017, Beltz Juventa, Weinheim, Germany.
Google Scholar
37Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15: 1277–88.
10.1177/1049732305276687
PubMed Web of Science® Google Scholar
38Eggert S, Kuhlmey A, Suhr R, Dräger D. Centenarians preparing for the end of life? Z Gerontol Geriatr 2018; 51: 418–24.
10.1007/s00391-017-1187-5
PubMed Web of Science® Google Scholar
39Hall S, Longhurst S, Higginson I. Living and dying with dignity: a qualitative study of the views of older people in nursing homes. Age Ageing 2009; 38: 411–6.
10.1093/ageing/afp069
PubMed Web of Science® Google Scholar
40Guo Q, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat Med 2014; 2014(28): 931–40.
10.1177/0269216314528399
Web of Science® Google Scholar
41Keeley MP. Family communication at the end of life. Behav Sci (Basel) 2017; 7: 45.
10.3390/bs7030045
Web of Science® Google Scholar
42South AL, Elton J. Contradictions and promise for end-of-life communication among family and friends: death over dinner conversations. Behav Sci (Basel) 2017; 7: 24.
10.3390/bs7020024
Web of Science® Google Scholar
43Salander P, Spetz A. How do patients and spouses deal with the serious facts of malignant glioma? Palliat Med 2002; 16: 305–13.
10.1191/0269216302pm569oa
PubMed Web of Science® Google Scholar
44Zhang AY, Siminoff LA. Silence and cancer: why do families and patients fail to communicate? Health Commun 2003; 15: 415–29.
10.1207/S15327027HC1504_03
PubMed Web of Science® Google Scholar
45Boerner K, Kim K, Kim Y, Rott C, Jopp D. Centenarians' end-of-life thoughts and plans: is their social network on the same page? J Am Geriatr Soc 2018; 66: 1311–7.
10.1111/jgs.15398
PubMed Web of Science® Google Scholar
46Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000–25.
10.1177/0269216314526272
PubMed Web of Science® Google Scholar
47Kramer BJ, Boelk AZ, Auer C. Family conflict at the end of life: lessons learned in a model program for vulnerable older adults. J Palliat Med 2006; 9: 791–801.
10.1089/jpm.2006.9.791
PubMed Web of Science® Google Scholar
48Wackerbarth SB, Tarasenko YN. Does vigilance in decision-making matter for dementia family caregivers? Aging Ment Health 2018; 22: 692–99.
10.1080/13607863.2017.1292206
PubMed Web of Science® Google Scholar
49Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990; 30: 583–94.
10.1093/geront/30.5.583
CAS PubMed Web of Science® Google Scholar

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Volume35, Issue4

December 2021

Pages 1086-1095

Caregiving adult children’s perceptions of challenges relating to the end of life of their centenarian parents

Abstract

Background

Aim

Material and Methods

Results

Discussion

Limitations

Conclusion

Conflict of interests

References

Citing Literature

References

Information

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Caregiving adult children’s perceptions of challenges relating to the end of life of their centenarian parents

Abstract

Background

Aim

Material and Methods

Results

Discussion

Limitations

Conclusion

Conflict of interests

References

Citing Literature

References

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