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Caregivers in home palliative care: gender, psychological aspects, and patient’s functional status as main predictors for their quality of life

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Abstract

Purpose

This study aims to investigate the impact of possible predictors of quality of life (QoL) in a group of Italian caregivers assisting a cancer patient in home palliative care.

Methods

Data from 570 adult informal caregivers and their cancer-affected relatives were collected. A multivariate regression analysis was conducted to assess the effect of three groups of variables on Caregivers Quality of Life Index-Cancer (CQOLC) scale: (a) socio-demographic characteristics of caregivers; (b) psychological characteristics of caregivers assessed by Profile Mood of States (POMS), Caregiver Burden Inventory (CBI), and Preparedness for Caregiving Scale (PCS); (c) Socio-demographic characteristics and functional status of the patients assessed by Karnofsky Performance Status (KPS), Activities of Daily Living (ADL), and Instrumental Activities of Daily Living (IADL).

Results

Regression analysis shows that some variables from each of these clusters are significantly associated with CQOLC, in particular: (a) the gender of the caregiver (st.β = .115, t = 2.765, p = .006) and the time spent for caregiving (st.β = − .165, t = − 3.960, p < .001); (b) the scores obtained by the caregivers in POMS,CBI (st.β = − .523, t = − 16.984, p < .001 and st.β = − .373, t = − 12.950, p < .001, respectively) and PCS (st.β = .092, t = 3.672, p < .001); (c) the gender (st.β = − .081, t = − 1.933, p = .045) and the IADL score (st.β = .195, t = 4.643, p < .001) of the patient.

Conclusions

A multidimensional evaluation is a key strategy to identify the most vulnerable caregivers. Apart from the condition of the patient, the gender of the caregivers, the time spent for caregiving and, above all, their psychological condition are strong predictors of caregivers’ QoL.

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References

  1. Vaupel JW (2010) Biodemography of human ageing. Nature 464:536–542. https://doi.org/10.1161/ATVBAHA.114.303112.ApoA-I

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  2. European Statistical Office (eurostat) (2016) First population estimates EU population up to slightly over 510 million at 1 January 2016 despite a first ever negative natural change. In: Eurostat Newsrelease http://ec.europa.eu/eurostat/documents/2995521/7553787/3-08072016-AP-EN.pdf/

    Google Scholar 

  3. Colombo F, Llena-Nozal A, Mercier J, Tiadens F (2011) Help wanted? Providing and paying need for long-term care. OECD Heal Policy Stud OECD Publ

  4. Hoffmann F, Rodrigues R (2010) Informal carers: who take care of them? Policy Br April 2010, Eur Cent Soc Welf Policy Res

  5. Istituto Nazionale di Statistica (ISTAT) (2017) Condizioni di salute e ricorso ai servizi sanitari in Italia e nell’Unione europea - Indagine Ehis 2015. https://www.istat.it/it/archivio/204655

  6. Rossi PG, Beccaro M, Miccinesi G et al (2007) Dying of cancer in Italy: impact on family and caregiver. The Italian survey of dying of cancer. J Epidemiol Community Health 61:547–554. https://doi.org/10.1136/jech.2005.045138

    Article  PubMed Central  Google Scholar 

  7. Burns CM, Abernethy AP, Dal Grande E, Currow DC (2013) Uncovering an invisible network of direct caregivers at the end of life: a population study. Palliat Med 27:608–615. https://doi.org/10.1177/0269216313483664

    Article  PubMed  Google Scholar 

  8. Given BA, Given CW, Sherwood PR (2012) Family and caregiver needs over the course of the cancer trajectory. J Support Oncol 10:57–64. https://doi.org/10.1016/j.suponc.2011.10.003

    Article  PubMed  Google Scholar 

  9. Kent EE, Rowland JH, Northouse L, Litzelman K, Chou WY, Shelburne N, Timura C, O'Mara A, Huss K (2016) Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer 122:1987–1995. https://doi.org/10.1002/cncr.29939

    Article  PubMed  PubMed Central  Google Scholar 

  10. Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manag 17:418–428

    Article  CAS  Google Scholar 

  11. Hodgkinson K, Butow P, Hobbs K, Wain G (2007) After cancer: the unmet supportive care needs of survivors and their partners. J Psychosoc Oncol 25:89–104. https://doi.org/10.1300/J077v25n04

    Article  PubMed  Google Scholar 

  12. Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors. Cancer 112:2556–2568. https://doi.org/10.1002/cncr.23449

    Article  PubMed  Google Scholar 

  13. Milberg A, Wahlberg R, Jakobsson M et al (2011) What is a “secure base” when death is approaching? A study applying attachment theory to adult patients’ and family members’ experiences of palliative home care. Psychooncology 21:886–895. https://doi.org/10.1002/pon.1982

    Article  PubMed  Google Scholar 

  14. Kitrungrote L, Cohen MZ (2006) Quality of life of family caregivers of patients with cancer: a literature review. Oncol Nurs Forum 33:625–632. https://doi.org/10.1188/06.ONF.625-632

    Article  Google Scholar 

  15. Lapid M, Atherton P, Kung S, Sloan JA, Shahi V, Clark MM, Rummans TA (2015) Cancer caregiver quality of life: need for targeted intervention. Psychooncology 25:1400–1407. https://doi.org/10.1002/pon.3960

    Article  PubMed  Google Scholar 

  16. Kehoe LA, Xu H, Duberstein P, Loh KP, Culakova E, Canin B, Hurria A, Dale W, Wells M, Gilmore N, Kleckner AS, Lund J, Kamen C, Flannery M, Hoerger M, Hopkins JO, Liu JJ, Geer J, Epstein R, Mohile SG (2019) Quality of life of caregivers of older patients with advanced cancer. J Am Geriatr Soc 67:969–977. https://doi.org/10.1111/jgs.15862

    Article  PubMed  Google Scholar 

  17. Weitzner MA, Jacobsen PB, Wagner H Jr et al (1999) The Caregiver Quality of Life Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 8:55–63. https://doi.org/10.1023/a:1026407010614

    Article  CAS  PubMed  Google Scholar 

  18. Nyenhuis DL, Yamamoto C, Lucheta T et al (1999) Adult and geriatric normative data and validation of the profile of mood states. J Clin Psychol 55:79–86. https://doi.org/10.1002/(SICI)1097-4679(199901)55:1<79::AID-JCLP8>3.0.CO;2-7

    Article  CAS  PubMed  Google Scholar 

  19. Novak M, Guest C (1989) Application of a multidimensional caregiver burden inventory. Gerontologist 29:798–803

    Article  CAS  Google Scholar 

  20. Henriksson A, Andershed B, Benzein E, Årestedt K (2012) Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness. Palliat Med 26:930–938. https://doi.org/10.1177/0269216311419987

    Article  PubMed  Google Scholar 

  21. Wade D, Collin C (1988) The Barthel ADL Index: a standard measure of physical disability? Int Disabil Stud 10:64–67

    Article  CAS  Google Scholar 

  22. Lawton M, Brody EM (1969) Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist 9:179–186

    Article  CAS  Google Scholar 

  23. Schag CC, Heinrich RL, Ganz PA (1984) Karnofsky performance status revisited: reliability, validity, and guidelines. J Clin Oncol 2:187–193. https://doi.org/10.1200/JCO.1984.2.3.187

    Article  CAS  PubMed  Google Scholar 

  24. Lutzky S, Knight B (1994) Explaining gender differences in caregiver distress: the roles of emotional attentiveness and coping styles. Psychol Aging 9:513–519

    Article  CAS  Google Scholar 

  25. Kim Y, Baker F, Spillers RL (2007) Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manag 34:294–304. https://doi.org/10.1016/j.jpainsymman.2006.11.012

    Article  Google Scholar 

  26. Garlo K, O’Leary JR, Van Ness PH, Fried TR (2010) Burden in caregivers of older adults with advanced illness. J Am Geriatr Soc 58:2315–2322. https://doi.org/10.1111/j.1532-5415.2010.03177.x

    Article  PubMed  PubMed Central  Google Scholar 

  27. Schrank B, Ebert-Vogel A, Amering M et al (2015) Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients. Psychooncology 25:808–814. https://doi.org/10.1002/pon.4005

    Article  PubMed  Google Scholar 

  28. Navaie-Waliser M, Spriggs A, Feldman PH (2002) Informal caregiving: differential experiences by gender. Med Care 40:1249–1259. https://doi.org/10.1097/01.MLR.0000036408.76220.1F

    Article  PubMed  Google Scholar 

  29. Hagedoorn M, Sanderman R, Ranchor AV, Brilman EI, Kempen GI, Ormel J (2001) Chronic disease in elderly couples: are women more responsive to their spouses’ health condition than men? J Psychosom Res 51:693–696. https://doi.org/10.1016/S0022-3999(01)00279-3

    Article  CAS  PubMed  Google Scholar 

  30. Brazil K, Thabane L, Foster G, Bédard M (2009) Gender differences among Canadian spousal caregivers at the end of life. Heal Soc Care Community 17:159–166. https://doi.org/10.1111/j.1365-2524.2008.00813.x

    Article  Google Scholar 

  31. Baanders AN, Heijmans MJWM (2007) The impact of chronic diseases. The partner ’s perspective. Fam Community Health 30:305–317

    Article  Google Scholar 

  32. Ge L, Mordiffi SZ (2017) Factors associated with higher caregiver burden among family caregivers of elderly cancer patients: a systematic review. Cancer Nurs 40:471–478. https://doi.org/10.1097/NCC.0000000000000445

    Article  PubMed  Google Scholar 

  33. Iconomou G, Viha A, Kalofonos HP, Kardamakis D (2001) Impact of cancer on primary caregivers of patients receiving radiation therapy. Acta Oncol (Madr) 40:766–771. https://doi.org/10.1080/02841860152619205

    Article  CAS  Google Scholar 

  34. Schumacher K, Stewart B, Archbold P (2007) Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nurs Res 56:425–433

    Article  Google Scholar 

  35. Hughes SL, Giobbie-Hurder A, Weaver FM, Kubal JD, Henderson W (1999) Relationship between caregiver burden and health-related quality of life. Gerontologist 39:534–545. https://doi.org/10.1093/geront/39.5.534

    Article  CAS  PubMed  Google Scholar 

  36. Grov EK, Valeberg BT (2012) Does the cancer patient’s disease stage matter? A comparative study of caregivers’ mental health and health related quality of life. Palliat Support Care 10:189–196. https://doi.org/10.1017/S1478951511000873

    Article  PubMed  Google Scholar 

  37. Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver quality of life. J Pain Symptom Manag 17:418–428. https://doi.org/10.1016/s0885-3924(99)00014-7

    Article  CAS  Google Scholar 

  38. Given B (2015) Cargiver Burden. In: Holland J, Weisel T, Nelson C et al (eds) Geriatric psycho-oncology: a quick reference on the psychosocial dimensions of cancer symptom management. Oxford University Press, New York, pp 131–140

    Google Scholar 

  39. Spector WD, Katz S, Murphy JB, Fulton JP (1987) The hierarchical relationship between activities of daily living and instrumental activities of daily living. J Chronic Dis 40:481–489. https://doi.org/10.1016/0021-9681(87)90004-X

    Article  CAS  PubMed  Google Scholar 

  40. Thomas VS, Rockwood K, McDowell I (1998) Multidimensionality in instrumental and basic activities of daily living. J Clin Epidemiol 51:315–321

    Article  CAS  Google Scholar 

  41. Ng T, Niti M, Chiam P, Kua E (2006) Physical and cognitive domains of the instrumental activities of daily living: validation in a multiethnic population of Asian older adults. J Gerontol 61A:726–735

    Article  Google Scholar 

  42. Marriott A, Donaldson C, Tarrier N, Burns A (2000) Effectiveness of cognitive–behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer’s disease. Br J Psychiatry 176:557–562. https://doi.org/10.1192/bjp.176.6.557

    Article  CAS  PubMed  Google Scholar 

  43. George C (2016) Valuing the caregiver: an acceptance and commitment therapy group intervention for dementia carers. In: British Psychological Society Annual Conference, Nottingham

  44. Li R, Cooper C, Bradley J, Shulman A, Livingston G (2012) Coping strategies and psychological morbidity in family carers of people with dementia: a systematic review and meta-analysis. J Affect Disord 139:1–11. https://doi.org/10.1016/j.jad.2011.05.055

    Article  PubMed  Google Scholar 

  45. Yalom I, Leszcz M (2005) The theory and practice of group psychotherapy. Basic Books, New York

    Google Scholar 

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Authors and Affiliations

  1. ANT Italia Foundation, via Jacopo di Paolo, 36, Bologna, Italy

    L. Franchini, G. Ercolani, R. Ostan, M. Raccichini, A. Samolsky-Dekel, M.B. Malerba, A. Melis, S. Varani & R. Pannuti

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  1. L. Franchini
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  2. G. Ercolani
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  3. R. Ostan
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  4. M. Raccichini
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Correspondence to L. Franchini.

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The trial was carried out in full accordance with the Declaration of Helsinki and the Good Clinical Practice. The investigation was approved by the Ethical Committee of the Central Area of Emilia Romagna (AVEC; CE 17001) where the ANT Research Coordination Office is located. Participants provided the informed written consent for participation to the investigation, data analysis, and publication.

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Franchini, L., Ercolani, G., Ostan, R. et al. Caregivers in home palliative care: gender, psychological aspects, and patient’s functional status as main predictors for their quality of life. Support Care Cancer 28, 3227–3235 (2020). https://doi.org/10.1007/s00520-019-05155-8

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  • DOI: https://doi.org/10.1007/s00520-019-05155-8

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