Positive Experience of Parkinson’s Disease Family Caregivers and why is this Significant in COVID Times?

Martyarini Budi Setyawati; John  Parson; Bobbi Brennan Laing; Cecilia Wong-Cornall; Christantie Effendy

doi:10.3889/oamjms.2023.10678

Authors

Martyarini Budi Setyawati Undergraduate Nursing Programme, Faculty of Health Sciences, Harapan Bangsa University, Purwokerto, Central Java, Indonesia; School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand https://orcid.org/0000-0001-6919-0218
John Parson School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand; Physiotherapy Programme Lead, Department of Exercise Sciences, Faculty of Science, University of Auckland, Auckland, New Zealand
Bobbi Brennan Laing School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand; 3Physiotherapy Programme Lead, Department of Exercise Sciences, Faculty of Science, University of Auckland, Auckland, New Zealand; 4Adjunct Research Fellow, Menzies Health Institute Queensland, Southport, Australia https://orcid.org/0000-0003-3064-1717
Cecilia Wong-Cornall School of Population Health, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand
Christantie Effendy School of Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia https://orcid.org/0000-0002-8823-229X

DOI:

https://doi.org/10.3889/oamjms.2023.10678

Keywords:

Parkinson’s Disease, Caregiver, lived experience, Long-term care, Covid-19

Abstract

BACKGROUND: The importance of quality informal care and support for those with long-term conditions such as Parkinson’s disease is vital particularly during the COVID pandemic. Enhancing the positive aspects of caring is invaluable to support caregivers morale and in managing health system costs.

AIM: This narrative review explores the literature related to positive experiences perceived by the family caregiver of a person with Parkinson’s Disease in the home setting.

METHOD: Studies were selected from seven electronic databases Studies were selected from seven electronic databases using the systematic search strategy and appropriate search terms. Joanna Briggs Institute critical appraisal tools were used to assess the quality of the studies.

RESULTS: From 2049 studies identified, 18 studies were found. Five themes emerged: personal benefits and accomplishments, the quality of caregivers’ dyadic relationship, the gratitude experienced, increased family cohesion, and the deepening of caregivers’ spiritual experience.

CONCLUSION: These findings will enable development of more appropriate plans and support from health-care systems to enhance the positive experiences of voluntary home caregivers and reduce overall costs.

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Author Biographies

John Parson , School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand; Physiotherapy Programme Lead, Department of Exercise Sciences, Faculty of Science, University of Auckland, Auckland, New Zealand

Associate Professor John Parsons, PhD has more than 10 years of research experience and has acquired millions of grands. He has contributed to service development models across New Zealand, UK and Australia and also have active research links with UK, US, Canada, Japan, Korea and India and have been successful in obtaining funding for research across these groups. His expertise is Goal facilitation, Rehabilitation, Health services for older people, Falls, Exercise and physical activity for older people.

Bobbi Brennan Laing , School of Nursing, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand; 3Physiotherapy Programme Lead, Department of Exercise Sciences, Faculty of Science, University of Auckland, Auckland, New Zealand; 4Adjunct Research Fellow, Menzies Health Institute Queensland, Southport, Australia

DR. Bobbi Laing is a researcher which focus on improving health outcomes for people with non-communicable diseases. She has practiced extensively as a registered nurse and registered nutritionist in a variety of rural and urban health settings with innovative people and teams. These settings include public health nursing, nursing in general practice, community support groups, and leadership roles in health promotion in a Primary Health Organisation and at District Health Board level. With 15 publications in reputable journals prove her work in in the development of science and research.

Cecilia Wong-Cornall, School of Population Health, Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand

Cecilia Wong-Cornall, PhD is an early career academic with research experience in population health and health services. She has previously worked in two research centres at the School of Population Health, University of Auckland; Centre for Health Services Research and Policy (2009-2012) and Centre for Asian and Ethnic Minority Health Research (2012-2016). Cecilia contributed towards a diverse portfolio of local, regional and national research projects, and developed mixed-methods and qualitative research skills around programme evaluation and in-depth investigations into health service users' experiences, particularly those from immigrant and socioculturally diverse backgrounds. She also served as an advisory group member for Young Carers New Zealand (2015-2016).

Christantie Effendy, School of Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia

Dr. Christantie Effendy has expertise in palliative care, quality of life, dementia and elderly, quality indicators, cancer care, family caregivers, mixed methods, qualitative study. Her interest are Palliative care, End of Life care, Cancer care, Patient-Centered care, Quality of life, Quality of care, Quality indicators, Wound care management, Long-term care, Family caregivers, Dementia care. Currently she had been published about 20 articles in International journal and about 4 articles in National Journal. As CEO of the independent NGO, Lotus Care, she helps a lot of cancer survivors and elderly caregivers.

References

Association EPsD. What is Parkinson’s? 2018. Parkinson’s Affects People of all Races and Cultures. Around 10 Million People have the Condition Worldwide-that’s Less than one Percent of the Total Population. Most People who get Parkinson’s are Over 60, but one in ten are Under 50. Slightly more men than Women are Affected. Available from: https://www.epda.eu.com/about-parkinsons/what-is-parkinsons [Last accessed on 2020 Nov 25].

Chaudhuri KR, Martinez-Martin P. Quantitation of non-motor symptomsinParkinson’sdisease.EurJNeurol.2008;15Suppl2:2-7. https://doi.org/10.1111/j.1468-1331.2008.02212.x PMid:18702736

Jankovic J. Parkinson’s disease: Clinical features and diagnosis. J Neurol Neurosurg Psychiatry. 2008;79(4):368-76.

Abendroth M, Lutz BJ, Young ME. Family caregivers’ decision process to institutionalize persons with Parkinson’s disease: A grounded theory study. Int J Nurs Stud. 2012;49(4):445-54. https://doi.org/10.1016/j.ijnurstu.2011.10.003 PMid:22036578

Carrilho PE, Rodrigues MA, de Oliveira BC, de Silva EB, Silva TA,

da Silva Schran L, et al. Profile of caregivers of Parkinson’s disease patients and burden measured by Zarit Scale Analysis of potential burden-generating factors and their correlation with disease severity. Dement Neuropsychol. 2018;12(3):299-305. https://doi.org/10.1590/1980-57642018dn12-030011 PMid:30425794

Bhimani R. Understanding the burden on caregivers of people with Parkinson’s: A scoping review of the literature. Rehabil Res Pract. 2014;2014:718527. https://doi.org/10.1155/2014/718527 PMid:25298895

Padovani C, de Lima Lopes MC, Higahashi IH, Pelloso SM, Paiano M, Christophoro R. Being caregiver of people with Parkinson’s Disease: Experienced situations. Rev Bras Enferm. 2018;71(Suppl 6):2628-34. https://doi.org/10.1590/0034-7167-2017-0008 PMid:30540037

Hiseman JP, Fackrell R. Caregiver burden and the nonmotor symptoms of Parkinson’s disease. Int Rev Neurobiol. 2017;133:479-97. https://doi.org/10.1016/bs.irn.2017.05.035 PMid:28802929

Santos‐García D, Fuente‐Fernández R. Factors contributing to caregivers’ stress and burden in Parkinson’s disease. Acta Neurol Scand. 2015;131(4):203-10. https://doi.org/10.1111/ane.12305 PMid:25212106

Van Dorn A, Cooney RE, Sabin ML. COVID-19 exacerbating inequalities in the US. Lancet. 2020;395(10232):1243-4. https:// doi.org/10.1016/S0140-6736(20)30893-X PMid:32305087

Oppo V, Serra G, Fenu G, Murgia D, Ricciardi L, Melis M, et al. Parkinson’s disease symptoms have a distinct impact on caregivers’ and patients’ stress: A study assessing the consequences of the COVID‐19 Lockdown. Mov Disord Clin Pract. 2020;7(7):865-7. https://doi.org/10.1002/mdc3.13030 PMid:33043088

Mosley PE, Moodie R, Dissanayaka N. Caregiver burden in Parkinson disease: A critical review of recent literature. J Geriatr Psychiatry Neurol. 2017;30(5):235-52. https://doi.org/10.1177/0891988717720302 PMid:28743212

Theed R, Eccles F, Simpson J. Experiences of caring for a family member with Parkinson’s disease: A meta-synthesis. Aging Ment Health. 2017;21(10):1007-16. https://doi.org/10.1080/13607863.2016.1247414 PMid:27802771

Dekawaty A, Malini H, Fernandes F. Family experiences as a caregiver for patients with Parkinson’s disease: A qualitative study. J Res Nurs. 2019;24(5):317-27. https://doi.org/10.1177/1744987118816361 PMid:34394542

Habermann B, Hines D, Davis L. Caring for parents with neurodegenerative disease: A qualitative description. Clin Nurse Spec. 2013;27(4):182-7. https://doi.org/10.1097/ NUR.0b013e318295576b PMid:23748990

Konstam V, Holmes W, Wilczenski F, Baliga S, Lester J, Priest R.

Meaning in the lives of caregivers of individuals with Parkinson’s disease. J Clin Psychol Med Settings. 2003;10(1):17-25. https://doi.org/10.1023/A:1022849628975

Mavandadi S, Dobkin R, Mamikonyan E, Sayers S, Ten Have T, Weintraub D. Benefit finding and relationship quality in Parkinson’s disease: A pilot dyadic analysis of husbands and wives. J Fam Psychol. 2014;28(5):728-34. https://doi.org/10.1037/a0037847 PMid:25180468

Ferrari R. Writing narrative style literature reviews. Med Writ. 2015;24(4):230-5. https://doi.org/10.1179/20474806 15Z.000000000329

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. https://doi.org/10.1136/bmj.n71 PMid:33782057

Institute JB. The Joanna Briggs Institute Critical Appraisal Tools for Use in JBI Systematic Reviews North Adelaide, Australia The Joanna Briggs Institute; 2017. p. 18. Available from: https:// www.jbi.global/critical-appraisal-tools [Last accessed on 2021 May 03].

Mays N, Pope C, Popay J. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. J Health Serv Res Policy. 2005;10 Suppl 1:6-20. https://doi.org/10.1258/1355819054308576 PMid:16053580

Karlstedt M, Fereshtehnejad SM, Aarsland D, Lökk J. Mediating effect of mutuality on caregiver burden in Parkinson’s disease partners. Aging Ment Health. 2019;24(9):1421-1428. https://doi.org/10.1080/13607863.2019.1619165 23. Karlstedt M, Fereshtehnejad SM, Aarsland D, Lökk J.

Determinants of dyadic relationship and its psychosocial impact in patients with Parkinson’s Disease and their spouses. Parkinsons Dis. 2017;2017:4697052. https://doi.org/10.1155/2017/4697052 PMid:28286689

Vatter S, Stanmore E, Clare L, McDonald KR, McCormick SA, Leroi I. Care burden and mental ill health in spouses of people with Parkinson disease dementia and lewy body dementia. J Geriatr Psychiatry Neurol. 2020;33(1):3-14. https://doi.org/10.1177/0891988719853043 PMid:31146617

Jones AJ, Kuijer RG, Livingston L, Myall D, Horne K, MacAskill M, et al. Caregiver burden is increased in Parkinson’s disease with mild cognitive impairment (PD-MCI). Transl Neurodegener. 2017;6:17. https://doi.org/10.1186/s40035-017-0085-5 PMid:28638598

Shim B, Landerman LR, Davis LL. Correlates of care relationship mutuality among carers of people with Alzheimer’s and Parkinson’s disease. J Adv Nurs. 2011;67(8):1729-38. https://doi.org/10.1111/j.1365-2648.2011.05618.x PMid:21457292

Carter JH, Lyons KS, Stewart BJ, Archbold PG, Scobee R. Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson’s disease. Mov Disord. 2010;25(6):724-30. https://doi.org/10.1002/mds.22888 PMid:20201024

Tan SB, Williams AF, Morris ME. Experiences of caregivers of people with Parkinson’s disease in Singapore: A qualitative analysis. J Clin Nurs. 2012;21(15‐16):2235-46. https://doi.org/10.1111/j.1365-2702.2012.04146.x PMid:22788558

Navarta-Sanchez MV, Garcia JM, Riverol M, Sesma ME, de Cerio Ayesa S, Bravo SA, et al. Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers. Qual Life Res. 2016;25(8):1959-68. https://doi.org/10.1007/s11136-015-1220-3 PMid:26742928

Carter JH, Stewart BJ, Archbold PG, Inoue I, Jaglin J, Lannon M, et al. Living with a person who has Parkinson’s disease: The spouse’s perspective by stage of disease. Parkinson’s study group. Mov Disord. 1998;13(1):20-8. https://doi.org/10.1002/mds.870130108 PMid:9452321

Chiong-Rivero H, Ryan GW, Flippen C, Bordelon Y, Szumski NR, Zesiewicz TA, et al. Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status. Patient Relat Outcome Meas. 2011;2:57. https://doi.org/10.2147/PROM. S15986 PMid:21691459

Roland KP, Jenkins ME, Johnson AM. An exploration of the burden experienced by spousal caregivers of individuals with Parkinson’s disease. Mov Disord. 2010;25(2):189-93. https://doi.org/10.1002/mds.22939 PMid:20063397

Habermann B. Spousal perspective of Parkinson’s disease in middle life. J Adv Nurs. 2000;31(6):1409-15. https://doi.org/10.1046/j.1365-2648.2000.01457.x PMid:10849153

Heine J, von Eichel H, Staege S, Höglinger GU, Wegner F, Klietz M. Relationship satisfaction in people with Parkinson’s disease and their caregivers: A cross-sectional observational study. Brain Sci. 2021;11(6):822. https://doi.org/10.3390/brainsci11060822 PMid:34205764

Champagne ER, Muise A. Responsiveness and relationship satisfaction in couples coping with Parkinson’s disease: A pilot study. Psychol Rep. 2021;125(2):804-21. https://doi. org/10.1177/0033294121998032

Antoni MH, Lehman JM, Kilbourn KM, Boyers AE, Culver JL, Alferi SM, et al. Cognitive-behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancer. Health Psychol. 2001;20(1):20-32. https://doi.org/10.1037/0278-6133.20.1.20 PMid:11199062

Sebern MD, Whitlatch CJ. Dyadic relationship scale: A measure of the impact of the provision and receipt of family care. Gerontologist. 2007;47(6):741-51. https://doi.org/10.1093/geront/47.6.741 PMid:18192628

Lea Steadman P, Tremont G, Davis JD. Premorbid relationship satisfaction and caregiver burden in dementia caregivers. J Geriatr Psychiatry Neurol. 2007;20(2):115-9. https://doi.org/10.1177/0891988706298624 PMid:17548782

Doris S, Cheng ST, Wang J. Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. Int J Nurs Stud. 2018;79:1-26. https://doi.org/10.1016/j.ijnurstu.2017.10.008 PMid:29128685

Goldsworthy B, Knowles S. Caregiving for Parkinson’s disease patients: An exploration of a stress-appraisal model for quality of life and burden. J Gerontol B Psychol Sci Soc Sci. 2008;63(6):P372-6. htpps://doi.org/10.1093/geronb/63.6.p372 PMid:19092040

Lee DR, McKeith I, Mosimann U, Ghosh-Nodyal A, Thomas AJ. Examining carer stress in dementia: The role of subtype diagnosis and neuropsychiatric symptoms. Int J Geriatr Psychiatry. 2013;28(2):135-41. https://doi.org/10.1002/gps.3799 PMid:22422615

Pan Y, Jones PS, Winslow BW. The relationship between mutuality, filial piety, and depression in family caregivers in China. J Transcult Nurs. 2016;28(5):455-63. https://doi.org/10.1177/1043659616657877 PMid:27413164

Gupta R. A path model of elder caregiver burden in Indian/Pakistani families in the United States. Int J Aging Hum Dev. 2000;51(4):295-313. https://doi.org/10.2190/J9XY-V3E0-NP1B-UNA5 PMid:11246650

Chafjiri RT, Navabi N, Shamsalinia A, Ghaffari F. The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. Clin Interv Aging. 2017;12:453-8. https://doi.org/10.2147/CIA.S121285 PMid:28280318

Folkman S, Moskowitz JT. Positive affect and the other side of coping. Am Psychol. 2000;55(6):647. https://doi.org/10.1037/0003-066X.55.6.647 PMid:10892207

Zysberg L, Zisberg A. Regarding the role of EI in candidate selection in nursing programs. A response to smith (2016) BSN programs admittance criteria. Nurs Forum. 2017;52(1):68-9.

Beach SR, Schulz R, Donovan H, Rosland AM. Family caregiving during the COVID-19 pandemic. Gerontologist. 2021;61(5):650-60. https://doi.org/10.1093/geront/gnab049 PMid:33847355

Dyck C. Who cares for the caregiver? Parkinsonism Relat Disord. 2009;15 Suppl 3:S118-21. https://doi.org/10.1016/ S1353-8020(09)70796-5 PMid:20082970

Boise L, Congleton L, Shannon K. Empowering family caregivers: The powerful tools for caregiving program. Educ Gerontol. 2005;31(7):573-86. https://doi.org/10.1080/03601270590962523 50. Findley LJ. The economic impact of Parkinson’s disease.

Parkinsonism Relat Disord. 2007;13:S8-S12. https://doi.org/10.1016/j.parkreldis.2007.06.003 PMid:17702630