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.

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