Reflecting upon her panel at the “Old Age Care in Times of Crisis” Conference earlier this year, Sayendri Panchadhyayi shares her ongoing research on old age care, caregiving and Covid-19 in India.
At the beginning of April 2021, I presented a paper at the conference, Old Age Care in Times of Crisis: Past and Present, organised by Birkbeck and the London School of Hygiene and Tropical Medicine, University of London. During my panel, Caring in Crisis, myself, my co-panellists and the panel’s chair, Dr. Penny Vera-Sanso (who has conducted empirical studies on the ageing process in India and illuminated the importance of demographic characteristics and their impact on the experiences of older adults) discussed the crisis in care that confronts both older adults and their network of caregivers. These discussions have inspired my own reflections on the pros and cons of state involvement in identifying the exigencies of care crisis for older adults in home-care settings.
According to the World Health Organization, most developed countries have struggled to provide long-term care services that can cope with the growing health needs and demands for assistive care that has emerged following the Covid-19 pandemic (World Health Organization, 2020). The response of the Government of India underscores the collapse of the public healthcare system, infrastructural incompetence and interstate differences in addressing this healthcare crisis: all of which has also led to the disruption of non-Covid services (Ghosh and Qadeer, 2020). With older adults being identified as a higher risk group in the first wave of Covid-19, the pandemic heavily impacted older adults already living with various ailments or afflictions.
My PhD research is seeking to understand the caring patterns and caring negotiations meted out to older adults in home-care settings by paid caregivers. The onset of the pandemic raised concern over the mounting crisis of care for the older adults, as lockdowns and transmission of the disease through nosocomial contact led to household isolation and prevention of the entry of paid carers to the home front. For older adults especially, being highly-dependent patients, this gap in care often saw care responsibilities transfer to the family caregiver. The study involved 34 participants, 17 of which were older adults between the age of 55 and 85, and the rest were corresponding primary caregivers of older adults. Given the context, conducting qualitative research and face-to-face interviews has been challenging. As the study was conducted during the first-wave of Covid-19 pandemic in India when the country was going through a lockdown, the interviews took place over the phone with a semi-structured questionnaire consisting of open-ended questions.
Closely linked to their own medical histories, each participant’s narrative speaks of a range of interconnected issues: of co-morbidities and multiple-morbidities, issues surrounding contagion, isolation and loneliness, the stigma of Covid-like symptoms, health emergency within the family, difficulty in arranging for medicines and indefinite delay in medical check-ups. Each issue adumbrates the nature of suffering for older patients with either chronic illness, acute illness or temporary illness, whilst also significantly impacting their primary caregivers.
Historically, it is the family that has been the primary site of caregiving in India, with female caregivers typically remaining the nameless, faceless and unrecognised army of caring labour. Studies show how it is the women of the family – namely, wives and adult daughters – that are the primary caregivers (Antonucci and Akiyama, 1987; Ridgeway, 2011 and Wong and Shobo, 2017), and that men who participate in caring activities are typically limited to specific events (Hudson et al, 2020). The field data that I have collected, however, suggests that male members did participate in care dissemination, due to a care deficit faced by their parents, spouses or siblings. When paid caregivers were unable to come to work during the first wave of the pandemic, sons or brothers often stepped in. One of my case studies, Mrs. Ghosh, had her son prepare the evening tea everyday to reduce the caring burden that emerged after she had to attend to her own ailing mother, and manage household labour.
Whatever the specifics of the care arrangements, the primary caregiver always has to endure the burden and stressors associated with caring (Palacios, Pérez1 and Webb, 2020). A complicated medical history of an older adult demands that primary caregivers have specialized knowledge in discerning those complexities and their repercussions. Considering that care arrangement is related to decisions about where the patient is to be taken in times of medical emergency, which doctors need to be contacted, medical expenditure and the diet of the patient, the person who makes these primary caring decisions occupies an ambivalent and dialectical position of power, as well as accountability during care discrepancy or care disruption.
When caregivers feel stressed, the dependent care recipient might be more readily transferred to institutional care (Jones and Salvage, 1991). They may choose to shift the older patient to institutional care with the aim of maintaining continuity in the delivery of care (Jones and Salvage, 1991). Additionally, family caregivers have to endure stress whilst dealing with their own illness or infirmity (especially if the family caregivers are elderly), negotiating expectations of being both a competent labourer at ‘work’ and an equally efficient care provider.
Older adults living in a two-generational or multi-generational family were found to have all other family members involved in their care. Although co-residential carers were the primary caregivers, non-co-residential carers would enquire about the health of the parents and monitor their activities. Mrs. Pakrashi’s son, who lives in a different state in India, booked an emergency flight and came to his mother to support her when his father was taken to hospital due to a sudden asthma attack. Although Mrs. Pakrashi was the primary caregiver of her husband, at the time of crisis the presence of her son illustrates intergenerational solidarity during crisis. This incident strengthens Sheng and Settle’s (2006) contention that it is interdependency, obligation and reciprocity that governs intergenerational exchange.
Spousal care forms a crucial component in the healing process over the life-course of an individual, and spouses continued to remain the primary caregivers during the pandemic. For the spouse, stressors associated with caregiving are immense and can disrupt the daily activities of individuals who are closest to the suffering older patient (Pinquart and Sörensen, 2011 and Wong and Shobo, 2017). Take the case of Mrs Roy, a primary caregiver suffering from hyperthyroid and hypertension who has to look after her 60-year old husband. She informed me that her closeness to her husband makes it difficult for her to perform intimate tasks, such as nursing the infected area of her husband’s anal fistula – as tending to the wounded area requires absolute equanimity.
In making decisions that will have significant bearing on the health of the older patients, spousal caregivers go through a labyrinth of complex emotions. The attachment between a spousal caregiver and the ailing spouse confronts him/her with the challenge of maintaining equanimity or ‘detached concern’ (Fox, 2000), while caring for the significant other and dealing with their own anxiety.
I discussed these issues and more in my paper at the Old Age Care conference back in April – you can watch my panel, alongside many others, here.
Sayendri Panchadhyayi is a Visiting International PhD Scholar at the Department of Sociological Studies, University of Sheffield and second year PhD student at the Department of Sociology, Presidency University, Kolkata, India. She can be reached on LinkedIn.
References
Antonucci, T. C., & Akiyama, H. (1987). Social networks in adult life and a preliminary examination of the convoy model. Journal of gerontology, 42(5), 519-527.
Bowlby, Sophia, McKie, Linda, Gregory, Susan, & MacPherson, Isobel. (2010). Interdependency and Care over the Lifecourse. Routledge: Abingdon.
Fox, R. C. (2000). Medical uncertainty revisited. Handbook of social studies in health and medicine, 409, 425.
Feeney, J. A., & Hohaus, L. (2001). Attachment and spousal caregiving. Personal Relationships, 8(1), 21-39.
Ghosh, S. M., & Qadeer, I. (2020). Public Good Perspective of Public Health. Economic & Political Weekly, 55(36), 41.
Hudson, N., Law, C., Culley, L., Mitchell, H., Denny, E., Norton, W., & Raine‐Fenning, N. (2020). Men, chronic illness and healthwork: accounts from male partners of women with endometriosis. Sociology of Health & Illness, 42(7), 1532-1547.
Jones, D. A., & Salvage, A. V. (1992). Attitudes to caring among a group of informal carers of elderly dependants. Archives of gerontology and geriatrics, 14(2), 155-165.
Kent, E. E., Ornstein, K. A., & Dionne-Odom, J. N. (2020). The family caregiving crisis meets an actual pandemic. Journal of pain and symptom management, 60(1), e66-e69.
Palacios, J., Pérez, P., & Webb, A. (2020). The experience of caring for an older relative in Chile: going beyond the burden of care. Ageing & Society, 1-20.
Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychology and aging, 26(1), 1.
Ridgeway, C. L. (2011). Framed by gender: How gender inequality persists in the modern world. Oxford University Press.
Sheng, Xuewen & Settles, H. Settles. (2006). “Intergenerational relationships and elderly care in China: A global perspective”. Current Sociology, 54(2), 293-313.
Sims-Gould, J., Martin-Matthews, A., & Rosenthal, C. J. (2010). Family caregiving and helping at the intersection of gender and kinship. In Aging and caring at the intersection of work and home life: Blurring the boundaries (p. 312). Taylor & Francis: New York.
Wong, D. Jen & Shobo, Yetunde. (2017). Types of family caregiving and daily experiences in midlife and late adulthood: the moderating influences of marital status and age. Research on Aging, 39(6), 719-740.
World Health Organization, 2020. Preventing and managing COVID-19 across long-term care services. World Health Organization (2020).
Very informative blog for those who are interested in gerontology!