Realities of family LTC provision and receipt: discourse and evidence Isabella Aboderin, PhD

Outline The discourse Evidence − arrangements and motives − availability and adequacy − impacts Implications for LTC agendas?

The discourse

‘Traditionally’ elders in Africa were well cared for by their families… …but family care systems are weakening due to ‘modernization’, urbanization (and HIV/AIDS)

”… As Africans…we had our own ways of doing things ”… As Africans…we had our own ways of doing things.. There were no… old age homes… Western culture has brought about the end of the extended family as an institution, leading to the need for government to establish… mechanisms to support the vulnerable” (President Zuma, paraphrased statement, 2011)

Decline driven by: – decreasing co-residence between old and young – increased female labor force participation – shifting normative expectations

”… As Africans…we had our own ways of doing things ”… As Africans…we had our own ways of doing things.. There were no… old age homes… Western culture has brought about the end of the extended family as an institution, leading to the need for government to establish… mechanisms to support the vulnerable” (President Zuma, paraphrased statement, 2011)

In fact: no evidence on nature, extent, drivers of shifts in family care – remains query for empirical research Need to examine common assumptions, e.g. – Rising female labor force participation’ – Co-residence = care access

The evidence

Arrangements

LTC provided overwhelmingly by families (in accordance with customary African, Arab, and religious (Islamic) values and norms that stress family solidarity and respect for elders)

Predominance of female kin Criteria: proximity, ‘hierarchy’ – First spouses (wives) and adult children (daughters) (in law) –Then more extended relatives – Neighbours, friends

Substantial involvement of older adults themselves Involvement of young children

  Different spatial configurations: – Older adult’s own home (non)/co-resident carer – Older adult moves to home of relative to receive care Arrangements not static.. Co-residence with younger adult: no guarantee of care

Motives

Reciprocity Customary/religious norms of respect for elders

Availability

Large majority of adults who need LTC do receive family care But: unavailability of family carer for substantial share of older people in urban and rural settings (≈20% in South West Nigeria) (Gureje et al., 2006).

Indications of marked, widespread inadequacies in the care that is being provided by family (In)‘adequacy’ – not clearly defined…but manifestations on several levels

Apparent widespread ‘neglect’ of older persons’ personal care, hygiene needs. ≈ 36% Northern Nigeria (Yussuf and Baiyewu, 2014)

Insufficiencies frequency of assistance with ADL when needed. e.g. 84% of older care recipients in slums, Nairobi (APHRC, preliminary data).

Occurrence of physical, emotional abuse, witchcraft accusations – specifically against older adults with mental/ degenerative conditions

Lack of caregiving skills/ knowledge among family carers – esp Lack of caregiving skills/ knowledge among family carers – esp. on health and medical care needs  limited ability to provide care that supports mental and physical function and autonomy E.g. longitudinal data in Burkina Faso shows rapid decline, mortality of older adults with moderate or severe disability cared for by families (Berthe et al. 2013).

Perceived inadequacy of care by caregivers and care recipients E,g 54% of care recipients, 23% of carers in slums, Nairobi (APHRC preliminary data).

Neglect own work, education? obligation to offspring? Neglect care, support to older kin?

Impacts

Carers: – ‘opportunity costs’- education, economic activity and prospects; financial strain Care recipients: – sense of loss of dignity and autonomy, loneliness.

Substantial share of caregivers and recipients: – Emotional, physical stress, feelings of entrapment (notwithstanding positive experiences of care)

Caregivers and recipients: – express desire among for access to supportive, supplementary, substitutive formal services… …. in order to redress inadequacies and negative impacts on caregivers / recipients

Implications for LTC agendas?

In its current operation, family LTC – does not meet the imperatives of quality, integration, access equity, fair opportunities for care workers – is not conducive to broader development agendas of expanding education, economic activity for youth

Express need among family caregivers and recipients for access to formal services — should be embraced as an emergent care preference

Recognise that there is need to expand provision of formal LTC service provision to support, supplement, substitute for family care

Need for focused, critical debate: – what should the relative role of family (vs. formal) LTC provision be in Africa?

Distinguish role of families in: carrying the responsibility for ensuring (good) LTC practically providing care providing the space in which care is provided Carefully examine ‘African’ cultural values and norms: – What do they actually oblige families to do? What are the ‘terms’ of this obligation, what are the limits?