Family cancer caregiving in urban Africa: interrogating the Kenyan model

Githaiga, Jennifer Nyawira

doi:10.1177/0081246315579323

Cited by 5 publications

(6 citation statements)

References 32 publications

(52 reference statements)

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“…Poor symptom management leads to functional decline, further loss of independence and greater reliance on social networks for material support. The financial burden of accumulating health care and basic needs cost as well as needing to take time away from work may significantly reduce the capacity of family members to offer long term informal care [ 34 ]. From bereavement interviews we found that some patients received little help from their families as their condition deteriorated and as they became increasingly dependent.…”

Section: Discussionmentioning

confidence: 99%

Multidimensional needs of patients living and dying with heart failure in Kenya: a serial interview study

2018

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BackgroundHeart failure is an emerging challenge for Sub Saharan Africa. However, research on patients’ needs and experiences of care is scarce with little evidence available to support and develop services. We aimed to explore the experiences of patients living and dying with heart failure in Kenya.MethodsWe purposively recruited 18 patients admitted with advanced heart failure at a rural district hospital in Kenya. We conducted serial in depth interviews with patients at 0, 3 and 6 months after recruitment, and conducted bereavement interviews with carers. Interviews were recorded, transcribed into English and analyzed using a thematic approach, assisted by Nvivo software package.ResultsForty-four interviews were conducted. Patients experienced physical, psychosocial, spiritual and financial distress. They also had unmet needs for information about their illness, how it would affect them and how they could get better. Patients experience of and their interpretation of symptoms influenced health care seeking. Patients with acute symptoms sought care earlier than those with more gradual symptoms which tended to be normalised as part of daily life or assumed to be linked to common treatable conditions. Nearly all patients expected to be cured and were frustrated by a progressive illness poorly responsive to treatment. Accumulating costs was a barrier to continuity of care and caused tensions in social relationships. Patients valued information on the nature of their illness, prognosis, self-care, lifestyle changes and prevention strategies, but this was rarely available.ConclusionsThis is the first in-depth study to explore the experiences of people living with advanced heart failure in Kenya. This study suggests that patients would benefit from holistic care, such as a palliative approach that is aimed at providing multidimensional symptom management. A palliative approach to services should be provided alongside chronic disease management aimed at primary prevention of risk factors, and early identification and initiation of disease modifying therapy. Further research is needed to determine best practice for integrating palliative care for people living and dying with heart failure.

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Section: Discussionmentioning

confidence: 99%

Multidimensional needs of patients living and dying with heart failure in Kenya: a serial interview study

2018

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“…Familial obligation was often framed around a cultural requirement, loyalty/setting as an example for younger family members, reciprocity/marital responsibility, and lacking any other choice [25,30,34,47]. Several studies cited cultural viewpoints of caregiving as a woman's role, although men undertake the role where a woman family member is not available [25,29,33,47,48].…”

Section: Plos Global Public Healthmentioning

confidence: 99%

“…Women, aged between 30-40 [7,[23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38], spouses, children, and siblings [7, 23-26, 28, 30-49] Who do they care for?…”

Section: Who Are Informal Carers?mentioning

confidence: 99%

“…Carers described having to minimise how much time they spent outside the house, time with friends, and which community events they can attend and romantic relationships [34,48]. Carers continuously balanced responsibilities such as parenting, being a spouse or taking care of parents with caring for the cancer patient [29,49]. Other roles, such as employment and education were commonly foregone, often with reluctance and fear of the known implications of losing these roles [29].…”

Section: Plos Global Public Healthmentioning

confidence: 99%

“…Carers continuously balanced responsibilities such as parenting, being a spouse or taking care of parents with caring for the cancer patient [29,49]. Other roles, such as employment and education were commonly foregone, often with reluctance and fear of the known implications of losing these roles [29].…”

Section: Plos Global Public Healthmentioning

confidence: 99%

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The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis

Gambe

Clark

Meddick-Dyson

et al. 2023

PLOS Glob Public Health

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There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers’ experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30–40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers’ experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner’s social ecological model which aided our development of a framework for understanding informal carers’ experiences’. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers’ allowance, should be incorporated as part of universal health coverage.

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The other untold burden of cancer in sub-Saharan Africa: Anxiety and depressive symptoms among family caregivers of adult cancer patients

Muliira

Kizza

2019

International Journal of Africa Nursing Sciences

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Family cancer caregiving in urban Africa: interrogating the Kenyan model

Cited by 5 publications

References 32 publications

Multidimensional needs of patients living and dying with heart failure in Kenya: a serial interview study

Multidimensional needs of patients living and dying with heart failure in Kenya: a serial interview study

The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis

The other untold burden of cancer in sub-Saharan Africa: Anxiety and depressive symptoms among family caregivers of adult cancer patients

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