When ‘chemo is failing’ … ‘the illness is indigenous’. Therapeutic pluralism and reclaiming agency: family cancer caregivers’ experiences in Nairobi

Githaiga, Jennifer Nyawira

doi:10.1080/17531055.2017.1315016

Cited by 4 publications

(11 citation statements)

References 47 publications

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“…Information needs were only explored and reported in about a third of the included studies. 2 , 16 , 31 – 38 , 42 – 45 , 47 , 48 , 50 – 55 , 58 – 60 , 63 , 64 , 66 , 68 , 71 – 78 , 80 – 87 , 89 – 104 …”

Section: Resultsmentioning

confidence: 99%

“…Information needs were considered important to separate as a theme under the psychological domain of need, as themes were coded showing the influence of cultural and spiritual schemas of illness causation 31 , 33 , 86 on the attitudes of participants to their signs and symptoms and healthcare-seeking. 33 , 47 , 53 This led to complications which increased intensity of need.…”

Section: Resultsmentioning

confidence: 99%

“…While some family members embraced the secrecy and lack of disclosure around the illness affecting their loved one, 56 , 63 , 75 , 76 others voiced their apprehension and anger about the silence of the healthcare professionals and the patient, the reluctance to talk about disease and prognosis and the lack of engagement in decision making regarding care. 76 , 80 , 86 They expressed their need to know the disease causation and disease course 34 , 86 and how to protect self from contacting communicable infection. 61 , 63 , 65 , 78 Studies also show that family caregivers voiced their anger at the lack of information from Healthcare professionals which make them appear foolish in their caring choices.…”

Section: Resultsmentioning

confidence: 99%

“…Studies reported the challenges patients and families face in paying already highly subsidised medical bills, 31 , 36 , 39 , 43 , 49 , 50 , 53 , 54 , 66 , 71 , 74 , 82 , 86 balancing cost of medication 31 , 37 , 38 , 44 , 49 , 54 , 77 with feeding while facing daily struggles with food insecurity. 32 , 40 , 41 , 45 , 48 , 49 , 53 , 55 , 61 , 76 , 77 , 87 The problem of access which is already widespread due to limited services is further compounded by the financial burden of securing transportation to appointments.…”

Section: Resultsmentioning

confidence: 99%

“…Inability to earn income or unemployment 31,32,36,41,51,66 Paying medical bills 31,36,39,43,49,50,53,54,66,71,74,82,86 Cost of medications 31,37,38,44,49,54,77 Securing transportation to appointments 32,40,44,48,49,53,66,68,87 Paying children's school fee 31,37,39,40,44,46,54,62,87 Selling Assets 37,66,82 Food insecurity and struggles 32,40,41,45,48,…”

Section: Financial Needsmentioning

confidence: 99%

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What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

et al. 2021

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Background: Clarity on what constitutes a palliative care need is essential to ensure that health systems and clinical services deliver an appropriate response within Universal Health Coverage. Aim: To synthesise primary evidence from Africa for palliative care needs among patients and families with serious illness. Design: We conducted a mixed methods systematic review with sequential synthesis design. The protocol was registered with PROSPERO (CRD42019136606) and included studies were quality assessed using Mixed Method Appraisal Tool. Data sources: Six global literature databases and Three Africa-specific databases were searched up to October 2020 for terms related to palliative care, serious illnesses and Africa. Palliative care need was defined as multidimensional problems, symptoms, distress and concerns which can benefit from palliative care. Results: Of 7810 papers screened, 159 papers met eligibility criteria. Palliative care needs were mostly described amongst patients with HIV/AIDS ( n = 99 studies) or cancer ( n = 59), from East ( n = 72) and Southern ( n = 89) Africa. Context-specific palliative care needs included managing pregnancy and breastfeeding, preventing infection transmission (physical); health literacy needs, worry about medical bills (psychological); isolation and stigma, overwhelmed families needing a break, struggling to pay children’s school fees and selling assets (social and practical needs); and rites associated with cultural and religious beliefs (spiritual). Conclusions: Palliative care assessment and care must reflect the context-driven specific needs of patients and families in Africa, in line with the novel framework. Health literacy is a crucial need in this context that must be met to ensure that the benefits of palliative care can be achieved at the patient-level.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Financial Needsmentioning

confidence: 99%

See 3 more Smart Citations

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

et al. 2021

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Sharing COMFORT Communication Training With Healthcare Professionals in Nairobi, Kenya: A Pilot Webinar Series

Wittenberg

Alabere

Beltran

et al. 2021

Am J Hosp Palliat Care

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Background: Communication training for healthcare providers is evident in the context of the COVID-19 global pandemic, however training opportunities are not available in countries with limited resources. Objectives: To investigate perceived comfort in communication about end-of-life and palliative care among healthcare providers in Nairobi, Kenya and to evaluate a pilot webinar-based communication training series. Methods: Through a partnership with a research hospital in Nairobi, healthcare providers engaged an online survey to assess perceived comfort in communication and prior educational training in communication. The COMFORT communication model was used to develop and pilot a webinar-based communication training series to meet training needs. Pre-post measures of comfort in communication and post-curriculum evaluation were used to evaluate the webinars. Results: Survey findings from 94 healthcare providers demonstrated that communication training is most needed when patient/family culture is different from provider. Physicians reported less comfort in communication than nurses and other professionals, especially in communication with family about spiritual or religious concerns. Nurses reported more overall training in palliative care communication topics than physicians and other disciplines. The 3-part webinar series increased communication comfort for physicians and nurses, was highly rated, and participants reported that they would recommend COMFORT webinar training to colleagues. Conclusion: Webinar-based platforms for communication training show promise for meeting communication training needs of healthcare providers.

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Patients’ pathways to cancer care in Tanzania: documenting and addressing social inequalities in reaching a cancer diagnosis

Makene

Ngilangwa

Santos

et al. 2022

BMC Health Serv Res

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Background This article investigates the extent and sources of late diagnosis of cancer in Tanzania, demonstrating how delayed diagnosis was patterned by inequities rooted in patients’ socio-economic background and by health system responses. It provides evidence to guide equity-focused policies to accelerate cancer diagnosis. Methods Tanzanian cancer patients (62) were interviewed in 2019. Using a structured questionnaire, respondents were encouraged to recount their pathways from first symptoms to diagnosis, treatment, and in some cases check-ups as survivors. Patients described their recalled sequence of events and actions, including dates, experiences and expenditures at each event. Socio-demographic data were also collected, alongside patients’ perspectives on their experience. Analysis employed descriptive statistics and qualitative thematic analysis. Results Median delay, between first symptoms that were later identified as indicating cancer and a cancer diagnosis, was almost 1 year (358 days). Delays were strongly patterned by socio-economic disadvantage: those with low education, low income and non-professional occupations experienced longer delays before diagnosis. Health system experiences contributed to these socially inequitable delays. Many patients had moved around the health system extensively, mainly through self-referral as symptoms worsened. This “churning” required out-of-pocket payments that imposed a severely regressive burden on these largely low-income patients. Causes of delay identified in patients’ narratives included slow recognition of symptoms by facilities, delays in diagnostic testing, delays while raising funds, and recourse to traditional healing often in response to health system barriers. Patients with higher incomes and holding health insurance that facilitated access to the private sector had moved more rapidly to diagnosis at lower out-of-pocket cost. Conclusions Late diagnosis is a root cause, in Tanzania as in many low- and middle-income countries, of cancer treatment starting at advanced stages, undermining treatment efficacy and survival rates. While Tanzania’s policy of free public sector cancer treatment has made it accessible to patients on low incomes and without insurance, reaching a diagnosis is shown to have been for these respondents slower and more expensive the greater their socio-economic disadvantage. Policy implications are drawn for moving towards greater social justice in access to cancer care.

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When ‘chemo is failing’ … ‘the illness is indigenous’. Therapeutic pluralism and reclaiming agency: family cancer caregivers’ experiences in Nairobi

Cited by 4 publications

References 47 publications

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

What constitutes a palliative care need in people with serious illnesses across Africa? A mixed-methods systematic review of the concept and evidence

Sharing COMFORT Communication Training With Healthcare Professionals in Nairobi, Kenya: A Pilot Webinar Series

Patients’ pathways to cancer care in Tanzania: documenting and addressing social inequalities in reaching a cancer diagnosis

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