Affordability, availability and acceptability barriers to health care for the chronically ill: Longitudinal case studies from South Africa

Abstract

BackgroundThere is an increasing burden of chronic illness in low and middle income countries, driven by TB/HIV, as well as non-communicable diseases. Few health systems are organized to meet the needs of chronically ill patients, and patients' perspectives on the difficulties of accessing care need to be better understood, particularly in poor resourced settings, to achieve this end. This paper describes the experience of poor households attempting to access chronic care in a rural area of South Africa.MethodsA household survey (n = 1446 individuals) was combined with qualitative longitudinal research that followed 30 case study households over 10 months. Illness narratives and diaries provided descriptive textual data of household interactions with the health system.ResultsIn the survey 74% of reported health problems were 'chronic', 48% of which had no treatment action taken in the previous month. Amongst the case study households, of the 34 cases of chronic illness, only 21 (62%) cases had an allopathic diagnosis and only 12 (35%) were receiving regular treatment. Livelihoods exhausted from previous illness and death, low income, and limited social networks, prevented consultation with monthly expenditure for repeated consultations as high as 60% of income. Interrupted drug supplies, insufficient clinical services at the clinic level necessitating referral, and a lack of ambulances further hampered access to care. Poor provider-patient interaction led to inadequate understanding of illness, inappropriate treatment action, 'healer shopping', and at times a break down in cooperation, with the patient 'giving up' on the public health system. However, productive patient-provider interactions not only facilitated appropriate treatment action but enabled patients to justify their need for financial assistance to family and neighbours, and so access care. In addition, patients and their families with understanding of a disease became a community resource drawn on to assist others.ConclusionIn strengthening the public sector it is important not only to improve drug supply chains, ambulance services, referral systems and clinical capacity at public clinics, and to address the financial constraints faced by the socially disadvantaged, but also to think through how providers can engage with patients in a way that strengthens the therapeutic alliance.

Comparison in the incidence of anorectal malformations between a first- and third-world referral center

“…The relative dearth in resources and abject patient poverty as remnants from the former apartheid government are very real challenges that face the South African health system [29,33]. Patients have poor access to referral centers, having to travel vast distances, leaving other dependents and possibly their jobs for relatively long periods during the course of treatment [33][34][35].…”

“…Many ARM diagnoses may be missed or delayed in the primary health care settings, rife with overcrowding, under facilitation and lack of specialist backup [29,34]. Referral systems from rural clinics to tertiary facilities are poorly functional and difficult to access [29,30,33,35]. Noted by Beudeker et al, Malawian patients that lived closer to tertiary institutions had a better diagnosis and survival rate [25].…”

A descriptive qualitative study of childhood cancer challenges in South Africa: Thematic analysis of 68 photovoice contributions

“…19 Powerlessness was a commonly reported theme and in one of its most serious forms, parents and guardians were excluded from children's medical examinations or prevented from staying in hospital (primary or regional hospitals) with young cancer patients who were older than 7 years. This practice has been observed in other studies 36 and besides being draconian and emotionally traumatic for all, is at odds with both constitutional 37, and children's rights 38 and poses a safety risk to children who are denied a dedicated adult guardian at a time when they are extremely vulnerable. 36,39 Being assertive in the face of powerlessness was difficult for many patient-participants and both language barriers 40 and poor communication between the medical team and parents or guardians 31 compounded this problem.…”

A telephone-based version of the spinal cord injury–secondary conditions scale: a reliability and validity study

“…These findings have important practical implications because the scale could be administered by telephone in LMIC where it may be cost prohibitive to provide regular face-to-face follow-up services for all people with SCI. 16 A telephone interview overcomes problems of illiteracy and may be associated with a better response rate than mailed questionnaires.…”

“…These findings have important practical implications because the scale could be administered by telephone in LMIC where it may be cost prohibitive to provide regular face-to-face follow-up services for all people with SCI. 16 A telephone interview overcomes problems of illiteracy and may be associated with a better response rate than mailed questionnaires.Clearly, no telephone interview that relies on self-report can replace a thorough clinical assessment. There will always be the potential for patients to underestimate the severity of a secondary health condition or be unaware to the existence of a secondary health condition.…”