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- Fochsen, Grethe
(författare)
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Encounters with power : health care seeking and medical encounters in tuberculosis care : experiences from Ujjain District, India
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Tuberculosis (TB) has been declared a government priority in India and public TB care is delivered by the Revised National Tuberculosis Control Programme (RNTCP). Despite having achieved a significant increase in reported cure rates and coverage, the RNTCP is associated with access barriers and there is no indication that the incidence of TB is declining. Private health care providers play a significant role in the delivery of tuberculosis care. While medical encounters in the private health care sector are described as patient-friendly, the encounters in the public health care sector are reportedly poor. Aim: This study examines health care seeking and medical encounters in the context of TB care in a rural district in central India. More specifically, the study focuses on how relations of power between health care providers and patients are created, altered and maintained during medical encounters in a diversified health system. Methods: The study was conducted in Ujjain district, Madhya Pradesh, India. In paper I, we conducted a population-based screening survey within a demographic surveillance site (n= 45,719) to identify and interview individuals who had had a cough for more than three weeks (paper I). In papers II-IV, I used qualitative methods including semi-structured interviews with 22 health care providers purposively selected from the public and private health care sectors in rural and urban areas (paper II), non-participant observations, including qualitative interviews, in four private health care clinics (paper III) and at a district tuberculosis centre (paper IV) and, finally, semi-structured interviews with 14 TB patients (paper III). Findings: Among the individuals with a cough (477 men and 167 women), 69% of the men and 71% of the women reported seeking health care, and the majority of both men and women visited a private provider first. Only 13% of those seeking care reported having had a sputum smear examination since the onset of their cough. In the medical encounters, health care providers adopted an authoritarian as well as a consumerist approach. The authoritarian approach was encapsulated in health care providers’ perceived need to persuade or force “the ignorant patient” to follow their advice. While young women in particular were perceived as incapable of understanding the doctor, the interactions between health care providers and female patients were often restricted because of gendered norms for communication. When guided by consumerism, private health care providers tried to meet patients’ needs and expectations, and an informal support system to the ‘poor’ was established through negotiations around treatment and payments between patients, relatives and providers. In the public health care facilities, on the other hand, hidden costs created an illusionary ‘free’ public TB care. In patients’ considerations of paying for care, affordability was defined in the interplay between perceived severity of symptoms, doctors’ status and capacity to treat and cure, opportunities to raise money, as well as considerations of social status and gender. A doctor’s dilemma within the RNTCP was identified as conflicting accountabilities. In an organization perceived as inefficient and resource-constrained, the doctor struggled to find a balance between meeting the obligations of the programme, and meeting the needs and expectations of the patients in the encounters. Conclusion: When medical encounters were guided by consumerism, patients had the chance to be active and negotiate decisions with health care providers. However, at the same time, the patients’ ability to pay was subject to assessment by the providers, and young women, in particular, were in the hands of others when it came to negotiating treatment and payments. Hence, both empowering and exploitive mechanisms seemed to be at play in the encounters that take place in the private health care sector, and these need to be considered in the ongoing strategies of including private providers in TB control activities in India. The dilemma of conflicting accountabilities indicates that encounters within the RNTCP are embedded in a system where not only patients but also doctors lack power to act. This suggests the need to support doctors and health care providers in implementing the programme as one step towards also increasing patients’ involvement in the encounters. Furthermore, the hidden costs associated with the ‘free’ public TB care need to be recognized in efforts to successfully attract and treat patients in the RNTCP.
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| 2. |
- Gusdal, Annelie K, 1963-, et al.
(författare)
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Peer counselors' role in supporting patients' adherence to ART in Ethiopia and Uganda
- 2011
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Ingår i: AIDS Care. - : Informa UK Limited. - 0954-0121 .- 1360-0451. ; 23:6, s. 657-662
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Tidskriftsartikel (refereegranskat)abstract
- Our aim was to explore peer counselors' work and their role in supporting patients' adherence to antiretroviral treatment (ART) in resource-limited settings in Ethiopia and Uganda. Qualitative semi-structured interviews were conducted with 79 patients, 17 peer counselors, and 22 providers in ART facilities in urban and rural areas of Ethiopia and Uganda. Two main categories with related subcategories emerged from the analysis. The first main category, peer counselors as facilitators of adherence, describes how peer counselors played an important role by acting as role models, raising awareness, and being visible in the community. They were also recognized for being close to the patients while acting as a bridge to the health system. They provided patients with an opportunity to individually talk to someone who was also living with HIV, who had a positive and life-affirming attitude about their situation, and were willing to share personal stories of hope when educating and counseling their patients. The second main category, benefits and challenges of peer counseling, deals with how peer counselors found reward in helping others while at the same time acknowledging their limitations and need of support and remuneration. Their role and function were not clearly defined within the health system and they received negligible financial and organizational support. While peer counseling is acknowledged as an essential vehicle for treatment success in ART support in sub-Saharan Africa, a formal recognition and regulation of their role should be defined. The issue of strategies for disclosure to support adherence, while avoiding or reducing stigma, also requires specific attention. We argue that the development and implementation of support to peer counselors are crucial in existing and future ART programs, but more research is needed to further explore factors that are important to sustain and strengthen the work of peer counselors.
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| 3. |
- Gusdal, Annelie K, 1963-, et al.
(författare)
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Voices on adherence to ART in Ethiopia and Uganda : a matter of choice or simply not an option?
- 2009
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Ingår i: AIDS Care. - : Informa UK Limited. - 0954-0121 .- 1360-0451. ; 21:11, s. 1381-1387
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Tidskriftsartikel (refereegranskat)abstract
- This paper explores HIV patients' adherence to antiretroviral treatment (ART) in resource-limited contexts in Uganda and Ethiopia, where ART is provided free of charge. Qualitative semi-structured interviews were conducted with 79 patients, 17 peer counselors, and 22 providers in ART facilities in urban and rural areas of Ethiopia and Uganda. Interviewees voiced their experiences of, and views on ART adherence both from an individual and a system level perspective. Two main themes emerged from the content analysis: "Patients' competing costs and systems' resource constraints'' and "Patients' trust in ART and quality of the patient-provider encounters.'' The first theme refers to how patients' adherence was challenged by difficulties in supporting themselves and their families, paying for transportation, for drug refill and follow-up as well as paying for registration fees, opportunistic infection treatment, and expensive referrals to other hospitals. The second theme describes factors that influenced patients' capacity to adhere: personal responsibility in treatment, trust in the effects of antiretroviral drugs, and trust in the quality of counseling. To grant patients a fair choice to successfully adhere to ART, transport costs to ART facilities need to be reduced. This implies providing patients with drugs for longer periods of time and arranging for better laboratory services, thus not necessitating frequent revisits. Services ought to be brought closer to patients and peripheral, community-based healthworkers used for drug distribution. There is a need for training providers and peer counselors, in communication skills and adherence counseling.
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