HST sharing and learning to keep people treated and cared for

HST sharing and learning to keep people treated and cared for Over 60 people crowded into the Modimolle Municipality’s Boardroom in Limpopo Province’s Waterberg District. In addition to an excellent turnout of community members, some participants were attending in their working capacities or representing governance structures in the district, such as the Local AIDS Council. The presence of the Executive Mayor accentuated the importance of the occasion. All those present understood the seriousness of the topic to be explored – why patients with chronic ailments who are on medication do not adhere to their treatment regimens, and why the district struggles to retain patients in care, resulting in unacceptably high “loss to follow-up”, as reflected in the monthly health services information reports.

Photo of Thabazimbi group discussion. A heated group discussion at the Thabazimbi Community Dialogue on 18 March 2015

Research shows that retaining people in care improves their chances of survival, and in cases of communicable disease limits its spread – yet many patients do not remain in care. Adhering to treatment regimens is important not only for HIV-positive patients and those with active tuberculosis (TB), but all those on chronic care medication – including for hypertension, diabetes mellitus and other chronic, non-communicable diseases. The scale of the problem requires all stakeholders and role-players to seek effective methods for retaining in care all patients suffering from chronic ailments. And what better way to identify the reasons for such community-related issues than gathering the views and insights of the very people particularly affected by this problem?

Health System Trust’s SA SURE project team uses this method of information collection, known as community dialogue, to support health systems strengthening. Dialoguing with the community was selected as the best strategy to assist Waterberg District in probing the causes of the problem and, in collaboration with the civil society stakeholders, seeking solutions.

The reasons for the failings offered by the community fell into two broad categories – factors associated with the health system and factors related to the users themselves.

The health system-related factors reflected, firstly, how easy or difficult it was for the patients to use the services. Could the patients actually get to the health facilities, particularly in rural areas (accessibility), were the services and medication available when they got there (availability), and could community members rely on receiving the chronic care services that they needed when they did arrive (reliability)? Patients recounted how they had, after struggling to reach the facility, been told that their chronic medication was ‘out of stock’ and how they sometimes learned only later that they should have been taking the medication in a special way. The community requested that health facilities optimise their appointment booking systems because working people cannot afford to sit in a queue, sometimes for the entire day, while the informally employed also have responsibilities in the home.

A second factor, which related to how the health services are managed (health services’ management), played a big part in patients not adhering to their medication or dropping out of care completely. Thirdly, the community’s contributions clarified that they are no longer willing to ‘take whatever comes’, but that the health services provided must meet certain expectations and levels of acceptability (service acceptability). Some health workers queried the effectiveness of current monitoring and evaluating of clinic staff’s performance and productivity – at times they felt discouraged as it seemed that merit-driven benefits were not awarded, no matter how hard they worked. A degree of uncertainty emerged about the roles of treatment supporters and community caregivers. A fourth health system-related factor was the quality of the interaction between health service provider and the patient (provider-patient interaction), particularly with regard to health information and education, and management of side-effects.

These personal perspectives and direct experiences are of immeasurable value for those striving to make a difference in improving the health status of the community members. It became apparent that the onus for improvement lies not with the chronic medication users alone, but also with the community-based, faith-based and non-governmental organisations to which they belong and which have the potential and capacity to support them.

The issues related to the users themselves included affordability (such as food security, transport costs and social grants); mobility (of the patients); psycho-social dynamics (stigma, social support and discrimination, and lay, religious and traditional beliefs and misconceptions); psychological factors (depression, denial, feeling better after some time on treatment, personal commitment to health and care, treatment fatigue, and alcohol and substance abuse); and lastly, physiological challenges (such as side-effects of the medication).

The participants suggested a vast number of strategies to improve adherence and retention in care (or to reduce loss to follow-up). Among these were improvement of mobile services and outreach in rural areas; reduction of waiting times in fixed clinics; extended clinic hours; eliminating medication stock-outs; providing stable patients with medication for up to three months; better filing systems; improved training for nurses and community caregivers; caring for caregivers; expansion of community dialogues and community-based health and treatment education; ensuring confidentiality in facilities; more respectful and compassionate staff attitudes; thorough physical examination; routine health and treatment information, and linkages between facilities; addressing poverty; and strengthening social support for patients on chronic treatment.

These observations and suggestions from civil society and the ranks of the service providers towards removing barriers to treatment adherence and reduced loss to follow up,  strengthen the knowledge base of chronic medication users, inform strategies for civil society group efforts, propose ways to improve health delivery, and highlight issues for governance structures to address.

By providing a platform on which many voices from a range of backgrounds can be heard and counted, the three community dialogues represented successful interventions for securing community buy-in to listening, sharing and learning about issues relating to their health and wellbeing. The dialogues also showcased the functionality of AIDS Councils. Possibly most importantly, the intervention was the first time that the community, civil society structures, facility governance structures and officials from the Department of Health had sat together to reflect jointly and meaningfully on this particular aspect of strengthening the health system.