Understanding health-seeking and adherence to treatment by patients with esophageal cancer at the Uganda cancer Institute: a qualitative study

Background
In the low- and middle-income countries, most patients with esophageal cancer present with advanced stage disease and experience poor survival. There is inadequate understanding of the factors that influence decisions to and actual health-seeking, and adherence to treatment regimens among esophageal cancer patients in Uganda, yet this knowledge is critical in informing interventions to promote prompt health-seeking, diagnosis at early stage and access to appropriate cancer therapy to improve survival. We explored health-seeking experiences and adherence to treatment among esophageal cancer patients attending the Uganda Cancer Institute.

Methods
We conducted an interview based qualitative study at the Uganda Cancer Institute (UCI). Participants included patients with established histology diagnosis of esophageal cancer and healthcare professionals involved in the care of these patients. We used purposive sampling approach to select study participants. In-depth and key informant interviews were used in data collection. Data collection was conducted till point of data saturation was reached. Thematic content analysis approach was used in data analyses and interpretations. Themes and subthemes were identified deductively.

Results
Sixteen patients and 17 healthcare professionals were included in the study. Delayed health-seeking and poor adherence to treatment were related to (i) emotional and psychosocial factors including stress of cancer diagnosis, stigma related to esophageal cancer symptoms, and fear of loss of jobs and livelihood, (ii) limited knowledge and recognition of esophageal cancer symptoms by both patients and primary healthcare professionals, and (iii) limited access to specialized cancer care, mainly because of long distance to the facility and associated high transport cost. Patients were generally enthused with patient – provider relationships at the UCI. While inadequate communication and some degree of incivility were reported, majority of patients thought the healthcare professionals were empathetic and supportive.

Conclusion
Health system and individual patient factors influence health-seeking for symptoms of esophageal cancer and adherence to treatment schedule for the disease. Interventions to improve access to and acceptability of esophageal cancer services, as well as increase public awareness of esophageal cancer risk factors and symptoms could lead to earlier diagnosis and potentially better survival from the disease in Uganda.

The lucky ones get cured: Health care seeking among women with pelvic organ prolapse in Amhara Region, Ethiopia.

Abstract
BACKGROUND:
The majority of women suffering from maternal morbidities live in resource-constrained settings with diverse barriers preventing access to quality biomedical health care services. This study aims to highlight the dynamics between the public health system and alternative healing through an exploration of the experiences of health care seeking among women living with severe symptomatic pelvic organ prolapse in an impoverished setting.

METHODS:
The data were collected through ethnographic fieldwork at the hospital and community levels in the Amhara region of Ethiopia. The fieldwork included participant observation, 42 semi-structured interviews and two focus group discussions over a period of one year. A group of 24 women with severe symptomatic pelvic organ prolapse served as the study’s main informants. Other central groups of informants included health care providers, local healers and actors from the health authorities and non-governmental organisations.

RESULTS:
Three case stories were chosen to illustrate the key findings related to health care seeking among the informants. The women strove to find remedies for their aggravating ailment, and many navigated between and combined various available healing options both within and beyond the health care sector. Their choices were strongly influenced by poverty, by lack of knowledge about the condition, by their religious and spiritual beliefs and by the shame and embarrassment related to the condition. An ongoing health campaign in the study area providing free surgical treatment for pelvic organ prolapse enabled a study of the experiences related to the introduction of free health services targeting maternal morbidity.

CONCLUSIONS:
This study highlights how structural barriers prevent women living in a resource-constrained setting from receiving health care for a highly prevalent and readily treatable maternal morbidity such as pelvic organ prolapse. Our results illustrate that the provision of free quality services may dramatically alter both health-and illness-related perceptions and conduct in an extremely vulnerable population.