How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?

Background
Surgery can correct congenital heart defects, but disease management in low- and middle-income countries can be challenging and complex due to a lack of referral system, financial resources, human resources, and infrastructure for surgical and post-operative care. This study investigates the experiences of caregivers of children with CHD accessing the health care system and pediatric cardiac surgery.

Methods
A qualitative study was conducted at a teaching hospital in Ethiopia. We conducted semi-structured interviews with 13 caregivers of 10 patients with CHD who underwent cardiac surgery. We additionally conducted chart reviews for triangulation and verification. Interviews were conducted in Amharic and then translated into English. Data were analyzed according to the principles of interpretive thematic analysis, informed by the candidacy framework.

Results
The following four observations emerged from the interviews: (a) most patients were diagnosed with CHD at birth if they were born at a health care facility, but for those born at home, CHD was discovered much later (b) many patients experienced misdiagnoses before seeking care at a large hospital, (c) after diagnosis, patients were waiting for the surgery for more than a year, (d) caregivers felt anxious and optimistic once they were able to schedule the surgical date. During the care-seeking journey, caregivers encountered financial constraints, struggled in a fragmented delivery system, and experienced poor service quality.

Conclusions
Delayed access to care was largely due to the lack of early CHD recognition and financial hardships, related to the inefficient and disorganized health care system. Fee waivers were available to assist low-income children in gaining access to health services or medications, but application information was not readily available. Indirect costs like long-distance travel contributed to this challenge. Overall, improvements must be made for district-level screening and the health care workforce.

Freedom of choice, expressions of gratitude: Patient experiences of short-term surgical missions in Guatemala.

Lack of surgical care has been highlighted as a critical global health problem, and short-term medical missions (STMMs) have become a de facto measure to address this shortfall. Participation in STMMs is an increasingly popular activity for foreign medical professionals to undertake in low- and middle-income countries (LMICs) where their clinical skills may be in short supply. While there is emerging literature on the STMM phenomenon, patient experiences of surgical missions are underrepresented. This research addresses this gap through thirty-seven in-depth interviews with patients or caregivers who received care from a short-term surgical mission within the three years prior to the four-week data collection period in July and August 2013. Interviews were conducted in Antigua, Guatemala and nearby communities, and participants came from 9 different departments of the country. These first-hand accounts of health-seeking through a surgical mission provide important insights into the benefits and challenges of STMMs that patients encounter, including waiting time, ancillary costs, and access to care. Patient agency in care-seeking is considered within the pluralistic, privatized health care context in Guatemala in which foreign participants deliver STMM care.