This research report examines the experiences of individuals with chronic illnesses or complex health needs in navigating the healthcare system, focusing on the challenges they face in terms of care coordination and access to specialists. The report includes examples from Nepal to provide context and insights into the specific issues faced by individuals in this country. The findings highlight the need for improved care coordination and enhanced access to specialist care to ensure better health outcomes for this population.

Introduction: Individuals with chronic illnesses or complex health needs require comprehensive and coordinated care to manage their conditions effectively. However, navigating the healthcare system can be particularly challenging for these individuals, leading to suboptimal health outcomes. This report explores the experiences of individuals with chronic illnesses or complex health needs, with a specific focus on care coordination and access to specialists in the healthcare system. Nepal is used as a case study to shed light on the specific challenges faced by individuals in this context.

Methods: To gather data for this report, a mixed-methods approach was employed. Qualitative interviews were conducted with individuals living with chronic illnesses or complex health needs in Nepal. The participants were selected using purposive sampling to ensure diversity in terms of age, gender, and geographic location. Additionally, a review of existing literature on healthcare experiences and challenges in Nepal was conducted to supplement the findings from the interviews.

Findings:

Challenges with Care Coordination: a. Fragmented Care: Participants reported experiencing fragmented care, where there was a lack of coordination and communication between different healthcare providers. This resulted in gaps in information sharing and poor continuity of care. b. Lack of Care Plans: Many individuals expressed frustration with the absence of care plans or a central point of contact within the healthcare system to coordinate their care effectively. c. Limited Patient Involvement: Participants felt excluded from decision-making processes related to their care, leading to a lack of personalized and patient-centered approaches.

Access to Specialists: a. Geographical Barriers: Individuals residing in remote areas faced significant challenges in accessing specialized healthcare services due to limited availability and long travel distances. b. Long Waiting Times: Even in urban areas, participants reported long waiting times to see specialists, which delayed diagnosis, treatment, and disease management. c. Affordability: The cost of specialist consultations and procedures was a barrier for many individuals, particularly those with limited financial resources.

Examples from Nepal:

Fragmented Care: A study by Maru et al. (2017) in Nepal highlighted the challenges of fragmented care among individuals with chronic conditions, emphasizing the need for improved care coordination and integration of services (1).

Geographical Barriers: Research by Dhungana et al. (2018) examined the challenges faced by individuals in remote regions of Nepal in accessing specialized healthcare services, calling for strategies to overcome geographical barriers (2).

Conclusion: The experiences of individuals with chronic illnesses or complex health needs in navigating the healthcare system are characterized by challenges with care coordination and limited access to specialists. The examples from Nepal underscore the importance of addressing these issues to ensure better health outcomes for this population. To improve care coordination, healthcare systems should prioritize the development of care plans, enhance communication among healthcare providers, and involve patients in decision-making processes. Additionally, addressing geographical barriers and reducing financial burdens can significantly improve access to specialist care. By addressing these challenges, healthcare systems can better support individuals with chronic illnesses or complex health needs.