Introduction: Many children born with NTDs in most African countries do not have easy access to specialised services such as paediatric neurosurgery because these are only available in larger hospitals (Ameh, 2003). The consequence is late presentation for surgery leading to high mortality rates and severe impairments for those who survive (Larareff, 2011; Ameh et al., 2001). The challenges faced by developing countries in surgical care could be explained using the access to care framework namely the “four A’s access to care theory” which has four dimensions namely availability, accessibility, affordability and acceptability.

Purpose: This study explored experiences of mothers of children with neural tube defects (NTDs) regarding accessing health care services.

Relevance: Attaining equity of access to health care services for children with NTDs in Zambia is not possible because surgical services for these children can only be found in Lusaka. This lack of access to essential health care services has been reported to be the major cause of early deaths and severe disabilities among children with NTDs in developing countries.

Participants: A sample of 20 mothers of children with NTDs who were admitted to the University Teaching Hospital was selected using purposeful sampling.

Methods: Qualitative methods were used and data was collected using face to face in-depth interviews. All interviews were audio-taped, transcribed verbatim and translated, with recurring ideas coded and collapsed into categories and themes.

Results: Experiences of mothers were summarised into five themes namely access to health care, transport, being a mother to a child with a NTD, family concerns and support. Transport to and from the national referral hospital was the main challenge.

Conclusion: Findings on access to health were related to the "four A's" access theory which consists of four dimensions of access namely geographical accessibility, availability, affordability and acceptability.

Implications: Results from the study could be used to inform policy makers and health care providers on the challenges mothers face with accessing health care services for children with NTDs. This could potentially lead to improved service delivery for the affected children.

Key words: Access to health care.

NB: Please note that there is only one University Teaching Hospital in Zambia and it has no other name.

NB: The theme “Being a mother to a child with a NTD" was included because as mothers narrated their experiences, they also narrated how they got to know about the child’s condition, they also expressed their need for information about this condition and they wanted to know the future of their child. The theme “family concerns and support” was included because it represented mothers’ experiences with families in relation to cultural beliefs (e.g. delayed access because family opted to use traditional remedies instead of going to hospital) and how those who got help or support from families, government or others found it easy to access the referral hospital.