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Table 2 Caregivers’ experiences and perceptions themes

From: “People look and ask lots of questions”: caregivers’ perceptions of healthcare provision and support for children born with cleft lip and palate

Theme Description
Emotional experiences of having a child with CL/P Mother
 • Self-blame
 • Shock
 • Feeling Scared
 • Crying
 • Acceptance of the child
Partner
 • Acceptance of the child
 • Denial of the child
 • Supportive
Concerns about
 • Speech
 • Schooling
 • Long term well-being
Reactions from family, friends and the public Family and friends
 • supportive
Public
 • Gossiping
 • Staring
 • Asking lots of Questions
Burden of care  • Feeding needs and challenges
 • Need for full-time and extra care
 • Many hospital visits
  - Transport costly
  - Frequent time off from work
  - Inability to work
Health system responsiveness Health provider attitudes and behaviour
 • Pleasant attitude
 • Rude behaviour
 • Caring attitude
Treatment provision
 • No payment for treatment
 • Satisfied with treatment
 • Lack of resources for mothers
Inadequate or lack of communication
 • Little or no Information
 • Inadequate Counselling
 • Little or no explanation
Social support services  • Lack of public awareness
 • Nuances of counselling