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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