Parents' Perspectives of Cleft Lip and/or Palate Services: A Qualitative Interview

Abstract

The study aimed to explore in depth the perspectives of parents about their child's cleft services. Purposive and theoretical sampling produced a diverse sample of mothers and fathers with children aged 20 weeks to 21 years. Parents were recruited from a specialist cleft center in the U.K. Qualitative, in-depth, face-to-face interviews were carried out with 35 parents. Interviews were audio-recorded, transcribed, and analyzed using grounded theory to identify salient data categories. Findings revealed that parents' positive views about services rested on their perceptions of cleft-care practitioners as competent and trustworthy, possessing highly developed communication skills and the ability to provide continuity of care to families. At the same time, some mothers and fathers identified unmet support needs relating to information delivery and content as well as the coordination of services across the treatment course. More individualized information about treatment was desired; in particular, some parents had incomplete information about their child's surgical procedures, associated risks, and postsurgical recovery. Parents wanted better coordination of services with regard to communication about surgical cancellations, a child's transition to adult services, and having a key professional to link with throughout their child's treatment course. Routine assessments to gauge parents' needs could be built into cleft-care pathways so that more individualized information and support might be delivered to families in more consistent ways over long-term treatment.

Resilience and difficulties of parents of children with a cleft lip and palate

“…For instance, one study found that the parents of a child with a CLP experienced less of a negative impact on the family, lower psychological distress, and better adjustment by having more support from friends and family members (Baker, Owens, Stern, & Willmot, ). In addition, it has been demonstrated that the parents of a child with a CLP require a doctor who is competent and reliable and who has effective communication skills in order for them to think positively (Nelson & Kirk, ). Therefore, family, friends, and doctors are significant persons for these parents and a patients’ association or the establishment of a good relationship with healthcare providers are needed.…”

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

“…Most probably, many different factors are involved in the development of treatment-related anxiety [4,25], such as quantity and intensity of treatment, previous anxiety-provoking experiences, the child's temperament, parenting style, and the availability and number of coping mechanisms [24]. Previous research has also pointed to the importance of the provision of information about upcoming procedures, risks, and possible post-operative consequences [26,27], in addition to parental concerns regarding aftercare following the child's operations [19], factors that seem to contribute to the way young patients and their parents cope with treatment. Another potential factor of importance is that only three of the nine cleft centres that participated in the current study had a clinical psychologist working within the team.…”

The Role of the Clinical Nurse Specialist From the Perspective of Parents of Children Born With Cleft Lip and/or Palate in the United Kingdom

“…7 8 Furthermore, parents of children born with CLP have high information needs, not only in terms of content (cleft treatment pathway, feeding, surgical options, etc), it also needs it to be 'accessible, individualized, and paced around each family's needs'. 12 This informational support is provided by the cleft service team, and especially the CNS. 13 It is important to note that families who have a child born with CLP are likely to have their own perceptions about the cause, consequences and treatment cleft lip and / or palate.…”

“…(18MH, Mother) When comparing the level of care received after diagnosis of CLP up to the first operation some families reported that they had less face to face contact with the CNS after their child's surgery but that s/he was still available on the phone.....she would come the first few weeks she came every week and since thenDiscussionThis qualitative study explores families' perspectives of the CNS following diagnosis of CLP and while preparing for / following lip or palate closure and other events on the cleft treatment pathway in the U.K, signposting the different ways in which they support parents and families.In-depth qualitative interviews were conducted with families of children born with CLP who were receiving or had received care from cleft services in centres across the UK. To our knowledge, there have been no studies that have primarily explored families' experiences of the role of the CNS in the cleft service in the UK although similar work has been undertaken regarding families' experiences of the UK cleft service in general 12.…”