Health professional communication and the diagnosis and care of infants born with cleft lip and palate in the U.K.

The Cleft Palate Craniofacial Journal

Zucchelli

Hudson

et al. 2019

Objectives: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence base for psychosocial intervention remains limited. Specialist clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to identify common psychosocial challenges and potential risk and/or protective factors for psychosocial distress from the perspective of specialist clinicians and to establish the types of interventions currently being delivered in practice. Design: Individual interviews with 17 clinical nurse specialists and 19 specialist clinical psychologists, representing all 16 UK CL/P surgical sites. Data were analyzed using inductive content analysis. Results: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the life span. Risk factors were predominantly contextual in nature, while protective factors appeared amenable to intervention. Participants drew upon a range of therapeutic models and approaches to guide formulation and intervention, while acknowledging the lack of evidence to support these approaches in CL/P populations specifically. Conclusions: Findings have important implications for the way in which psychosocial support for CL/P and related conditions is delivered and evaluated. A framework for the standardized assessment of holistic individual and familial well-being is proposed. Suggestions for increasing the evidence base for specific psychosocial interventions are made, including enhanced family functioning; social, emotional, and appearance concerns; treatment decision-making; and screening for psychosocial and developmental issues.

Section: Discussionmentioning

confidence: 99%

Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom

The Cleft Palate Craniofacial Journal

Zucchelli

Hudson

et al. 2019

“…It is imperative that the appropriate level of information is achieved, since negative interactions can have a profound impact on parents during a time of emotional turmoil and uncertainty and can impede longer-term familial adjustment (Cousino & Hazen, 2013). Previous CL/P literature has identified the potential psychological impact of a poorly handled diagnosis and/or suboptimal postnatal care as delivered by nonspecialist health professionals, such as sonographers and midwives (Knapke et al, 2010; Searle et al, 2016; Stock et al, 2019b). Within this literature, a lack of knowledge, information, and adequate support is a reoccurring theme.…”

Section: Discussionmentioning

confidence: 99%

“…Within this literature, a lack of knowledge, information, and adequate support is a reoccurring theme. Comprehensive suggestions for improvements, including increased training and support for nonspecialist health professionals, widespread access to reliable information in a variety of formats, and a closer collaboration between specialist CL/P teams and nonspecialists have been previously offered (Searle et al, 2016; Stock et al, 2019b).…”

Section: Discussionmentioning

confidence: 99%

“…The questions asked also do not differentiate between the care delivered by CL/P specialists and by nonspecialists; rather they ask parents to reflect on their overall journey to date. In qualitative studies, parents of children with CL/P have identified some differences, often praising CL/P specialists and criticizing nonspecialists (Jeffery & Boorman, 2001; Knapke et al, 2010; Lindberg & Berglund, 2014; Searle et al, 2016). Nonetheless, affected families are the responsibility of the health service as a whole, and patient-centered health-care involves the establishment of partnerships between all providers.…”

Section: Discussionmentioning

confidence: 99%

“…This relationship between health-care satisfaction and parental adjustment reinforces the importance of high quality, coordinated, patient-centered care. Nonetheless, previous qualitative studies exploring the health-care experiences of parents of children with CL/P highlight potential service-related issues (Knapke et al, 2010;Searle et al, 2016). To date, little research has explored parents' satisfaction with health-care from a quantitative perspective (Stock & Feragen, 2016).…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Satisfaction With Health Care in Families Following a Diagnosis of Cleft Lip and/or Palate in the United Kingdom

Costa

White

The Cleft Palate-Craniofacial Journal

2019

Objective: Having a child born with a cleft lip and/or palate (CL/P) poses several challenges for new parents and can have a significant psychological impact on the family as a whole. Previous research has indicated that dissatisfaction with health care is a risk factor for poor parental adjustment and family functioning. Yet, knowledge is lacking in regard to which aspects of care parents may be dissatisfied with. The current study aimed to comprehensively evaluate health-care satisfaction in families following a diagnosis of CL/P by utilizing data collected from a UK-wide birth cohort. Methods: Self-reported questionnaire data were obtained from 517 parent dyads enrolled in The Cleft Collective Birth Cohort Study. The “Pediatric Quality of Life Inventory—Healthcare Satisfaction Generic Module” was used as the primary outcome measure. Results: Overall, parents were satisfied with the care they had received. However, less favorable scores were identified in relation to the information parents had been given. A good degree of agreement between mothers and fathers was observed. However, marginal evidence suggested that fathers were significantly more dissatisfied than mothers regarding the “Communication” and “Inclusion of Family” subscales. Conclusions: Although the findings of this large-scale study reflect overall health-care satisfaction, issues are raised in relation to the quality of information families received, particularly for fathers. In addition, fathers may feel less included in their child’s treatment pathway. These findings offer practical suggestions as to which areas of care could be targeted by all health professionals to improve parents’ health-care experiences and promote overall familial adjustment.

Provision of Care for Families Affected by Craniofacial Conditions: The Views of Nonspecialist Health Professionals

The Cleft Palate-Craniofacial Journal

Costa

2019

Objective: A diagnosis of a congenital craniofacial condition can have a significant impact on the psychological well-being of the affected family. As the first health professionals likely to come into contact with families, nonspecialists, such as diagnostic sonographers, midwives, and health visitors play a crucial role in facilitating familial adjustment. Yet, previous research has demonstrated parental dissatisfaction with the care delivered by nonspecialists. The aim of this study was to investigate the provision of care for families affected by craniofacial conditions from the perspective of nonspecialist health professionals, with a view to informing the development of educational materials. Design: Individual semistructured telephone interviews (n = 14) were conducted with 3 diagnostic sonographers, 2 fetal medicine consultants, 3 midwives, 4 health visitors, and 2 children’s nurses. Results: Participants identified a range of barriers to the delivery of optimal care, including dealing with parental reactions, time pressure, hospital protocols and resources, a lack of contact with specialist craniofacial teams, and the emotional impact of delivering a diagnosis. Most participants had received no prior training in the area of congenital craniofacial conditions, while those who had felt current training materials were insufficient. All participants expressed a desire for further training and provided guidance regarding preferred content and format. Conclusions: This study provides insight into the challenges faced by nonspecialists, as well as a range of information and training needs that could improve their knowledge and confidence. Suggestions for the development of educational materials for nonspecialist health professionals are made.