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: A Qualitative Study.

PURPOSE/AIM: This qualitative study explores parents' perspectives of the clinical nurse specialist (CNS) after diagnosis of cleft lip and/or palate and while preparing for/after lip or palate closure and other events on the cleft treatment pathway in the United Kingdom. DESIGN: Parents with children on the "cleft treatment pathway" were recruited from multiple regions across the United Kingdom. In-depth interviews were conducted with 24 parents of children born with cleft lip and/or palate. METHODS: Thematic analysis identified 4 key themes: relationship with CNS, information provision, preoperative care and multidisciplinary team (MDT), and postoperative support. RESULTS: Clinical nurse specialists are a highly valued point of contact and act as a trusted mediator between parents and other professionals in the MDT. Clinical nurse specialists are important gatekeepers in providing support and information and developing trust after diagnosis and birth and throughout the cleft treatment pathway. CONCLUSION: The present findings affirm the emotional, social, and informational support that the CNS can offer parents whose children are on a cleft treatment pathway. The CNS is a vital member of the cleft service MDT.

Factors Associated With Adherence to Nasoalveolar Molding (NAM) by Caregivers of Infants Born With Cleft Lip and Palate.

OBJECTIVE: Identify factors associated with adherence to nasoalveolar molding (NAM) therapy. DESIGN: Retrospective case-control study. SETTING: Tertiary referral center. PATIENTS, PARTICIPANTS: Infants with cleft lip, with or without cleft palate, referred for NAM. One hundred thirty-five patients met criteria. MAIN OUTCOME MEASURE(S): Adherence to NAM therapy, defined as continuous use of the appliance and attendance of NAM adjustment visits. RESULTS: Female sex (OR = 2.85, 95% CI 1.21-6.74), bilateral cleft (OR = 2.88, 95% CI 1.29-6.46), and travel distance (OR = 1.01, 95% CI 1.00-1.01) were independent predictors of nonadherence. Bilateral clefts (OR = 8.35, 95% CI 2.72-25.64) and public-payer insurance (OR = 3.67, 95% CI 1.13-11.91) for male patients were significantly associated with nonadherence, in our sex-stratified multivariate model. The majority of the families (58%) had public health insurance. Males comprised 77.0% of the cohort. CONCLUSIONS: NAM treatment adherence is impaired by bilateral clefts, female sex, increased travel distance, and public insurance. Further studies are warranted to investigate how these factors affect adherence, and to develop interventions to improve adherence in families at risk due to economic or psychosocial barriers.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 3. Descriptive study of postoperative nursing care following first stage cleft closure.

BACKGROUND: Cleft lip and palate is one of the most common congenital anomalies requiring surgical treatment in children, normally commenced in the first year of life. Following the initiation of a group of multicentre surgical trials of primary surgery, variations in postoperative recovery and management became apparent. An agreement was made for a nurse-led survey in eight surgical centres to document postoperative care and recovery. MATERIALS AND METHODS: A postoperative recovery clinical report form was developed to capture relevant data for the children participating in the four arms of the trials. This included the age and weight at admission, the postoperative recovery setting, pain management, postoperative feeding, post-operative complications, and length of hospital stay. RESULTS: Four hundred and three nursing forms from the first surgical procedure were returned for analysis. Differences in important aspects of care such as postoperative analgesia and postoperative feeding were evident. Postoperative care was influenced by local custom and practice, as little firm clinical evidence exists to guide optimal management. CONCLUSION: Postoperative recovery may play a significant role in the future selection of surgical protocols, and future trials need to consider cross-study site training to familiarise nurses, prior to any changes in surgical methods. TRIAL REGISTRATION: ISRCTN29932826.

Parental experience caring for cleft lip and palate infants with nasoalveolar moulding.

AIM: The aim of this study was to explore the experience of parents caring for an infant with a cleft lip and palate receiving nasoalveolar moulding. BACKGROUND: Nasoalveoral moulding is a pre-surgical orthopedic appliance used to approximate an infant's cleft lip and palate, mould the nose and reduce surgical correction. Use of nasoalveolar moulding can be intensive, costly and lengthy requiring parental commitment to the process since it involves several months of weekly visits for appliance adjustment. Although extensive research has been conducted on surgical outcomes after use, little evidence exists pertaining to parental experiences caring for an infant undergoing the nasoalveolar moulding treatment process. DESIGN: The qualitative design phenomenology was used to best capture parents' lived experiences. METHODS: Eight mothers and four fathers participated in informal, semi-structured interviews during the months of April-May 2010. RESULTS: Four themes were identified: (1) You do what you have to do; (2) We weren't left alone in the dark; (3) It's just amazing to see the difference; and (4) It's like nothing ever happened. Findings indicated that despite some difficulties, parents' were dedicated to the treatment process and expressed the benefits exceeded any additional work nasoalveolar moulding required. CONCLUSION: Multiple recommendations to assist parents with the nasoalveolar moulding treatment process were identified. Improving nasoalveolar moulding education and providing support can substantially improve challenges that are experienced by parents throughout this process - strengthening the importance of their role for successful nasoalveolar moulding outcomes.

Caregiver responses to early cleft palate care: A mixed method approach.

OBJECTIVE: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants. METHOD: A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants' cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment (∼1 month of age), prelip surgery (∼3-5 months of age), and postpalate surgery (∼12-13 months of age). Multilevel modeling was used to longitudinally assess CGs' psychosocial outcomes. RESULTS: Although the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. CONCLUSION: CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research.

Evidence-Triggers for Care of Patient with Cleft Lip and Palate at Srinagarind Hospital: Antenatal Care Unit.

Background: The abnormalities of cleft lip and palate (CLP) condition are the serious problems which always found in the northeastern region of Thailand. The treatment must be sustainably and continuously integrated by the interdisciplinary team, including registered nurses who take care of all nine organizations under the corporation among nurses who work at Tawanchai Cleft Center. Starting from the diagnosis of the fetus by the new technology along with medical knowledge which can diagnose the abnormalities since birth. The diagnosis of the fetus with CLP affects mental and health of mother, so the nurse who takes extended care of them needs to have the data in order to plan the integration treatment and prepare them to be ready of confronting to the crisis. Also, this is for the adaption of fetal abnormalities and the encouragement for their new baby. Hence, clinical evidence triggered for care of pregnant women with fetal CLP is really important. Objective: To trigger the clinical evidence of pregnant women whom found the fetal CLP at antenatal care unit, Srinagarind Hospital. Material and Method: This descriptive study of clinical evidence-triggers for care of pregnant women with fetal CLP is the part of the study in antenatal care clinic which was applied to use the clinical evidence-triggers of The Center for Advance Nursing Practice Model. After the considerations of human ethics, the four stimulators were examined as the followings: 1) the simulation of practice triggers which was studied by reviewing five patient medical records in order to know the general data and health condition; 2) reviewed related literature, 3) interviewed five pregnant women whom diagnosed with fetal CLP, 4) interviewed one responsible nurse with 15-20 minutes, and using open-ended questions to ask about the health problems of pregnant woman, also giving an advice. The data were collected during January-December 2015. The descriptive data were analyzed using percentage and the qualitative data were analyzed by content analyses. Results: A total of five pregnant women with fetal CLP were included in the study with the mean age of 32 years, and the second pregnancy was 80%. The clinical problems of pregnancy with fetal CLP included: 1) mental and health of pregnant women and families; 2) discouragement of being pregnant and taking care of their pregnancy; 3) fetal facial image; and 4) nurture of such fetus after birth. The results after the diagnosis of pregnancy with fetal CLP and receiving advice from physicians and nurses were found regarding medical records that they were advised from the physician and nurse towards the abnormalities and chromosome inspection, and given treatment after birth. According to the interviewing of the nurse, it was found that the pregnancy felt regret and denied the diagnostic results, and needed treatment information. Besides, according to the interviewing of the pregnancy, it was found that they wanted to discontinue the pregnancy, needed information, wanted to know about any abnormality. The literature review revealed that nurses were those who providing care, knowledge, and advice. Conclusion: The clinical problems of pregnant women detected with fetal CLP included feelings of disappointment, sadness, and regret whether or not found other abnormalities and being stress in caring for pregnant and postpartum care. The best handling and treatment was to obtain care from the interdisciplinary team in order to help them and their families to face with the crisis, accept to the abnormality of the fetus and having alternatives, and select such the appropriate alternatives, including antepartum and postpartum care.

Operation smile and the Guwahati comprehensive cleft care center: multidisciplinary global activism in plastic surgery.

Participation in a medical mission in an underserved area is both a challenging and deeply satisfying experience. The global burden of cleft lip and palate is significant, and as plastic surgery providers we are all empowered to help these patients. Surgery for cleft lip and palate is life changing for patients, and the privilege of participating in a mission can be life altering for the providers as well. The Comprehensive Cleft Care Center in Guwahati, India, is a prime example of multidisciplinary collaboration resulting in excellent care in the developing world.

Doubts of caregivers of children with cleft lip and palate on postoperative care after cheiloplasty and palatoplasty / Dúvidas de cuidadores de crianças com fissura labiopalatina sobre os cuidados pós-operatórios de queiloplastia e palatoplastia dudas de cuidadores de niños con fisura labiopalatina acerca de los cuidados posoperatorios de queiloplastia y palatoplastia / Dúvidas de cuidadores de crianças com fissura labiopalatina sobre os cuidados pós-operatórios de queiloplastia e palatoplastia

Objective To identify the main doubts of caregivers of children with cleft lip and palate on postoperative care after cheiloplasty and palatoplasty. Method Cross-sectional study carried out in a reference hospital, between September and November 2012. The sample was composed of 50 individuals divided in two groups, of which 25 caregivers of children submitted to cheiloplasty, and 25 of children submitted to palatoplasty. The doubts were identified by an interview applied during the preoperative nursing consultation and were then categorized by similarity. Descriptive statistics was used for analysis of the outcomes. Results Concerning cheiloplasty, the doubts were related to feeding (36%), hygiene and healing (24% each), pain and infection (8% each). With regard to palatoplasty, the doubts were related to feeding (48%), hygiene (24%), pain (16%), bleeding (8%) and infection (4%). Conclusion The study evidenced the concern of caregivers in relation to feeding and care of the postoperative wound. .

Objetivo Identificar as principais dúvidas dos cuidadores de crianças com fissura labiopalatina sobre os cuidados pós-operatórios das cirurgias de queiloplastia e palatoplastia. Método Estudo transversal realizado em um hospital de referência, entre os meses de setembro a novembro de 2012. A amostra constou de 50 indivíduos divididos em dois grupos, sendo 25 cuidadores de crianças submetidas à queiloplastia e 25 crianças submetidas à palatoplastia. As dúvidas foram identificadas por meio de entrevista, realizada durante a consulta de Enfermagem pré-operatória, e, posteriormente, foram categorizadas por similaridade. Utilizou-se a análise estatística descritiva para construção dos resultados. Resultados Observou-se que, em relação à queiloplastia, as dúvidas foram sobre alimentação (36%), higienização e cicatrização (24% cada), e dor e infecção (8% cada). Quanto à palatoplastia, as dúvidas se relacionaram à: alimentação (48%), higienização (24%), dor (16%), sangramento (8%) e infecção (4%). Conclusão Evidenciou-se a preocupação dos cuidadores em relação à alimentação e aos cuidados com a ferida pós-operatória. .

Objetivo Identificar las principales dudas de los cuidadores de niños con fisura labiopalatina acerca de los cuidados posoperatorios de las cirugías de queiloplastia y palatoplastia. Método Estudio transversal llevado a cabo en un hospital de referencia, entre los meses de septiembre a noviembro de 2012. La muestra constó de 50 individuos divididos en dos grupos, siendo 25 cuidadores de niños sometidos a la queiloplastia y 25 niños sometidos a la palatoplastia. Las dudas fueron identificadas por medio de entrevista, realizada durante la consulta de Enfermería preoperatoria y, posteriormente, fueron categorizadas por similaridad. Se utilizó el análisis estadístico descriptivo para la construcción de los resultados. Resultados Se observó que, con respecto a la queiloplastia, las dudas fueron acerca de la alimentación (36%), higienización y cicatrización (24% cada), y dolor e infección (8% cada). En cuanto a la palatoplastia, las dudas estuvieron relacionadas con: la alimentación (48%), higienización (24%), dolor (16%), sangrado (8%) e infección (4%). Conclusión Se evidenció la preocupación de los cuidadores con respecto a la alimentación y los cuidados con la herida posoperatoria. .

Cuidados à criança com fissura labiopalatina: uma revisão integrativa / Atención a niños con labiopalatino hendido: una revisión integradora / Care to children with cleft lip-palate: an integrative review

Objective: To analyze the scientific production that addresses the care to children with cleft lip-palate. Method: Bibliographical research of integrative literature review type. The searches were conducted in BDEnf, LILACS and SciELO databases. Results: The study included 11 articles that met the inclusion criteria, published between 2000 and 2011. As for the knowledge area of the principal author of each study, there were contained three articles of dentistry, medicine, three, three of nursing and two of nutrition. The studies addressed nutritional care, dental care, and multidisciplinary team approach for mothers, and protocols for postoperative care. Conclusion: The nursing staff, especially nurses, have an important role in assisting the child with cleft lip-palate. It emphasizes the integration of the multidisciplinary team to provide holistic care and improvements in quality of life of children with cleft lip-palate.

Objetivo: Analisar a produção científica que aborda os cuidados à criança com fissura labiopalatina. Método: Pesquisa bibliográfica do tipo revisão integrativa da literatura. As buscas foram realizadas nas bases de dados BDEnf, LILACS e SciELO. Resultados: Foram analisados 11 artigos que atenderam aos critérios de inclusão, publicados de 2000 a 2011. Quanto à área de conhecimento do principal autor de cada estudo, compreenderam três artigos da odontologia, três da medicina, três da enfermagem e dois da nutrição. Os estudos abordaram cuidados alimentares, odontológicos, equipe multiprofissional, abordagem às mães, pós-operatório e protocolos de atendimento. Conclusão: A equipe de enfermagem e, sobretudo o enfermeiro, tem papel relevante na assistência à criança com fissura labiopalatina. Ressalta-se a integração da equipe multidisciplinar e a visão holística do cuidado a fim de proporcionar melhorias na qualidade de vida das crianças portadoras de fissura labiopalatina.

Objetivo: Analizar la producción científica que cubre la atención a los niños con labio-palatino hendido. Método: Investigación bibliográfica de tipo revisión de literatura Integrativa. Las búsquedas se realizaron en las bases de datos BDEnf, LILACS y SciELO. Resultados: El estudio incluyó 11 artículos que cumplían los criterios de inclusión, publicados desde 2000 hasta 2011. En cuanto al área de conocimiento del autor principal de cada estudio, contenía tres artículos de la odontología, la medicina tres, tres de enfermería y dos de nutrición. Estos estudios han abordado la atención nutricional, odontológica, equipo multidisciplinario, el enfoque para las madres, y los protocolos de cuidados postoperatorios. Conclusión: El equipo de enfermería y las enfermeras en particular, tienen un papel importante en asistir al niño con labio-palatino hendido. Se destaca la integración del equipo multidisciplinario y el cuidado integral para proporcionar mejoras en la calidad de vida de los niños con labio-palatino hendido.

[Doubts of caregivers of children with cleft lip and palate on postoperative care after cheiloplasty and palatoplasty]. / Dúvidas de cuidadores de crianças com fissure labiopalatina sobre os cuidados pósoperatórios de queiloplastia e palatoplastia.

OBJECTIVE: To identify the main doubts of caregivers of children with cleft lip and palate on postoperative care after cheiloplasty and palatoplasty. METHOD: Cross-sectional study carried out in a reference hospital, between September and November 2012. The sample was composed of 50 individuals divided in two groups, of which 25 caregivers of children submitted to cheiloplasty, and 25 of children submitted to palatoplasty. The doubts were identified by an interview applied during the preoperative nursing consultation and were then categorized by similarity. Descriptive statistics was used for analysis of the outcomes. RESULTS: Concerning cheiloplasty, the doubts were related to feeding (36%), hygiene and healing (24% each), pain and infection (8% each). With regard to palatoplasty, the doubts were related to feeding (48%), hygiene (24%), pain (16%), bleeding (8%) and infection (4%). CONCLUSION: The study evidenced the concern of caregivers in relation to feeding and care of the postoperative wound.

'Cleft palate services had to be reformed'.

Vanessa Martin was nurse of the year in 2000 for her work supporting the families of children with cleft palate. She helped reorganise services nationally and, now retired, still visits a cleft service in Romania she helped to set up.

Nursing care system development for patients with cleft lip-palate and craniofacial deformities in operating room Srinagarind Hospital.

BACKGROUND: For a successful surgical outcome for patients with cleft lip/palate (CLP), the attending nurses must continuously develop their potential, knowledge, capacity and skills. The goal is to meet international standards of patient safety and efficiency. OBJECTIVE: To assess and improve the nursing care system for patients with CLP and craniofacial deformities at the operating room (OR), Srinagarind Hospital, Khon Kaen University. MATERIAL AND METHOD: Data were collected for two months (between March 1, 2011 and April 30, 2011). Part I was an enquiry regarding the attitude of OR staff on serving patients with CLP; and, Part 2.1) patient and caregiver satisfaction with service from the OR staff and 2.2) patient and caregiver satisfaction with the OR transfer service. RESULTS: The authors interviewed 28 staff in OR unit 2 of the OR nursing division and 30 patients with CLP and his/her caregiver. The respective validity according to the Cronbach's alpha coefficient was 0.87 and 0.93. The OR staff attitude visa-vis service provision for patients with CLP service was middling. Patient and caregiver satisfaction with both OR staff and the transfer service was very satisfactory. DISCUSSION AND CONCLUSION: Active development of the nursing care system for patients with CLP and craniofacial deformities in the operating room, Srinagarind Hospital improved staff motivation with respect to serving patients with CLP. The operating theater staff was able to co-ordinate the multidisciplinary team through the provision of surgical service for patients with CLP.

Knowledge and satisfaction of caregivers of patients with cleft lip-palate at the Tawanchai Cleft Center.

The Northeast region has the highest rate of cleft lip-palate (CLP) deformities in Thailand. This born handicapped condition leads to complicated problems in many ways. The best treatment is managing the system to have good coordination by an interdisciplinary team that rehabilitate patients' physical and mental conditions so they can recover as well as possible. This study aimed to determine the (1) knowledge of taking care of patients and (2) service satisfaction of caregivers resulting from the development of Tawanchai Cleft Center's nursing care system as a 1-stop coordinating service in 2010. The study included 106 caregivers. We used a questionnaire to assess the knowledge level and the service satisfaction. Most of the patients had left unilateral complete cleft lip and palate (41%). The mother was the caregiver most of them time (68%); 43% had completed primary education, and 40% worked in agriculture. The average knowledge level among caregivers for the specialized care of patients with CLP was a good level ((Equation is included in full-text article.)= 3.71, SD = 0.81). The average knowledge level concerning the cause, the treatment guideline, and treatment by a multidisciplinary team of patients with CLP was a moderate level ((Equation is included in full-text article.)= 3.28, SD = 0.85). The satisfaction of caregivers regarding service at the In- and Out-patient Surgery Department was very good for all items ((Equation is included in full-text article.)= 3.54, SD = 0.54). The one-stop coordination service developed for caregivers neatly fit the needs of CLP patients and resulted in a moderate to good level of knowledge and a very good level of satisfaction regarding the specialized care needed.

Cleft lip and palate in Scotland: a survey.

The aim of the survey was to assess midwives' experiences and knowledge of cleft lip and/or palate (CL+/-P), confidence in supporting the families and giving feeding advice, and to identify areas for input from the cleft team. In order to do so, questionnaires were sent to maternity units across Scotland. The results were as follows: 206 questionnaires were returned (42 per cent response rate). Forty one per cent of the midwives had helped a baby with CL+/-P to be born; 23 per cent knew the incidence of CL+/-P; 33 per cent were aware of the stages in treating CL+/- P; 99 per cent were aware that feeding difficulties are a potential complication. When asked about offering support to the families, 70 per cent were not confident and 60 per cent were not confident at giving feeding advice. Regarding cleft team input, 65 per cent would like a training day, 45 per cent requested small group teaching, 50 per cent would like a website and 57 per cent would like printed literature. Our recommendations are to implement training, for midwives, along with supporting websites and literature.

Establishing an antenatal group for families with a diagnosis of cleft lip.

U.K. cleft teams offer antenatal packages of care, which seek to be research based and respond locally to national standards of care set by the U.K. cleft nurse's special interest group (SIG). In April 2010 the 18-to-20-week National Health Service (NHS) Foetal Anomaly Ultrasound Scan Programme (FASP) standards and guidance for England were changed to include routine screening of the face to improve national pick up rates for cleft lip, which should increase referrals to cleft teams. This article aims to discuss the development of a specialist cleft antenatal group, established as a collaborative project between clinical nurse specialists (CNS) and clinical psychologists in the north-west England, Isle of Man and North Wales (NWNW) Cleft Network. Two pilot groups ran in 2008. Families referred to the team in the antenatal period were invited to attend a 'one-off' group before their child's birth. The group aim was to facilitate parental adjustment to cleft diagnosis in the antenatal period. Regular groups were then established in both network surgical hubs (Alder Hey and Royal Manchester Children's Hospitals (AHCH and RMCH)) every three or four months as part of the routine package of care provided by the team. Attendance at these groups ranged from 30-50% of those invited between 2008 to 2011. Feedback forms from attendees have informed the evolution of the group. The groups facilitate peer support at an important adjustment time for families.