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.

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.

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 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.

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.

'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.

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature.

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.

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

BACKGROUND: A holistic nursing care system for patients with cleft lip-palate (CLP) and/or craniofacial deformities was arranged by the Nursing Department, Srinagarind Hospital, which provides tertiary nursing care. The nursing care system was developed as per system theory via participating management with action research following the Deming Cycle (PDCA) divided into 3 phases. Participants included 117 nurses from 8 divisions caring for patients with CLP and 128 parent caregivers. The research instruments included: 1) situation analysis, 2) meeting and planning and 3) self-administered questionnaire. Groups were divided according to the age, physical and mental aspects of the patients. RESULTS: 1) The nursing care system under study comprised psychosocial care, breastfeeding, counseling, providing assistance in various ways in order to respond to problems of patients/families by the multidisciplinary team. There was also follow-up to evaluate the results and in order to give patients/families longitudinal and continuing care. 2) Minor research of 4 nursing sections was initiated. 3) Nursing care standards, manuals, regulations and innovations for the organization of eight nursing sections were created and implemented. CONCLUSION: The present study on developing a nursing care system for patients with CLP helped the team to (a) understand the overall nursing care system (b) to develop the organization of nurses by conducting research and (c) to create 12 works for developing care. The latter aimed to establish or create standards, nursing manuals, caring manuals, regulations, innovations, CDs, portfolios and informative cartoons to be applied systematically and shared across and between communities. The model for nursing care for patients with CLP in tertiary hospitals was clearly demonstrated.

The development of the nursing care system for patients with cleft lip-palate and craniofacial deformities at Tawanchai Cleft Center, Srinagarind Hospital, Khon Kaen, Thailand.

BACKGROUND: The highest incidence of cleft lip-palate and craniofacial deformities in Thailand occur in the Northeastern Region. There is the necessity for an interdisciplinary care team as well as the specialized care center with systematic coordinated care, thus "Tawanchai Cleft Center" is becoming a superior medical center for patients with cleft lip-palate and craniofacial deformities. Therefore, the development of the nursing care system for patients with cleft lip-palate and craniofacial deformities at Tawanchai Cleft Center, Srinagarind Hospital is extremely important and necessary. OBJECTIVE: To develop the nursing care system appropriate for a super tertiary hospital (Tawanchai Cleft Center). MATERIAL AND METHOD: It is a participation study which has 3 steps as follows, 1) Analyzing the situations and collecting the opinions of the 22 Out-patient Surgery Department staff and Tawanchai Cleft Center staff by using 6 questions, 2) Summarizing of the situation analysis from the meetings and the questionnaires, then using such summary as the guidelines for developing the nursing care system from January 2011 onwards, 3) evaluating the satisfaction after the 4 month development period (May-August 2011) with 106 caregivers by using 8 questions and being analyzed by the average value, percentage and standard deviation. RESULTS: 1) The nursing care system consisted of psychosocial care, breast feeding, counseling and other assistance as required. This various assistance responded to the patient/family problems by following the treatment guideline of the multidisciplinary team which uses the continuous evaluation processes for the holistic patient/family care. 2) The patients with complete cleft lip-palate were the most common type, found in 44 cases or 41.53 percent. The highest number of caregivers were mothers which were 68 percent; the average age of those mothers was 36 years old. The highest number of them finished elementary school at 43 percent and 40 percent were farmers. The satisfaction for the services of Tawanchai Cleft Center showed the average for each satisfaction subject all at very good level (x = 3.56, SD = 0.13). CONCLUSION: The care for patients with CLP and craniofacial deformities at Tawanchai Cleft Center Srinagarind Hospital has been developed in order to have the appropriate nursing care system to provide superior quality care, which provides patient-holistic care, as well as improving effective accessibility to the services. Thus, the patients/caregivers who are satisfied with given services, get continuing monitoring and treatment and are able to live their lives in the society happily.

Nursing outcome in patients with cleft lip and palate who underwent operation: follow-up cases.

BACKGROUND: Cleft lip and cleft palate are the most common craniofacial anomalies affecting approximately 2.5 of every 1,000 children born in North East of Thailand. Srinagarind Hospital has 150-200 cases of cleft lip and palate each year. The lengthy treatment process of care, requires continuity of care involving a multidisciplinary team. The holistic and interdisciplinary care is very important to patients, family, health care professionals and the health care system. After operation patients stay in hospital about 2-3 days, during this time they will receive information regarding how to take care of the wound,feeding and details about activities to avoid. Before patients leave hospital the nurse will confirm if parents can take care of patients wound, feeding, know about avoiding activities. The Nurses or health care professional can check patients progress again when they come back to hospital for follow-up. OBJECTIVE: To promote continuity care and resolve any problems for developing quality of care. MATERIAL AND METHOD: The present study is retrospective descriptive study. Data was collected from follow-up case forms using 205 medical records of patients with cleft lip and palate who were admitted in 3c ward Srinagarind Hospital between June 2010 to May 2011. The records were purposively selected for the study and recorded with a data collection form. RESULTS: 95.12% of patients with cleft lip and palate came back for follow-up. 2.44% of patients had wound infection. 7.69% of patients have flap separation. The authors also found that some care givers could not take care of the patients correctly and were not concerned about follow-up. CONCLUSION: To contracts the patients and family when they visit hospital for follow-up can make health care professional ensure the patients understand what they need to know and do, also can find any uncomfortable points/problem of patients/ family then can develop the strategies or system to solve the problem.

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.

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.

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.

Nursing care system development for patients with cleft lip-palate and craniofacial deformities in Srinagarind Hospital: pre-post operation.

BACKGROUND: Cleft lip and palate are the most common craniofacial anomalies. Srinagarind Hospital has 150-200 cases each year. The operating process of care requires continuity of care involving a multidisciplinary team. When the patients go to hospital to have operation, pain, limited activity and food are very different from normal life. During pre and post operative care nurses who work continuously and closely with the patients should have knowledge, experience and ability to take excellent care of their patients and families. This can prevent complications and help their decision process, decrease parents stress and encourage better co-operation. OBJECTIVE: To develop a nursing care system for patients with cleft lip-palate undergoing operation. MATERIAL AND METHOD: This is an action research divided into 3 phases. Phase 1, situation review: review of nursing care process by interview, focus group, observation and nursing documents. Phase 2, nursing system management: developing guidelines, composing nursing manual, handbook for parents, VCD for patients and family and story telling. Following that announcement and implementation. Phase 3: evaluation. RESULT: The authors found that guidelines, nursing manual, handbook for parents, VCD for patients and family and story telling are appropriate and have good utilization, but the pictures in handbook for parents and storytelling were not clear, too small and not attractive. CONCLUSION: Nursing manual for giving information about pre-post operative care, handbook for parents, story telling and VCD about pre-post operative care provide optimal care for patients and family with cleft lip and palate, but need to evaluate further the nursing outcome after this nursing system development.

[The first steps of an ANP-team - challenges and chances of ANP-teams at the Children's University Hospital Zurich]. / «Wie ein ANP-Team laufen lernt¼ - Herausforderungen und Chancen von ANP-Teams am Universitätskinderspital Zürich.

In the past, various individual ANP-roles such as Clinical Nurse Specialist and Nurse Practitioner were developed in the USA and in several countries of Northern Europe. In Switzerland, the number of university-educated nurse specialists is still very limited. In order to promote sustainable progress in nursing practice despite of this background, Advanced Nursing Practice teams (ANP-teams) have continuously been established at Kinderspital Zurich for the last eight years. This approach has proven to be an excellent option especially in highly complex situations where targeted and adequate solutions for patients are a major issue. In this article, the structure of the ANP-teams is discussed, with the personnel mix as a key factor. Important supportive elements are a clear definition of tasks as well as an allocation of individual tasks to either clinical or conceptual groups. The ANP teams are highly motivated and goal-oriented, they integrate nurses with various backgrounds of experience or training whereby mutual learning is being encouraged.

[Malformation of the oral cavity of the foetus, what support is available for parents?]. / Malformation buccale du foetus, quel accompagnement pour les parents?

One of the many questions which parents ask with regard to the malformation of the oral cavity of their child at birth concerns feeding. By answering all the couple's questions, the antenatal consultation aims to prepare the baby's birth and its admission into its family and society.