Keywords

cleft lip/palate, coping, family, quality of life, supporting parents

 

Authors

  1. Binford, Leslie DNP, RN, PNHNP-BC, PMH-C
  2. Rice, Mary Eve DNP, MSN, CPNP
  3. Hamlin, Amy PhD, MSN APSN, FNP-BC
  4. Wilson, Debra Rose PhD, MSN, RN, IBCLC, AHN-BC, CHT

Abstract

Abstract: The diagnosis of cleft anomalies evokes many emotions for parents, creating a significant psychosocial burden and ripple effect on the family. Parents report feeling fearful after diagnosis and overwhelmed on how to care for their child. They feel unprepared to manage the social response to a visible congenital malformation such as cleft lip and palate. Parents of children born with congenital malformations such as cleft palate have many obstacles to overcome in their child's lifetime, but many do not even know where to begin. Support for parents of children with palate should begin at diagnosis, as it takes time for these families to process how their child's congenital malformation will affect the quality of life of the family and the child. This article reviews the ways healthcare teams can support parents through diagnosis, coping, feeding, and surgical experiences and provides resources for providing care for these families.

 

Article Content

SUPPORTING PARENTS THROUGH A CLEFT PALATE

Cleft lip and palate are a specific group of birth abnormalities, but the treatment approaches vary significantly because of the need to be individualized. The multifaceted treatment of cleft lip and palate starts at birth and continues through adolescence into early adulthood. The incidence of cleft lip and palate is approximately one in 600-800 live births (Vyas et al., 2020). Cleft lip and palate can occur in any race, but there is a higher incidence in children of Hispanic, Asian, and Native American descent (Nationwide Children's, 2021). Genetic and environmental factors such as maternal smoking or drug use play a multifactorial role of the unknown etiology of these cleft lip and palate congenital disorders (Johansson & Ringsberg, 2004). The condition may include challenges such as impaired sucking, poor weight gain, failure to thrive, speech impediments, deafness, malocclusion, gross facial deformity, and psychological problems (Vyas et al., 2020). All these issues need to be addressed from an interdisciplinary team of healthcare professionals through continuous communication with the families and the ultimate goal of a better quality of life for the child over the lifetime and a happier and healthier family unit.

 

Parents of children born with congenital disorders have many obstacles to overcome in their child's lifetime. Family support should begin when the child is initially diagnosed. It takes time for these families to process how their child's congenital disorders will affect their life and the life of the family and the child. However, many do not even know where to begin. These families may struggle with inadequate coping mechanisms leading to depression, fear, anxiety, and chronic stress. Having a child with a congenital disorder impacts the entire family, but especially the parents. Parents of children with cleft lip/palate face medical challenges and issues related to their child's health, growth, and development; relationships and communication with the healthcare team; and finding adequate resources and support.

 

Navigating parents through the multiple challenges brought about by cleft lip/palate should be the target of care. Educating families on what to expect and how to manage care for their child through consistent communication, medical visits, and support groups is essential. "Healthcare professionals should remember to reiterate what they have told the families over multiple appointments even though it may seem redundant because parents are often so overwhelmed that they often cannot recall most of the information from the initial consultation" (Lemacks et al., 2013).

 

Implementation of family-centered care is a priority throughout treatment. Family-centered care involves recognizing the parents as the constant in the child's life and as critical healthcare team members, respecting their involvement, strengths, beliefs, and customs. Delivering care in a family-centered environment improves overall patient outcomes by encouraging communication, a shared vision for care, and a cohesive team with the family members and healthcare providers all involved.

 

Common Parental Concerns

Caring for a child with cleft lip/palate requires a new way of parenting. Parents may question if they are self-equipped for a new challenging lifestyle of parenting a child with a congenital disorder (Lemacks et al., 2013). Parents express a variety of concerns around caring for a child with cleft lip/palate. Concerns about feeding are a frequent concern. Parents experience various emotions ranging from shame, guilt, and embarrassment, leading to depression and anxiety that may continue long-term. Siblings may experience feelings of neglect and resentment toward the child with a congenital disorder. These emotions could lead to depression or other mental health diagnoses if not addressed early, adding to the burden on the family. Marriages of parents with special needs children have a higher divorce rate because of the changing dynamics of spousal interactions and lack of support from family, friends, or professionals (Lemacks et al., 2013).

 

Many parents experience financial burdens when raising a child with a congenital disorder. The parents often develop new struggles with their current employers and may question if they will continue working. Because of medical appointment and traveling for the child's care, there are significant time constraints and ongoing physical, occupational, and speech therapies. Employers may not support the family's medical needs. There may be stress around any change in employment, loss of job, or having to relocate the family because of potential loss of medical care or change in living standards. The financial strain can change the family dynamic significantly.

 

Healthcare providers, including nurses, can assist with relieving financial stress by seeking out funding and support sources for families who do not have insurance coverage or those who have to travel to care for their child (Gbolahan et al., 2020). Nurses can support parents by referring them to appropriate resources for parents of children with cleft lip/palate. Organizations that provide aid, support, and resources for parents of children with cleft lip/palate include the Cleft Lip Foundation, Smile Train, March of Dimes, American Cleft Palate-Craniofacial Association (ACPA), Cleft Advocate, Cleft Palate Foundation, and Faces: The National Craniofacial Association. Contact information and other resources to share with parents are found at the end of this article.

 

The Value of an Interdisciplinary Team

Interdisciplinary teams work together to provide comprehensive care to children with cleft lip/palate and their families. The interdisciplinary approach to care begins at the time of prenatal diagnosis and continues into the early days of teaching infant feeding and care. The weight of caregiving is reduced when parents are connected early to interdisciplinary care teams (Ko et al., 2020). The interdisciplinary team provides education, connections to needed peer and social support, financial resources information, and insight into the required future care and repair for children with cleft lip/palate. Interdisciplinary teams for children diagnosed with cleft lip/palate may include nurses, surgeons, speech-language pathologists, pediatric dentists, orthodontists, geneticists, lactation consultants, feeding and occupational therapists, psychologists or other mental health professionals, child life therapists, audiologists, pediatricians, and social workers. Members of the team impart specific knowledge and skills and provide support and reinforcement as parents navigate the care process.

 

Preparing the parents for the interdisciplinary team meeting can be just as important as the meeting itself. It is vital to provide space for parents to process emotions, and parents should be aware that the interdisciplinary team is there to support them. Encouraging families to reach out and utilize the available members of the team is essential throughout treatment. Engaging in counseling aids families in moving through the stages of grief and recovery. Providing ample space to process emotions, glean needed information and skills, and connect with essential resources is part of the holistic approach. Nurses can encourage parents to create a list of questions and concerns. Providing the parents with information about the team members' roles allows families to formulate appropriate questions and eases anxiety around initial meetings.

 

Clear and Consistent Information

Parents prefer to receive information from specialized care providers. Open lines of communication with the families of children with cleft lip/palate are vital. Communication begins from the initial diagnosis and must include educational information and resources (Lemacks et al., 2013). Communication between diagnosing providers, members of the healthcare team, and parents is vital to ensure that families are connected to the appropriate clinics and specialists that make up the interdisciplinary team. Nurses should provide specific direction on ways to connect with support organizations, and specialized care teams aid in relieving initial fears and concerns (Stock & Rumsey, 2015). When parents feel heard by members of the interdisciplinary team, communication becomes more feasible by all parties involved. When the families' feelings and stories are listened to and validated, it allows for hope.

 

The diagnosing provider should ensure that the parents are immediately connected to an interdisciplinary team with appropriate clinics and specialists. Communication with the parents is maintained to ensure they understand what is needed in medical care and other resources. It is ideal to have a designated person on the interdisciplinary healthcare team follow up with the parents through the pregnancy and once they are discharged home. This person could have available resources for parents when needed and watch for signs of family distress. Although the team and parents can add details in future interactions, short- and long-term plans need to be discussed. Parents need to know the plan of action and what to expect, not just immediately but in the future as well (Lemacks et al., 2013).

 

Ensuring that clear and consistent information is provided to the parents after diagnosis eases anxiety. Information should focus on cleft lip/palate education, treatment options, available resources, and expected outcomes (Sreejith et al., 2018). Parents benefit from repeated counseling sessions to address their concerns, and referrals might be appropriate.

 

Supporting Parents Through Diagnosis

Parents of children with a cleft lip/palate diagnosis experience grief, sadness, guilt, and feelings of losing their "ideal" child (Scheller et al., 2020). Significantly, parents report receiving insufficient information, which only reinforces their sense of being overwhelmed and their fear. Although initially more shocking, early prenatal diagnosis allows the parents to process their emotions and enhance their feelings of preparedness (Scheller et al., 2020). This time between diagnosis and birth creates space for parents to access support and education from professionals, resources, and peers. Interventions and education, directed early, ease feelings of worry (ACPA, 2019). Connecting the family at the time of diagnosis with the interdisciplinary team provides clarification, knowledge, and support (Carvalho et al., 2021). Prenatal diagnosis and counseling fostered confidence in caregiving and improved outcomes for children with cleft lip/palate (Sreejith et al., 2018).

 

Many parents who have children born with congenital disorders, like cleft lip and palate, move through the stages of grief that begin when they are delivered the diagnosis. These are similar stages of grief as if they lost a child; these families have lost the preconceived idea of what their experience would be like as new parents. Medical providers frequently recommend grief counseling to help alleviate the initial experience once told of the news of their child's congenital disorder.

 

Supporting Parents With Feeding Issues

Breastfeeding is the gold standard for infant nutrition with unparalleled health benefits for babies and mothers. Breast milk is particularly beneficial because it is not irritating to tender tissues in the nose and throat and reduces the risk of asthma, obesity, lower respiratory diseases, and ear infections (Centers for Disease Control and Prevention, 2021). Babies with cleft lip/palate tend to have more ear infections than babies without cleft lip/palate. Breastfeeding provides benefits against these infections. In addition, the antibodies passed from mother to infant are valuable as babies have surgeries to repair their cleft lip/palate.

 

Babies breastfeeding with a cleft lip but not palate can usually breastfeed without issues. However, for either condition, successful feeding at the breast depends on where the cleft is located. Babies use suction and create a seal with their lips and palate to draw milk from the breast. With cleft lip/palate, issues with suction can make breastfeeding more difficult. A simple cleft lip adapts to breastfeeding with breast tissue filling in the space and creating a seal. Instruct breastfeeding mothers of babies with a simple cleft lip that some babies nurse better with the cleft facing upward. Some infants with a small soft palate cleft might be able to get ample breast tissue to help seal the hole (Boyce et al., 2019). Babies who can draw milk from the breast might have difficulty with airway if milk is going up to the nasal cavities. Babies with large clefts are less likely to generate enough negative pressure to draw milk (Boyce et al., 2019). Babies with cleft palate may appear to be eating well because their cheeks and jaw are moving; however, because of their poor suction, they may not be getting enough milk.

 

Besides suction and seal issues, breastfeeding babies with cleft lip/palate tend to have more gagging/choking than other babies, tire more quickly, and swallow more air. Nurses should educate parents on best practices for breastfeeding and assure parents that breastfeeding is going well if the baby is calm and relaxed during feeding and seems content after feedings; if swallowing noises are heard with feedings; and if the baby is having adequate and appropriate wet diapers, stooling patterns, and weight gain.

 

Mothers of babies with cleft lip/palate must be referred to a lactation consultant immediately after birth. Encourage early pumping for the mother wanting her baby to have breast milk. The mother's success at breastfeeding a child with cleft lip/palate can be supported but must be carefully balanced with reality. Adaptations in approach are individualized in practice. Whether breastfed or bottle-fed, the infant's position is usually upright to discourage milk from going into the nasal cavity. If a cleft lip is involved, a finger across the cleft can help with the seal. There is no one right way to feed these babies. Coughing and sputtering are not uncommon and can be frightening to the parents. Some infants are fed breast milk from a bottle but still nuzzle at the breast to stimulate milk production.

 

Support and education for bottle-feeding practices must occur for mothers who do not desire to breastfeed or who choose or need to pump and use a bottle. Any over-the-counter bottle can generally be used for babies with only cleft lip, as long as the baby generates a good seal and suction. Several special bottles and nipples are available for bottle-feeding assistance for babies with cleft lip and palate. A 2021 systematic review examined various devices and techniques used to improve feeding for infants with cleft palate (Penny et al., 2021). Specialty bottles, alternative feeding systems (cup, spoon, or syringe feeding), and obturator (dental prosthesis to seal the cleft) were examined. The efficacy of these devices is difficult to compare because infants need individualistic approaches. For the infant who cannot create a seal, a Haberman Feeder allows the milk to be removed from the device with only tongue movement, and the parent can add more milk to the baby's mouth. One-way valve devices such as Dr. Brown's or the Pigeon nipple allows milk flow without suction, because there is always milk in the nipple and it flows easily. Squeezable bottles introduce more into the baby's mouth for those who suck poorly. Optimal weight gain is the goal and needs to be monitored closely (Penny et al., 2021). Postsurgery, new feeding skills may need to be acquired.

 

Intervention after prenatal diagnosis serves as a time to provide counseling and education around feeding devices. Once the baby is born and what works for this baby is sorted out, there is a need for repeated education and exposure to feeding and feeding devices. Repeated instruction and exposure bolster knowledge and self-efficacy. Provide time for parents to adjust to various devices and become more confident in their feeding role. A few feeding tips that nurses can share with mothers of babies with cleft lip/palate include the following:

 

* Nurse or bottle-feed the baby in a peaceful, quiet environment with minimal distractions.

 

* Burp the baby more frequently (every 5 minutes) to prevent excess gas.

 

* Keep each feed to 20-30 minutes. Prolonged feeds lead to excessive calorie expenditure.

 

* Sit the baby upright for 20-30 minutes after each feeding to prevent regurgitation.

 

* If the baby appears to be frequently choking, the parent may have to try a slower rate nipple.

 

* If the baby is showing any signs of breathing or swallowing issues, speak with a healthcare team member as soon as possible.

 

 

Beyond breastfeeding and bottle feeding, nurses must educate parents on introducing solids and liquids when the time comes. When introducing solids, instruct the parents to sit the baby upright. Parents can use any spoon or utensil for feedings unless the baby is in the immediate postoperative phase. The parents should be instructed to observe the baby, monitoring for adequate swallowing. Depending on the severity of the cleft, it is not uncommon to see food coming from the nose while eating. Reassure the parents that this may be messy or troubling but it is a normal finding. When introducing a cup for liquids, use one that is free-flowing and requires little suction, typically an open cup or a soft spout sippy cup. Parents may be advised against using specific cups during the immediate postoperative period.

 

Supporting Parents Through the Perioperative Process

Most children with cleft palate undergo a series of surgeries, starting in infancy and continuing through childhood. Surgical procedures and hospitalizations often invoke fear, anxiety, and stress for both parents and children. Parents worry about the unknown of surgical procedures, possible complications, and how to best support their child. Children are anxious and fearful about unfamiliar environments, unusual sights and sounds, pain, and separation from their parents. Children may have memories of unpleasant hospital experiences, including loss of control, interruption of routine, and discomfort depending on their age. Parents can play a pivotal role in helping their child remain calm throughout the preoperative and recovery phases. Nurses working with these families provide high-quality nursing care, while supporting families holistically throughout the entire perioperative experience.

 

Quality parental preparation is essential for positive patient outcomes preoperatively and postoperatively. In addition to educating the parents on what to expect physically and psychologically for their child, focus must be placed on assessing and reducing parental stress and anxiety. When parents are stressed, feelings can be transmitted to the child. If a parent's anxiety is excessive, it can become a barrier to the parent's ability to process information and provide care to their child adequately. Predictors of increased parent anxiety include being the parent of an infant, female gender (mothers have higher anxiety than fathers), repeated hospitalizations, and having a child who is more anxious (Ahmed et al., 2011; Pomicino et al., 2017). Factors that significantly decrease a parent's anxiety include preoperative education, frequent communication perioperatively, and adequate support and teaching postoperatively.

 

Preoperative Support

Nurses play a vital role in preparing parents and children for cleft palate surgery. Preoperative education must include both physical and psychological preparation. Provision of high-quality preoperative teaching for parents helps prepare the child for surgery and reduces anxiety and fear for the parents and the child. Family-centered care begins before the day of surgery and includes teaching and support for the parents. This is an ideal time to provide support group options, website resources, and printed materials for the parents to review later. Nurses planning preoperative education must consider moderating factors, including parental anxiety, previous medical experience, and coping styles. Allowing ample time to address parental concerns is critical in establishing trust with the surgical team and creating an overall increased level of parental satisfaction (Dziuba-Pallotta, 2015).

 

During a preoperative phase, parental education should include information on what to do to prepare for the surgery, what to expect during the surgery, and the recovery period. Essential teaching topics include discussion of the need for surgery, duration of surgery and hospitalization, informed consent, medications, physical preparations, what the child should wear and bring, waiting time and place, parental participation and involvement on the day of surgery, and expectations for the postoperative period, including pain management, eating, drinking, wound care, and follow-up (Aranha & Dsouza, 2019). Education should not conclude until the parents have adequate time to address any questions or concerns.

 

One of the most challenging components of the pediatric preoperative phase is the prefasting period. When a child cannot eat or drink, it causes anxiety for the child and the parents. A common cause for canceled pediatric surgeries is the parent failing to fully understand fasting instructions. Research shows up to 42% of parents reporting unawareness of the rationale for fasting before surgery, with less than 10% of parents reporting complete compliance with fasting requirements (Singla et al., 2020). When parents do not understand the importance and rationale of fasting, they may not adhere to the requirements. Reasons for noncompliance with fasting protocols include the child being anxious and irritable, fasting instructions not being explained thoroughly, the child's surgery occurring later in the day, and a lack of parent education (Singla et al., 2020). Nurses should prioritize quality teaching regarding the required fasting period and educate parents on the "why" of the fasting and the importance of maintaining nothing by mouth as instructed.

 

The "nothing by mouth" period varies based on the child's age, type of feeding, and institutional anesthesia protocols. Most national guidelines outline the 6-4-2 regimen, which outlines the required fasting hours for solids and liquids. Typically, clear liquids may be ingested up to 2 hours before surgery for any child age. Nurses need to ensure that parents understand what qualifies and does not qualify as clear liquids. For infants, breast milk can be ingested up to 4 hours before surgery, and infant formula can be ingested up to 6 hours before surgery ("Practice Guidelines," 2017). There is no consistent practice rule regarding fasting for solids in pediatric patients. Rules on solid foods should be reviewed on a case-by-case basis with parents taught the individual institution's policies and the anesthesiologist's preferences. The child's regular medications should be taken before surgery unless otherwise specified by the surgical team.

 

Nurses need to discuss interventions that will help the child through the fasting period. Fasting children are often irritable, irrational, and challenging to soothe. Because parents cannot explain why they cannot eat or drink to a very young child or infant, distraction techniques and other interventions assisting with comforting the child must be introduced. Guidance and interventions from child life therapy are beneficial in the preoperative area, especially with coping strategies. Effective distractions for the preoperative period include coloring books, stickers, modeling clay, puppets, and ride-on toys. The nurse can guide the child in deep breathing or other relaxation techniques, if developmentally appropriate. The use of technology, including smart phones, mobile devices, and tablets preloaded with movies, cartoons, and books, has been shown to be a cost-effective method of drastically reducing anxiety of children preoperatively (Goldschmidt & Woolley, 2017). For younger children and infants, toys that flash, play music, and shake/rattle are effective distraction tools.

 

A discussion about prolonged fasting should occur with the parents before surgery. Prolonged fasting involves a child fasting for longer than the recommended period and occurs in approximately 88% of preoperative children (Singla et al., 2020). Prolonged fasting can lead to complications with dehydration, increased discomfort, anxiety, insulin resistance, and postoperative vomiting (Buller & Sims, 2016). To prevent prolonged fasting, nurses should advise the parents to feed the child, even if that means waking the child before the fasting period, providing a high-carbohydrate snack or oral-carbohydrate-rich liquid, dependent on the child's age, diet, and the recommendations for fasting.

 

Although it is essential to inform and educate parents on their child's surgery, it is necessary to discover what the parents may already know. Because cleft palate surgeries can be a step in a series of surgical procedures, parents may be very knowledgeable. Then again, this should not be an assumption. Even very experienced parents with medical procedures need assessment and reinforcement of their knowledge and educational needs. Research shows that providing parents with written and verbal information is the best method for delivering preoperative patient education. Other ways to educate parents and lessen anxiety include videos, facility tours, medical play, and interactive sessions (Aranha & Dsouza, 2019). Studies have shown that parents should be provided information at least 1 week before the surgery to have time to process the information (Pomicino et al., 2017). If available, opportunities to interact with other interdisciplinary team members, including nurses, surgeons, anesthesiologists, child life therapists, lactation consultants, and others, allow the parents to ask questions and clarify any remaining concerns before surgery day.

 

Most importantly, parents should feel confident in the surgical plan before the day of surgery. Before surgery, the nurse should reinforce with the parents that they should not be afraid to ask questions and to ask as many questions as needed. In addition, please encourage involvement from the child in discussions, decision making, and education as much as developmentally possible.

 

Postoperative Support

No matter what surgical technique is completed, there are common priorities and goals for postoperative children with cleft lip/palate. These include appropriate skincare, use of elbow immobilizers, pain control, nutrition, and discussion of potential complications. Parents must be aware of negative behavioral changes that may occur with their child in the postoperative period. These include anxiety, regression, withdrawal, separation issues, aggression, sleep issues, apathy, and issues with eating (Ahmed et al., 2011). If the child was overly anxious before the surgery, problems with pain control and maladaptive behaviors may worsen postoperatively.

 

Causes of stress for parents in the postoperative period involve inadequate pain control, worries about healing, negative behavior issues, regression, and potential surgical complications. Although there may be different causes of parental anxiety postoperatively, support and family-centered care are still priorities. The stress and anxiety levels of the parents can positively or negatively impact the child in the postoperative phase. Parental anxiety can directly affect the child's emotional stability, pain levels, sleep, and postoperative results. Mutual goals for the child's care should be set before surgery and revisited through the postoperative period. Interventions that positively support family-centered care in the postoperative period include the following:

 

* Family participation in care, including parental presence in the recovery room.

 

* Parental support throughout hospitalization.

 

* Adequate and consistent control of postoperative pain.

 

* Encouraging extra parental attention and comfort for the child during the postoperative period.

 

 

For best outcomes, parents are encouraged to be involved in the care of their child as much as possible. Communication of the parental role and expectations while in the hospital must be addressed. Teaching topics should include how to appropriately position and hold the child, managing restraints, how and when to call the nurse, and signs of potential complications. The nurse should also educate parents on how to help their child cope and assist with maintaining comfort with interventions that they may initiate independently.

 

One of the biggest priorities for postoperative care of cleft lip/palate repair is maintaining hygiene and protecting the surgical site. This is an area where parents can play a significant role. Having parents understand the significance of skincare and setting goals for their participation lead to better compliance and outcomes. After cleft lip/palate repair, children will have stitches in place. It is typical for there to be edema, a small amount of bloody drainage from the nose and mouth, and excessive salivation. The nurse should reassure parents that this is normal with oral surgeries. Parents need education on effective handwashing, general hygiene, cleaning the area, and avoiding touching the site. Instruct parents to use moist gauze instead of a toothbrush or toothette to clean the child's mouth. Children usually wake in the postoperative area with elbow immobilizers in place. Remind the parents that this prevents the child from touching the surgical site and keeps the sutures in place. Elbow immobilizers may be in place for up to 3 weeks postsurgery to avoid injury. Parents of young infants may use mittens on their hands to prevent scratching or damaging of sutures.

 

After cleft lip/palate repair, adequate analgesia is necessary for comfort and to prevent anxiety and agitation. Pain after cleft lip/palate surgery is normal, no matter the age of the child. Achieving pain management in the first 12 hours postoperative is crucial and leads to faster recovery (Raghaven et al., 2018). Whether the pain is mild or severe, parents can have increased anxiety from seeing their child in pain. Anxiety in the preoperative period and parental characteristics are closely related to higher levels of postoperative pain (Yayan et al., 2020). Effective pain management after cleft lip/palate repair relies mainly on the child's responses and behavior. The nurse working with the child must rely heavily on the parent's evaluation and interpretation of the child's pain. Medications, nonpharmacologic interventions, and play therapy are all necessary for cleft lip/palate postoperative pain control. Parents need reassurance that pain medications are safe for children and that children given pain medications as prescribed have a very low risk for dependence. In addition to pain medications, the plan of care must include interventions that promote coping and provide support. Play therapy is associated with decreased tension and stress, leading to improved comfort levels (Aranha & Dsouza, 2019).

 

A primary focus for children with cleft lip/palate before and after surgery is optimal nutrition. Instructions on best practices for postoperative feeding must be a priority. Dependent on the surgeon and facility, some children may return to their regular eating and drinking patterns postoperatively, whereas others use alternative feeding systems. In preparation for surgery, any alternative eating and drinking techniques that may be required should be reviewed. Parents should obtain and learn how to use any needed feeding equipment. Typically, breastfed infants can resume breastfeeding 4 hours after surgery. Dependent on the type of surgery and facility, some bottle-fed infants may return to their normal bottle system, whereas others may require feedings through a spoon, dropper, syringe, or specialty bottle while the surgical site recovers. After surgery, smaller and more frequent meals are recommended. Pacifiers, forks, straws, sippy cups with hard spouts, or no-spill valves should be avoided. Foods that are hard or crunchy and have seeds, pulp, or skin should also be avoided. Parents must be taught the signs and symptoms of dehydration and malnutrition before discharge.

 

Opportunities to Practice Care

Early and repeated educational interventions increase confidence and bolster support (Sreejith et al., 2018). Parents talk about the importance of being provided the opportunity to practice their child's care needs. As they felt mastery over new tasks such as feeding, stress decreases, and parents feel prepared to care for their child's needs. This sense of mastery served as a positive coping mechanism for families to manage anxiety and stress. Parents report that adopting an optimistic outlook, actively engaging in problem solving, utilizing peer support resources, and participating in interdisciplinary care meetings fostered confidence and eased anxiety (Sischo et al., 2016).

 

The Importance of Peer Support

Parents develop a shared sense of social identity when they connect with other parents of children with congenital disorders. Examples of supportive organizations for families are the Cleft Lip and Palate Association, ACPA, and Cleftopedia: for Mommies by Mommies. These resources allow parents to share their journeys and triumphs as well as challenges throughout the various stages of life with a child with cleft lip/palate. Most of the services offered through the organizations collaborate nationwide with families. These support groups provide guidance and connections beyond the healthcare team. Efforts centered on connecting families with strong social support networks and peer support groups foster a sense of well-being and confidence. Parents can utilize peer support to share experiences and ask questions in a safe environment. This support also provides insight into future challenges and in the development and adoption of positive coping mechanisms (Stock & Rumsey, 2015). Nurses centering their efforts on fostering opportunities for families to connect can help families find networks that serve as safety nets. As time progresses, these networks provide space for families to support others.

 

Finding a secure source of social support eases the burden and worry of caretaking. New parents can connect with parents further along in the cleft journey. Feelings of hope are experienced as parents see one another successfully coping and supporting one another through the process of raising their children (Lemacks et al., 2013). This support provides families the opportunity to gain insight and an improved understanding of the journey ahead. Parents reported that support from others going through the same experience was vital in the early days of diagnosis and treatment (Stock & Rumsey, 2015).

 

Conclusion

Caring for children with cleft lip/palate can be stressful for parents. Parents should be encouraged to utilize the expertise of their interdisciplinary team to ease fears around surgeries, hospitalizations, feeding, and nutrition; connect with other parents and children; and discuss future planning and care for surgical interventions. Families can connect with interdisciplinary care teams in their area by utilizing the ACPA family services website, http://www.cleftline.org.

 

Resources

The ACPA houses a variety of helpful resources and information for parents and individuals. Their information can be found at http://www.cleftline.org. Smile Train has numerous resources with news, counseling, support groups, options for financial support, and much more and can be found at https://www.smiletrain.org. The Cleft Lip and Palate Association, http://www.clapa.com, is based out of the United Kingdom and has medically reviewed teaching materials, feeding devices, and research for healthcare providers. Cleftopedia: for Mommies by Mommies is a website that offers blogs, support, suggestions, and products at http://www.cleftopedia.com. Additional websites for information about cleft lip/palate include the following:

 

* https://www.changingfaces.org.uk/

 

* https://www.faces-cranio.org/

 

* https://www.marchofdimes.org/

 

 

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