cond 472 PPT 7 Pt. 1 Intro to Cleft Lip and Palate, Psychosocial Issues, Treatment

Orofacial clefts

These are elongated openings resulting from failure of parts to fuse early in prenatal development 

Demographic of cleft lip and palate

These are the two most frequent congenital malformations and are inconsistent in epidemiologic studies

Manifestations of cleft in articulation

Altered physical structures of the vocal tract (lips, teeth, hard and soft palate), disrupt the ability to build and direct oral air pressure, causing:

• bilabial incompetence

• labiodental and dentalization sounds

• sibilant distortions

• weak pressure consonants

Manifestations of cleft in resonance

Abnormal air and sound movement through the oral, nasal, and pharyngeal cavities

• Hyponasality

• Hypernasality

Manifestations of cleft in voice

May include air leakage, changes in nasality, breathiness, vocal strain and tension, and hypofunctional voice quality.

Manifestations of cleft in language

Communication difficulties may reduce their willingness to participate, while frequent surgeries and certain syndromes may also affect cognition.

Palatal clefts and insufficiencies

• High risk for speech/language delays

• High risk for language delays

• High risk for middle ear disease with cleft palate 

• VPI- velopharyngeal insufficiency 

  • Structures themselves 

• VPI- velopharyngeal incompetence 

  • How physiology works 

Causes of cleft palate and lip

• Teratogenically induced 

• Chromosomal or genetic disease 

• Mechanically induced

• Maternal age

Family Issues

• Initial shock and adjustment 

• Family support

• Maternal Responsiveness 

Family Issues: Initial shock and adjustment 

• Mourning the anticipated child

• Adjusting to the new situation 

• Resolution

Family Issues: Family support

It is really helpful when the extended family comes together to help the child with cleft.

It is very harmful when the extended family divides over the child with cleft, fighting over who is to blame for the situation.

Family Issues: Maternal responsiveness

• Some studies indicate mothers are less responsive

• Some studies indicate increased bond and protectiveness 

Family Issues: Mother’s report

• Higher stress levels regarding

  • Parental stress correlates with the child’s adjustment 

  • Marital conflict 

  • Concerns for their own competence 

  • Feeding issues 

  • Other children

  • Medical issues 

  • Extended family issues 

  • Societal issues 

Parent education and guidance

• Nurses, doctors 

• Mentor parents

• Focus on education

Parent education and guidance: Nurses, doctors

These people are the parents first contacts. The SLP’s job here is to educate them so they can educate the parents about cleft.

Parent education and guidance: Mentor parents

These people are great for comparing experiences, feelings, and sharing solutions to daily challenges

Parent education and guidance: Focus on education

Emphasize what is “right” with the child while avoiding talking about their abnormalities to put the parents at ease.

“Chronic Medical Condition”

This is a health problem that lasts for one year or longer, requires ongoing medical care, and can limit daily activities. Families who are dealing with cleft also struggle with:

• feelings in all aspects of the system

• demands of the system

• family and parental considerations

“Chronic Medical Condition”: Feelings surrounding:

• Reminders of abnormality

• Decreased efficacy as a parent 

• Trust issues 

• Prolonged hospitalization 

“Chronic Medical Condition”: Demands of the system

• Paperwork

• Insurance companies

• Expenses 

• Frustration 

“Chronic Medical Condition”: Family and parental considerations

• Family members' response to the child 

• Parental agreement over the medical decisions 

• Parent/child agreements as the child gets older 

• Parent with history (hx) of CL or CP 

School issues: Teachers

These people can lack of experience with cleft lip/cleft palate and can be unsure how to proceed with the child.

School issues: School performance without syndromes

The person with cleft has an average overall IQ and a lower than average verbal IQ

School issues: School performance with syndromes

The person with cleft has a lower than average IQ.

Other areas of school issues

People with cleft can have specific learning disabilities too. There can be ADD mismanagement when not considering a language base, reading disabilities, rapid naming deficits, and verbal expression deficits.

School issues: Social interactions in infancy

During this period, the parents take responsibility for answering the questions

School issues: Social interactions in preschool age

During this period, well-meaning adults and other kids ask questions about the cleft.

School issues: Social interactions in school age

During this period, the person with cleft has fewer friendships that others their age because their hearing and speech deficits add to interaction challenges. They also tend to be more insecure about their appearance during this time.

School issues: Social interactions in older teens

During this period, the person with cleft typically suffers from over-inhibition and shyness.

School issues: Teasing

Factors contributing to this are:

• Appearance 

• Child’s personality

• Child's response

• Adults response

School issues: Self perception

Studies beginning at school age have found people with cleft have a negative self-concept. They are less acceptable to their peers, less socially competent, and less satisfied with their appearance than their peers. They also report being sad or angry about it. The severity correlates with their overall level of adjustment.

Societal issues: Physical attractiveness - attractive vs. unattractive.

Research on cultures indicates that this is highly dependent on facial features and body shape, and it begins in infancy, with additional studies rating beauty with goodness.

Societal issues: Speech quality

This impacts the judgement of others who correlate good speech with positive characteristics.

Societal issues: Hearing impairment

This triggers the judgment of others in the sense that there are likely communication barriers and misunderstandings due to the inability to efficiently receive information during verbal communication.

Societal issues: Stigma

Due to the negative and unfair beliefs and stereotypes of people with cleft, they are often discredited and objectified by people based on differences from cultural standards.

Team approach to treatment: Types of teams

• Multidisciplinary

• Interdisciplinary 

• Transdisciplinary 

Types of teams: Multidisciplinary

These are groups of professionals from different specializations or fields working independently to provide care.

Types of teams: Interdisciplinary

This is a group of professional from different specialized fields who work interdependently to achieve their goals. They incorporate collaboration, communication, cooperation, and create a joint plan for the care of their patient.

Types of teams: Transdisciplinary

These are professionals from different fields who work together for a period of time and understand each discipline.

Compilation of a treatment plan

There are basic standards for membership as a cleft or craniofacial team member that were established by the ACPA in 1996. A professional must meet:

• minimum standard for team membership

• minimum evaluations per year (50)

• attend regular meetings and CEU

• categories of teams available for rural, less populated areas

Members of the team

• Child, parents, or family 

• Team coordinator 

  • Usually a nurse or other professionals

  • Team representative

Members of the team: Team representative

This person is responsible for:

• Planning meetings and scheduling 

• Compiling recommendations into a comprehensive team report 

• Counseling families 

• Providing education for families 

• Ensuring follow-up on recommendations from each team member 

Members of the team: Medical

• ENT 

• Geneticist 

• Pediatrician 

Members of the team: Medical ENT

This team member:

• Monitors ear function 

• Assesses structure of the upper airway 

• Treated abnormalities 

  • Adenotonsillar hypertrophy 

    • Abnormal enlargement of both the palatine tonsils 

  • Pharyngeal masses 

    • Abnormal swelling, growth, or lump located in the pharynx

• Assess for syndromes 

• Counseling 

• Risk recurrence 

Members of the team: Pediatrician

This team member:

• Cares for the overall health and growth 

• Determine physical preparedness for surgery

Members of the team: Surgical

These team members include:

• ENT

• Oral surgeon 

• Plastic surgeon 

Members of the team: Surgical ENT

This team member does nasal and oral repairs and reconstructions

Members of the team: Oral surgeon

This team member does bone grafts for the palate and normalizes the occlusion between the maxilla and mandible

Members of the team: Plastic surgeon

This team member is responsible for:

• Surgical repair of the lip, palate, and facial abnormalities 

• Correction of velopharyngeal dysfunction 

• Cranial surgery 

• Bone grafts 

• Orthognathic surgery 

• Overall aesthetics, feeding, and speech function

Members of the team: Dental

• Pediatric DDS (Pedodontist)

• Orthodontist

• Prosthodontist 

Members of the team: Pediatric DDS (Pedodontist)

This team member is responsible for:

• General dental care 

• Prevention of cavities and decay; preserving all teeth 

• Working with malocclusions

Members of the team: Orthodontist

This team member is responsible for:

• Improving occlusion 

• Aligning misplaced teeth 

• Improving function and aesthetics 

Members of the team: Prosthodontist 

This team member is responsible for:

• Restoration of natural teeth

• Replacement of missing teeth 

• Prosthetic devices  

Members of the team: VIP’s

• Audiologist 

• Speech therapists 

Members of the team: Audiologist 

This team member works closely with ENTs and assesses hearing function

Members of the team: Speech therapist

This team member assesses and provides therapy and counseling for communication and swallowing

Members of the team: Members of the Team: Psychological 

• Psychologist 

• Social worker 

Members of the team: Psychologist 

This team member assesses the psychosocial needs of child, parents, family and determine emotional preparedness for surgery 

Members of the team: Social worker

This team member assists the family with any problems/situations that arise, coordinates appointments, helps with insurance companies, and stress management

Team Process

This begins shortly after birth with counseling, feeding , and monitoring for airway problems, and continues through the growth period,18-21 years old.

Team process: Evaluation

This is when team members meet to discuss post-evaluation to determine a treatment plan

Treatment plan

This is determined by recommendations, concerns, needs, goals of the patient and family, and the limitations and restrictions of the payer source.

Advantages of the team approach to treatment

• Quality of service 

• Evaluation of the WHOLE child

• Comprehensive 

• Cost effective 

• Better follow-up and continuity of care 

• Improved education and resources 

• Research availabilities 

Disadvantages of the team approach to treatment

• Individuals with “status” may affect the outcome of the treatment plan

• “Turf” issues 

• Differences in philosophy 

Resource considerations of the team approach to treatment

• Finding CPT or CFT 

  • Teaching or pediatric hospitals 

  • ACPA

• Funding 

  • Private insurance companies 

  • Federal and state aid

    • Medicaid 

  • Private nonprofit agencies 

    • Shriners 

Challenges to the team approach to treatment in the future

• Managed care 

• Insurance company restrictions 

• Location of specialists