Children with disabilities

Question 1

What is the definition of disability?

Answer 1

“Disability is the result of the interaction between a person’s functional limitations and barriers in the environment, including social and physical barriers that make it harder to function day-to-day”

disability is a social disadvantage that an unsupportive environment imposes on top of an individual’s impairment

Question 2

What is congenital abnormality?

Answer 2

Also known as birth defects, congenital disorders or congenital malformations – structural or functional that is present at birth – may be identified prenatally, at birth or later in life

Question 3

Define impairment

Answer 3

A loss or abnormality of structure or function

Question 4

Define development disability

Answer 4

Any cognitive and/or physical disability that is manifested before age 22yrs and is likely to continue

Question 5

Define chronic illness

Answer 5

Limit in the amount or kind of activities that one can do due to the presence of one or more chronic health conditions that have lasted or are expected to last six months or more and that have been diagnosed by a health professional

Question 6

Define medically complex

Answer 6

HB and SickKids are using the CCKO (Complex care kids of ontario) definition of medical complexity- under 18 years old and meet at least one criterion from each of the four conditions: technology dependent and/or users of high intensity care, fragility, chronicity, and complexity (e.g. involvement in at least 5 healthcare teams).

Question 7

What is unique about Nursing and Client and Families with Special Needs?

Answer 7

• Different forms of communication
• Liasoning between communities
• More care giver support needed
• Checking in on parents
• Strong discharge teaching,
• Transition to adulthood – it’s a different world
• Have to think outside traditional care
• Those wit a lot of complex medical issues –higher risk for medical issues ie/ sepsis, bed sores (if immobile)
• Abuse can present too – a lot for families to take on
• Families and parents are the expert – a lot of kids can’t communicate
• Care for the other children in their family too

Question 8

What challenges/stressors may families face?

Answer 8

• Feeding challenges
• Financial supports
• In and out of hospitals – coordinating health care services
• Balancing other family, friends, personal health and other obligations
• Social supports, a lot of in and out of the hospital
• A lot of medications – not all covered
• Resizing wheelchair sizes
• Changes in muscle tone, bone deformities and progress with age – leads to surgeries

Question 9

What is the impact of disabilities in children on families?

Answer 9

• 45.5% parents report stress
• 38.4% reduced work hours
• 64% mothers’ work impacted vs 8.3% fathers
• 1 in 5 children live in low income household
• 30.3% report financial difficulties
• Both parents cant work full time anymore
• A lot of costs with the medical equipment too, as well as transportation
• 60% parents reported being in a previous relationship
  Can impact marital relationships – frequent in and out
• 76% parents reported child’s disability led to their separation/divorce

Question 10

What are some of the stressors familes have to cope with?

Answer 10

Diagnosis of the condition
- Sometimes this takes a long time and may even be such a rare illness with unknown outcomes – frustration for family
Developmental milestones
- Usually milestones expected to be met, find their diagnosis due to these needs not being met
Start of schooling
- Where will they go, how to get there, assistance, advocating
Reaching the ultimate attainment
- Death of child or luming potential of the child
- Not holding the child back but also not pushing too hard that they become frustrated

Question 11

How can nurses assist family members with coping methods and managing stress?

Answer 11

• Respite – parents can take a break for a weekend
• Refer to resources (mental health), support groups for parents, client groups
• Different education
• Family centered care approach
• Teaching- to address stressors such as impact on family, fear of child dying, finance burden by providing emotional support and anticipatory guidance
• Supporting siblings
• Seeking support systems – parent to parent support, RESPITE services

Question 12

How can nurses support siblings?

Answer 12

• Promote healthy sibling relationships
  Avoid comparisons, teach siblings way to interact, respect sibling reluctance
• Help siblings cope
  Actively listen to siblings and let them know their feelings are valued
• Involve siblings
  Find ways to realistically involve siblings in their care,

Question 13

What is a strengths-based approach?

Answer 13

The primary focus of a medical model (dominate in our healthcare system) is to understand what is not working (what is wrong) and how to correct or fix it (treat it). In contrast, the primary focus of SBC is to understand what is working, what the person is capable of doing, as a means to minimize symptoms and find solutions to help the person recover and heal.

• Maximize strengths and abilities!
• Developmental focus
  Focusing on the child’s developmental level rather than the chronological age or diagnosis, emphasizes the child’s abilities and strengths rather than disabilities
• Empowerment
  Recognize, promote, and enhance competence

Question 14

How can a nurse help reestablish a normal pattern of living?

Answer 14

• To maximize possibilities and promote independence given any disability. For example, attending school, pursuing hobbies and recreational interests
• Nurse can embrace strengths and life skills, being supportive in their treatment, and include family in all aspects of care to improve self-esteem and build confidence and competence
• Inpatient – gradual process to transition home – care by parent, weekend visits, then transition home (with or without nursing support)

Question 15

What thoughts, concerns, or suggestions do you have when striving to create an environment that promotes hope and healing for this population?

Answer 15

• Avoiding assumptions and preconceived idea
• Promote child’s optimum development
• Encourage play
• Teach self-care skills
• Provide means of communication
• Learning about their strategies e.g. for a parent states that their child engages in in self-injurious activities (such as head banging, self-biting), the nurse should inquire about what events precipitate them and techniques parents use

Question 16

How can you communicate with non-verbal patients?

Answer 16

• Speech language pathologists, OTs, different roles to help non-verbal client speak
• Sometimes just with the click of their pinky can communicate through a computer system
• Sometimes point to letters, yes or no
• Depends on where injury is, sometimes only able to say yes and no
• When we do communicate with children this way – don’t make assumptions of what they want to say, take time – we need to slow down, don’t want to take away their voice, don’t want to override them with our abilities
• Yes = 2 blinks, no = 1
• Look at what they can do, ,don’t take the voice away

Question 17

Owen is a 7 year old boy with Autism Spectrum Disorder. You admit Owen to your unit with failure to thrive (not reaching their milestones, not having enough intake ie/ not reaching enough weight and growth, sometimes a result of if they have reflux, a cardiac issue. Very tiny). The emergency report states that Owen is hypersensitive and he hits himself when he becomes frustrated or anxious.

You just received a new order from an MD that Owen is due for bloodwork tomorrow morning. How can you prepare Owen for bloodwork to help make it successful and supportive of Owen’s needs?

Answer 17

• Do role play with pictures, do it on the stuffed animal, prepare him
• Make a schedule for him and let him know why it is happening
• Setting up a reward for him so there is something to look forward to – involve the parents in this
• Often they do well with their schedule – but sometimes they don’t. ask what they think will work best for the child
• Don’t want to assume what is best for them – talk to them
• Find out what was successful in the past
• Being flexible and accommodate

Question 18

What is Duchenne’s Muscle Dystrophy?

Answer 18

DMD is most common inherited myopathy
Muscle weakning

Causes progressive muscle weakness

Located on the X chromosome

Inherited in an X-linked recessive pattern

Question 19

What are some of the complications with DMD?

Answer 19

• Most boys lose the ability to walk by 7 – 12 years
• Loss of respiratory function typically in 2nd decade, progressing to respiratory failure in mid teens – often require mechanical ventilation
• Scoliosis develops usually 3 – 5 years after they need to use their wheelchairs full time – most undergo spinal alignment surgery
• Severe weight loss may occur in some boys during mid to late teens requiring supplemental GT feedings
• Cardiomyopathy and/or cardiac arrhythmia
• Death occurs in early adulthood secondary to respiratory or cardiac failure – seen more at late 30s now

Question 20

What would this mean for a family with a child diagnosed with DMD?

Answer 20

• Fear of what is to come, many unknown
• Some medications that can slow down symptoms that can come
• Upcoming inability to walk – wheelchair
• Social implications – friends, stigma etc.
  Form social group and supports
• Frequent hospital visits
• Surgeries
• Medications
• Enteral feeding?
• Coping with a progressive, degenerative disease

Question 21

How could a nurse support a family with a child diagnosed with DMD?

Answer 21

• Talk about goals for quality of life
• Asking them if they have any questions
• An entire team will be supporting the family
• Preparing the family and let them know they will meet people who will support them for different areas of life and health
• Parents get frustrated when have to retell story – touchbase with who is coming in – summarize what you know and tell them to add in if they forgot anything

Question 22

What kind of support would families with a child with a disability require?

Answer 22

• Psychosocial support
• Mobility aids
• Nutrition counselling
• Medical management
• Orthopaedic management
• Ventilation counselling
• Transition counselling
• ADL equipment
• Funding support
• Many more!