3018 wk 6 lec

Chronic illness in Childhood and Adolescence

Refers to a condition that interferes with daily function:

• For more than 3 months in a year

• Causes hospitalisations of more than 1 month in a year

Considerations in Chronic illness for children

Social Determinants of Health

• Income

• Education

• Employment

• Working / life living conditions

• Food security

• Housing

• Social considerations (e.g. friends, connections etc.)

• Access to healthcare services

Common Chronic Conditions in Childhood

Most common = Asthma

• T1DM

• Childhood Cancers

  • Most common = Leukaemia

• Conditions of birth

  • Congenital

  • Chromosomal

  • Genetic

• Mental Health disorders

  • ADHD

  • Anxiety disorder

  • Eating disorders

→ Suicide is the #1 cause of death amongst individuals aged 15 - 24

+ Premature birth

Congenital birth defects

• Hypospadias (refer to image)

  • penile birth defect - where the hole is at the bottom instead of the tip

• Neural tube defects

  • brain, spinal cord, spine

• Cleft lip or cleft palate

  • top lip doesn’t join together / palate has a slight cleft, or is not fully joined together

Chromosomal Birth Defects

1) Trisomy 21 (Down’s Syndrome)

2) Trisomy 13 (Patau Syndrome)

3) Trisomy 18 (Edward’s Syndrome)

Genetic Defects

• Cystic Fibrosis - autosomal recessive genetic condition

• Sickle Cell Anaemia

• Spinal Muscular Atrophy

Childhood Disability

3 Dimensions of Disability

1) Impairment

eg. literal impairment, both functionally or structurally

2) Activity limitation

eg. Difficulty seeing, hearing, walking

3) Participation restriction

eg. restricted in ability to work, engage socially

Medical Model of Disability

Disability is a result of pathology and impairment

• Disability is framed as a “problem”

• Intervention focuses on treating the individual to be “normal” like society

Social Model of Disability

Disability disables people by FAILING to accomodate for their differences

• Differences are socially accepted as “outliers” and “odd”

• Leaves disabled individuals as segregated and excluded

• Intervention focuses on changing social attitudes and behaviours towards disability

Intellectual and Developmental Disability

Main example = Autism

Significantly reduced ability to understand new or complex information

• Reduced ability to learn and apply new skills

• Reduced ability to cope independently

Greatly affects social development and personal development into adulthood

→ Social supportive factors can influence the child’s participation and feelings of inclusion in society

Complex Motor Disability

Primary problem is disorder of movement

• Complexity comes with movement disorder + other associated exacerbating factors

  • eg. sensory deficits, learning problems etc.

Cerebral Palsy

A umbrella term for non-progressive neurological conditions that impact motor function

• Stems from abnormalities or injury to the brain

Associated impairments under Cerebral Palsy include:

- Intellectual disability

- Epilepsy

- Visual and hearing impairment

Muscular Dystrophy

A broad term that describes the breakdown and cause of muscles to become very weak.

• Progressive, irreversible muscle weakness

• Muscles over time become replaced by fat deposits, weakening mobility and overall muscular function

Impact of Chronic illness and disability on Children

• Spend 3x as many days ill and absent from school compared to those without chronic illness

• All chronic conditions have the capacity to affect the development and growth of a child

  • Impacted emotional wellbeing

  • Affected social health and growth

  • Impacted education

• May face barriers to quality healthcare

Impact of Chronic illness on Family

• Uncertainty about their child’s future

• Social isolation - reluctance to leave their child alone

• Missed days from work to care

• Financial losses

• Physical challenges - stress related illnesses and self-neglect for child

• Emotional challenges - loss and grief

• Complex management of the family life

• Impact towards marriage and family dynamics

Family responses after diagnosis

Go through a period of “normalisation” following a diagnosis

Positive normalisation:

• Acknowledge condition

• Accept potential changes to lifestyle that will occur

• Focus on living with and normality

• Active engagement in parenting and stabilising family

• Development of a treatment regime that suits the family

Signs that the period of “normalisation” is challenging

• Emphasis on their child as “different”

• Changing parental style solely due to this difference

• Illness is the focus of the family → becomes a root problem to many family issues

• Treatment is treated as a burden to the family

Family and Child Centred Care

• Forming partnerships between clinicians and families

• Supportive and responsive to needs of family

• Knowledge sharing and open communication

• Coordinated care around the specific needs of the family and child

• Shared decision making

Chronic illness in Adolescence

Adolescence = the time for achieving independence

• Chronic illness can impact the capacity of an individual to successfully function and live independently

Impacts of Chronic illness on adolescent development

Physical

• Puberty delay

• Weight management

• Physical signs of illness present → may impact mental health and self-perception

Psychosocial

• Increased dependence on caregiver

• Stigma

• Social exclusion

Cognitive

• Potentially impacted cognition

• Learning difficulties due to multiple abscences during school

Family

• Impacted family time

• Financial challenges

• Parental stress, frustration, concern

Impacts on the capacity for independence of Adolescence

• Parental overprotection

• Added treatment support needs - increased demand

Transition to Adult Healthcare

A milestone of becoming an adult in the healthcare world

What is transition in healthcare?

Purposeful, planned movement of adolescents with chronic medical conditions from child-centred to an adult oriented healthcare system

(generally 14yrs - 25yrs, depending on the appropriateness of starting transition)

• It is gradual and designed for the child

• Early intervention / prevention model

• Supportive and empowering

• Once transfer occurs, paediatric systems are still supportive and involved in the familiarising process

Challenges for clinicians during child transition

• Letting go of the child

• Timing - when is it most appropriate?

• High lost of follow-up rate once in adult settings

• Some adult clinicians may find it challenging and uncomfortable in managing young adults

Challenges for Adolescents

• Different modes of care in adult healthcare

• Timing of appointments with numerous different specialties

• Language and specialist discussions

• Interpretation of their transition being a means of rejection due to their age

Challenges for Parents and Carers

• Abandonment

• Fears of being perceived as “difficult” in advocating for their child

• Anxiety and stress in navigating a more complex system

Principles of Transition Care******

1) Systematic and formal transition process

2) Early preparation

3) Identify and set a transition coordinator

4) Good communication between child, family, and clinicians

5) Individualised transition plan

6) Empower, encourage, and support

7) Follow up and evaluate (often lost)