Family-Centered Care –
A modern day approach to
Paediatric Physiotherapy &
Ethical considerations when
working with children
Robyn Smith
Department of Physiotherapy
UFS
2012
Objectives
• Familiarise you with the latest approach to paediatric care in
the healthcare setting, and be able to explain approach to a
colleague, child and/or parent
• Understand and familiarise yourself with the fundamental
differences of working with children
• Explain how cultural diversity may impact on a family’s
response to illness
• Discuss pertinent ethical issues pertaining to child patient
Family-centered care–a package deal
• Model first presented in early 1980’s – a clear
departure from the classic medical model for care
• Philosophy recognises that the family as a whole
plays a vital role in ensuring the well-being of its
members
• Child is dependant on a caretaker. Package deal for
healthcare professionals.
• Have to interact with both the child and the caretaker
as well as the extended family which may include
siblings, grandparents and even aunts etc
Family-centered care–a package deal
• As a physiotherapist need to provided individualised,
child-friendly services to the child, their caretakers and
their extended family
• Widely recognised throughout the world and in the
literature as the most appropriate model to be used
when providing healthcare services to children
Family-centred model
Interdisciplinary
Doctor
approach
Psychologist
Physiotherapist
Child &
parents
Social Worker
OT
Speech
Therapist
Dietician
Traditional medical model
Doctor
Healthcare
professionals
Child and family
Interdisciplinary medical model
Child &
family
Team
members
Joint decision
making & goal
setting
regarding care
What do we mean when we say
we use a child- or family-centred
approach to our services?
Family-centered care.
Core values for health professionals…..
• Respecting child and their family
• Respect racial, ethnic, cultural and socio-economic diversity
• Recognise the diversity in family structure and functioning
• Recognise the right to choice, and role in facilitating choice
for the child and their family
• Respect and support the choices as made by the child and
their family (ethical right to autonomy or selfdetermination)
Family-centered care.
Core values for health professionals…..
• Providing support to the child and family
• Collaborate with the family in the care of their child
• Empowering the child and family to discover their strengths,
build confidence and make choices regarding their healthcare
What barriers can hinder childand family-orientated service
provision?
Being able to deliver child
centered services is affected by
3 key factors:
•
•
•
Family’s response to the
illness
Families ability to cope with
illness
Cultural response to illness
Barriers to providing child and familycentered care
1. Family’s response to the illness and/or disability
• Illness of a child stressful experience for family
• Family members may experience a wide range of
emotional responses to illness of a child
• Response to illness influenced by education and our
previous experience with illness
• Responses can result in conflict with healthcare
service provider
Barriers to providing child and familycentered care
1. Family’s response to the illness and/or disability
• Different families have different responses to the illness of a
child




Denial or disbelief
Acceptance
Guilt
Anger
• Role conflict – especially in hospitalised children, parent(s)
often feels excluded as if their role as a parent has been taken
over by health care professionals
Barriers to providing child and familycentered care
2. Inability of a family to develop coping strategies.
Family fails to:
 balance illness with other family needs (negative
impact other siblings and parents relationship),
 develop communication competences
(feelings/needs),
 maintain clear family boundaries,
 achieve family flexibility,
 maintain social integration (become isolated),
 cannot establish collaborative relationship with
healthcare providers (not living up expectations)
Barriers to providing child and familycentered care
3. Cultural diversity
• Culture = learnt patterns of behaviour
• View on illness or disability is influenced largely by our ethnicity,
nationality, socio-economic status, education, age, religion and past
experiences with illness or disability
• Cultural differences in interpreting disability
• Parenting styles may also differ (view on
discipline/routine/stimulation)
• Culture also influences parental expectations
So as a healthcare professional
how do I provide a child and
family centred service?
 Remain non-judgmental during interactions
 Involve the family in decision making process
 Ask simple, understandable questions
 Simplify instructions
 Repeat information as many times as needed
We need to act
with become
cultural
aware
and -sensitive
during our
interaction
with the child and
their parents
 Give the same message in various ways
 Organise information provided –give most
important information first
 Use audio-visual aids
 Involve the family when learning and reinforcing
information
 Ask patient and family to recall information or
demonstrate the skills taught
 Empower individuals and families encouraging
independence
Family-centered care
As health care professionals we should promote:
•
•
•
•
Sharing of knowledge and information
Collaboration in the care of the child and their family
Encourage and facilitate parent support groups
Involve the family in the planning, delivery and evaluation of
your services
• Use family feedback to improve or change your service where
indicated (quality assurance and improvement measure)
So what are the benefits of the
models implementation?
Benefits for the child and family….
• Enhances the parents confidence in their roles
(empowerment)
• Improves the child and family outcome
• Improves the family satisfaction in the service
Are there special ethical
considerations to be taken into
account when working with
children?
4 Principle Ethical Rules
that govern clinical practice
Intentions
Actions
Informed consent .......
• Is an exercise of a voluntary and an informed choice by a
parent /and child who has the capacity to give consent, and is
based on the availability of adequate information:
Aim is to ensure that
the parent/child is an
informed participant in
their healthcare
What issues needs to be addressed when
gaining consent from a parent/and child?
Procedures or treatments need to be explained
and the expected benefits & risks
Alternative treatments, risks thereof and
benefits
•Anticipatory expenses or costs
•Voluntary and consent can be withdrawn for
assessment or treatment at any point
•Ensure confidentiality
Forms of consent
• Verbal(most of time? Stand up in court of law)
• Written (recommended)
What must be in the consent form
Informed consent is a CONTRACT between the child/parent and
service provider and should contain:
Dated by the parent or legal guardian/ and
child if applicable
Signed by the parent or legal guardian/and
child if applicable
Signed by the service provider
Witnessed
Informed consent and children
• Informed consent means the approval of the legal representative of the
child and/or of the competent child for medical interventions following
appropriate information being provided
• Children older than 12 years can give consent for medical procedures and
their healthcare choices (South Africa children under 13 year fall under
paediatrics)
The new children's Law in SA states
that a legal opinion (acting in the best
interests of the child) can be obtained
by a healthcare professional to
override a parents decision if it is
deemed that their decision is not in
best interests of the child e.g. parent
who is a Jehovah’s witness refusing
their child a life saving blood
transfusion
What is a child giving assent for
medical treatment?
• Healthcare professionals should
carefully listen to the opinion and
wishes of children who are not able
to give full consent.
• All children have a right to receive
information given in a way that they
can understand and appropriate to
their developmental level.
• Child needs to indicate their assent
or dissent be it verbal or nonverbal.
Assent =
agreement to a
proposed plan of
action
Children giving assent to treatment
I agree to having
physiotherapy
treatment
I do not want to have
physiotherapy
treatment
References
• Spearing, E.M. 2008. Providing family- centered care in Pediatric
Physical Therapy. Tecklin, J.S. (Eds) in Pediatric Physical Therapy.
Lippincott, Williams & Wilkins. Baltimore
pp1-13
• Parexel. 2006. Guidelines for good clinical practice in the conduct of
clinical trials with human participants in South Africa.
• Pennsylvania State University. 2010. IRB Guideline I - Parental
Consent and Child Assent.
available online at:
http://www.research.psu.edu/policies/research-protections/irb/irbguideline-1
References
• Griesel, D. 2010. Ethical issues in child neurology and child
development (PANDA lecture unpublished)
• Swedish Medical Centre. 2008. Assent of children to
participate in clinical research.
available online at:
http://www.swedishmedical.org/research/PolicyDocuments/
C-ClinicalTrialManagement/Assent%20of
Retrieved on the 08 November 2010