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Family-Centered Care

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Baltimore pp1-13 Parexel. 2006. Guidelines for good clinical practice in the conduct of clinical trials with human participants in South Africa. – PowerPoint PPT presentation

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Title: Family-Centered Care


1
Family-Centered Care A modern day approach to
Paediatric Physiotherapy Ethical
considerations when working with children
  • Robyn Smith
  • Department of Physiotherapy
  • UFS
  • 2012

2
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
    familys response to illness
  • Discuss pertinent ethical issues pertaining to
    child patient

3
Family-centered carea package deal
  • Model first presented in early 1980s 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

4
Family-centered carea 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

5
Family-centred model
Interdisciplinary approach
6
Traditional medical model
7
Interdisciplinary medical model
8
What do we mean when we say we use a child- or
family-centred approach to our services?
9
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 self-determination)

10
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

11
What barriers can hinder child- and
family-orientated service provision?
12
  • Being able to deliver child centered services is
    affected by
  • 3 key factors
  • Familys response to the illness
  • Families ability to cope with illness
  • Cultural response to illness

13
Barriers to providing child and family-centered
care
  • 1. Familys 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

14
Barriers to providing child and family-centered
care
  • 1. Familys 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

15
Barriers to providing child and family-centered
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)

16
Barriers to providing child and family-centered
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

17
So as a healthcare professional how do I provide
a child and family centred service?
18
  • 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
  • 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
  • We need to act
  • with become
  • cultural
  • aware
  • and -sensitive
  • during our
  • interaction
  • with the child and
  • their parents

19
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)

20
So what are the benefits of the models
implementation?
21
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

22
Are there special ethical considerations to be
taken into account when working with children?
23
4 Principle Ethical Rules that govern clinical
practice
Intentions
Actions
24
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
25
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

26
Forms of consent
  • Verbal(most of time? Stand up in court of law)
  • Written (recommended)

27
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
28
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
Jehovahs witness refusing their child a life
saving blood transfusion
29
What is a child giving assent for medical
treatment?
Assent agreement to a proposed plan of action
  • 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 non-verbal.

30
Children giving assent to treatment
  • I agree to having physiotherapy treatment
  • I do not want to have physiotherapy treatment

31
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-pro
    tections/irb/irb-guideline-1

32
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/PolicyDocu
    ments/C-ClinicalTrialManagement/Assent20of
  • Retrieved on the 08 November 2010
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