Robyn Smith Department of Physiotherapy UFS 2012

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 family’s response to illness • Discuss pertinent ethical issues pertaining to child patient

3. 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

4. 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

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: • Family’s response to the illness • Families ability to cope with illness • Cultural response to illness

13. Barriers to providing child and family-centered 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 conflictwith healthcare service provider

14. Barriers to providing child and family-centered 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

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. We need to act with become cultural aware and -sensitive during our interaction with the child and their parents • 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 • Ask patient and family to recall information or demonstrate the skills taught • Empower individuals and families encouraging independence

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 voluntaryand 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 • 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 is a CONTRACT between the child/parent and service provider and should contain:

28. Informed consent and children 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 • 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)

29. What is a child giving assentfor 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-protections/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/PolicyDocuments/C-ClinicalTrialManagement/Assent%20of Retrieved on the 08 November 2010