1. TANI FORUM 2014 Exploring Concepts of “Care” Focus on Children & Families Ronelle Baker Allied Health Leader Child, Women & Family Services

2. Presentation Outline 1.Define care 2.Explore care obligations for health professionals, e.g. duty of care 3. Describe Family Centered Care 4.Describe key elements of care planning 5.Discuss some considerations for parents of children with ongoing, complex health and/or disability related needs

3. Defining Care Care; to feel concern or interest; provide care for; be in charge of, act on, or dispose of; be concerned with Reference: Dictionary.com Care; a socio-cultural value steeped in meaning Health professionals have additional obligations: –Duty to provide care (e.g. In an emergency situation) –Professional standards of care (Registration bodies e.g. Nursing Council etc.) –Duty of care (Service and individual levels)

4. Duty of Care Ethical and legal obligations “the legal obligation to safeguard others from harm while they are in your care, using your services, or exposed to your activities” Reference: Collins English Dictionary Service level > duty of care begins on receipt of referral

5. Duty of Care cont... Professional level > clinician/client relationship Responsibility for providing care is maintained until formally transferred Can be shared with someone else

6. Family Centered Care FCC is an approach to service delivery which encompasses planning, delivery and evaluation of health care for children and families Ensures care is planned around whole family, not just the child receiving care

7. Family Centered Care Key elements of FCC: –Every family is unique –Families are the constant in a child’s life –Parents/families are the experts on their child (abilities, needs, etc.)

8. Family Centered Care Recognises unique social context of child e.g. ways of coping, family ability to access resources, siblings, role of extended family, cultural values, language spoken, religious beliefs etc. Is based on collaboration with families in the planning of care for their child Produces better outcomes e.g. Improved engagement, planning and goal attainment

9. Family Centred Care However, some challenges with implementation and evaluation Some evidence does not fully support FCC model of care in modern context e.g. Sheilds (2010) notes evidence that parents can feel pressured to participate in care, there are role perception issues, workforce competence requirements, and the availability of parents who may be working is a factor.

10. Example of FCC Service Example below of implementation of FCC approach in a perioperative setting The perioperative period covers the duration of a surgical procedure Encompasess admission, anaesthesia, surgery and recovery

11. Perioperative Example Ref: Chorney, J.M. & Kain, Z.N. (2010). Family-centered Pediatric Perioperative Care.

12. Model of Family Centered Perioperative Care

13. Family Centered Care Planning Must meet service and professional standards Integrates all information from family and multi-disciplinary team members working with child Is developed in partnership with families, as a result of an assessment of need Describes the way services will be provided to meet identified needs Includes goals, actions & a review period

14. Family Centered Care Planning Considers unique family context and needs of whole family, in addition to the needs of the child requiring health/disability service Workforce requirements: skilled at communication, negotiation, goal setting, coordination & the ability to work with diversity Adaptability and flexibility to cope with changing needs Empowerment of families & building resiliency

15. Advance Care Planning A process for planning for future health care Relevant for permanent and/or palliative conditions Includes discussion about:  individual preferences for future care or treatments  what will happen when a person loses capacity or competency to make their own decisions  individual beliefs and wishes around death and dying

16. Parents as Carers Parents – altered role title “family carer” Grief / adjustment and coping Overwhelming range of health professionals/services Family stress / impact on siblings / parent wellness / parental separation Vulnerability of disabled children

17. Parents as Carers Challenging transitions – e.g. developmental, educational etc. Life planning – e.g. ageing parents

18. Parents as Carers Forms of support include:  Access to health and disability services  Condition specific support groups  Funded out of home or within home respite  Carer Support subsidy  Child disability allowance

19. Parents as Carers Generic support networks include:  Carers NZ www.carers.net.nz  Complex Care Group www.complexcaregroup.org.nz  Parent 2 Parent www.parent2parent.org.nz

20. References Advance Care Planning: A guide for the New Zealand health care workforce. (2011). Ministry of Health. www.moh.govt.n.z CanChild Centre for Childhood Disability Research. http://canchild.ca/en/ Chorney, J.M. & Kain, Z.N. (2010). Family-centered Pediatric Perioperative Care. Anesthesiology. 112(3), 751-755. doi: 10.1097/ALN.0b013e3181cb5ade Sheilds, L. (2010). Questioning Family centered care. Journal of Clinical Nursing, 19, 2629–2638. Writing Good Care Plans: A good practice guide. (2012). Derbyshire Healthcare. NHS Foundation Trust, United Kingdom.