TANI FORUM 2014

Exploring Concepts of “Care”

Focus on Children & Families

Ronelle Baker

Allied Health LeaderChild, Women & Family Services

Presentation Outline 1. Define care2. Explore care obligations for health

professionals, e.g. duty of care3. Describe Family Centered Care 4. Describe key elements of care planning5. Discuss some considerations for parents

of children with ongoing, complex health and/or disability related needs

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)

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

Duty of Care cont...• Professional level > clinician/client

relationship• Responsibility for providing care is

maintained until formally transferred

• Can be shared with someone else

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

Family Centered CareKey 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.)

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 outcomese.g. Improved engagement, planning and goal attainment

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.

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

Perioperative Example

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

Model of Family Centered Perioperative Care

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

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

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

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

Parents as Carers• Challenging transitions – e.g.

developmental, educational etc. • Life planning – e.g. ageing parents

Parents as Carers• Forms of support include:

Access to health and disability servicesCondition specific support groupsFunded out of home or within home

respiteCarer Support subsidyChild disability allowance

Parents as Carers• Generic support networks include:

Carers NZ www.carers.net.nzComplex Care Groupwww.complexcaregroup.org.nz Parent 2 Parentwww.parent2parent.org.nz

ReferencesAdvance Care Planning: A guide for the New Zealand health care workforce. (2011). Ministry of Health. www.moh.govt.n.zCanChild 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.0b013e3181cb5adeSheilds, 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.