Royal Children's Hospital (RCH) values child and adolescent, family and
community participation in the planning, delivery, evaluation and quality
improvement of health care services in order to achieve best possible health
outcomes. RCH fosters a culture of participation in its internal
and external communities in accord with Victorian Government commitment in this
area. RCH aims to facilitate the involvement of children and adolescents
in their healthcare according to their maturity, age and any relevant law.
There is evidence that participation in health leads to better outcomes and
better quality of care.
Definition of terms
/ Patient - a person receiving healthcare from The Royal
Children's Hospital. Children and adolescents at RCH are current or potential
users of the health care service, either directly or indirectly. It includes
children and adolescents living with a disability, those from diverse cultural
and religious backgrounds, and with varying social circumstances, sexual
orientations, health and illness conditions. This definition also includes
participants of the NDIS program.
- the patient, their carers and relatives. The members of the family are
determined by the patient and their carers and sometimes include close friends.
The term 'carer' is used in many health care policy documents. In the context
of RCH, the word family replaces carer and is defined as people who provide
support to children requiring the services of RCH, be it directly or
indirectly. Family may include parents, siblings, other relatives, guardians or
friends. If the child is capable, family is who the child defines it to
and Family Centered Care (P&FCC)- the delivery of
health care based on partnerships between patients, families and all those
involved in the care of the child and family.
A group of people who have characteristics in common. For example, groups with
the same health condition or disease, support groups with a common interest or
ideology, groups from a similar ethnic or cultural background, groups from a
specific geographical location or catchment. The population that RCH serves is
made of many diverse communities.
Adolescents, Family and Community participation:
The process of actively involving children, adolescents, families and
communities in their own health care and in health service planning and
priority setting; policy development, implementation and evaluation; resource
allocation and quality improvement initiatives.
This is a broad concept that includes all Australians. Recognising that each
person is a unique and complex being is integral to understanding and
responding effectively to health care needs at an individual, family or
community level. Diversity refers to age, personal and professional background,
education, function and personality. It includes lifestyle, socio-economic
status, sexual preference, ethnicity and status within the general community.
Facilitating access for these often marginalized groups and individuals must
occur across all areas of healthcare.
procedure is divided into four sections:
- Caring for patients together - how we care for patients, for
example during inpatient and outpatient stays
- Improving the hospital together - how to make the hospital more
patient and family centered
- Healthcare Service Co-design - Managing the hospital together: how we involve families in
- Zero Harm (Quality and Safety) –
improve the quality and safety outcomes and the experience of care by
encouraging and supporting patients and families to be actively involved
in their treatment and care.
- Dignity and Respect- Health
care practitioners listen to and honour patient and family perspectives
and choices. Patient and family developmental needs, knowledge, values,
beliefs, and cultural backgrounds are incorporated into the planning and
delivery of care.
- Information Sharing-
Health care practitioners communicate and share complete and unbiased
information with patients and families in ways that are affirming and
useful. Patients and families receive timely, complete, and accurate
information in order to effectively participate in care and
Patients and families are encouraged and supported in participating in
care and decision-making at the level they choose.
Patients, families, health care practitioners, and leaders collaborate in
policy and program development, implementation, and evaluation; in health
care facility design; and in professional education, as well as in the
delivery of care.1
- Rights of the Child and Young Person-
Rights of children and young people in healthcare services.
Caring for patients together
capacity and ability of patients to participate in their health care will vary
on the basis of factors such as developmental level, disabilities, culture and
personal choice. Families bring a rich and diverse set of knowledge, values,
beliefs, and experiences that contribute to the care of their child/young
person. Patients and families will vary in their requirements for information,
decision making and involvement. Patients may or may not wish to participate.
RCH will explore this choice and respect their wishes.
has shown that patient and family centered care can produce benefits such as:
decreased patient anxiety levels, faster recovery and reduced medication
staff should use the following guide to improve the experience and outcomes for
patients and their families:
patients and families with dignity and respect:
- Communicate with the patients and families as to the procedures
relating to the planned care
- Make sure patients and their families know who you are – introduce
yourself with your name and your position
- Communicate with families in a language that they are confident in
and use interpreters as required
- Be aware of the individual's background including their culture,
ethnicity, religion and gender identity
- Ask questions and listen to the patient and family's opinion
- Respect the patient and family's privacy and confidentiality
- Be aware of the patient and family's rights
- Ask patients if we are meeting their needs
information clearly and openly
- Make sure families know about the service before they arrive and what
to expect and bring
- Remember to explain the meaning of medical terms and acronyms
- Copies of correspondence should be offered
- If teaching or providing instructions make sure they are clear and
concise - check that they understand - limit the use of jargon
- Involve families in ward rounds and handover
- Make parents and families aware of My RCH Portal
the patient and family in decision making
- Create a safe environment for parents to be able to ask questions
- Use a team approach such as multi-disciplinary clinics
- Explain all the treatment options
- The family may not automatically accept your first choice of
treatment, explain why you have chosen it, and consider offering a second
- Use language that will encourage an open environment for decision
the provision of care
- Each family will want to have a different level of involvement in
- The level of involvement may change over time - be responsive and
- Collaborate with whoever the family nominate as their primary
healthcare provider in the community (i.e. specialist Dr., GP, etc.),
families often feel "cut-off" from the hospital once their
child's health improves
- Where required, families should be supported in the community, such
as through their GP or school.
the hospital together
patients and families in co-design.
for improvement projects.
- Our role is to provide safe, quality care and services to patients
and their family
- Patients and families perceive what we do differently from us, so
can give us a different view about what we do, how we do it and how we can
- Who are the right people to ask for what you are trying to find out
- Think about whose experience you want to capture, is it the
child's/young person the parent and family, the referring GP/ Pediatrician
or other health professionals
- Remember to encourage and support people from diverse backgrounds,
people with disabilities and different cultural groups to be involved- use
interpreters translators where needed
- Ask someone who has had experience of the service you are working
as soon as possible after the experience (e.g. even if asking them for their
feedback after a one-off consultation)
using video conferencing platforms to engage people from all areas eg WebEx,
- formal, informal
do I ask?
out what you want/need to know
a small amount of simple questions that are easy to measure directly relating
to the subject (forget the nice to knows)
how they feel things could be improved
what they thought before you make changes then after you make changes to evaluate
Surveys and Feedback forms
These can take a number of formats:
- If surveying children consider getting them to draw you pictures – Child
Life Therapy can offer advice with this
- Electronic survey/feedback (Lime Survey is the system supported at
- Written paper format- done on the spot, mail out
- Conduct targeted ward interviews on a series of specific topics
directed at families
- Use the My rch Portal to send out notification of surveys to
patents and families
- Victorian Healthcare Experience Survey
Other Techniques and strategies for participating:
Surveys, interviews, focus groups, complaints,
feedback forms are common ways to seek information. Some other techniques
to consider are:
- Patient shadowing
- A patient diary
- Personal stories
- Mystery shopper
Reporting safety and risk concerns
Make it easy for patients and their families to
report safety and risk concerns.
How do we do this?
- Ensure verbal and written information provided reflects this
- My RCH App/patient and families page on internet
- As part of your daily interactions ask patients and their families
if they have any concerns
When a concern
is raised what do you do?
- Review/check it - is there something you can do about it straight
away? See Open Disclosure Procedure
- Do you need to put something in place to manage the situation (talk
to whoever is in charge for assistance)
- Make sure notes are made about the concerns in the right place -
incident report, patient record
- Ensure the patient and family are kept informed about what has
happened or who to talk to if they have any other concerns
- Complaints / Feedback - VHIMs (Victorian
Health Incident Management System)
- Contact the Consumer Liaison Officer
- If a patient and /or their family have made a complaint or provided
feedback make sure you make a record of it.
and family centred care is about developing an equal partnership with patients
and their families at all levels. This is part of our everyday
business. This includes the involvement of patients and their families in
decision making about service delivery, care plans, program development and
of the ways to achieve this is via consumer representation on RCH Committees;
the RCH already has consumer representatives on a number of key
Advisory Committee - consists of representatives
from the wider community and reports directly the RCH Board. This
committee is a legislative requirement. Their role is to:
- advise the board and contribute to establishing and maintaining
effective systems to facilitate and monitor consumer, carer and community
- advise the Board in relation to integration of consumer, carer and
community perspectives into all levels of the RCH decision making in
relation to health service operations, planning, policy development,
quality activities and major initiatives to improve outcomes for patients
and the community in accord with RCH strategic directions
RCH is committed to having consumer representation on all key governance core committees.
We currently have Consumer Representatives Volunteers on most Great Care
Consumers on your committee/group: (ongoing or long term)
consumers in committees provides an opportunity to move beyond ad- hoc consumer
feedback to a more interactive approach and allows consumers to have direct
input into decision-making processes.
should be made to ensure the meeting is at a family friendly time, and that the
contribution of families is supported and encouraged.
Patient and Family Centered Care (P&FCC) into daily business:
- All position descriptions include the expectation that staff will
take responsibility to provide patient and family centred care.
- PDAP (Performance and Development Assessment Program)
include a requirement to demonstrate and give evidence of Patient and
Family Centered Care
- Use the opportunity to review perceptions and inform staff about
- General staff orientation program includes principles of P&FCC
- Institute for Patient and Family Centered Care
- Safer Care Victoria – Partnering in Healthcare
- Doing it with us not for us Strategic direction
2010 - 13 (2006):
Victorian consumers, carers and the community working together with their
health services and the Department of Human Services, DHS, January 2006.
on the Rights of Children and Young People in Healthcare Services in Australia
- World Health Organisation: Rights of the Child and
Young Person in healthcare
- Rights of Participants in NDIS