Overview

The 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.

Related policy 

Consumer Focused Care

Definition of terms 

Consumer / 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.

Family - 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 be. 

Patient 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. 

Community: 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. 

Child, 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. 

Diversity 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 details 

This procedure is divided into four sections: 

• Principles
• 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 hospital management 

Principles 

• 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 decision-making.
• Participation- Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
• Collaboration- 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 

The 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. 

Evidence has shown that patient and family centered care can produce benefits such as: decreased patient anxiety levels, faster recovery and reduced medication requirements.² 

Hospital staff should use the following guide to improve the experience and outcomes for patients and their families: 

Treat 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

Share 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 

Involve 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 opinion
• Use language that will encourage an open environment for decision making

Share the provision of care 

• Each family will want to have a different level of involvement in decision making
• The level of involvement may change over time - be responsive and flexible
• 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.

Improving the hospital together 

Involving patients and families in co-design. 

Considerations for improvement projects. 

Why? 

• 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 improve

Who? 

• Who are the right people to ask for what you are trying to find out about?
• 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 on improving     

How? 

• Ask as soon as possible after the experience (e.g. even if asking them for their feedback after a one-off consultation)
• Focus Groups
• Consider using video conferencing platforms to engage people from all areas eg WebEx, Zoom
• Interviews - formal, informal

What questions do I ask?

• Work out what you want/need to know
• Ask a small amount of simple questions that are easy to measure directly relating to the subject (forget the nice to knows)
• Ask how they feel things could be improved
• Ask what they thought before you make changes then after you make changes to evaluate any changes

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 RCH)
• 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 approach
• 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.  

Healthcare Service Co-Design

Patient 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 evaluation. 

One of the ways to achieve this is via consumer representation on RCH Committees; the RCH already has consumer representatives on a number of key committees: 

Board level: 

Community 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 perspectives.
• 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

Management level 

The RCH is committed to having consumer representation on all key governance core committees. 
We currently have Consumer Representatives Volunteers on most Great Care Committees 

Including Consumers on your committee/group: (ongoing or long term) 

Involving 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. 

Efforts should be made to ensure the meeting is at a family friendly time, and that the contribution of families is supported and encouraged.  

Integrating Patient and Family Centered Care (P&FCC) into daily business: 

Recruiting staff: 

• 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 P&FCC
• General staff orientation program includes principles of P&FCC

Relevant Procedures

• Australian Charter of Healthcare Rights
• Child, Family and Community Participation
• Community Visitor’s Access
• Complex Care Hub School Care Program Access
• Consumer Feedback - Management
• Consumer Focused Care and Child Safety
• Consumer Representative Volunteer Appointments to Committees

References 

1. Institute for Patient and Family Centered Care 
2. Safer Care Victoria – Partnering in Healthcare
3. 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. 
4. Charter on the Rights of Children and Young People in Healthcare Services in Australia 
5. World Health Organisation: Rights of the Child and Young Person in healthcare 
6. Rights of Participants in NDIS