Paediatric Palliative Care Volunteer Program

The Nicholas Trust assists in funding the Paediatric Palliative care volunteer program.

The Kaleidoscope Paediatric Palliative Care Service (KPPCS) is a multi-disciplinary service caring for children and young people with life-limiting illnesses. Many of these children and young people have rare, non-cancer conditions and are patients of KPPCS for years. These patients may have recurrent hospital admissions but also by large are cared for at home.

The Paediatric Palliative Care In-Home Volunteer Program will provide support that will impact on the palliative care of children and their families at home and in hospital. It is important to be aware that the length of engagement of patients and families with the volunteer Service may be for months-years as determined by the patient’s life expectancy.

The program is new for the John Hunter Children’s hospital as it is intended that the support delivered by volunteers will occur mainly in the home.

There is quite a difference between volunteering with children and adults in palliative care. Specialised training and support is required. Volunteering in this area is a very specific and special role, it can be confronting, but at the same time extremely rewarding.

The Nicholas Trust will assist in the program through;

• Funding the development and delivery of specialised training
• Meeting the ongoing costs in running the Program
• Support for the continuing professional development of the volunteer co-ordinator

12 volunteers have recently completed training and have been assigned to families.

Trained volunteers support families with the practical and emotional demands of caring for a child with a life-threatening condition.

Every Family Support Volunteer completes a training program to equip them with the skills and knowledge needed to support families who have a child with a life-threatening condition. The training includes topics such as communication and listening skills, loss and grief and ways of working with children.

Ongoing support, supervision and professional development is provided to trained volunteers by the Co-ordinator of Volunteer services at the JHCH and the KPPCS team.

Volunteer Support

Caring for a seriously ill child at home puts an immense physical and emotional strain on the whole family. For an unwell child it can mean isolation from their usual friends and companions. Siblings can feel they are not receiving as much attention. Everyone in the family can feel they need a break and some time out.

Respite services available for paediatric palliative care patients and their families are limited in NSW. An alternative form of respite can be provided by a local volunteer service that provides in-home assistance and offers a variety of ways to meet the particular needs of each family. This can include:

• Entertainment for an unwell child and/or their siblings through play, reading, craft or other appropriate activities
• Light practical help around the house (washing up, light cleaning, light gardening)
• Being a listening ear to members of the family/caregivers who need to talk
• Assisting with family outings – e.g. grocery shopping or visiting park
• Practical support for parents/caregivers such as providing additional help with siblings during long appointments and running errands etc.

These small, practical ways of helping can have a meaningful impact on the quality of life for families with a child with a life-limiting illness and can bring a focus of normal living to a situation that is anything but normal.

Paediatric palliative care volunteers are special people and reflect the diversity and demographics of the community. Some of the qualities needed to be a volunteer for children who have a life-limiting illness and their family are:

• Positive approach to life
• Emotional maturity
• Sensitivity and understanding
• Tolerance and patience
• Tact and discretion
• Empathy
• Flexibility
• Dependability
• Listening skills
• Ability to work with a team
• Genuine commitment
• Sense of humour

How to Apply
Please consider your commitment carefully.

Before you decide to apply for a volunteer position, please take the time to really think it through. The staff and patients depend on volunteers to be committed.

School students – unfortunately work experience cannot be offered for volunteer roles.

Expressions of Interest

If you are interested in the Paediatric Palliative Care Home Visiting/Hospital Program, we are currently taking Expressions of Interest and will contact you regarding and invitation to attend an Information Session specifically for that role. An application form, interview and an initial two day training program, along with weekly meetings for eight weeks will be required before commencing this role. This position would not be suitable for someone who has experienced recent bereavement.

Hunter New England Health is a smoke-free zone. All roles that involve working with children require that applicants be non-smokers.

You will need to download and fill out a volunteer application form, which is provided below in the ‘Screening and Recruitment Process’ section.

Contact (02) 4921 3549 or email Naomi.Pope@hnehealth.nsw.gov.au to request an application pack.