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.
Insights of Volunteering in Palliative Care
The following four videos demonstrate the difference that volunteers can make in the lives of families and children with a life limiting illness. The videos also describe the personal gains and satisfaction this special role provides for volunteers.
The video below is an interview with a Palliative Care Volunteer and a mother who discuss their thoughts about volunteer support. During the interview our parent discusses her initial doubts prior to starting volunteer visits, the strength of the relationship that developed over time and the positive impact this had for the family.
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
- Listening skills
- Ability to work with a team
- Genuine commitment
- Sense of humour
The following video interviews 4 volunteers as well as staff members from the palliative care service. The interviews reveal the volunteers personal stories of their experience of being a palliative care volunteer. The interviews also share the reflections of a Volunteer Coordinator and a Clinical Nurse Consultant as they describe the value of volunteer support as part of the overall care provided by a palliative care team.
The videos below follow two different volunteers visiting their placement families. The films show examples of the activities and support that the volunteers can provide, for example playing with siblings and family outings. The films capture the meaningful relationships that develop with all family members over time.
NSW Paediatric Palliative Care Volunteer Services:
For further information regarding palliative care volunteer services provided at the Children's Hospital at Westmead and John Hunter Children's Hospital Newcastle, please click onto the following links: