Trained volunteers for families coping with a child with a life-limiting condition

One hundred and seven families with a child diagnosed with a life-limiting condition, from all over Queensland (Australia), were surveyed on their need for a trained volunteer. Their comments provide important insights into an area which has not previously been researched or documented. In summary, their responses indicate that many families have only minimal or no support, and are coping with extraordinary physical, emotional and social demands from the child's condition and treatment. The majority of the participants are very positive about the need for a trained volunteer and are clear about the activities that trained volunteers could provide assistance with. These activities range from practical assistance such as baby-sitting and help with household chores and errands to emotional support. Not all families would be comfortable using a volunteer, and some respondents did outline perceived obstacles to including a volunteer in family activities. For others there were comments about why volunteers would be perceived as unproblematic. Respondents specified important criteria that would need to be addressed in volunteer training. The largest number of respondents were coping with cystic fibrosis and muscular dystrophy. It is the hope and expectation that, with the communication of the insights gathered from this geographically diverse group of families, encouragement will be given to others working in this area to explore the possibility of establishing outreach volunteer programmes for such families.