Identified Needs
Historically and through a Member Needs Analysis, a number of needs have been identified as being important to the CF community.
These needs include, but are not limited to:
- Assistance to carry out intravenous and other treatments assessed as being suitable to be done in the home;
- Assistance with airway clearance at home;
- Support to young people with the process of transferring from the children’s hospital to the adult clinic;
- The possibility of borrowing equipment to use in treatment at home;
- Assistance to parents of newly diagnosed babies and children during their adjustment to the impact of the diagnosis and it’s implications for family living;
- Members from both metropolitan and country areas seeking guidance and support to overcome difficulties with aspects of living with cystic fibrosis;
- Parents of children of pre-school and school-age seeking practical assurance that their child’s teacher is informed about the condition of CF and understands how it may affect their child in the classroom and place;
- The need for parents, partners, siblings and grandparents to have times of recreation and respite;
- Up-to-date information about aspects of CF and developments in research;
- Support and promotion of research;
- Re-assurance that the wider community is being helped towards a heightened appreciation of what cystic fibrosis is, and of the effects of living with the condition;
- Re-assurance that their organisation will support and advocate for change at policy level, and will support and promote research.
