Honor Nicholl, a registered children’s nurse and Assistant Professor in the School of Nursing and Midwifery in Trinity College Dublin (TCD), along with some of her colleagues are currently undertaking a needs assessment and feasibility analysis for a national centre encompassing a respite care unit for children with rare conditions and hospice type services for children in Munster and the Mid-West.

The forthcoming study will investigate the need for a national centre that will provide (i) respite for children with rare and genetic conditions and (ii) hospice type services for children who will use this service in Munster and the Mid-West. This study will be conducted with researchers based in the School of Nursing and Midwifery at Trinity College Dublin and will be led by Dr Honor Nicholl.

There will be two parts to the study and we are inviting you to participate in either part:

  1.  A focus group interview
  2.  Telephone interviews

The first part is where parents of a child with a rare condition, healthcare professionals, voluntary and statutory services involved in the care of children with rare conditions, are invited to take part in a focus group interview. The focus group will take place on 5th March in Fels Point Hotel (Dan Spring Rd, Tralee, Co. Kerry) at 12pm.

The second part involves a telephone interview where parents of a child with a rare condition, healthcare professionals, voluntary and statutory services involved in the care of children with rare conditions are invited to take part in a telephone interview which will last about 20 minutes. The telephone interviews will take place from 2nd to 13th March.

If you would like further information or if you would be interested in taking part in either the focus group or telephone interview, please contact Dr Aileen Lynch in the first instance.

Aileen can be contacted either by telephone: (01) 896 8571 or email: amlynch@tcd.ie and she would be delighted to speak to you further.