An evaluation of a home palliative care programme for children

Objective To measure the quality of a paediatric hospice home care programme and to assess the needs and concerns, both met and unmet, of parents who received hospice services. Sample One hundred and thirty‐six questionnaires were sent to parents or primary caretakers of 87 children who had died under the hospice home care. Eighty questionnaires (59%) were returned, representing 54 patients. Methods Responders were asked about: (1) their decision to choose hospice care, (2) difficult problems experienced during hospice care, (3) communication with their children, (4) how parents and children experienced dying, and (5) evaluation of the specific service components. Results The majority of responders decided to bring their child home from hospital because further hospital care was not considered beneficial, and because they wanted the whole family to be together. Also, the child wished to be at home. Feelings of helplessness and fear were the most common and difficult problems reported. The majority of responders were not able to speak honestly with their child about their death. Most of the children died peacefully and did not suffer. Satisfaction with the hospice home care programme was high. Satisfaction with the hospice home care programme was not explained solely by the presence or absence of financial support from the hospice programme. Conclusion The questionnaire developed for evaluation of this paediatric home care programme has yielded valuable information directed at improving the care of terminally ill children and their families. Implications for practice The data obtained from this study may be used to improve the quality of service delivery, and also to provide useful documentation for institutions involved with the development of health care policy, education, and funding, such as the ministry of health, foundations, and health insurance companies.