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Terminal care of the child with cancer at home
K Sirkiä1, U M Saarinen, B Ahlgren
1Children's Hospital, University of Helsinki, Finland.
Insights
Terminal home care for children with cancer significantly improved quality of life. While most parents found the pediatric cancer care satisfactory, some desired more support and information regarding their child
Area of Science:
- Pediatric Oncology
- Palliative Care
- Childhood Cancer Research
Background:
- A study examined 100 pediatric patients with leukaemia, solid tumours, or brain tumours who died between 1987-1992.
- 70 of these children received organized terminal care, with 60% cared for at home.
- Home care was coordinated by oncology ward personnel, with parents providing direct care.
Purpose of the Study:
- To evaluate the advantages and disadvantages of a terminal care program.
- To specifically assess the effectiveness and challenges of home-based terminal care for children with cancer.
- To understand the impact on the child's quality of life and parental experience.
Main Methods:
- Retrospective analysis of patient records.
- Structured interviews with parents of deceased children.
- Evaluation focused on symptom relief, quality of life, and parental satisfaction.
Main Results:
- Children's quality of life was positively influenced by being at home.
- Symptom relief, especially pain management, was generally adequate.
- Most parents were satisfied, though some reported insufficient information, supervision, support, and preparation for the child's death.
Conclusions:
- Home-based terminal care programs are largely satisfactory for children with cancer and their families.
- Successful home care necessitates continuous supervision, assistance, and support from well-trained healthcare professionals.
- Addressing parental needs for information and support is crucial for optimizing pediatric palliative care.
Abstract:
One hundred paediatric patients with either leukaemia (36%), solid tumours (34%) or brain tumours (30%), treated at the Children's Hospital, University of Helsinki, Finland, died during 1987-92; 70 of them died while in organized terminal care. They were treated at home (60%), in hospital (29%), and partly at both (11%). One or both parents stayed at home to take care of their child. Personnel of the oncologic ward coordinated home care. The purpose of this study was to evaluate the advantages and disadvantages of a terminal care program, with special reference to terminal care at home. Evaluation included retrospective analysis of patients' records, as well as a structured interview with the two parents separately. The quality of life of the children during the terminal period was greatly influenced by their happiness at being at home. Relief of symptoms, particularly pain, was in most instances adequate. Most parents had no complaints to make afterwards. Only some of them complained of having received too little information, too little supervision and support, and insufficient preparation for the death of the child. Thus, the system of terminal care at home proved satisfactory for the child and the whole family in many different respects. For successful home care, the parents need continuous supervision, help and support by well-trained personnel.
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