Care with love: Parents' experiences in caring their child with cancer under palliative care

Care with love: Parents' experiences in caring their child with cancer under palliative care

Nafratilova M; Allenidekania A; Wanda D

Pediatric Blood and Cancer

2018

caregiver; palliative therapy; nurse; data analysis; malignant neoplasm; fatigue; sibling; conference abstract; human; child; female; male; interview; clinical article; daily life activity; uncertainty; primary medical care; phenomenology; fear; jealousy

Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research applied descriptive qualitative phenomenology design. Data collection was conducted through an in-depth interview involving ten parents as participants, while data analysis used was Colaizzi method Results: The eight themes were identified as caring with love, continuity of fighting, mixed-up feeling, changes of life, being a caregiver for a child, caring children not easy, trying to be normal parents, and seeking help. Parents took care of their children with love by making them comfortable, using love in caring their child, standing by their child, and caring by oriented on their child. The parents shown that they tried to be tough and to keep fighting in caring their child. Mixed-up feelings were worry, uncertainty, sad, fear, fatigue, ignored feeling and isolated feeling, happy, calm, and touched described by the parents. Parents felt negative changes such as to change their daily activities and to limit the other activities. Their found difficulty to care and communicate with their child, financial problem, limitation of time, less support from their family, and jealousy from the sibling. But parents also give the best for their child, and tried to treated their child as normal as the other children. Conclusions: Parents care their child with love even though they feel mixed feelings, difficulty, and changes in their life during palliative care. They need comprehensive support in playing roles as a primary care giver for their child caring with love. Nurses and all health care professionals involved are expected to be able to cooperate in providing palliative care that is comprehensive and continuous to the children and parents.

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