The Needs of Children with Terminal Illness: A Qualitative Study

Abstract

Purpose: The response of each child to terminal illness treatment is highly individual. This will certainly affect the level and type of perceived needs. This study is conducted to examine the needs of children with terminal illness from the perspective of nurses and parents. Method: A qualitative descriptive study was conducted in this research. The data collection process included in-depth interviews with eight nurses and eleven parents and focus group discussion with seven nurses. The sampling technique used purposive sampling. Data were analyzed using content analysis. Results: Based on the perspective of nurses and parents the needs of children with terminal illness in the biological aspect require the fulfilment of basic biological needs, a therapy programme with minimal side effects, intervention to improve comfort, optimal infection prevention, and on-going care. While in the psychological aspects, the children and parents need information, motivation, tools to overcome the anxiety of parents, parental involvement and education for children and families. In the social aspect there are the children's need to play, need for school, and need for social support. In the spiritual aspect, the children need to be able to pray, receive spiritual guidance, and also to have spiritual guidance to prepare for death, and die with dignity. Conclusion: The needs of a child with terminal illness are complex and require special attention from the nurse. Therefore, nurses have a very important role to be able to comprehensively assess the needs of children with terminal illness in an effort to improve the quality of life of children.

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

“…As expected, methods varied inclusive of: questionnaires33 34 38 40 42 45 47 48 50 55 57 59 65–67 71 74 75 77 self-report measures,31 48 59 in-depth interviews via different mediums (face to face/telephone)27–30 32 35–46 49 51–54 56 58–60 62–66 68–70 72 73 75 76 78–80 focus groups,27 38 41 50 52 56 61 65 70 79 an audit of nursing a psychology records34 and art-based workshops 75. The majority of studies used mixed-methods approaches to collect data.…”

“…The scoping review identification process highlighted 48 studies which discussed the unmet needs of children with LLCs and their families from the parent’s perspective 15 27–73. The references of these 48 studies were then hand-searched by GC, identifying seven further studies meeting the inclusion criteria 74–80.…”

“…The included articles were conducted in 16 locations internationally: UK,15 27 29 34 38–40 48 51 55 56 59 61 64 65 68 72 74 75 81 USA,30 32 35 37 44 52 58 60 66 77–80 Australia,45–47 54 57 76 31 43, Canada,49 53 58, Germany, 31 43 Switzerland,36 67 The Netherlands,63 73 Brazil,69 Indonesia,70 Lebanon,71 India,28 Sweden/Denmark,33 Malaysia,41 Hong Kong,42 and Cameroon 62. The UK, followed by the USA, Australia, and Canada, were the largest contributors to scoping review.…”

“…Parent samples ranged from n=2 to n=272 and were published between 1989 and 2019. While all studies sampled parents of children with LLCs, the majority used a parent-only sample28 29 31–37 40–44 46–51 53–55 57 58 63 64 66–69 72 73 76–78 80; others sampled both parents and some of the children with an 61 71 75 LLC; some sampled children, parents and professionals27 39 52 62; and the remaining studies sampled parents and professionals 30 38 45 56 59 60 65 70 74 79. While all studies discussed needs from the perspective of parents of a life-limited child, several of these accounts were retrospective experiences from bereaved parents 32 36 37 41 43 44 46 47 55 58 60 66 67 69 76–79 82.…”

“…Parents need training inclusive of skills to manage parental anxiety when caring for a complex child 70…”