Experiences of Young Children With Cancer and Their Parents With Nurses’ Caring Practices During the Cancer Trajectory

Abstract

Children with cancer require repeated hospitalizations and the family’s everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents’ experiences of nurses’ caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson’s theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses’ caring practices aim to support children and parents in the transition to a “new normal.” Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child’s and parents’ life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

“… 85 , 86 Other factors were related to health care providers, with nurses being especially important. 87 , 88 As it relates to physicians, studies highlighted the importance of honest, complete communication with patients about prognosis. 83 , 89 , 90 …”

“…Factors found to increase perseverance of pediatric and AYA cancer patients were: the cancer experience, 34 , 167 hope for a future cure, 168 and relationships with oncology nurses. 87 The cancer experience was described as giving patients an “unknown strength” by patients, 167 whereas hope for a cure allowed patients to persevere despite treatment side effects. Finally, perseverance was described as an active choice in the face of disease progression.…”

A moment just for me – parents’ experiences of an intervention for person-centred information in paediatric oncology

“…However, it does not decrease. Parents have stated that even though they felt knowledgeable about their child's illness, they still wanted the information to be repeated in order to gain more in-depth knowledge (Enskär et al, 2020;McGrath et al, 2007;Ringnér et al, 2011). Parents found having repeated planned information meetings and access to written information they could return to over time was helpful during the treatment trajectory (Enskär et al, 2020).…”

“…Parents have stated that even though they felt knowledgeable about their child's illness, they still wanted the information to be repeated in order to gain more in-depth knowledge (Enskär et al, 2020;McGrath et al, 2007;Ringnér et al, 2011). Parents found having repeated planned information meetings and access to written information they could return to over time was helpful during the treatment trajectory (Enskär et al, 2020). Studies have shown that transitions between phases of the treatment increase parental uncertainty, and that the discharge from hospital and end of treatment are particularly challenging (Gunter and Duke, 2019;McGeehin Heilferty, 2018).…”

Striving to reduce suffering: A Phenomenological Study of nurses experience in caring for children with cancer in Ghana

“…Nurses adoption of pain-relieving measures depended on their experiences in dealing with pain and their convictions about pain. Nurses are expected to assess children using developmentally appropriate strategies(Enskär et al, 2020). With these competencies at hand, nurses will be able to develop a deeper understanding of the patient as a unique individual.Participants mentioned that they provided a hopeful fight, by giving holistic care which included giving education on cancer to clients and their family members.…”