Family participation in childhood cancer care

Abstract

Background: Child cancer care is becoming increasingly successful, the treatment brought more success through intensified therapy, but this development has not been easy to achieve due to the pain and anxiety that the treatment often causes. It is not possible to eliminate the chaos the family experiences, but it can be reduced through a deepened understanding of the situation. Purpose:The aim of the study is to highlight families views on participation in childhood cancer care. Method:A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child´s illness. Findings:The families constitute a cornerstone in paediatric oncology care today, but the results indicate that all the various tasks and commitments for the families, sometimes entail too heavy a burden. They are in need of better support and clearer instructions to be able to cope with the situation including rules and measures concerning the child. Therefore, it is urgent to clarify who has the formal responsibility for medical consequences that might occur in connection with delegated responsibility. The study shows that there is a lack of pedagogical thought and a need to create a pedagogical model. Conclusion:There is a need for guiding principles and education for the parents, which would contribute to their increased confidence.

Activities and Nurses' Role in Empowering Parents on Treating Children with Cancer

“…Physical needs that should be fulfiled by parents include nutrition, self-care, and being involved in nursing actions such as taking temperature and monitoring the child when receiving intravenous fluids and psychosocial needs by reading storybooks, playing with children, and activities that show the closeness of children and mothers. The results of this study are almost the same as the research conducted by Kastel and Enskar (2013) which showed that family participation in caring for children with cancer was related to fulfiling basic needs such as feeding and assisting with oral care in children except feeding with a tube and administering medication by injection.…”

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

“…Children and parents need to feel involved and engaged in planning procedural care (Darcy, Knutsson, et al, 2014). Parents have reported that later on in the cancer trajectory, they consider themselves to be the experts on their own children’s needs and wishes and are willing to give advice to nurses on how to carry out procedures in the most efficient and painless way (Kästel & Enskär, 2013).…”

O cuidado de crianças e adolescentes após o transplante de medula óssea: vivências de mães

“…A literatura evidencia que a participação ativa das mães é de fundamental importância durante e após o tratamento, o que se estende para o período de recuperação do filho submetido ao TMO (Beattie & Lebel, 2011;Kastel & Enskar, 2014;Mazza et al, 2016). Nessa perspectiva, é essencial facilitar-lhes o acesso a recursos que as auxiliem a compreender o que está se passando com seus filhos e consigo mesmas.…”

“…Corroborando esses achados, no presente estudo a comunicação médico-paciente-cuidador foi descrita pelas participantes como deficitária. A literatura mostra que essa comunicação, do ponto de vista das mães cuidadoras, é fundamental para a aceitação e enfrentamento da doença de seus filhos, já que elas comumente encontram dificuldades desde o momento em que recebem o diagnóstico, prevalecendo o sentimento de culpa e tristeza (Kastel & Enskar, 2014).…”