Important aspects of care and assistance for parents of children, 0––18 years of age, on or off treatment for cancer. Parent and nurse perceptions

Abstract

Important aspects of care and assistance for parents of children (0–18 years) diagnosed with cancer were investigated. Parents (N=114) and nurses (N=121) were asked the following questions: ‘What caring aspects are important for you/the parent to feel cared for?’ and ‘What help, if any, do you/the parent need outside the hospital?’ Nurses were asked to answer for a certain parent. Data were analyzed by content analysis. The following aspects of care were identified: accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social competence, temporary assistance, own child is well cared for, and time. Most parents mentioned the importance of social competence and information, most nurses mentioned the importance of information and emotional support. The following aspects of assistance were identified: accessible care, emotional support, financial support, instrumental support, and support to live a normal family/social life. A third of the parents and a fourth of the nurses were of the opinion that the parent did not need any assistance. Most parents who mentioned a need of assistance mentioned a need for emotional and instrumental support. Most nurses mentioned a parental need for emotional support and accessible care.