This review shows that the illness affects the wellbeing of everyone coming in contact with the child. It also causes distress related to all aspects of life. Mediating factors for decreasing distress and increasing wellbeing are disease and treatment severity, age, gender and ethnicity of the individual, time since diagnosis, the use of internal and external support, as well as who reported the data. Frequently reported health promoting factors are family togetherness, having coping strategies and engaging in the activities of normal life, as well as quality of care: emotional support, information and family participation in care.
The results show that cancer effects wellbeing
. Children and survivors seem to cope with the illness in both a positive and negative way and their wellbeing and quality of life are, in most studies, reported to be similar to those of the healthy population. This is also confirmed by several study’s [4
], who all reported the adjustment of children, and young cancer survivors as reasonably good. However, there are always some patients who are more vulnerable and do not cope well or who have significant difficulties regarding family, social life and personal aspects [9
A more complex picture was reported among parents of children with cancer. Even as some studies included in this review reported parents to have good wellbeing and quality of life, others reported them to have a negatively affected wellbeing and quality of life. Wakefield et al. [11
] stated that parents can experience negative wellbeing while others claimed that parents/family-member adjust well to the cancer, and that only a minority appears to be at risk of psychological morbidity [13
]. There does not seem to be a consensus between the different studies concerning parents’ wellbeing and quality of life. This may have a natural explanation as these concepts are not thoroughly defined [32
]. Other concepts such as social support, investigated for families of children with cancer, also seem to lack consensus [34
]. Another explanation for the different outcomes could be that researchers use a great variety of methods and measurement instruments [32
]. Mattsson et al. [35
] showed in their review the positive consequences of childhood cancer and how different study designs bring out different results for the same phenomena. A review by Enskär et al. [32
] found that different measurement instruments had been used in each and every study. To get comparable and consistent results in the future, the researchers have to agree on the use of methods, especially instruments to measure wellbeing and quality of life in children, survivors, parents and siblings.
The result of this review also shows that the child´s illness should be cause distress related to all aspects of life including physical, psychological, existential and social distress. For children the most commonly reported distress was psychological, manifest as anxiety, followed by physical distress such as pain and tiredness. Wakefield et al. [4
] also found in their literature review that distress was related to the cancer experience as increased anxiety, behaviour problems and sleeping difficulties. The management of procedure-related pain has been an important area to investigate for many years since children treated for cancer often report feelings of anxiety and distress [32
]. Patenaude and Kupst (9) reported in their review that research has led to interventions to reduce procedure-related distress in children. In the review of Enskär et al. [32
] only a few specific interventions were carried out. Those interventions were related to specific areas of the child’s care such as management of anxiety as well as pain related to procedures or nutrition.
For the parents in this review, the most often reported distress were psychological distress manifest as worries and anxiety, followed by mood changes such as depression. Those aspects of parents’ wellbeing have been studied also outside Sweden. Klassen et al. [36
], found that parents of children with cancer reported poorer physical and psychosocial quality of life in all psychosocial domains and in most physical health domains. Others have reported worries, fear of recurrence [11
], anxiety, depression and prolonged grief [12
In this review it was clear that different mediating factors
influenced the experience of distress and wellbeing and were not experienced over time in the same way by all those involved. Differences in experience depending on diagnosis, treatment or prognosis could be seen in some studies. Some diagnoses
, such as CNS-tumours, long and more advanced treatment protocols, frequency of symptoms and a bad prognosis were all associated with a more negative wellbeing. Langeveld et al. [7
] found that demographic, illness and treatment related variables are related to survivors´ quality of life. Klassen et al. [36
] found in their review that demographic differences, cancer type and treatment regimens all had a significant negative impact on patients’ quality of life. Children with lower treatment intensity and higher wellbeing were associated with higher quality of life in the parents. Another mediating factor was time. In this review the distress was different in different phases of the illness; for example the wellbeing increased over time, but it often took a long time. Fakhre et al. [37
] carried out a literature review on quality of life from diagnosis to remission/survivorship and end of life for children with cancer. They found that those who are newly diagnosed with cancer and undergo treatment, or are terminally ill, have impaired health-related quality of life (HRQoL). However, survivors of childhood cancer have high HRQoL (with the exception of those who experienced medical comorbidity or posttraumatic stress disorder). Klassen et al. [36
] and Wakefield et al. [11
] stated that distress in parents appears to ease with time.
In this review the age
of the child, as a mediating factor, was not fully clear. Eiser et al. [38
] argue that the impact of cancer in young adults is different from experiences during childhood. Key developmental tasks include negotiation of independence from the nuclear family, achievement of intimacy, and generatively (concern to establish and guide the next generation) and all of these tasks can be challenged by cancer, and have led to concern about health-related quality of life. However, as most studies in this review were carried out among parents the differences between the age-groups was mostly seen related to the parents’ wellbeing and not the childrens’.
More obvious in this review was the gender differences
in adolescents and parents. Gender differences, especially among parents, have been studied and reported [39
], also traditional gender roles in the division of parental tasks has been reported [40
The presence of positive intrapsychological traits, such as self-esteem and mastery, was more predictive of parental optimism than other mediating factors, such as prognosis [15
], related to the illness. For parents, caregiver strain, self-perception and family-centered services provision was associated with psychosocial wellbeing [41
]. Furthermore, physical aspects such as better eating, exercise and sleeping habits in parents have been associated with better parental QoL [36
]. Wakefield et al. [4
] carried out a literature review on psychosocial functioning of children who had recently completed cancer treatment, and found that they may experience self-worth, good behaviourand improved mental health and social skills.
In this review health promoting activities, such as family togetherness, coping strategies and engaging in activities and “normal life”, have been reported as important. When a family member becomes ill maintaining daily routines and rituals is an important contributor to retaining stability. The family members can also feel increased cohesiveness within the family, which is perceived as helpful [42
Peek and Melnyk [24
], found in their literature review, that numerous studies have demonstrated the adverse impact of cancer on family members, but few are intervention studies designed to facilitate coping and wellbeing. Eiser et al. [38
] state that there is a need for intervention studies, and attempts to improve knowledge, re-integration into normal life and to promote self-care, are described. Pedro et al. [34
], investigated social support and they recommend the need for it to be assessed and included in care plans and guidelines. Research has found that family-based psychosocial interventions are feasible, acceptable, and potentially effective to for use in paediatric oncology [43
In this review the qualities of care comprise emotional support, information and family participation in care. The staff need to have, as well as the staff having a caring approach including listening to the childrens’ and parents’ needs, and to providing a child centred care. It is important that hospital staff are aware of the psychosocial issues experienced by children with cancer and their families. They recognized the value of formal intervention, reporting benefits for children and, families, and for themselves [44
]. Several of the expected behaviours in the staff (the caring approach) could be described using the Swanson Caring Theory [45
] which includes: (a) respecting families and believing in their capacity to make the best decisions for their family UNIT (maintaining belief); (b) understanding families’ experiences and their continued need to protect their child (knowing); (c) physically and emotionally engaging with the family (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping families navigate the system and creating a therapeutic environment for them in which to make decisions (doing for) [46
According to the Children’s Oncology Group’s 2013 blueprint for research, over the next 5 years, the field of nursing and psychosocial science needs to translate empirical supported research into practice [3
]. As most studies in this review are descriptive or comparative [32
], this is not an easy task for clinical staff. Caring sciences must focus more on intervention studies and longitudinal studies and proportionally less on descriptive research. There is an agreement, that paediatric oncology caring practice must incorporate both the science and the art of the discipline to foster positive physical and psychosocial treatment outcomes for paediatric oncology patients [47