Discussion
The objective of the present study was to investigate the coping strategies adopted by fathers and siblings of a child diagnosed with cancer, from the moment of diagnosis and throughout the course of treatment.
The results showed that studies investigating coping strategies in fathers of children with cancer are less represented in the literature than studies investigating mothers. More frequently, the problem in the couple is investigated, but the exclusively paternal point of view is not investigated.31 From our results, it appears that the father must necessarily remain strong; he cannot afford an emotional breakdown due to the condition of the child, as he must take care of the economic dynamics of the family. At the same time, the father must assume a dual role in the family unit, also dealing with tasks previously shared with the mother.26
Even though the results show some rather common and transversal elements among the different cultures and geographic areas, such as familiar reorganisation or the need for social and relational support, some elements seem to be culturally specific to defined places.
Lebanon fathers alone seem to look for God’s will in their child’s diagnosis28 according to their culture, while in Iran financial well-being seems related to the father’s resilience.32 In Europe, fathers from Poland feel more frustrated since the health condition of their child affects the whole family’s financial status.33 Portuguese fathers appreciate FCC, improving their quality of life and their satisfaction.34
While in Australia, siblings seem to relate their distress to the number of siblings to share their experience with,30 in Iran, siblings accuse their parents of the lack of attention they receive, showing compassion for their sick brother or sister.31 In the USA, the acceptance of the disease from fathers is strictly linked to the distress of the siblings.35
The literature has shown that post-traumatic distress is common across families of children diagnosed with cancer but tends to affect particularly one member, rather than multiple people, within a single family.36
Reactions to diagnosis seem to follow the stages of grief processing described by Kübler-Ross37. The first phase described as ‘shock’ can be assimilated to the first two stages of grief processing, named denial and anger.37 Shock can be represented by both of these manifestations. The phase in which one seeks a person responsible for the disease—and for some is found in God28—corresponds to the phase of bargaining in which one feels relief in seeking the cause of the pathology in the divine will. The phase of depression is certainly comparable to the psychological discomforts that arise characterised by anxiety and depression. Finally, the acceptance phase is closely linked to the ‘time’ factor, since with the passing of days, the psychological and relational family condition tends to improve.38 In this regard, the relationship between mother and father seems to take on much importance, and non-divorced parents turned out to be more satisfied with their family. This result is, however, to be investigated further, as other studies have described how the pathology itself affects the distancing between parents. One of the causes seems to be the time that parents spent apart. Current protocols require primary caregivers to spend extended time in healthcare settings,18 at the same time, however, the pathology also seems to unite parents through the sharing of pain.33
Literature shows that siblings, with an ongoing and active process, notice and adapt to the many unexpected and taxing aspects of their brother’s or sister’s cancer diagnosis and treatment. In particular, siblings adapt to the new family system.18 Moreover, siblings of children with cancer demonstrate to cope with this new situation with resiliency, however, they experience patterns of stress, with moderate or severe level, especially during the first 2 years postdiagnosis.11
The studies that have investigated the coping strategies of siblings have brought out the double pain experienced: on the one hand, pain in seeing the brother in the condition of illness, and on the other hand, pain in the relationship with the parents. In fact, siblings—experiencing the feeling of loneliness and loss of value in the eyes of parents due to the attention reserved to the sick brother—face feelings of jealousy and competitiveness.28 Hence, there is a need for a strong social network and support. From this situation emerges a greater problem, namely, that the father and mother, while representing the main source of support for siblings, inevitably become part of the discomfort or experience. Peer groups are also a key part of support, as they represent people who care about them.29
As with siblings, the whole family needs emotional support, a safe place where they can be themselves,27 and it is precisely on this that paediatric nurses could intervene through child-centred care and FCC.1 The latter, in fact, would seem to help caregivers cope with the feeling of ‘burning’ caused by the illness of their child.34 Paediatric nurses must take care of the sick child and of parents who need support and siblings who need their pain to be recognised and properly evaluated as part of the social support network they need.22 At the same time, it is very complex to form a health network that acts as a support able to identify the psychosocial discomforts of siblings and fathers, to analyse them with specific tools and to provide adequate support to this population.39
Limitations
The present study has the following limitations. The largest number of selected studies are qualitative. Analysing the coping strategies of siblings and fathers of children suffering from oncological pathology, since these variables are not quantifiable, the qualitative study turns out to be the right choice. The disadvantage, however, is that it may not be generalisable, especially if the reported data do not reach saturation.
An important limitation is also represented by the fact that at the time of the interview, the parents were together, making it difficult to understand exclusively the fathers’ points of view. Moreover, in many of the studies included, the number of fathers involved was lower than that of mothers, limiting the understanding of purely paternal coping strategies. Another limitation is represented by the fact that all the pairs of parents enrolled in the studies were heterosexual. Additionally, we can consider a limitation of this paper to the fact that the research was conducted only on papers published in the last 10 years and only in Italian and English. Finally, in the various studies, there appears to be little ethnic variability. These elements affect the generalisability of the results.
Implications for clinical practice and research
The literature review shows that further studies are needed to investigate the perspectives and views of siblings and parents. It would be interesting to carry out these studies in different contexts to understand how and if cultural differences affect the coping strategies of the studied population.
Some authors report the relevance of the perception of FCC strictly related to lower levels of caregiving burden and increased quality of life and satisfaction. Having said that, an FCC approach led by paediatric nurses will contribute to empowering and supporting parents in their role as caregivers, promoting personal education and good time management aiming to empower the family’s strength.1 34
The ultimate goal should be to understand what practical actions could be taken to foster coping strategies. In this regard, what is described can guide nursing care planning. As defined above, FCC in paediatrics is fundamental, even more so in delicate contexts such as oncology.1 In fact, after listening to the points of view of fathers and siblings of children suffering from cancer, the need to deepen how the paediatric nurse can offer his or her support, in particular as an external figure for siblings, is evident. Paediatric nurse-led discharge within a multidisciplinary team becomes crucial in making the ‘home time’ safe and happy, which increases children’s and families’ confidence and improves paediatric nurses’ satisfaction.40 41 There are examples in the literature of support provided to siblings through virtual communities or camps that seem to contribute to the social support network needed by siblings.38 42 To do this, we need specific training and a multiprofessional team composed of doctors, paediatric nurses, psychologists and play therapists who create effective programmes. In contexts where discharge from the hospital of paediatric oncological patients is well planned and organised, feelings of safety and psychosocial aspects are greatly acknowledged and appreciated by the child and family.43