Original Research

Coping strategies of fathers and siblings of children with cancer: a literature review

Abstract

Introductions The impact of paediatric cancer diagnosis on the family system is universally recognised, as well as the need for the family to find a new balance. Paediatric nurses, being promoters of the care of family and children diagnosed with cancer, need to deepen the experiences of siblings, fathers and mothers to offer better holistic child and family centred care. Although other literature reviews on this topic are present, none of these take into consideration the coping strategies of fathers and siblings in an aggregative way, as we do in this paper. The aim of this study is to look into the coping strategies of healthy siblings and fathers during the therapeutic process of a child with cancer.

Methods An aggregative literature review was conducted through the consultation of some of the main electronic databases. Studies satisfying the following criteria were included: (a) primary studies conducted in the last 10 years, (b) published in English or Italian, (c) focusing on coping strategies adopted at diagnosis and during therapy by fathers and siblings of children with cancer.

Results The results were collected in three main categories looking at the problem from the parents’, the siblings’ and eventually the whole family’s points of view. The three categories have in common the expression of contrasting feelings by each member of the family that generates changes in roles and responsibilities.

Conclusions Further studies are needed to better understand how nurses can lead a family centred care approach to improve the general familiar management and coping strategies.

What is already known on this topic

  • Coping strategies of fathers and siblings of children with cancer are various and based on cultural background.

What this study adds

  • This paper highlights the feeling of frustration of the part of the family not involved primarily in the care of the child with cancer.

How this study might affect research, practice or policy

  • This article could lead to the idea of creating a network/community for families (particularly fathers and siblings) of children with cancer to help them cope with the disease’s experience.

Introduction

In paediatrics, the impact of cancer diagnosis on the family system is universally recognised, as well as the need for the family to find a new balance to cope with the diagnosis. Paediatric nurses, being promoters of the care of family and children diagnosed with cancer, need to deepen the experiences of siblings, fathers and mothers to offer better holistic child and family centred care (FCC).1 2 These professionals through an FCC approach offer psychological support and help all family members to rebuild their relationship.3 4 Coping is defined by Lazarus and Folkman5 as ‘constantly changing cognitive and behavioural efforts to manage specific external and internal demands that are appraised as taxing or exceeding the resources of the person’.5 Gender differences have been identified in parental coping strategies in paediatric oncology.6 In terms of social support, mothers receive more social support as they actively seek help and find support in wider social networks compared with fathers and are supported by wider social networks than fathers.7 Burns et al8 observed that 25.5% of mothers and 21.3% of fathers have significant marital distress at the time of diagnosis, which increases after 2 years of diagnosis to 36.2% for mothers and up to 42.6% for fathers. Discomfort appears to be associated with fathers’ perception of their parenting role, as they experience feelings such as role conflict, role ambiguity and fatigue.8 Fathers feel unable to adequately assist and support (including financially) their child suffering from cancer, compromising their ability to meet the basic needs of the family and fulfil what is regarded as their role. This causes embarrassment, humiliation and consequent discomfort in talking about finances.9 Fathers also reported having fear, persistent thoughts and anxiety about money; they expressed the belief that they do not deserve to express their needs and that they feel vulnerable to recurrent financial toxicity.9 10

Siblings of children with cancer demonstrated to be resilient and experience few symptoms of cancer-related traumatic stress during the first 2 years after cancer.11 They experience out-of-the-ordinary situations and changes in their lives throughout their family’s journey over the fight against cancer.12–14 Parents of the child with cancer naturally tend to direct their attention towards the sick child, reducing attention towards the other children, who experience a feeling of abandonment or loneliness.15 For siblings, watching their brother or sister helplessly suffer from illness or treatment can be particularly stressful,16 they may witness the physical and emotional pain of their brother or sister and their parents and experience sudden, extended separation from them.17

The influence on the lives and experiences of siblings has not yet been fully explored. Changes in their brother’s or sister’s appearance (eg, hair loss or weight gain) symbolised the broader loss of normalcy within the family. Family changes included less time with immediate family, fewer family outings, postponed vacations, less attention from parents and the omnipresence of cancer in everyday life.18 In addition, the mother is often recognised as the primary caregiver of the child with cancer, while little is known about how the father copes with the care path of the child with cancer.19 20

Although other literature reviews on this topic are present,21 22 none of these reviews take into consideration the coping strategies of fathers and siblings in an aggregative way, as we do in the present study.

Materials and methods

Objective

The objective of this study is to investigate the coping strategies described in the literature adopted from the moment of diagnosis and throughout the course of care of a child suffering from oncological disease by healthy fathers and siblings.

Research questions

The following research question was asked: What are the main coping strategies applied by fathers and siblings of children diagnosed with cancer?

Study design

An aggregative literature review23 was conducted through the consultation of the following electronic databases: PubMed, APA PsycArticles and CINAHL. The following Medical Subject Headings (MeSH) terms were used: “Siblings”, “Fathers”, “Coping” and “Child Cancer”, combined with each other through Boolean operators (table 1).

Table 1
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Literature search strategy

Eligibility criteria

Studies satisfying the following criteria were included: (a) primary studies conducted in the last 10 years, (b) published in English or Italian, and (c) focusing on coping strategies adopted at diagnosis and during therapy by fathers and siblings of children with cancer. Studies in which the population consisted exclusively of mothers, prior to 2012 and not in English or Italian were excluded.

Therefore, commentaries, editorials, letters, PhD dissertations, conference abstracts and grey literature and all studies that did not investigate fathers’ and siblings’ coping strategies were excluded.

Data searching

Two researchers independently selected the studies. In case of any conflict, a third researcher analysed the studies to decide whether they could be included in the review. Bibliographic citations of the included articles were also analysed to identify any articles that were missed in the database search. The research initially produced 414 results based on title and abstract, and 17 articles were selected for the full-text review. Ultimately, 14 articles met the inclusion criteria and were summarised in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow chart (see figure 1).24 To perform an aggregative review, a priori method has been used.23 Two authors independently categorised the items and then concordantly add up data. Then, data have been aggregated into three different themes based on their analysis of the results. A third author has been involved in case of conflict between included items or aggregative themes. A final check of all the included articles was performed by three authors to ensure all articles’ items had been included in the themes. The quality appraisal of the studies was performed using the Quality Assessment for Diverse Studies (QuADS) tool, which assesses methodological and reporting quality in reviews.25 The authors chose this tool for its versatility and adaptability to heterogeneous studies.

Figure 1
Figure 1

Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram.24

Patient and public involvement

The authors declare no patient’s involvement in this aggregative review.

Results

Among the 14 studies included, 6 were conducted in Europe (Belgium, Portugal, Poland), 5 were conducted in Asia, 2 were conducted in the USA and 1 was conducted in Australia. Six studies had a qualitative design, five studies were cross-sectional (five articles) and three were descriptive studies. The most commonly used data collection method was the questionnaire (nine studies), followed by the interview (four studies) and the telephone interview (one study).

A research report (see online supplemental table) was produced of all individual articles that were tabulated according to title, authors, country, purpose, materials and methods, results. The studies were also evaluated for their methodological quality with the QuADS tool by two researchers independently, and a third researcher was consulted to resolve any disagreements. The QuADS tool consists of 13 evaluative indicators, each of which is measured on a 4-point Likert scale ranging from 0 (not at all) to 3 (complete), allowing researchers to distinguish the degree to which a criterion is met. Based on the evaluation using this tool, only two studies had a strong theoretical framework. The studies provided a sufficient description of the study method and the analysis used to arrive at the results. Furthermore, only three studies provided evidence that research stakeholders were considered in the research design (online supplemental file).

The populations studied were composed of parents (mothers and fathers) or siblings of children with cancer, and fathers alone were never interviewed.

Studies have investigated how to react to the diagnosis and path of oncological disease, as well as the real coping strategies of the populations studied, allowing us to aggregate the results based on ‘reactions and coping of the fathers’, ‘reactions and coping of siblings’ and ‘reactions and coping of the whole family’.

Reactions and coping of fathers

Fathers faced criticality due to coping with economic difficulties, such as the cost of hospitalisation and the fact that one of the two parents (typically the mother) would have to give up their job with a consequent reorganisation of roles within the family.26 Fathers would also have to spend much more time at home than usual, giving up part of their free time, so they need to develop coping strategies to adapt their time and the new role at home.27 The father, indeed, in the absence of the mother who is usually involved in caring for the child in the hospital must cope with the assumed role of the main person responsible for the house and the other children, becoming the one who supports the rest of the family.26 27 Coping was manifested by work outside the home for fathers28 or with problems sleeping or concentrating because of finances; hypervigilance to situations with potential to repeat financial trauma; self-denial to conserve finances or with self-destructive financial coping behaviour.9

Reactions and coping of siblings

It has emerged that siblings experience a form of distress, as the pathology of their sick sibling makes them unhappy, introverted and nervous.27 In addition, they develop relational problems towards their parents: they need to cope with the sense of loneliness that pervades them when they are left alone during the therapeutic pathway of the brother/sister, and attention to the sick sibling can cause feelings of jealousy.28 Siblings experience mixed emotions: if, on the one hand, they have to find coping strategies to face suffering for their brother/sister and try to receive news about his/her state of health, on the other hand, receiving less attention can convince them to be ‘less important’ in their parents’ eyes, causing a strong feeling of competitiveness towards their sick sibling.29 School-aged siblings cope with these problems with poorer academic functioning and more absenteeism but maintaining peer relationships. Adult siblings engage in higher levels of risky behaviours with potential problems for their health.13

Reactions and coping of the whole family

Parents’ first reaction was shock, followed by the need to blame someone for their child’s illness, often identifying God as the perpetrator.28 After a while some problems began to arise, both from the psychological point of view—such as guilt—and from the physical point of view through the process of somatisation.30 The creation of a social network focused on dialogue is fundamental to cope with the psychological problems and the sense of loneliness that the whole family experiences during the illness of the child. It becomes useful to create a safe space where the family can feel close and involved in the path of illness. Strategies coping adopted by all family members are an increased physical contact that plays a fundamental role, and working together as a team in order to get everything organised.26 The relationship between mother and father plays a fundamental role; in fact, it has been shown that non-divorced parents adopt better coping strategies. The illness of the child can bond spouses more or, conversely, negatively affect the separation between spouses due to distance caused by the long-term hospital stay.25 31

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

Conclusions

Although fathers may worry more about the economic situation and have to change roles at home, they are resilient and supportive of the family.

The relationship between mother and father is affected by the diagnosis and therapeutic path of the child.

Siblings suffer from not being the centre of parental attention. They seek support from someone who cares about them.

Together, parents and children need to confront and communicate and they try to recover physical contact, a source of safety.

Findings also are consistent with the transactional model of stress and coping, which suggests that psychological stress results when a person appraises environmental demands as taxing, exceeding his or her resources and endangering his or her well-being.5 39