Abstract
Recent years have shown a welcome trend in the number of people surviving cancer. The impact of cancer survival has focused primarily on the patient perspective, and limited research has explored the effect of parental cancer on children. No research to date can be found which explores children’s experiences of parental cancer from a narrative perspective yet the way in which people tell their story is associated with emotional wellbeing. Measures of attachment, resilience and trauma were completed by 10 children (six girls, four boys aged 10–18 years) all of whom have a mother with non-terminal cancer. Each child also completed a narrative interview where they spontaneously described their experiences. Interviews were analysed drawing on narrative and thematic approaches to ensure the structural and performative as well as content of the stories could be understood. Experiences were interpreted within the context of attachment, resilience and trauma. Clinically high levels of trauma were found within this group even for securely attached and resilient children. The narrative analysis corroborated this finding. Implications for services supporting families are discussed.
Introduction
Confronting parental cancer can be a threatening experience for children (Visser, Huizinga, van der Graaf, Hoekstra, & Hoekstra-Weebers, 2004). While most children cope well with their parent’s disease, a significant number experience psychological distress and, in severe cases, symptoms of post-traumatic stress (Huizinga et al., 2010). Research exploring the impact of cancer has tended to prioritise the medical experiences of the patient with limited research exploring children’s experiences of a parent’s cancer. In the United Kingdom, over a lifetime, one in two people will be told they have cancer. Adults aged 25–49 years contribute a tenth of all new cancer cases with females being twice as likely to develop the disease, many of whom are likely to be a parent of dependent children or adolescents. Cancer survival rates are increasing with two in four surviving for at least 10 years, and it is predicted this will further increase to three in four within the next 20 years (Cancer Research, 2016). Consequently, there are implications not just for the patient but for their family who also experience and share in the mutual journey with cancer.
Previous studies exploring children’s experiences of parental cancer typically found children did not have access to information they wanted, they struggled with their parent’s diagnosis and treatment, and found hospitals to be frightening places (Davey, Gulish, Askew, Godette, & Childs, 2005; Issel, Erksek, & Lewis, 1990; Thastum, Johansen, Gubba, Berg Olesen, & Romer, 2008). These studies analysed data gathered from semi-structured interviews and focus groups using content analysis to objectively evaluate the words used to describe experiences.
Narratives and parental cancer
Narrative approaches similarly yield an analysis of story content but additionally reveal structural and performative elements of how a story is told. A systematic literature review (Tozer, 2016) identified no research which explored children’s experiences of parental cancer from a narrative perspective; yet, the way in which a story is told has been linked with psychological wellbeing and can reveal symptoms of trauma (Baerger & McAdams, 1999). Given that the empirical evidence indicates parental cancer negatively impacts children’s wellbeing, there is scope for exploring whether this may be linked to how they make sense of their experience through telling their story. Finding out that a parent has cancer could be a major threat to attachment security, and therefore, it may be helpful next to draw upon the wider literature linking trauma, attachment and narrative capacity to explore this further.
Trauma and narrative coherence
Traumatic events that overwhelm an individual’s capacity for both emotional and cognitive processing could prevent the encoding and construction of a coherent internalised memory of the event. Horowitz (1976) theory of stress response syndromes which later influenced the criteria for post-traumatic stress disorder in the Diagnostic and Statistical Manual (5th ed.; DSM-V; American Psychiatric Association, 2013) and the International Statistical Classification of Diseases (10th Revision, World Health Organization, 2016) states that incomplete initial processing of a traumatic experience produces an incoherent memory of the event. Cardena and Spiegel (1993) suggest experiencing a traumatic event causes peritraumatic dissociation where the encoding and integration of the event is disrupted to minimise psychological distress. This is evidenced by the absence of a coherent narrative about the event. Witnessing an event which threatens another person has been found to be traumatic for children (Levendosky, Huth-Bocks, Semel, & Shapiro, 2002). A child whose parent is having cancer treatment may simultaneously experience this both as an attachment threat and as a traumatic event giving rise to symptoms of stress. Research has found children experiencing parental cancer show heightened stress levels similar to those found in children who had experienced a traumatic event (Huizinga et al., 2010). Understanding how the attachment system regulates children’s experiences of traumatic events could have clinical implications for services and individuals supporting children whose parents are seriously ill.
Attachment theory and the development of narratives
Armsden and Lewis (1993) stated, ‘Attachment theory provides a framework for understanding and predicting children’s reactions to changes in family life produced by serious parental illness’ (p. 154). Bowlby (1969) argues the attachment a child forms to a parent or caregiver is a fundamental determinant of child development. The attachment system is evolved to deal with threats and promote love and survival whereby the infant engages in behaviours to seek and maintain proximity to their caregiver to protect them from danger. How the caregiver responds is key to shaping later attachment related strategies. When caregivers are responsive and accessible, the child is more likely to explore their environment and seek comfort when threatened. These children are considered to have a ‘secure’ attachment style which may provide extra resilience when experiencing traumatic events (Bunce, Rickards, & Harvey, 2004). Children whose caregivers are often unavailable or unable to provide comfort in times of threat learn to signal their needs in ways that optimise a protective response and may disguise their anxiety in response to danger. These children, often labelled as insecurely attached, typically receive inconsistent care or rejection from their caregiver (Miller, 2008). These attachment experiences create internal representations of the self, others and the world and shape behavioural and emotional responses to threatening situations. A child who experiences a sensitive and responsive caregiver develops an internal working model of others as safe and competent, the self as worthy of care and the world as safe and secure. The internal working models concept is the foundation for understanding how early attachment experiences operate in adult relationships (Pietromonaco & Feldman Barrett, 2000). In times of threat, this provides the child with a context that facilitates self-soothing, emotion regulation and active coping. Children with insecure attachments internalise representations of the world as a less safe place, lack trust in others and experience the self as less worthy of care.
Although the attachment system cannot be directly observed, these internal working models can be revealed through observing what happens when children are confronted with an attachment threat.
Narrative theory proposes that stories are fundamental to the way individuals make biographical sense of their lived experiences (Murray, 2008). Narratives can help to create order and meaning out of threats and adversity but can also be disrupted when traumatic events seemingly become emotionally overwhelming and difficult to process from a cognitive perspective. Although attachment and narrative theory have developed independently, both approaches draw on discursive analysis to reveal how individuals represent dangerous events in their lives (Dallos, 2006). Indeed, there is evidence to suggest that attachment style directly influences a person’s capacity to construct a coherent narrative about a stressful event. Fivush and McDermott Sales (2006) found that individuals with a secure attachment style developed coherent and emotionally regulated narratives of stressful events. In contrast, those with an insecure attachment developed emotionally flat, incoherent narratives of the threat (Main, Kaplan, & Cassidy, 1985). However, the impact of trauma and attachment style on narrative formation has not yet been understood within the context of parental cancer.
Aims
This study aims to explore how a child’s attachment style, resilience and trauma levels influence their experiences of having a mother with cancer and how this effects the way they construct a narrative about their experiences. Attachment style, resilience and trauma will be assessed so that the impact of these variables on narrative capacity can be considered.
Methodology
A narrative methodology is well suited to exploring human experience. Grounded in phenomenology and interpretivism (Savin-Baden & Van Niekerk, 2007), narrative inquiry analyses how people give meaning to experiences through constructing stories (Trahar, 2009). Narrative inquiry is a means of gathering, analysing and representing these stories within particular social, historical and cultural contexts. Reissman (2008) describes three levels of inquiry and analysis in narrative research. These levels relate to the thematic content of the narrative, how the narrative is told in terms of its structure and how the narrator positions themselves as the story teller with the listener.
Research design
This study used a mixed-methods design within a narrative inquiry framework (Clandinin, 2006). Children completed an open-ended narrative interview alongside an interview measure of attachment style and questionnaire measures of resilience and trauma. Relationships between these data types were explored using descriptive statistics and narrative analysis.
Ethical considerations
This topic is of a sensitive nature, and therefore, all provisions to support families participating were implemented including access to support from health care professionals, including a Clinical Psychologist with expertise in working with families experiencing parental ill health. Issues of confidentiality, informed consent and voluntary participation were discussed with the supervising team, health care professionals and families. Families were informed that the data gathered would be confidential and anonymised to create a context of trust and safety for children to be open and honest about their experiences and to protect the identity of both the child and parent. The researcher met families on at least one occasion prior to the research taking place with a minimum 1 week gap to ensure families had time to ask questions and consider participating. Families were told they could withdraw from the study at any point, and this would not effect their cancer treatment. Families who agreed to participate were asked to sign a consent/assent form and met the researcher on a separate occasion at the recruiting site where the research took place.
Participant recruitment
Parents were informed by their Cancer Nurse Specialist the service was involved in this research and were given a summary leaflet. Parents were asked to contact the researcher if they wanted to participate. Parents and children expressing interest met the researcher at a location of their choosing where they were provided with an information sheet detailing the research in greater depth. Families were asked if they had any questions or concerns about the research to allow for further discussion about the implications of participating. Collecting the data at recruiting sites ensured the research was undertaken in a familiar and supportive environment for children where staff were available afterwards if necessary.
Participant sample
Families were recruited through two cancer charities and a local National Health Service (NHS) hospital. Children and adolescents aged 9–18 years whose parent had non-terminal cancer were invited to participate. Six families agreed to take part in the study; 10 children (six females and four males) aged between 10 and 18 years participated. Each child had a mother with cancer, five mothers had breast cancer and one child’s mother had medullary carcinoma.
Data collection
Participants completed two questionnaires and two interviews. Details of these data collection procedures and analyses are as follows.
Resilience Scales for Children and Adolescents
Due to the sensitive nature of the research study, the data collection began with the Resilience Scales for Children and Adolescents as this questionnaire focuses on a child’s strengths and resources (Prince-Embury, 2007). This self-report questionnaire measures three subscales of resilience: sense of mastery, sense of relatedness and emotional reactivity. The measure has shown to demonstrate internal consistency (α > 0.8) and evidence of concurrent validity with similar measures such as the Becks Youth Inventory (Prince-Embury, 2011). The scales were scored according to the manual which classified respondents as having either high, average or low levels of resilience.
Children’s Revised Impact of Events Scale 8 (Children and War Foundation, 2005)
Second, children completed the Children’s Revised Impact of Events Scale 8 (CRIES-8). This self-report questionnaire is based on the Impact of Event Scale (Horowitz, Wilner, & Alvarez, 1979) and was adapted by the Children and War Foundation (2005). It measures two scales linked to trauma: intrusion and avoidance. The measure contains eight questions and requires children to respond using a Likert-type scale. Scores above 17 have been found to correctly identify >80% of children with a diagnosis of post-traumatic stress disorder (Perrin, Meiser-Stedman, & Smith, 2005). The measure has proven efficacy to identify post-traumatic stress symptoms including in war-affected children in Bosnia and child survivors of the 1999 Athens earthquake (Giannopoulou et al., 2006; Smith, Perrin, Dyregrov, & Yule, 2003). This measure has good face and construct validity and correlates with other indices of distress including the Impact of Event Scale (Perrin et al., 2005). The scales were scored according to the guidelines (Children and War Foundation, 2005).
Narrative inducing question
Children were invited to tell their spontaneous story about their experiences of having a mother with cancer using a single narrative inducing question; ‘I would like to hear your experiences of having a mother with cancer. Please can you tell me as much as you feel comfortable with and start where ever is right for you?’
Children were not interrupted allowing them to tell their story in a way that was personally meaningful, and children were offered prompts such as, ‘Can you tell me a bit more about that?; What was [your experience] like?’ if they struggled to initiate a narrative. Following each interview, the transcribed narrative was condensed into a short summary to reveal the narrative structure. Narrative structure was explored using Labov’s (1982) framework to identify sequences and structural elements occurring across stories. Labov (1982) identified a fully formed narrative as containing six elements: an abstract (summary or ‘point’ of the story), orientation (to people, time, places, situation), complicating action (a sequence usually a crisis with a turning point), evaluation (communication of emotions and meaning), resolution (the outcome of the story) and a coda (the end of the story). These elements were examined throughout each transcript in turn. The narratives were then analysed using a thematic analysis (Braun & Clarke, 2006) to identify the content of the story. The transcripts were read multiple times and words and phrases were initially coded and later grouped together to create themes. Themes from individual transcripts were then compared across transcripts to identify similarities and differences.
Finally, each narrative was analysed performatively (Reissman, 2008) to identify the way in which the story is told, for example, the degree of overall coherence and the presence of trauma markers. The integration of these approaches allowed the narratives to be explored at multiple levels to ensure the understanding of children’s experiences was detailed and robust. Transcripts were independently coded by the supervising team to ensure the coding and analysis was credible.
Child attachment interview
Finally, children completed the Child Attachment Interview (CAI) (Shmueli-Goetz, Target, Fonagy & Datta, 2008). This semi-structured interview of 17 questions is designed to identify the child’s attachment style to a caregiver by inviting the child to describe their relationship and classifying their answers according to one of four different attachment styles. The measure has demonstrated high inter-rater reliability (α = .88) and internal consistency (α = .92) (Target, Fonagy, Shmueli-Goetz, 2003). The CAI shows comparable results to other measures of attachment such as the Story Completion Task, demonstrating concurrent validity (Shmueli-Goetz et al., 2008). The CAI was transcribed verbatim and analysed according to the method established by Shmueli-Goetz et al. (2008). The CAIs were analysed by a trained coder and independently corroborated as a further reliability check by members of the supervising team.
Following participation, the child and parent were given a debrief document and a list of support services they could contact. Families were informed the researcher would later share a document summarising the research.
Integration of analyses
Each narrative was analysed within a narrative inquiry framework to establish its thematic content and structure. Following this, the narratives were interpreted within the data framework of assigning attachment style and resilience and trauma levels. The integration of the narratives with the results from the CAI, Resilience Scales for Children and Adolescents and CRIES-8 added an extra layer to our understanding of children’s experiences and allowed the relevance of these variables to be explored.
Reflexivity
The researcher took part in a bracketing interview. Evidence has shown bracketing mitigates the potentially confounding effects of a researcher’s personal experiences relating to the research (Tuffard & Newman, 2010). During the bracketing interview, the researcher’s subjective position was explored which highlighted the influence of personal and professional experiences in this area particularly regarding how cancer is talked about within the family. The researcher also kept a reflective journal which facilitated reflections of the research process to nurture personal development. Particular topics discussed included difficulties with recruitment, the impact of hearing children’s stories and reflections of the implications of this research for services supporting children and families.
Findings
This research identified clinically high levels of trauma experienced by this group of children. Factors which have been shown to predict levels of trauma such as attachment style and levels of personal resilience (Bunce et al., 2004) were unsubstantiated in this study. This research found a secure attachment and high levels of personal resilience did not always provide an adequate buffer against the traumatic experience of parental cancer. However, a thematic analysis found a wider range and balance of themes in the experiences of those children who are securely attached to their mother. A breakdown of each component of the analysis is presented below.
Quantitative analysis
Results from the Children’s Revised Impact of Event Scale 8
Results from the CRIES-8 demonstrated half the children in this study scored > 17 which identified them as experiencing levels of trauma associated with post-traumatic stress disorder (PTSD; Figure 1).
Individual scores from the CRIES-8 showing the clinical cut off score used to identify post-traumatic stress symptoms.
Results correlating attachment style and trauma level
Children across the secure and insecure attachment styles showed symptoms of trauma. While fewer (n = 2) children with a secure attachment style show symptoms of trauma, the highest score on the CRIES-8 (24/40) came from two siblings with a secure attachment. This suggests attachment style cannot fully mitigate against the traumatic effects of having an ill parent. Results also showed three quarters of children with an insecure attachment style showed similar levels of trauma found in children experiencing PTSD (Figure 2).
Participant’s attachment style and scores above or below 17 on the CRIES-8.
Results correlating attachment style and resilience level
According to these results, children with an insecure attachment are less likely than their securely attached peers to have high levels of resilience and are more likely to have low levels of resilience (Figure 3).
Children’s attachment style and resilience level.
Qualitative analysis
Structural and performative narrative analysis
A structural analysis provided evidence of trauma in each of the narratives. In most stories, (n = 7) the beginnings lacked coherence where characters had not been introduced, background information had not been given and events were not contextualised. In each of the stories, the beginnings were characterised by the presence of multiple pronouns, for example, ‘she’, ‘it’, fragmented sentences, for example, ‘she was’; she had; she was saying . . . ’ and premature endings, for example, ‘so . . . yeah . . . ’. Such language dimensions have been found to predict high levels of post-traumatic stress in story tellers (Jaeger, Lindblom, Parker-Guilbert, & Zoellner, 2014; Romisch, Leban, Habermas, Doll-Hentschker, 2014). The ending of a narrative has received less attention in the trauma research. However, the available literature states unresolved narratives are a sign of incoherence (Baerrger & McAdams, 1999). In this study, less than a third of children ended their story with a resolution and all of those who did have a secure attachment to their mother. Over half (n = 6) of the children ended their narrative with speech fillers such as ‘I don’t know’ and dissociative comments, for example, ‘I can’t remember’. Research has suggested the presence of these features in a narrative is associated with higher levels of trauma characteristics such as re-experiencing the event and dissociation (Jaeger, Lindblom, & Parker-Guilbert, 2014; Kenardy, Spence, & Newcombe, 2007; Figure 4).
Results of a structural analysis showing Labov’s (1982) six elements of a fully formed narrative.
The beginning and end are often the most significant parts of a story and provide evidence of coherence. In seven stories, there was no clear beginning as children typically went straight in to the story without setting the scene or contextualising information. Despite the small sample in this study, the range of ways stories began suggest children have very different experiences which could be related to differing attachment styles and levels of resilience and trauma. Children often but not always, began their narrative discussing when they first found out about their mother’s cancer and how they felt, often referring to her cancer as ‘it’. Other ways children began their story included saying how they have coped with previous traumatic events and how life has stayed the same. Below are example quotes of how children start their story. Pseudonyms have been used.
Well I found out in quite a bad way I guess, like I was just about to go somewhere and I overheard a phone call, erm, but straight away I didn’t obviously it was like a shock but almost I didn’t know enough and mum was like, we don’t know it could be tiny. (Louise) I think it was October last year I don’t know but it was some time at the end of last year and she was, she had, she was saying ‘oh I’ve got a bad breast’ for quite a few days and then she went to see the doctors and then they said she obviously had cancer and she told us, it was a bit of a shock really and then well it, it was bit upsetting first few days’. (Nick)
Throughout each narrative were examples of denial and minimisations of both their mother’s cancer and their own emotional response. These narrative features have been found widely in the trauma research and are considered to act as protective functions, shielding the person from the emotional reality of the experience (Brown, 2013; Smith, 2013). Examples of denial, avoidance and minimisations can be found in the quotes below: . . . I was just, I went away anyway. Erm, and it was weird I don’t know why but I wasn’t really upset by it. I was at the start but it made me, I calmed down . . . (Louise) I dunno can’t really remember what happened after then until, honestly I’ve got a really bad memory, I can’t really . . . err. (Frank) . . . I tried to forget about it cos erm it’s not exactly a nice thing to think about . . . (Larry)
Children also ended their narrative in different ways. Seven children did not end their narrative with a resolution where experiences were concluded and the observer was brought back to the present. Instead narratives ended by using speech fillers such as ‘I don’t know what to say’ (Nick), discussing how life goes on around their mother’s cancer and arguments between family members. These endings which often contained fragmented sentences and multiple speech fillers provide further evidence of an incoherent and incomplete narrative. Examples of narrative endings can be found in the quotes below: . . . [Mum] is very short with me for days on end because you’re annoyed with me but with [my brother] you forgive him straight away and that’s not fair. I don’t really know what else to . . . (Mandy) It’s a bit of a weird thing to talk about really. We don’t really talk about it with other people. And erm, cos [younger brother] he’s so young he’s like fine with talking about it and stuff and he doesn’t really worry about it I mean I don’t really worry about it [older brother] does but [younger brother] doesn’t really care about it, someone having a headache really. I don’t know what to say. (Nick)
Thematic analysis
As part of the narrative inquiry framework, narratives were analysed using thematic analysis. This revealed five themes present across the narratives each relating to a different aspect of the children’s experience.
Talking about ‘it’ is hard (but helpful)
In half of the narratives children did not refer to having a mother with cancer, instead her cancer was referred to as ‘it’ and ‘a thing’ often throughout the narratives ‘ . . . it’s just a thing . . . ’( John). Although many children stated talking about their experience was difficult few explained why this was the case. Those who did said cancer is ‘scary,’ and it has ‘negative connotations’ due to how it is presented in the media ‘ . . . if all you ever hear about . . . is oh some man has died from cancer . . . it doesn’t present it very well for you when it actually happens . . . ’ (Clare). Children also said they don’t always like talking about their mother’s cancer because of the reactions of other people ‘ . . . people get confused by it and then it’s hard to explain and then it’s just it’s messy really’ (Chloe); ‘ . . . when I tell people now that my Mum had cancer they all go, “uhhh oh my God!” and I say, “it’s fine, she’s fine”’ (Louise). John referred to finding it difficult to talk to friends about because of the location of his mother’s cancer: . . . where it is like in her, breast it’s something that you don’t really talk about to friends as much like you don’t kind of talk about it say it was in her arm or something . . . if it was somewhere different it might be a bit more kind of, not so, well not embarrassed but not so keen to talk about it.
In contrast, some children described positive experiences of telling people and said awareness often meant friends provided them with emotional support ‘ . . . my friends supported me so so much because like they were careful like the way they talked about things . . . ’ (Clare). Children also described friends providing practical help such as driving them to school ‘ . . . all my friends have all been like agreeing to take me to school . . . ’ (Nick).
Life has changed
Children described how their life had changed since their mother’s diagnosis in different ways ‘ . . . I had time off [school] a lot cos . . . I was always worried . . . ’ (Louise); ‘ . . . we got a dog . . . ’ (Frank). Children across the age range discussed helping their mother complete chores such as tidying, cooking and cleaning ‘ . . . helping her carry the shopping in . . . ’ (Mandy); ‘ . . . we have to do [chores] around the house when she’s in bed like you know, tidying up and stuff . . . ’ (Evie). Some children said they tried to be quieter around the house while others said how life is different without an explanation ‘ . . . we have to be a bit quieter in the house . . . ’(John); ‘ . . . it’s just basically completely changed everything . . . ’ (Larry). Children also discussed their mother’s treatment regime, often highlighting chemotherapy as being particularly difficult and created the most change in their mother ‘ . . . the operation wasn’t the worrying bit I guess it was the chemo because of how like rubbish it made her feel . . . ’ (Louise). Children said chemotherapy caused their mother to change both in her appearance through losing her hair and caused her to spend more time in bed through tiredness. ‘Well it was quite weird mum having no hair . . . ’ (Nick); ‘ . . . because I think it was like the drugs that was making her drowsy and stuff and really tired and got headaches and stuff . . . ’ (Larry). Family relationships also changed as this experience brought some families closer with more time being spent with extended family but it also caused a strain in relationships particularly with siblings who either did not understand their mother’s illness or who were unwilling to help with daily chores ‘ . . . my brother does annoy me, because he doesn’t help at all and that’s where arguments kind of start . . . ’; (Louise); and ‘ . . . I think it sort of brings us closer together as a family really because we see a lot more of each other . . . ’ (Nick).
I have mixed feelings about this experience
The beginning of the cancer journey was identified by children as being a particularly difficult time ‘ . . . it was a bit upsetting first few days . . . ’ (Nick) and ‘ . . . at the beginning it was like, yeah a bit like not nice’ (Larry). Children often said they felt ‘shock’ at the beginning which they attributed to not expecting their mother to be diagnosed with cancer ‘ . . . I just think it was shocking when I first found out’ (Larry) and ‘ . . . it was like a shock . . . ’ (Mandy). Children often described having mixed feelings about this experience, they were worried and upset about their mother’s cancer, while Evie said she was both worried and not worried ‘ . . . I didn’t feel worried about her or anything . . . I was just worried about what was happening . . . ’. Louise said she was both upset and not upset ‘ . . . I wasn’t really upset by it . . . I just remember being upset’. Nick spoke about one of the benefits of his mother’s cancer was she was at home more often ‘ . . . there’s some good things about it that’s, so mostly because she’s ill she doesn’t really go to work that much and that means we get to see a lot more of her . . . ’.
Our cancer journey changes over time
Children described their experiences of maternal cancer changed over time ‘ . . . we kind of understood it more and I knew what was going on . . . ’ (Evie). Larry described the beginning of the journey as being ‘manic’ ‘ . . . stuff started to get a little bit manic when she went to have the treatments . . . ’, and with time children said life became settled as they got in to a routine ‘ . . . but then it just kind of, yeah . . . just settled down a bit really’ (Chloe); ‘ . . . once we got in to the routine it was fine’ (Nick). Children also described their mother’s experience changed over time with certain times such as during chemotherapy being harder than others ‘ . . . but you kind of don’t think it’s gonna be that hard until . . . all her hair goes . . . ’ (Louise). John anticipated the future as being good ‘ . . . when it’s gone it’ll be gone and then everything will be back to normal and that’ll be good’.
Living with uncertainty
Four children described periods of uncertainty where their mother’s treatment was marked by unexpected stays in hospital and changes in treatment ‘ . . . she was due to stop but then the doctor said “oh you’ve got to do another 12 weeks” . . . ’ (Nick): . . . she was like ‘oh I don’t have to have chemotherapy’ so it was only radiotherapy and we were like ‘that’s good’ and then we found out she did have to have chemotherapy so that like was another blow and then . . . she wasn’t gonna have to have her lymph nodes removed and then she did have to have them removed and so it’s just kept getting worse . . . (Clare)
Children across the age range said they knew little about cancer before their mother’s diagnosis and therefore were uncertain about what treatment she would have and what the future held ‘ . . . I was kinda worried because I didn’t know what was gonna happen . . . ’ (Evie) and ‘ . . . is she gonna get it again?’ or, am I more likely to get it . . . ’ (Louise). Nick asked about cancer treatment ‘do you know what radiotherapy is? Is it something that you put a mask on?’. Children also said they wanted to know more about what was happening and said the worry they experienced when they were uncertain lifted when they were clear about treatment and the outcome ‘ . . . we kind of understood it more and I knew what was going on when things were happening which made me feel more kind of comfortable . . . ’ (Evie).
Discussion
The aim of this study was to explore how a child’s attachment style, resilience and trauma levels influences their experiences of having a mother with cancer and how this effects the way they construct a narrative about their experiences.
This study found each child told a narrative which reflected a level of trauma present in their experiences. This was corroborated by the results of a quantitative trauma measure which showed half of the children in this study showed clinically high levels of trauma. A secure attachment and high levels of personal resilience did not always protect children from the emotional consequences of having a mother with cancer. In describing their experiences, each child typically said they were ‘okay’, ‘fine’ and ‘not worried’. While this could reflect the reality of their experience, it could be evidence of the activation of defences such as denial and minimising to protect them from the level of trauma associated with this experience. These defensive attachment strategies typically act to protect the child from the distress of not having their needs met by their attachment figure. However, in this research, it could be evidence that even the securely attached children are emotionally overwhelmed by their experiences and employ these defensive strategies to help them cope. This suggests an ill parent who temporarily may be perceived as unable to meet all of the child’s needs represents a sufficient threat to activate the child’s defensive attachment strategies for emotional protection. The current study suggests that while core attachment styles are likely to remain stable over time, the experience of trauma may trigger the use of predominantly defensive attachment strategies in otherwise secure children.
Further evidence that children in this study might be engaging in defensive attachment strategies is suggested by their use of discourse strategies for negation and minimisation (Reicher, 2013). The transcripts contained many examples of children’s attempts to neutralise distressing emotions through both forgetting and distorting what may have been upsetting memories through the use of phrases such as ‘. . . I can’t remember . . .’ and ‘. . . it was fine . . .’ It could be hypothesised that such discursive markers represents exemplars of denial related to a traumatic experience. The reasons why children find this experience traumatic warrants further understanding, however a possible explanation may be that parental cancer represents an ambiguous loss for children. Ambiguous loss is often unclear, confusing and traumatic for family members as there is both a presence and absence of a loved one giving rise to conflicting and contradictory emotions (Boss, 2010). Ambiguous loss has been related to trauma and attachment difficulties where a caregiver is physically present but unable to care for their child. Ambiguous loss has been identified in people whose family member has experienced chronic illnesses such as brain injury, dementia and mental health issues (Boss, 2010). While research has not explored ambiguous loss in relation to a cancer diagnosis, this may contribute to the high trauma scores observed in this research.
The current study supported previous research exploring the effect of parental ill health for children. Offspring of chronically ill parents have been found to be overwhelmed by the demand of caring for their parent, often did not have access to the information they wanted about their parent’s illness and perceived their own risk of developing the illness to be higher than their peers (Harris & Zakowski, 2003; Schrag, Morley, Quinn, & Jahanshahi, 2004).
Despite the small sample size, this study incorporated the voices of children of differing ages with different experiences of having a mother with cancer. Children in this study had a variety of attachment styles and levels of resilience and so constitute a relatively heterogeneous sample. Although not generalisable, his research provides an insight into the experiences of the 10 children who participated.
Clinical implications
Children in this research showed clinically high levels of trauma which has implications for services supporting both children and patients emotional wellbeing. Despite these findings, only one child discussed accessing support from a local charity and most said there were either no services for them or they were unsure what they could access. Consequently, services need to facilitate accessing these children in order to help prevent long-term emotional, cognitive and behavioural issues developing. Services must be well equipped to support these children, have skills in developing safe and secure relationships with children and facilitate the development of a coherent narrative about their experiences. Therefore, it is likely to be beneficial for services to help facilitate conversations between parents and their children about cancer and treatment to help strengthen the attachment relationship. As the beginning of the cancer journey was particularly difficult for children, their ability to process a lot of new information may be limited. It may therefore be helpful for parents and services to have age appropriate literature available and to offer support to parents about communicating their diagnosis and treatment. Opportunities to have conversations with children throughout the parent’s cancer journey should be encouraged with both families and professionals to enable information about cancer and treatment to be cognitively and emotionally processed.
Research shows a less developed trauma narrative hinders recovery from the trauma (Amir, Stafford, Freshman, & Foa, 1998). Offering children a therapeutic space to construct a coherent narrative would allow them to emotionally process their experience in a way that is meaningful to them. Psychological wellbeing is strongly correlated with a person’s ability to create and integrate coherent life stories (Baerger & McAdams, 1999), therefore providing children with this opportunity is likely to have a positive impact on their wellbeing. While this was not directly explored here, it may be beneficial for future research to explore the psychological impact of creating a coherent narrative following a parent’s treatment for non-terminal cancer.
Conclusion
Children whose parent has non-terminal cancer may experience symptoms related to trauma. While this research did not explore why children show trauma-related symptoms, it may be due in part to lack of knowledge leading to a reliance on how cancer is framed in the media and popular culture. These children may also experience ambiguous loss of their mother who is physically present but unable to care for them as usual. Further research may like to use a similar methodology to compare and contrast children’s experiences of parental cancer in fathers. Services supporting families could help mitigate against the traumatic nature of cancer by offering a reflective space for children to tell their story and provide an opportunity for parents to discuss different ways of talking to their children about their diagnosis and treatment.
Footnotes
Acknowledgements
I am eternally grateful to the 10 children who shared their experiences with me, without their honesty and openness, this research would not have been possible, and therefore, I owe them all so much. I would also like to pay huge thanks to the six mothers who not only allowed me to talk to their children but who also showed so much strength and desire to help improve services supporting families.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
