How do young people find out about their parent's cancer diagnosis: A phenomenological study

European Journal of Oncology Nursing 13 (2009) 213–222

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

How do young people find out about their parent’s cancer diagnosis: A phenomenological study Alison Finch a, *, Faith Gibson b a

University College London Hospitals NHS Foundation Trust, 13th Floor, University College Hospital, 235 Euston Road, London NW1 2BU, United Kingdom UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Trust, 7th Floor Paul O’Gorman Building, Great Ormond Street Hospital, London WCIN 3JH, United Kingdom b

a b s t r a c t Keywords: Parental cancer diagnosis Interpretative phenomenological analysis Young people Diagnosis period Impact of cancer

Aim: Grief and its many manifestations can irrevocably change family life and the multiple relationships within. Informed by this, one is led to consider the extent an adult nurse provides a family focus to cancer care. It arguably remains wanting, particularly in adult healthcare environments where ‘family’ can still infer ‘spouse’ and the needs of children and young people at home may as a result go unrecognized. Little attention has been paid to what or how young people should be told about their parent’s cancer diagnosis, but from the limited research that has been undertaken, parents are seeking help with this aspect of communication. Methods: An interpretative phenomenological approach was used to explore the research question: How do young people experience learning about their parent’s cancer diagnosis? This was a single centre study recruiting seven participants, aged 14–18 years, which included two sets of siblings. Participants were interviewed on one occasion only. Results: The interview data revealed six dimensions of the young person’s experience of learning about a parental diagnosis: first hearing about a parent’s diagnosis; vulnerability of self and others, communication within the family, feeling supported in experience, experience and support of school, experience and support of hospital. Young people overwhelmingly advocate honesty and openness in family communication about cancer. Conclusions: Our participants demonstrated strength and resourcefulness in adapting to their parent’s cancer. Meaning making was central to our study’s intent and still today it offers a perspective of the diagnosis period that has not been fully explored in the extant literature. Ó 2009 Elsevier Ltd. All rights reserved.

Introduction A parental cancer diagnosis imposes uncertainty for a family’s future. Parents and their children are not only confronted with short-term losses and adjustment to family life, but also the underlying fear and threat of death. Compared to younger children, young people in particular may experience ‘‘a fuller and more adult sense of the potential loss and its meaning’’ (Adams-Greenly et al., 1986, p. 134). Grief and its many manifestations can irrevocably change family life and the multiple relationships within. Informed by this, one is led to consider the extent an adult nurse provides a family focus to cancer care. It arguably remains wanting, particularly in adult healthcare environments where ‘family’ can still

* Corresponding author. Tel.: þ44 845 1555000. E-mail address: alison.fi[email protected] (A. Finch). 1462-3889/$ – see front matter Ó 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2009.03.010

infer ‘spouse’ and the needs of children at home may as a result go unrecognised (Adams-Greenly et al., 1986; Lewandowski, 1996). It has become increasingly acknowledged that a diagnosis of cancer is a family concern (Gazendam-Donofrio et al., 2007; Grabiak et al., 2007; Su and Ryan-Wenger, 2007; Visser et al., 2004). Adult patients have spoken about wanting and expecting to be assured that their family and carers will be supported throughout the illness and in bereavement (National Institute for Health and Clinical Excellence, 2004). In the world of adult nursing however, nurses anecdotally report feeling inexperienced talking to young people, particularly about parental illness and medical colleagues may feel equally unprepared to facilitate this aspect of supportive care. Conceivably as a consequence, sons and daughters may be ‘‘treated as tangential or even excluded from parents’ treatment plans’’ (Faulkner and Davey, 2002, p. 66). Staff’s feelings of inadequacy are perhaps most acutely felt when parents ask for advice about when and how to explain a cancer diagnosis to their child

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(Barnes et al., 2000, 2002; Davis Kirsch et al., 2003; Hilton and Gustavson, 2002; Hymovich, 1995; Rittenberg, 1996). Little attention has been paid to what or how young people should be told about their parent’s cancer diagnosis, but from the limited research that has been undertaken, parents are seeking help with this aspect of communication (Barnes et al., 2000, 2002; Davis Kirsch et al., 2003; Hilton and Gustavson, 2002; Hymovich, 1995). Understanding how families can be helped to facilitate this remains ‘‘an omnipresent but under-explored area of health and illness’’ (Beach, 2002, p. 272). The lack of substantive knowledge about the effect of parental cancer on children and in particular young people formed the basis for our research study that set out to explore their experience of learning about a parental cancer diagnosis. Understanding generated from studies to date had predominately been based on parental proxy reports of communication shared with children and young people. Feelings and emotions in the extant literature are often consequently articulated from a parent’s perspective (Barnes et al., 2000, 2002; Hooper Zahlis and Lewis, 1998; Hymovich, 1993; Lewis et al., 1996; Shands et al., 2000), leaving the young person’s perception of the impact of their parent’s cancer diagnosis underexplored. Our research, undertaken in 2003 built on identified limitations and gaps in the current literature. Knowledge of the young person’s experience in disease groups other than breast cancer appeared poorly disseminated, and this study attempted to broaden understanding amongst other cancer groups. The study’s methodology and conceptual framework were embedded in a family systems perspective (Carter and McGoldrick, 1989; Rolland, 1989), in so doing making the fundamental connection between the young person and the context in which they live their lives. Background The impact of parental cancer on families had been scarcely researched until the 1990s when the effect of maternal breast cancer on school-aged children began to be documented. Research still resides primarily within the field of breast cancer care, although studies have since been undertaken to explore the impact of other types of parental cancer on both children and young people. The background to this study is presented in two-stages, first a literature review is presented with a summary of the initial search undertaken during the study design, and secondly an updated review using the same search criteria. Communication is often regarded as a critical ingredient in family adaptation to cancer. The responsibility of informing children about a parental diagnosis usually rests with the parents themselves, but they are often left without guidance of what and when to communicate news of their diagnosis. There are many reasons why a diagnosis of cancer may complicate a parent’s ability to be open with their son or daughter. Many parents are unsure what, or how much to tell their children, or indeed how much they can understand or cope with (Barnes et al., 2000), it may also be difficult for parents to talk with their family about their illness especially whilst coming to terms with the implications themselves (Kroll et al., 1998; Landry-Dattee and Delaigue-Cosset, 2001; Robinson and Janes, 2001). Several empirical studies suggest children and young people whose parents have cancer experience increased levels of psychological distress (Compas et al., 1996; Grant and Compas, 1995; Heiney et al., 1997; Siegel et al., 1992, 1996). A recent, systematic review (Osborn, 2007) lists other quantitative studies identifying increased risk of psychosocial difficulties or psychosocial functioning in relation to early stage parental cancer. Extrapolating information that helps to sensitively inform a young person’s experience proves problematical though, as measurement of

psychological effects may ‘‘be too subtle or existential to assess with commonly used measures of adjustment’’ (Leedham and Meyerowitz, 1999, p. 443). These may relate to feelings and cognition about one’s place in the world rather than psychological distress, depression or other constructs that make up conceptualisation of psychological adjustment (Leedham and Meyerowitz, 1999). Standardised measures thus represent only a part and not a total view of an individual’s adaptation to parental cancer. The initial literature search found few studies that explored the experience from a young person’s perspective within a qualitative frame of enquiry (Elmberger et al., 2000; Hilton and Gustavson, 2002; Spira and Kenemore, 2000). Explicating research from the literature specific to the fourteen to eighteen year age group (mid to late adolescence) also proved challenging; although twelve research studies were found to address ‘adolescence’ it was most usually as a subgroup within the context of a wider age range (Barnes et al., 2002; Birenbaum et al., 1999; Compas et al., 1996; Elmberger et al., 2000; Grant and Compas, 1995; Harris and Zakowski, 2003; Heiney et al., 1997; Hilton and Gustavson, 2002; Huizinga et al., 2003; Nelson et al., 1994; Nelson and While, 2002; Spira and Kenemore, 2000). Parental report of their child’s personal feelings and understanding was commonly a part of study design (Barnes et al., 2000, 2002; Hooper Zahlis and Lewis, 1998; Hymovich, 1993; Lewis et al., 1996; Shands et al., 2000). The sensitivity, reliability and validity of proxy reporting have been questioned by researchers in this field (Heiney et al., 1997; Rosenheim and Reicher, 1986; Welch et al., 1996). Research that involved both parents and children in an attempt to understand both perspectives appears confined to Birenbaum et al. (1999) who explored school-age children and young people’s adjustment to parental cancer and Heiney et al. (1997) who studied the impact of parental anxiety on child emotional adjustment. Two studies (Huizinga et al., 2003; Nelson and While, 2002) triangulated selfreport data with parental reports to present a more composite picture of a family’s experience. All these studies remain rooted in positivist philosophy however, which may in part self-limit understanding of an experience which is ultimately concerned with perception and affective emotion. Nelson et al. (1994) talked with young people themselves, exploring potential problems and anxieties related to parental cancer. They aimed to consider the young person’s perception and understanding, both at the time of diagnosis and at interview. Their results indicate that many young people do experience problems and anxieties related to their parents’ cancers that affect their school lives, family lives, free time and relationships. Our research study built on the work of Nelson et al. (1994) but in contrast to their predominantly quantitative methodology, it sought to explore and describe individuals’ lived experience. The study aimed to develop insight into young people’s experience of first learning about parent cancer and its impact on daily life and relationships. An interpretative, phenomenological frame of enquiry was chosen to consider parental illness from this inherently personal perspective. The only research exploring the young person’s perspective from a qualitative, naturalistic frame of enquiry was a Canadian study titled ‘‘Shielding and being Shielded’’ (Hilton and Gustavson, 2002). It describes what it was like for eleven young people (4 boys, 7 girls, aged 7–21) when their mother was diagnosed and treated with chemotherapy for breast cancer. At the time it represented one of only two known published studies that focused on the diagnosis and treatment period (Hilton and Gustavson, 2002; Nelson and While, 2002). Children of cancer patients still receive relatively little attention in the research literature (Su and Ryan-Wenger, 2007; Grabiak et al., 2007). Whilst the literature search undertaken in 2008 identified nine new research papers pertinent to our study question

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(Fitch and Abramson, 2007; Chalmers et al., 2000 Forrest et al., 2006; Gazendam-Donofrio et al., 2007; Helseth and Ulfsaet, 2003; Huizinga et al., 2005; Kristjanson et al., 2004; Nelson and While, 2002; Watson et al., 2006), with the exception of Chalmers et al., 2000; Fitch and Abramson (2007) they are all rooted in positivist philosophy (Huizinga et al., 2005; Nelson and While, 2002; Watson et al., 2006), or do not exclusively address the period of adolescence (Forrest et al., 2006; Gazendam-Donofrio et al., 2007; Huizinga et al., 2005; Kristjanson et al., 2004). Research continues to focus around mothers with breast cancer (Fitch and Abramson, 2007; Kristjanson et al., 2004; Visser et al., 2004; Watson et al., 2006). Fathers and sons were, and still are underrepresented in all studies. Seeking insight into the impact of a parent’s cancer diagnosis on young people’s personal meaning making, broader life and relationships makes this study unusual, and still to date offers a perspective that has not been fully explored within the extant literature. Our discussion informs nursing discourse, and the concept of family-focused care. Study design An interpretative phenomenological approach (IPA) to enquiry, as described by Smith and Osborn (2003), was selected to explore the research question: How do young people experience learning about their parent’s cancer diagnosis? More specifically our study sought to reveal how: 1. Young people experience first learning about their parent’s cancer diagnosis? 2. Young people perceive and make sense of this experience? 3. This experience impacts on their daily life and relationships? Interpretive phenomenological analysis aims to gain insight into how those being studied make sense of their social and personal worlds. It is concerned with the individual’s perception of events, their impact on and meaning to the individual, rather than gaining an objective statement of an event. It differs from other qualitative techniques in its recognition of the interactive nature of collection of data between the researcher and participants and that interpretation of the data is again an interactive process between the data collected and the researcher’s interpretation of it (Koch, 1995; Smith and Dunworth, 2003; Smith and Osborn, 2003). Hence in each interview the researcher does not always follow the sequence of questions on the interview schedule, or asks questions in exactly the same way, the approach to each interview is guided by participants’ responses. This interactive approach advocated by proponents of IPA follows into data analysis where the researcher aims to draw constantly on their own interpretative resources to make sense of what each person is saying, while at the same time checking their own sense making against what the person has actually said (Smith and Osborn, 2003). Methods Setting, sample and recruitment The study was conducted at a London Cancer Centre. Young people aged between 14 and 18 years at the time of their parent’s diagnosis were approached to participate. For a family to be eligible, parents needed to be 4–12 months post-diagnosis. Sampling was purposive with participants being recruited via poster advertisements seeking parental interest in the research. Following a parent’s permission, their son or daughter was subsequently invited by letter to consider participating in the study.

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Data collection Semi-structured interviews were conducted in a venue of the participant’s choosing, usually their own home, or for some a quiet room in the hospital was the preferred option. An interview schedule was used flexibly to help direct and facilitate participants to tell their story. An initial briefing, and informal ‘chat’, was used at first to build rapport and put the participant at ease. Key areas explored during the interview included: B B B B B B B

Recollection of first learning about the diagnosis; How it was assimilated and understood; What it meant to be told a parent has cancer; Preparation for the news; Communication about cancer in the family; Impact of cancer on home life and relationships; Supportive needs.

The resulting interview was considered a co-product of the interaction between researcher and participant, as both individuals influenced and created the resulting narrative (Price, 2002; Smith, 2001). Interviews lasted on average 40 minutes were tape recorded and transcribed verbatim. Demographic details were also collected. Ethical issues Ethical approval was granted prior to commencement of the study. This was a less than straightforward process, as initially the committee had suggested the use of a self-report questionnaire, rather than an interview, stating in their response that there was the possibility that an interview may become overly intrusive and cause emotional upset. We considered this an unsatisfactory alternative as the confines of a rigid structure would limit exploration of participant’s experience and self-expression. Attendance at the Local Ethics Committee (not commonplace at the time), allowed us to reassure the committee that mechanisms were in place to minimise harm to the participants. Permission was given to proceed with interviews. At the time a dual approach to consent was considered most appropriate by the Ethics Committee, to balance the best interests of the parent, young person and family. Consent was therefore sought from both the young person and their parent. Data analysis Interpretative phenomenological analysis is characterised by its iterative and yet systematic nature. Smith and Dunworth (2003) suggest that an initial transcript can be used to identify themes, which can then be used to analyse subsequent transcripts, or each transcript can be analysed individually if they are very different. Initially, a decision was made to analyse three transcripts, randomly selected, applying themes to the remaining four transcripts. However, early on in the process it became clear that individuals had a unique experience that brought diverse themes to the fore. Analysis proceeded on a case-by-case basis (Smith et al., 1999) using the steps outlined in Fig. 1. Each participant had a master theme list. Analytical rigour Sandelowski (1993) discusses the problem of rigour in qualitative research. She suggests that the rigour of a study should be judged on how accurately the conclusions and findings can be traced back to the original data. Self-critique and self-appraisal are key to the enhancement of methodological rigour (Koch and

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Stages 1

Engaging with the transcript by: Making initial notes on the transcript

2

Identifying initial themes

3

Listing and clustering initial themes

4

Looking for and making sense of connections between themes Integration of participant’s themes

5

Description of the process Transcript was read, while listening to the audio recording. Comments, paraphrased text and notes on language recorded. Transcript re-read and initial notes translated into preliminary themes (recorded in the right-hand margin). Themes remained close to the text, and quite general, although reflecting a higher level of abstraction. Initial themes listed on a sheet of paper. Themes clustered together and given a label that captured the thematic essence of the cluster. Index cards were used to record the process and outcome. Page numbers from transcripts recorded for retrieval of data. Theoretical ordering is undertaken to try to make sense of the connections between themes emerging. Theme clusters from each participant were collected together, looking for general categories and shared meanings: working between transcripts and themes.

Master (superordinate) themes and sub-themes (sub-ordinate) described which capture the shared essence of the young person’s experience of learning about parental cancer Fig. 1. Stages of data analysis.

Harrington, 1998). Themes were reviewed by a critical reader who was familiar with the extant literature on the subject. Their role was to provide consensual agreement on the resulting thematic analysis. The strength of each master theme was examined and discussed once each participant’s themes had been integrated in the final stage of analysis. Findings Seven participants were recruited to our study (Table 1); this included two sets of siblings. Young people’s names have been replaced with pseudonyms to protect their anonymity. The interview data revealed six dimensions of their experience of learning about a parental diagnosis: first hearing about a parent’s diagnosis; vulnerability of self and others, communication within the family, feeling supported in experience, experience and support of school, experience and support of hospital (Table 2). These master themes will be presented drawing on anonymised quotes to illustrate each theme and use of italics to highlight relevant sub-themes. First hearing about parent’s diagnosis Hearing the news that their parent had cancer was universally perceived as a serious and threatening life event. At interview each participant recalled their experience of first finding out about their parent’s cancer in very factual terms, offering a step-by-step recollection of the events of that day. Their sense of shock at hearing the news however was apparent. Most participants heard about their parent’s cancer after test results had confirmed a diagnosis. Only one young person described being protected from hearing about her father’s diagnosis although she said she knew something was wrong before her mother told her a number of days

later. ‘‘At home when something is wrong you just know’’, Grace commented. The worry of parental death was expressed by all participants during the course of each interview but was most commonly spoken about in connection with first hearing the news of their parent’s cancer. Huizinga et al. (2003) and Compas et al. (1994) also evidence this in their research. Five participants said their first thoughts were that their parent might die. Participants spoke of knowing little about cancer except that it killed. Young people described being shocked when first hearing about their parent’s diagnosis. Few participants however could recall the words that were used to explain this, a discovery that makes a contribution to understanding the significance of words that are chosen to give bad news. CancerBACUP (2005) for example discuss and advise readers of words and phrases that may be chosen to impart news of cancer. More significant to our group were their parents’ future explanation of the diagnosis and their inclusion in family discussions about cancer that followed. Participants described having little knowledge or understanding of cancer at the time of their parent’s diagnosis. One participant admitted that when he heard about his dad’s leukaemia he did not actually know what it was. When Matt was told by his parents that doctors had ‘‘found a tumour’’ he recalled how he did not make an association with cancer. His parents went on to explain ‘‘.they said you know a tumour, you know a cancerous tumour and that’s when it first sort of clicked in my head’’ (Matt). Despite indication that young people have good knowledge of cancer (Hastrup et al., 1992) six of our participants expressed knowing little about the disease and its treatment. Regardless of the timing or words chosen to explain the diagnosis all participants (with the exception of Grace) said that they were happy with the way they had first found out. ‘‘It was as if they knew

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Table 1 Participant profile. Name

Age at interview

Parent with cancer

Parent’s diagnosis

Age at parent’s diagnosis

Time since diagnosis (months)

Paul Matt Grace Rob Sarah Josh Nicola

16 16 18 17 15 18 14

Father Father Father Mother Mother Mother Mother

Acute myeloid leukaemia Non-Hodgkin’s lymphoma Non-Hodgkin’s lymphoma Breast cancer Breast cancer Breast cancer Breast cancer

16 16 18 17 14 17 14

4 9 11 5 5 5 5

exactly what to say’’ recalled Nicola. Another young person reflected how he ‘‘wouldn’t have changed’’ his mother’s approach (Rob). Grace however said that she wished her parents had spoken with her earlier. Two of the young people clearly remembered the date they received news of their parent’s diagnosis. The other participants were less specific, associating the event with exams or a family birthday. It became apparent during interview that all but one of those interviewed found it difficult to recollect and relive the initial days of living with the diagnosis. Their parent’s cancer had become in a sense normalised in their lives and their focus had shifted from one of ‘cancer’ to ‘living with cancer’. Sarah aged 15, said something in interview that others would reiterate: ‘‘It’s just been such a long time since we found out now.I’m kind of used to it. It’s just another part of life really’’ (Sarah at interview, 5 months after her mother’s diagnosis). Sarah’s family had taken on a new identity that incorporated cancer. Many of the other participants were also seen to integrate the cancer in their everyday life. The concept of ‘maintaining normalcy’ has been discussed by both Hilton and Gustavson (2002) and Huizinga et al. (2003), although it was perceived in these studies less as a form of adaptation and more as a means of dealing with or protection from the uncertainty of illness. The experience of learning about parental cancer involved interpreting both verbal and non-verbal communication to make sense of the experience and help foster understanding. Young people described watching for signs and interpreting cues. Matt explained first realising what cancer was all about when he returned home from boarding school to be with his father: ‘‘.he was going to the hospital the whole time, he was feeling ill and he was sick.when I first saw him I realised that’s what [lymphoma] was all about’’ (Matt). Another participant, Sarah, whose mother had breast cancer explained that it was difficult to understand the meaning of cancer until chemotherapy had started. Sarah spoke about ‘the visible signs of cancer’: ‘‘It doesn’t really hit you because she’s not in any pain and you can’t see it, it’s not visible and until she had the treatment she, it was normal so you don’t really think about it.but when she had the treatment, she was getting tired and loosing her hair and everything that’s when you realise it’s happening. It was all normal until this treatment started.nothing changed but it wasn’t until you saw the visible signs of cancer’’ (Sarah). In the same way that communicating the cancer diagnosis was not seen as a single isolated act, meaning making also occurred along a continuum. Young people were seen to interpret and make sense of the cancer as it was perceived by its impact on their daily life. They asked questions about the cancer in their search for understanding for example ‘‘why did it happen to me ‘cos he’s healthy and stuff’’ (Paul) or ‘‘why did it have to happen to my mum at this time?’’ (Josh). Many of our participants also searched for

information about cancer from friends, books or via websites to help build their understanding. Vulnerability of self and others Our participants described sense of loss on hearing about their parent’s diagnosis and the uncertainties inherent with cancer were seen as threatening. Nicola aged 14, describes the threat to her parent-daughter relationship: ‘‘.you don’t really think that it would happen to like my mum or anything.I have grown up with my mum being there so that’s like, I didn’t think anything would happen to her’’ (Nicola). The threat to family roles and relationships was reiterated by other participants. They spoke about needing to remain emotionally strong to deal with the changes and feelings the cancer engendered. A constant theme that was conveyed throughout the interviews was vulnerability of self and others. This second master theme was symbolic of the fears and worries our participants expressed, faced with the uncertainty of cancer. Young people not only described themselves in terms of feeling vulnerable but perceived their parent and family in similar terms. They were worried by their parents’ apparent weakness and inability to continue family roles: ‘‘I just look at him and he is sitting like a baby.I just want to go back and give him another hug’’ (Matt, saying goodbye to his Dad whilst on a hospital visit). Young people described how their parents looked like they needed looking after and interpreted this with realisation that family roles would change. They said they tried not to think about their parent’s cancer thus protecting self from further worry. They were also seen to be protecting others in recognition of the family’s vulnerability: Table 2 Master themes and sub-theme clusters. First hearing about a parent’s diagnosis Vulnerability of self and others

Communication within the family Feeling supported in experience

Experience and support of school Experience and support of hospital

Vulnerability of self Vulnerability of parents Vulnerability of family Protecting self Protecting others Being protected Threat to security of family Threat of loss: parental relationship Threat of loss: the worry of parental death Existential issues raised by cancer Needing to remain emotionally strong Not feeling isolated Having the support of friends Having someone to identify with Having feelings acknowledged Feeling understood

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‘‘Like um you know.it’s like you know when something can break easily so you’re really careful with it? It was like that and like in the beginning it was hard that you felt that you had to think before you spoke a lot about what you were gonna say just in case it upset her.’’ (Sarah). Participants were conscious of modifying their behaviour in the light of parental cancer and some spoke about needing to remain emotionally strong, a belief that was either internally modulated or perceived as an expectation by their parents. Remaining strong was often expressed metaphorically as ‘‘like a rock’’ (Sarah) or ‘‘like a pillar’’ (Paul). The cancer diagnosis was universally interpreted as a threat to the security of the family. ‘‘I just never remember dad being ill’’ Matt said. Many participants had never known their parent to be unwell and like Paul felt ‘‘scared’’ for their family’s future. Most apparent was their worry of the threat of loss of the parent–son, parent– daughter relationship. They covertly expressed their worry that they would no longer be parented. The worry of parental death was a real and a constant threat during the diagnosis period. All participants spoke at some time during interview about their worry that their parent might die. Whilst most apparent in the diagnosis period, this threat and worry were ever present within their consciousness although rarely discussed with others. As well as heightened death awareness, existential issues raised by cancer also came to the fore. ‘‘Outlook on life changes’’ remarked Sarah, who went on to say that now she looked at things differently as some things did not seem as important as they used to. Matt spoke about having greater sensitivity to others’ situations as a result of his father’s diagnosis. In Josh’s case he described being ‘‘more aware that things can happen to the family’’. He said he had ‘‘learnt to accept these things can happen.you can’t prepare for it’’ (Josh). Experiencing parental cancer was seen as a re-defining life event. Relating findings from this dimension to the wider literature was difficult in the absence of studies that focused on the diagnosis period with this defined age group. However, if one considers theories of development during ‘mid to late’ teenage years we know that the family is of considerable importance to a young person. It is a time of renegotiating relationships and roles within the family as a step towards independent adult life. Patenaude (2000) suggests that young people may worry about how to exert and develop independence at a time when family cohesion may be mandated by the demands of the disease and its treatment. Northouse (1995) describe how some young people struggle for independence and formation of separate identity. Northouse et al. (1991) citing early research undertaken by Lewis et al. (1985) may report feelings of conflict between the desire to break away from the family and the knowledge that they are needed at home both emotionally and physically (Northouse et al., 1991) amongst young people. This finding was also observed amongst two sons of haematology patients in our study. Others interviewed thought that they had ‘changed’ since their parent’s diagnosis and often described rapid maturation and a change in their family role. This change was usually accommodated and they assumed responsibilities they perceived were expected of them, helping out with housekeeping and practical aspects of everyday life. Helping out was seen to provide a sense of purpose and remedied the helplessness engendered by cancer. Our participants said they rarely felt unprepared (Hilton and Gustavson, 2002) or burdened (Compas et al., 1994; Hilton and Elfert, 1996) by the responsibilities expected of them as other research has found. Our study findings report no appreciable difference between gender of the responsibilities taken on by the young person. There

was equally no difference between males and females in the degree of vulnerability of self and others that they perceived. The wider literature addresses some of the elements contributing to this theme, and a study by Hilton and Gustavson (2002) in particular supports in part our study’s findings. Hilton and Gustavson explored children’s perspectives of coping with their mother’s cancer and chemotherapy (4 out of 11 participants were young people, age range 7–21 years) and subsequently described how the participants were seen to be ‘shielding’ and were ‘shielded’ from their mother’s cancer. In our study both sexes were also seen to ‘shield’ or protect themselves and others from the stress of cancer. They spoke about trying not to think about their parent’s cancer in order to protect themselves from additional worry: ‘‘Sometimes you’re glad you’re not talking about it because you start to worry about Dad’’ Paul said. Heiney et al. (1997) propose that children may hide their emotions to protect their parents from having to think or talk about the illness. This was also evidenced within our study. Many of our participants sought support from friends outside of the home rather than sharing concerns with their parents. This is perhaps reflective of development through the period of adolescence in which peer support can assume greater importance. Whilst worry of parental death was articulated as a major concern for the young people, only two of our participants spoke at interview about sharing this fear with their parent. Others protected their parents by keeping these thoughts private. Avoiding questions about death was found to be one of the most common reasons parent’s avoided talking with their children about their cancer in research by Barnes et al. (2000). In a study by Hymovich (1993) communication about illness was detailed as a concern for all parents who said that they wished they knew what their children were thinking, but did not feel able to ask. Our finding offers suggestion for what young people may be thinking, which in turn has implications for parents and professionals in supportive roles.

Communication within the family The third master theme that was relevant to all participants was family communication. Communication within the family was seen to be largely dependent on family attitudes, beliefs and degrees of comfort in talking about what was perceived by all to be a threatening and uncertain illness. How individual family members related together and how they communicated seemed influential in the family’s adjustment to cancer. For five of our participants, communication about their parent’s cancer was characterised by openness, trust and honesty, which had been facilitated by a number of discussions over time. Matt spoke about the importance of ‘‘getting everything out in the open’’, being truthful and trusting. Nicola explained ‘‘I can speak my mind and they can as well, so it’s there, and there are no secrets’’. Both families had a belief in fostering open and collaborative discussion about cancer. For siblings Nicola and Josh, family attitude to talking about cancer had been to ‘‘share, share it basically’’. Paul’s experience was different. He had more difficulty making sense and meaning from his experience of learning about his father’s leukaemia. Talking about his father’s illness was an area that as a family was not openly discussed. Paul described his family’s approach to dealing with dad’s cancer as one of avoidance. ‘‘We’ll talk about most things but when it comes to dad’s sort of thing it’s a bit more of a delicate subject’’ (Paul). Paul was pleased that he found out about his father’s diagnosis of leukaemia at the same time as the rest of his family. Being included at

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the beginning was important for Paul. However subsequent family communication about cancer was difficult and often avoided. Not much was mentioned of his father’s diagnosis after the first two weeks. ‘‘The whole idea is to keep quiet about it’’ Paul thought. Paul became fearful of bringing up the subject saying that ‘‘everyone would have forgotten about it’’. His family protected themselves from unnecessary upset by avoiding the issue. Death was a particular subject that was never mentioned. Paul spoke of having to ‘‘avoid that whole area’’ despite feeling worried that his dad might die. The ‘family script’1 which Paul had adopted was to consider himself ‘‘pretty clued up’’ on what was going on. This phrase was repeated on several occasions during the interview. It was important for Paul’s family to demonstrate to others that they were able to cope. Yet of all the participants Paul was coping least well. From the initial days of feeling included Paul now felt isolated in his experience. In the absence of verbal communication Paul made sense of the cancer by interpreting signs and cues as he experienced them. ‘‘cos you know if dad’s feeling good or not cos he’ll either say ‘hello’ and that means it’s a good day, and have a little chat, or if it’s a bad day he’s just dozing off and stuff’’ (Paul). Month’s later at interview Paul was still unsure what leukaemia was, beyond how it impacted on his day-to-day life. His family’s focus had been to fulfill perceived expectation to accept the cancer and cope as best as they could. Family roles became delineated in the drive to focus on the disease. Paul felt isolated in his experience but what was most striking was the expression of helplessness engendered by his own situation. Paul felt alone with seemingly no apparatus to cope. He lacked control of his parent’s cancer and his own situation. Feelings of isolation and helplessness may evoke feelings of lack of control in opposition to a young persons need for control and independence (Grant and Compas, 1995; Mearns, 2000). Nelson et al. (1994) support a belief in open communication to keep a young person’s trust and foster a sense of collaboration. Amongst Nelson et al.’s (1994) study, factors associated with increased anxiety included an inability to discuss the illness with parents.

Feeling supported in experience Paul did not know anyone else who had leukaemia and he described feeling isolated in his experience. He felt that no one ever acknowledged his feelings. Our other participants described feeling more supported whilst adjusting to their parent’s cancer diagnosis. The fourth master theme that captured the study group’s experience was the degree to which young people felt supported in their experience. The significance young people in our study placed on the support of friends makes a unique contribution to understanding the wider experience. It confounds previous suggestion that young people keep concerns to themselves so as not to burden others, or because they do not think anyone will understand (Hilton and Gustavson, 2002). Anecdotally it is known that friendships are incredibly important to young people. In this respect they are no different from adults when faced with a profound experience: they go to whom they feel closest. ‘‘I’ve been supported by friends who have been through similar experiences’’ (Rob).

1 Family members can be thought of as having learnt a script from their family which tells them what their role is and how they should behave (Stratton et al., 1990).

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‘‘a friend can get it just right’’ (Matt). Josh explained that probably the best support he had received had been from a friend. He said his Dad would often talk with him alone: ‘‘It sort of helped’’ he said, ‘‘.but it felt better coming from a friend’’. Participants discussed the benefit of having someone to identify with, especially if that person was their own age. ‘‘Communication is then on your terms’’ Josh remarked. Matt had also found someone to identify with in the form of a young person of a similar age and situation who featured as a vignette in a support booklet. Matt genuinely identified with this fictional person explaining: ‘‘he helped me so much’’. Rob similarly related to a friend whose mother also had breast cancer. This builds on Huizinga et al. (2003) finding that participants (who included a sample of 6 children aged 11 and older) found solace in talking to peers experiencing the same adversity. It also supports literature demonstrating the potentially positive impact that peers have in extending support to one other (Clark et al.,1992; Conway et al.,1996; Trickett and Schmid, 1993). Friends were perceived to ‘‘always know what to say to make you feel better’’ (Sarah).

Experience and support of school Stevenson (1990) reports that after the family school is the most important environment in the lives of young people. The fifth theme grouped together shared experiences and perspectives relating to the young person’s experience and support of the school since parental diagnosis. Most of our study group said that they thought their parents had informed the school but they varied in their perception of how supportive the school had been ranging from ‘‘non existent’’ (Rob) to ‘‘quite good’’ (Sarah). Significantly, they did not feel their situation was acknowledged by their teachers: ‘‘I would have liked them to sort of, I don’t know um acknowledge that I might actually be upset [rather than] ignore it which is what I feel they are doing’’ (Nicola). Participants explained that their teacher would ask how their parent was but overlook how they might be feeling. Their teachers asked ‘‘only at the beginning’’ (Nicola) and any perceived concern had ‘‘all died down’’ (Sarah) after the initial few weeks. Only one young person reported a positive encounter with their teacher who also had a relative with breast cancer. Our participants had mixed feelings whether they would have liked teachers to ask after them discretely throughout their parent’s illness. ‘‘I wanted school to be the one place where everything would be normal’’ Sarah said. Although school did not always feature that much in interview discussion our findings suggest the school could be a source of support. During interview Matt articulated a belief that the education system had a responsibility to teach students about cancer: ‘‘If people knew a bit more about it then people can be prepared for it .then it doesn’t seem so scary’’ (Matt). There has been scant literature exploring the school’s role in assisting young people who have family with cancer. In recognition of this Chalmers and colleagues (2000) undertook an exploratory study amongst the adolescent children of breast cancer parents. They identified how young people seeked individualised support that was meaningful to them. For some, this meant being treated the same as their peers, and like our participant Sarah they welcomed a sense of normality and the opportunity to detach themselves from what was going on at home. For others the support they hoped for was more direct; revised academic expectations or the inclusion of cancer information within the curriculum Chalmers et al., (2000).

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Experience and support of hospital Participants generally did not perceive a role for themselves in the hospital environment. They expressed fear or anxiousness going to hospital to visit their parent and on the whole had little contact with medical or nursing staff. They said they preferred to talk with their family or friends rather than someone they did not know. Two participants thought that it would be too difficult for the hospital to offer individualised support as their family was just one of many living with a cancer diagnosis. Another said the only support he would have liked was to have known ‘‘what the different tablets and injection things do’’ (Paul). With the exception of an older son, none of the young people seemed to perceive an emotional or psychosocial component to hospital care. Whether this finding is due to staffs’ reluctance or difficulty in extending support to the family or whether it is more reflective of our patients and families’ perception of a medicalised system is unknown. This finding however offers thought for practice. Limitations of the study This research aimed to provide insight and aid understanding of the young person’s experience of learning about parental cancer. It has however assumed a degree of universality in the word ‘cancer’ as a disease. Different cancers however may place different demands on patients and families, altering the stress that families are placed under. Within this study the two parents with breast cancer were now working on a part time basis, whereas the fathers with haematological cancers were spending prolonged periods of time in hospital away from the family. Parental well-being, adjustment and coping may be factors which contribute to the feelings and perceptions of young people. This research was also unable to take into account or control for any unknown life events that young people were experiencing. As one of them mentioned: ‘‘lots of things trouble you when you’re at this age’’ (Josh). Their stories of learning about parental cancer were also time bound. With passing of time young people may perceive things differently as meaning constantly changes in light of new experiences (Quinn, 2003). Interpretative phenomenological analysis (IPA) was used as our research method. Literature supports the fact that IPA has been used extensively in social science research, however during our methodological design we were unable to identify application of IPA in research with our population. Finally if one was to consider our roles as researchers, whilst we did not initially perceive the language and culture of young people as a barrier to accessing their experiences, one young person did intimate that he was more conscious of how he presented himself in comparison with his peers. Another young person noticeably used language that perhaps he would not normally use in a less formal situation. Recommendations for further research In light of the aforementioned limitations, peer-to-peer interview studies are suggested as a way of taking research in this area forward. This approach could be used to identify and develop supportive strategies that young people themselves would like to see put in place. Future studies could also attempt to engage with young people over time, as close to diagnosis as possible and at intervals throughout their parent’s illness trajectory. Further exploratory studies amongst families living with diagnoses other than breast cancer are also suggested. Nurses are well placed to support families within a framework of family-centred care. Nurses’ perception of inadequacy extending

support to younger family members however is in need of exploration. Recommendations for practice The introduction of a booklet written specifically for young people was something that many of the participants wanted. This should contain case vignettes, in light of findings suggesting that both having someone to identify with and reading case histories are perceived as helpful and supportive. The role of the hospital is less certain. Young people did not perceive that the hospital extended any support to them neither did they consider the hospital as an avenue for support. More recent study findings (Davey and Davey, 2005) indicate young people identify friends, family and the school as providers of social support. This role of the hospital however becomes difficult to delineate, leading us to suggest that healthcare professionals should in the first instance direct their focus to parents, acknowledging that they are not only patients but also family members. Christ and Christ (2006) concur with our proposition that communication about cancer can be viewed as a process, involving disclosure of information over time, to create a pathway of open communication and trust. As health professionals we are well placed to guide family discussions about cancer. As its most fundamental level this could be simply asking patients ‘‘what have you told your children about your diagnosis?’’ Investing in structures to support clinical teams to feel able to deliver family-focused care is of great consequence. Family based support programmes as described by Bugge et al. (2008) may help strengthen positive interaction between parents and their children and enhance mutual understanding of the illness and its family impact. Concluding thoughts A diagnosis of parental cancer impacts upon the whole family system in which the young person is a part. Young people are faced with questioning and re-defining the meaning of their life, and their roles and relationships within this system. Learning about parental cancer can be a vulnerable and isolating experience for young people at a time when security and self-identity are developmentally important. They may feel alone in their experiences without external support. Young people in our study overwhelmingly advocated for honesty and openness in family communication about cancer. Being included from the beginning is important, but engaging in ongoing discussion about cancer is perhaps more relevant to their adaptation and coping. Young people want acknowledgement of their situation by family and friends to help remedy a sense of isolation. Having someone to identify with aids feeling supported. The support of friends was found to be of notable importance within our study group. Friends offer emotional support and act as an advisor, helping them to feel understood. Peer support enables young people to relate to one another on ‘their own terms’ and is suggested as a way forward to help them cope. Our participants demonstrated strength and resourcefulness in adapting to their parent’s cancer. Many were seen to normalise the impact of the cancer within their lives. They described reciprocity of feeling and a sense of closeness within their family as a result of their parent’s cancer: ‘‘I don’t know I think we’re closer, I think we’re just nicer to each other and um.more understanding of each other .cos we all know exactly what each other’s going through’’ (Sarah). Ohannessian (2007) suggests that families that include a parent with cancer may experience more expressive, cohesive and positive family functioning than families in which chronic illness does not

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feature. A sense of reciprocal interaction and coping became apparent within our research. Less apparent however is how well young people can sustain their coping over time. In the event of parental death, or long term ill-health the extent to which their adaptation now will influence future coping is indeterminate. Our study findings indicate there is no comparable difference in expression of individual themes between sons and daughters. Young people expressed the same vulnerability, sense of loss and coping irrespective of whether it was their mother or father who had been diagnosed. The sense of fear and threat of death described by our participants remains ever apparent; Fitch and Abramson (2007) and Forrest et al. (2006) have identified and explored this theme in more recent work. Forrest et al. (2006) similarly observed young people drawing meaning from their observations in attempts to make sense of their parent’s cancer. ‘‘Children suspected something was wrong even before they were told the diagnosis’’ cited by Forrest et al. (2006, p. 998). Meaning making was central to our study’s intent and still today it offers a perspective of the diagnosis period that has not been fully explored in the extant literature. Conflict of interest The authors have no conflicts of interest to declare in this study or its publication. References Adams-Greenly, M., Beldock, N., Moynihan, R., 1986. Helping adolescents whose parents have cancer. Seminars in Oncology Nursing 2 (2), 133–138. Barnes, J., Kroll, L., Lee, J., Burke, O., Jones, A., Stein, A., 2002. Factors predicting communication about the diagnosis of maternal breast cancer to children. Journal of Psychosomatic Research 52, 209–214. Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A., Stein, A., 2000. Qualitative interview study of communication between parents and children about maternal breast cancer. British Medical Journal 321, 479–482. Beach, W.A., 2002. Between dad and son: initiating, delivery and assimilating bad cancer news. Health Communication 14 (3), 271–298. Birenbaum, L., Yancey, D.Z., Phillips, D.S., Chand, N., Huster, G., 1999. School-age children’s and adolescents’ adjustment when a parent has cancer. Oncology Nursing Forum 26 (10), 1639–1645. Bugge, K.E., Helseth, S., Darbyshire, P., 2008. Children’s experiences of participation in a family support program when their parent has incurable cancer. Cancer Nursing 31 (6), 426–434. Cancer BACUP, 2005. What do I Tell the Children? A Guide for a Parent with Cancer. Carter, B., McGoldrick, M. (Eds.), 1989. The Changing Family Life-cycle. A Framework for Family Therapy. Allyn and Bacon, Boston second ed. Chalmers, K.I., Kristjanson, L.J., Woodgate, R., Taylor-Brown, J., Nelson, F., Ramserran, S., Dudgeon, D., 2000. Perceptions of the role of the school in providing information and support to adolescent children of women with breast cancer. Journal of Advanced Nursing 31 (6), 1430–1438. Christ, G.H., Christ, A.E., 2006. Cancer approaches to helping children cope with a parent’s terminal illness. CA: A Cancer Journal for Clinicians 56 (4), 197–212. Compas, B.E., Worsham, N.L., Ey, S., Howell, D.C., 1996. When mom or dad has cancer: II. Coping, cognitive appraisals and psychological distress in children of cancer patients. Health Psychology 15 (3), 167–175. Compas, B.E., Worsham, N.L., Epping-Jordan, J.E., Grant, K.E., Mireau, G., Howell, D.C., Malcarne, V.L., 1994. When mom or dad has cancer: markers of psychological distress in cancer patients, spouses and children. Health Psychology 13 (6), 507–515. Clark, H.B., Ichinose, C.K., Meseck-Bushey, S., Perez, K.R., Hall, M.S., Gibertini, M., Crowe, T., 1992. Peer support group for adolescents with chronic illness. Children’s Health Care 21 (4), 233–238. Conway, C., Thompson, E., Caldwell, C., 1996. Peer support for adolescents. Paediatric Nursing 8 (1), 13–16. Davey, M., Davey, A., 2005. Adolescents coping with non terminal parental cancer. The Prevention Researcher 12 (4), 7–9. Davis Kirsch, S.E., Brandt, P.A., Lewis, F.M., 2003. Making the most of the moment. When a child’s mother has breast cancer. Cancer Nursing 26 (1), 47–54. } tze´n, K., 2000. Transforming the exhausting to enerElmberger, E., Bolund, C., Lu gizing process of being a good parent in the face of cancer. Health Care for Women International 21, 485–499. Faulkner, K.A., Davey, M., 2002. Children and adolescents of cancer patients: the impact of cancer on the family. The American Journal of Family Therapy 30, 63–72. Fitch, M., Abramson, T., 2007. Information needs of adolescents when a mother is diagnosed with breast cancer. Canadian Oncology Nursing Journal 17 (11), 16–20.

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