European Journal of Oncology Nursing 17 (2013) 697e703
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Loneliness despite the presence of others e Adolescents’ experiences of having a parent who becomes ill with cancer Elisabet Karlsson a, *, Kristina Andersson b, Britt Hedman Ahlström c a
Department of Obstetrics and Gynecology, NU-Hospital Organisation, Trollhättan, Uddevalla, Sweden Department of Pediatrics, NU-Hospital Organisation, Trollhättan, Uddevalla, Sweden c Department of Nursing, Health and Culture, University West, Trollhättan, Sweden b
a b s t r a c t Keywords: Adolescents Loneliness Narrative Parental cancer Qualitative content analysis Young adults
Aim: The aim of this study was to describe young adults’ own perspectives on the experience of having a parent who developed cancer when the young adult was an adolescent. Method: Narrative interviews were conducted with six young adults aged between 20 and 26. The interviews were analysed using qualitative content analysis. Results: The main message that the young adults communicated in the interviews was interpreted as the overarching theme ‘Loneliness despite the presence of others’. Two domains with three categories each emerged: distance, comprising a feeling of loneliness, lacking the tools to understand, and grief and anger; and closeness, comprising belief in the future, comfort and relief, and a need for support. The young adults felt a loneliness that they had never experienced before, and they lacked the tools to understand the situation. They felt grief and anger over what the cancer had caused. However, they had still managed to regain faith in the future. They found comfort and relief in the thought that this would not necessarily happen to them again, and they gained support from talking to family and friends. Conclusion: If all family members are given the same information, it becomes easier to talk about what is happening. This can reduce adolescent children’s experience of loneliness. Contact with health care professionals should be maintained throughout the period of illness. Many short informal contacts create relationships and trust that can be helpful if the worst happens and the parent dies. Ó 2013 Elsevier Ltd. All rights reserved.
Introduction This qualitative study focuses on experiences of parental cancer during adolescence. Worldwide, many adult people suffer from cancer. In Sweden in 2010, approximately 6600 people aged 35e54 were diagnosed with cancer (National Board of Health and Welfare, 2010). Many of these people have a family, potentially including adolescent children. A parent who is ill with cancer is not the only one to suffer; the whole family suffers with them (Visser et al., 2005). When a parent is diagnosed with cancer, children and adolescents experience a high degree of internal and external stress. Anxiety and stress remain constant regardless of how long the disease and treatment last (Visser et al., 2005). Adolescents and young adults experience this stress more often than children (Compas et al., 1996). The degree of malaise among adolescents will
* Corresponding author. Avd 45, NÄL, SE-461 85 Trollhättan, Sweden. E-mail addresses: [email protected] (E. Karlsson), kicki.andersson@ vgregion.se (K. Andersson), [email protected] (B. Hedman Ahlström). 1462-3889/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.09.005
depend on their self esteem and their relationship with the ill parent before the illness (Nelson and While, 2002). The recurrence of a parent’s illness affects internal stress to a very high degree (Huizinga et al., 2011). Adolescents have the ability to empathise with their parent’s suffering; this empathy is reflected in feeling sorry for the ill parent and wanting to care for and try to console them. Adolescents also feel anger about the injustice of fate, and try to find meaning in their parent’s disease. Despite this, adolescents are still able to be concerned about the healthy parent and the family situation as a whole (Thaustum et al., 2008). Adolescents may develop both emotional and behavioural problems in association with a parent’s illness (Birenbaum et al., 1999; Edwards and Clarke, 2004; Heiney et al., 1997; Howes et al., 1994; Huizinga et al., 2003; Welch et al., 1996). The burden of being at school, doing homework, and visiting the ill parent results in a feeling of stress, which can manifest in different ways. External stress, for example, may be expressed as unacceptable social behaviour, aggression, or criminality (Visser et al., 2005; Nelson et al., 1994; Birenbaum et al., 1999). Internal stress may be expressed as withdrawal, problems with concentration, somatic symptoms, or signs of anxiety (Huizinga et al., 2003). Some studies
698
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
have shown a relationship between parents’ and adolescents’ experiences of anxiety. A deeply anxious parent will have trouble talking about the cancer and the family situation, which will further increase the adolescent’s stress (Nelson et al., 1994; Edwards and Clarke, 2004). Families who are able to openly talk about the illness, express their feelings, and solve problems show lower levels of depression and anxiety (Heiney et al., 1997). In a study by Huizinga et al. (2003), adolescents whose mothers had been diagnosed with cancer expressed a feeling of conflict, and a desire to be relieved from this feeling. In a way, they were afraid of losing their mother, and wanted to spend as much time with her as possible; but at the same time they had a need for an adolescent’s natural process of liberation. Christ et al. (1994) described how girls tend to delay the normal process of liberation when their mothers become ill, and instead deepen their relationship. Adolescent boys, however, more often continue their normal liberation process. Thaustum et al. (2008) described four coping strategies used by adolescents: helping others, parentification (i.e. the adolescent takes over the parental role), distraction, and wishful thinking (i.e. the adolescent hopes for new medicines and treatments for the ill parent). Although the family share the same experience, parents’ estimations and perceptions of how adolescents cope with a parent’s illness do not correspond with the adolescent’s own estimations (Visser et al., 2005; Huizinga et al., 2003; Grant and Compas, 1995). However, mothers’ perceptions are more accurate than fathers’ (Visser et al., 2005). The parents in a study by Thaustum et al. (2008) expressed a desire for guidance in how to inform their adolescent children and what to inform them about. Since no one offered them help with this, they instead used the information they had received from health care professionals for themselves. Huizinga et al. (2003) reported that adolescents asked for abundant information about the disease, its treatment, and the prognosis. When it becomes clear that the ill parent is going to die and the family realises that the time is limited, they try to make the most of the time they have left together. Sheehan and Draucker (2011) describe this process as occurring in four steps: coming to know their time together was limited, spending more time together, extending their time together and giving up their time together. Previous studies examining adolescents’ experiences of parental cancer have been primarily quantitative, and the interviews and survey responses show evidence of parental influence. There is a lack of knowledge about adolescents’ own perspectives on parental cancer, which became evident in the review of literature presented above; this is the reason why few of the articles referenced in this introduction are particularly recent. The aim of this study was to describe young adults’ own perspectives on the experience of having a parent who became ill with cancer when the young adults were adolescents.
Methods A qualitative design was chosen, using interviews in the form of narratives. Narratives can be used to describe a natural part of life, allowing people to introduce themselves and share their feelings and experiences with others (Skott, 2004). A narrative interview is an interactive conversation where participants tell their stories without being interrupted and are given time and space to narrate. The interviewer has few pre-prepared questions, and asks follow-up questions to help move the story forward (Mishler, 1986; Polit and Beck, 2008). In the narrative interview, participants talk freely about their experiences of the specific phenomenon being studied. This increases the opportunity for the interviewer to get closer to the complexity of experiences of the phenomena (Lundman and Hällgren Graneheim, 2008; Sandelowski, 2011). Settings and participants This study took place in the south of Sweden from November 2009 to April 2011. Young adults were recruited through advertisements on a university website and bulletin boards. The inclusion criteria were: having experienced during their adolescence (13e19 years) a parent being diagnosed with cancer, and age between 20 and 26 years at the time of the interview. Inclusion took place in the order of sign-up, regardless of gender. An email was sent to the young adults including further information about the study. Six young adults participated: one man and five women (see Table 1). Data collection Data were collected through narrative interviews. The informants decided where the interview should take place; two chose their own homes, three the university, and one a hospital. Two of the authors (KA and EK) conducted three interviews each. In order to better understand the context that the informants were living in at the time when their parents were diagnosed with cancer, the interview started with the questions: ‘How old were you when your parent got cancer?’, ‘What family situation did you live in at that time?’ and ‘How old are you now?’. The main question of the study was then posed: ‘Tell me your story, what happened when your mother or father got cancer?’. The interviewer stimulated the storytelling with follow-up questions when necessary. Each interview lasted between 40 and 60 min. The collected data were transcribed verbatim by the interviewers to avoid the risk of losing important data such as facial expressions, body language, and the meaning of pauses (Mishler, 1986).
Table 1 Participant profile. Name
Age at interview
Age at onset of parent’s illness
Age at parent’s death
Family picture at onset of parent’s illness
A
22
16
20
B C D
20 20 20
16 15 14
e 17 15
E
21
16
17
F
22
15
18
Other parent never mentioned. Two older siblings moved out from home. One younger brother living with ill parent. A living on campus, just moved out from home. Parents separated. One younger brother living at home. B living at home. Cohabiting parents. Four half-siblings, all living away from home. C living at home. Parents separated, both in new relationships. One brother and two stepsisters. D alternating residence between mother and father. Cohabiting parents. One younger brother. One older half-brother living away from home. E living at home. Cohabiting parents. One younger brother. Several older half-siblings all living away from home. F living at home.
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
699
Data analysis
Ethical issues
The narratives were analysed with content analysis, focussing on the interpretation of texts (Lundman and Hällgren Graneheim, 2008). During the analysis, the authors attempted to place the text in its context. The process included dividing the text into meaning units, then condensing the meaning units and labelling them with codes following a step by step model leading to subcategories, categories, and themes (Krippendorff, 2004; Lundman and Hällgren Graneheim, 2008; Graneheim and Lundman, 2004; Morse, 1994). A theme emerged early in the analytical process, which was a process between comparing the parts of the text and the whole of the text. The theme became increasingly evident the longer the analysis proceeded. Meaning units were identified and condensed without decreasing the quality in what remained of their content; two domains emerged during this process (Lundman and Hällgren Graneheim, 2008). The next step was to label the condensed meaning units with codes. Finally, the codes were compared based on similarities and differences, and sorted into subcategories and categories.
The study was approved by the local ethics committee at University West (2009/32 B 22), and adhered to the guidelines set out in the World Medical Association Declaration of Helsinki (WMA, 2008). Precautions were taken to ensure that resources were available to meet any crisis reactions among the young adults. A counsellor, a psychologist, and the deacon at the university were informed of the study and were prepared to be available for the participants if support needs arose. The young adults gave written consent to participate, and were informed that they could terminate their participation at any time. Only one interviewer was present at each interview, due to the sensitive subject and the balance of power.
Analytical rigour To ensure trustworthiness, interviews were transcribed by the corresponding interviewer. The transcripts were read repeatedly by both interviewers, who also conducted the analysis together; the third author acted as co-reader. In addition, all three authors individually and together scrutinised and discussed all aspects of the study, further increasing the credibility (Lundman and Hällgren Graneheim, 2008; Polit and Beck, 2008; Rose and Webb, 1998). When using narrative interviews, it is neither possible nor desirable for interviewers to exclude themselves from the narrative; the interviewers become co-creators. The credibility of the results of the study will be dependent on the extent to which results can be transferred to other groups or situations (Estabrooks et al., 1994; Polit and Beck, 2008). It is important to provide an accurate description of the sample, participants, data collection, analysis, and context of the study so that readers can decide whether the results are transferable to other contexts (Lundman and Hällgren Graneheim, 2008; Morse, 1994).
Findings Loneliness despite the presence of others The message communicated by the young adults was interpreted into one theme: Loneliness despite the presence of others. Two domains with three categories each emerged: distance, comprising a feeling of loneliness, lacking the tools to understand, and grief and anger; and closeness, comprising belief in the future, comfort and relief, and a need for support. The loneliness that the young adults experienced permeated their lives and was expressed not only in terms of distance but also as an undertone when expressing closeness. An overview of the analytical process and findings is given in Table 2. Distance Feelings of distance were related to time, relationships, understanding, and the physical distance. This domain contained three categories: a feeling of loneliness, lacking the tools to understand, and grief and anger. A feeling of loneliness Loneliness was described both as physical loneliness and as a feeling of being alone in their experience. The young adults felt that
Table 2 The analytical process: domains, sub-categories, categories, and theme. Domains
Sub-categories
Categories
Theme
Distance
Desolation Missing the parent Communication difficulties Uncertainty about the future Difficulty in understanding Guilt over inability to understand Turning down support in the acute phase Grief at the incurable diagnosis The grief lives on Anger about what was happening Angry about the betrayal of friends I will be fine Learning to seize the day This need not happen to me again Comfort in living as usual Closeness affords security It could have been worse Perceptions of the parent’s continued presence Remembering with joy Helpful support from family and friends Helpful support from professionals
A feeling of loneliness
Loneliness despite the presence of others
Closeness
Lacking the tools to understand
Grief and anger
Belief in the future
Comfort and relief
A need for support
700
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
no one had really understood what they were going through. Although there were many people present, loneliness was still there: D: “Everyone was there at the parting at the hospital, but we were all alone in a way.” Loneliness was also experienced when the ill parent did not understand that the adolescent had a need to learn about the disease and the treatment. The young adults spoke about missing their parents even before they died, because the illness had caused so many changes in their parents, both in body and in personality. They felt the lack of their healthy parents. The young adults expressed the wish that the ill parent had shown their feelings about the disease, rather then hiding their feelings to protect the young adults’ emotions. The young adults noted that their ill parents had difficulty talking about the illness, especially about the fact that they could die. B: “It was the only thing you thought about, but yet we were not talking about it, everyone just went around and was . very tense.” The young adults did not talk about the illness either, but thought about it a lot. Although the family had previously been able to talk to each other about everything, the young adults felt that the disease changed this. Loneliness was also expressed as an uncertainty about the future and what would happen if, or when, the ill parent died. The parent was irreplaceable, and their death would mean that an important person was gone forever. The young adults also felt fear that another loved one would fall ill or die. The informants also described difficulties in communicating with their friends. This was an even greater disappointment, because they had a great need to share thoughts about their situation. They also wanted to share their memories with friends, but were rejected: A: “I only had to mention that he. so did he, or like that, from everyday life, but I couldn’t, they became completely stiff and started talking about something completely different instead.” Lacking the tools to understand The young adults found it difficult to understand the news of the parent’s disease, and they had many questions that were never answered. One reason for this was the parent’s efforts to protect them, but another was that the parent did not know enough about the disease. Some of the young adults would have preferred to be offered information from health care professionals. They also described their inability to understand that the parent had not improved, but instead was expected to die. The young adults expressed a sense of guilt about their inability to understand that their parents’ needs had changed, and in what condition the parent really was. At the same time, they explained that they could not have known or understood: F: “. he did not want to fly to Stockholm by himself to get laser treatment. Once he asked me to come along, but I felt that I couldn’t because I had school . it was probably, he ought to be able to cope with this himself, he had done that before.” Most of the young adults said that they had declined help from a counsellor or other professional support in direct connection to their parent’s death. They explained that they could not imagine talking to someone they had no previous relationship with: D: “. There was no one who came while he was sick. . When she got there, the counsellor, after he had passed away, I just felt, no, you have nothing to do with this at all, like . It would have been one thing if she had been present the whole time.”
Grief and anger The young adults experienced grief from the moment the parent was diagnosed with cancer. A sense of hopelessness arose even before they knew the prognosis: D: “. it was hopeless, so to speak .” Some of the young adults felt sorrow in advance, as anticipatory grief; they prepared for the worst, although they tried to be hopeful. After the death of the parent the young adults grieved that nothing could ever be as it had been before: A: “. God, I would like to call dad and talk to him about this, and I can’t .” At holidays such as Christmas and birthdays, the young adults again mourned the parent they had lost. They had to create new traditions, even though they did not actually want to, because the grief remained in each new stage of life. Some of the young adults expressed anger that their parents had not recovered as they had expected. This anger was expressed as a sense of defiance: F: “I don’t know. Somehow it felt like I was mad at him because he didn’t get better, and then I didn’t want to be with him either .” The young adults also felt anger and disappointment with peers who did not understand their situation. Closeness Feelings of closeness were related to time, relationships, understanding, and a physical closeness. This domain contained three categories: belief in the future, comfort and relief, and the importance of support. Belief in the future The young adults said that although the period of the parent’s illness and death had been difficult, they had fared quite well. They stated that there were no rules for how to grieve or feel, and explained that they had learned to “seize the day”. They were not afraid anymore, and their parents were no longer suffering. The young adults nevertheless experienced a feeling of closeness to their departed parent: A: “It makes you not as scared anymore, because it’s better to live as you do instead, and live as you want instead of worrying about such things . I’ve probably grown in a sense. It feels so good to know that he doesn’t need to suffer, and that he’s still with me. And that you do not regret anything. It is nice to feel his presence.” The young adults felt they had matured through their experiences. They also indicated that cancer was not a penalty; anyone could suffer the illness, and it was not necessarily going to happen to them again. Comfort and relief The young adults had gained a feeling of relief from being close to the ill parent and the rest of the family; this created a sense of security for themselves and for the whole family. This closeness also helped to create good memories of the time of illness, which were a positive thing to have after the parent had died. The young adults also gained security from participating in decisions concerning the care of the ill parent, and hence having some influence on those aspects of the future that were not fixed:
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
E: “Mother asked us, how do you, do you want them, for people to come here and help him with things, or do we want him to be in a hospice where we can also be there. No, I think it was pretty obvious to everyone that we wanted him home” All the young adults spoke about trying to live as normal a life as possible, even when the parent’s disease progressed and everything actually became less normal. When the changes in the ill parent became too obvious, the young adults sought relief in other people and environments. After the death of the parent, the young adults felt able to live a normal life again; to restart life with a new normality: E: “The funeral was tough because it brought everything up again. That was that. Now it’s mum, me and my little brother. Everything is quite normal.” Despite the changes in the ill parent’s body, some of the young adults asserted that their parent’s personality was the same as before. After the death finally occurred, they comforted themselves by remembering that although they had lost their parent, it could have been even worse, with even more suffering for the ill parent. The young adults spoke about perceptions of a presence reminiscent of the dead parent, about dreams, and about recognising their parent in a sibling. These sensations and experiences filled the young adults with a feeling of comfort and a feeling of not being abandoned: D: “I’ve seen him dead, so I know he is no more. But he comes to me in dreams sometimes and talks to me. I think this is nice, then it feels like he is there after all.” The young adults expressed that it felt good to remember the dead parent as a healthy person; the parent’s appearance, body language, voice, and the things they had experienced together. The young adults liked to talk and write about these memories. Stored memories such as photos, films, sound recordings, and letters were important because they were afraid of forgetting their parent’s appearance. The importance of support The young adults pointed out that the support of family and friends meant a lot during the parent’s illness and death. Their burden could be eased by having the opportunity to talk to someone who understood and shared their concerns, grief, and worries. Some of the young adults also described the support received from professionals such as counsellors, nurses, or the palliative care team: E: “.those who came to us [the palliative care team], they were like really good and very gentle and sweet, and cared about everybody.”
Discussion The young adults experienced a loneliness despite being with others, and this loneliness remained several years after their loss. They described this loneliness not primarily as a physical solitude, but as a deeper loneliness stemming from being alone in having these experiences, with no one else who could completely understand the situation. This result stands in contrast to a review by Visser et al., in which no study highlighted loneliness (2004). The young adults in the present study made their own choice to participate in our research. In previous studies, parents have either responded for their children or been involved in their children’s participation (Visser et al., 2005; Huizinga et al., 2003; Grant and
701
Compas, 1995). It is possible that feelings of loneliness did not emerge in previous studies because no one asked the children directly; parental involvement could have prevented the children from expressing these feelings. Children show solidarity with their parents, and in stressful situations parents may not have the ability to acknowledge their children’s feelings of loneliness. In the present study, however, we found that when the young adults talked freely the feeling of loneliness clearly emerged. The young adults’ inability to understand what was happening when their parent became ill was rooted in the fact that they and their parents had not received adequate information about the disease, its prognosis, and the feelings and reactions such an illness can cause. They therefore lacked the tools to understand and to cope. The young adults described how their grieving process began as soon as they learned about the diagnosis. Rini and Loriz (2007) have discussed how this anticipatory grief can have a positive effect on the perception of the process of illness, the journey towards death, and the grief that follows. This emphasises the need for truthful information and honest communication between parents and adolescents to reduce worry and anxiety. When everyone in the family is able to act openly, express their feelings, and manage to solve their problems, the result is a well-functioning family which is able to cope (Huizinga et al., 2003; Edwards and Clarke, 2004). This is underlined by legislation such as the Swedish Health and Medical Services Act, in which children, by law, are considered equal to adults in terms of their right to information (1982:763x2g). Only a few of our participants referred explicitly to anger, but implicit feelings of anger and disappointment were evident among most of the participants, revealed in gestures, body language, and tone of voice (cf. Lundman and Hällgren Graneheim, 2008). Cerney and Buskirk (1991) have emphasised that anger is a primitive reaction which can be a protection when a person is under threat, such as when a parent suffers a serious illness. It is therefore important that nurses and health care professionals help the adolescent children of cancer patients to understand the difference between being angry at the ill parent and being angry at the situation of the parent’s illness, thus unburdening the adolescents’ feelings of guilt. The young adults said that they coped well through the parental illness and death; this was a surprise for us, albeit a pleasant one. Despite the fact that something terrible had happened, the young adults were capable of looking forward. They understood that their experiences, which they would gladly have been spared, made them look differently at life. They had moved on in life, enriched with one more important experience. Mireault and Compas (1996) have described how young adults show less anxiety than adolescents when a parent becomes ill or dies. If the present study had been carried out when the young adults were still adolescents, perhaps they would have expressed more anxiety, indicating that information at that time in life is even more important. The young adults expressed several factors that provided solace and comfort, making it easier for them to cope with and get through the parent’s illness and death. They found major comfort in being with the ill parent and the other family members. They described how both the ill and the healthy parent tried to live as normally as possible despite the cancer. This, the young adults believed, was because the parents wanted to protect their children from anxiety, a result also described by Huizinga et al. (2003). However, Thaustum et al. (2008) have reported that when parents consider the situation retrospectively, they say that it would have been better to give the adolescents more detailed information and knowledge at an earlier stage of the disease, to prevent negative reactions. As the present study shows, early in the course of the disease the young adults found the best relief by being with the ill
702
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
parent and family, but when the situation at home became too difficult for them they sought comfort with other people. Nolbris et al. (2010) have emphasised the importance of having someone else to talk to in this situation, preferably someone who has experienced the same thing. In the present study it became clear that the way the young adults had been treated during the course of the disease also affected how they narrated and felt after the parent’s death. Since five of the six parents had died of their disease, the stories contained the entire course of events from onset of illness to the death and the time beyond. This, according to Skott (2004), is the natural narrative structure; a story always has a beginning, a middle, and an end. It is therefore important that nurses and other health care professionals take the time to listen to the whole story, otherwise essential information can be lost and this can prevent the adolescents from getting help and support. The young adult whose parent had recovered from cancer differed from the other informants by trying to put it all behind her, and therefore did not have the same need of remembering and telling. Methodological considerations and recommendations for further research All students at the university had access to the website and the message boards where the invitation to participate in the study was posted. Despite this, and despite the fact that the advertisement lasted for 1.5 years the number of participants in the present study was low. The gender balance was uneven, five women and one man. Many other studies also have a majority of female participants (Compas et al., 1996; Grant and Compas, 1995; Heiney et al., 1997; Nelson and While, 2002; Visser et al., 2005; Welch et al., 1996; Wong et al., 2006). Considering the uneven gender balance, Davey et al. (2005) found that women and girls are more likely to talk about and share their feelings with others while men and boys are more inclined to solve their problems by using more active problem-focused strategies. The low number of participants recruited to this study and the preponderance of females could to some degree be due to the design. It is possible that advertisements in newspapers might have attracted a larger number of participants with a better gender balance. The outcome of the parental illness differed; five parents died, and one recovered. The young adults’ stories were rich and deep, giving plentiful material to analyse. Despite the low number of participants, the uneven gender balance, and different outcome of the parents’ disease, this study showed similarities with larger studies (Compas et al., 1996; Edwards and Clarke, 2004; Grant and Compas, 1995; Nelson et al., 1994; Wong et al., 2006). The fact that five out of six young adults who wanted to participate in the study had parents who had died of their disease may also have affected the results. In order to investigate differences in adolescents’ experiences, it would have been desirable to have a more even gender balance and to divide the result by whether the parent had fully recovered, was still ill, or had died. We chose to conduct the interviews after the adolescents had reached adulthood, because children are not allowed to independently make the decision to participate, and the parents’ attitude may affect the narrative. Adolescence is a fragile and unstable period in life; a young person at this stage has not yet found their adult self, and alternates between being a child and being an adult (Erikson, 1997). It is therefore important for health care professionals to support dialogue between parents and adolescents, to help them talk about the disease and the family’s experience. One way to support such a dialogue is to motivate the parents to allow the children in the family, together with their parents, to receive information from health care professionals.
Conclusions and recommendations for practice The young adults were willing to narrate about their experiences. They expressed a lack of support during the parent’s illness, and spoke about a distance that turned into a loneliness they had never experienced before. They lacked the tools to understand the situation, and they felt grief and anger over what the cancer had caused. Nevertheless, via a sense of closeness they had managed to regain belief in the future. They found comfort and relief in the thought that this would not necessarily happen to them again, and gained support by talking to family and friends. An undertone of loneliness pervaded everything they said, even when speaking about positive aspects. When nurses and other health care professionals meet an adult diagnosed with a serious illness, they should first find out if the patient is permanently living with children (0e18 years). It is important to include these children and adolescents as family members, and ensure that they are provided with information. Written guidelines facilitate this difficult task. Nurses and other health care professionals should offer to inform the children along with their parents. The young adults in our study would have liked to have had accurate information from health care professionals during their parents’ illness, and the United Nations Convention on the Rights of the Child gives children and adolescents this right (UNICEF, 2013-03-01). Information could be provided by nurses or other health care professionals. The guidelines should also advise that early in the parent’s disease, a personal contact should be created with a nurse or counsellor providing psychosocial support in outpatient health care. This contact should be maintained throughout the whole period of illness. Relationships and trust can be created by repeated short informal contacts between health care professionals and adolescents, using the internet, text messages, and other means of communication that are natural for young people. This can be helpful if the worst happens and the parent dies. Conflict of interest The authors have no conflicts of interest to declare inherent to the submission of this manuscript. Acknowledgements We are humbly grateful to the young adults who shared their stories. We also thank Ingela Berggren for valuable comments and advice. This research was partly funded by the Research and Development Unit, NU-Hospital Organisation, Trollhättan/Uddevalla, Sweden. References Birenbaum, L.K., Yancey, D.Z., Phillips, D.C., Chand, N., Huster, G., 1999. School-age children’s and adolescents’ adjustment when a parent has cancer. Oncology Nursing Forum 26 (10), 1639e1645. Cerney, M.S., Buskirk, J.R., 1991. Anger: the hidden part of grief. Bulletin of the Menninger Clinic 55 (2), 228e237. Christ, G.H., Siegel, K., Sperber, D., 1994. Impact of parental terminal cancer on adolescents. American Orthopsychiatric Association 64 (4), 604e613. 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), 167e175. Davey, M., Gulish, L., Askew, J., Godette, K., Childs, N., 2005. Adolescents coping with mom’s breast cancer: developing family intervention programs. Journal of Marital Family Therapy 31 (2), 247e258. Edwards, B., Clarke, V., 2004. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psycho-Oncology 13, 562e576. Erikson, E.H., 1997. The Life Cycle Completed. W.W. Norton & Company Inc., New York.
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703 Estabrooks, C.A., Field, P.A., Morse, J.M., 1994. Pearls, pith and provocation. Aggregating qualitative findings: an approach to theory development. Qualitative Health Research 4 (4), 503e511. Graneheim, U.H., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24 (2), 105e112. Grant, K.E., Compas, B.E., 1995. Stress and anxious-depressed symptoms among adolescents: searching for mechanisms of risk. Journal of Consulting and Clinical Psychology 63 (6), 1015e1021. Heiney, S.P., Bryant, L.H., Walker, S., Parrish, R.S., Provenzano, F.J., Kelly, K.E., 1997. Impact of parental anxiety on child emotional adjustment when a parent has cancer. Oncology Nursing Forum 24 (4), 655e661. Howes, M.J., Hoke, L., Winterbottom, M., Delafield, D., 1994. Psychosocial effects of breast-cancer on the patient’s children. Journal of Psychosocial Oncology 12 (4), 1e21. Huizinga, G.A., Van der Graaf, W.T.A., Visser, A., Dijkstra, J.S., HoekstraWeebers, J.E.H.M., 2003. Psychosocial consequences for children of a parent with cancer. A pilot study. Cancer Nursing 26 (3), 195e202. Huizinga, G.A., Visser, A., Van der Graaf, W.T.A., Hoekstra, H.J., Stewart, R.E., Hoekstra-Weebers, J.E.H.M., 2011. Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer. PsychoOncology 20, 730e737. Krippendorff, K., 2004. Measuring the reliability of qualitative text analysis data. Quality & Quantity 38, 787e800. Lundman, B., Hällgren Graneheim, U., 2008. Kvalitativ innehållsanalys. In: Granskär, M., Höglund-Nielsen, B. (Eds.), Tillämpad Kvalitativ Forskning Inom Hälso-och Sjukvård. [Qualitative Content Analysis. In: Granskär, M. Höglund-Nielsen, B. (Eds.), Applied qualitative research in health care. Studentlitteratur, Lund, pp. 159e172. Mireault, G.C., Compas, B.E., 1996. A prospective study of coping and adjustment before and after a parent’s death from cancer. Journal of Psychosocial Oncology 14 (4), 1e18. Mishler, E.G., 1986. Research Interviewing Context and Narrative. Harvard University, London. Morse, J.M., 1994. Qualitative research: fact or fantasy? In: Morse, J.M. (Ed.), Critical Issues in Qualitative Research Methods. Sage Publication, Thousand Oaks, pp. 1e7. National Board of Health and Welfare, 2010. Sweden. http://www.socialstyrelsen. se/statistik/statistikdatabas/cancer (2013.10.02). Nelson, E., Sloper, P., Charlton, A., While, D., 1994. Children who have a parent with cancer: pilot study. Journal of Cancer Education 9, 30e36. Nelson, E., While, D., 2002. Children’s adjustment during the first year of a parent’s cancer diagnosis. Journal of Psychosocial Oncology 20 (1), 15e36.
703
Nolbris, M., Abrahamsson, J., Hellström, A.-L., Olofsson, L., Enskär, K., 2010. The experience of therapeutic support groups by siblings of children with cancer. Pediatric Nursing 36 (6), 298e304. Polit, D.F., Beck, C.T., 2008. Nursing Research: Generating and Assessing Evidence for Nursing Practice, eighth ed. Wolters Kluwer/Lippingcott Williams & Wilkins, Philadelphia. Rini, A., Loriz, L., 2007. Anticipatory mourning in parents with a child who dies while hospitalized. Journal of Pediatric Nursing 22 (4), 272e282. Rose, K., Webb, C., 1998. Analyzing data: maintaining rigor in a qualitative study. Qualitative Health Research 8 (4), 556e562. Sandelowski, M., 2011. When a cigar is not just a cigar: alternative takes on data and data analysis. Research in Nursing and Health 34, 342e352. Sheehan, D.K., Draucker, C.B., 2011. Interaction patterns between parents with advanced cancer and their adolescent children. Psycho-Oncology 20 (10), 1108e1115. Skott, C., 2004. Introduktion: Berättelsens betydelse, In: Skott, C. (Eds.), Berättelsens Praktik Och Teori-narrativ Forskning I Ett Hermeneutiskt Perspektiv. [Introduction: Narrative significance]. In: Skott, C. (Eds.), The narrative in theory and practice e narrative research in a hermeneutic perspective. Studentlitteratur Lund. p. 9. Swedish Health and Medical Services Act, 1982:763x2g, 2013.03.01 http://www. riksdagen.se/sv/. Thaustum, M., Birkelund Johansen, M., Gubba, L., Berg Olesen, L., Romer, G., 2008. Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer. Clinical Child Psychology and Psychiatry 13 (1), 123e138. UNICEF, 2013 03 01. United Nations Convention on the Rights of the Child. http:// www.unicef.org/crc/. Visser, A., Huizinga, G.A., Hoekstra, H.J., Van der Graaf, W.T.A., Klip, E.C., Pras, E., et al., 2005. Emotional and behavioural functioning of children of a parent diagnosed with cancer: a cross-informant perspective. Psycho-Oncology 14, 746e758. Visser, A., Huizinga, G.A., Van der Graaf, W.T.A., Hoekstra, H.J., HoekstraWeebers, J.E.H.M., 2004. The impact of parental cancer on children and the family: a review of the literature. Cancer Treatment Reviews 30, 683e694. Welch, A.S., Wadsworth, M.E., Compas, B.E., 1996. Adjustment of children and adolescents to parental cancer. American Cancer Society 77 (7), 1409e1418. WMA, 2008. Declaration of Helsinki e Ethical Principles for Medical Research Involving Human Subjects, 2012.11.16 http://www.wma.net/en/30publications/ 10policies/b3/. Wong, M., Looney, E., Michaels, J., Palesh, O., Koopman, C., 2006. A preliminary study of peritraumatic dissociation, social support, and coping in relation to posttraumatic stress symptoms for a parent’s cancer. Psycho-Oncology 15, 1093e1098.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Loneliness despite the presence of others e Adolescents’ experiences of having a parent who becomes ill with cancer Elisabet Karlsson a, *, Kristina Andersson b, Britt Hedman Ahlström c a
Department of Obstetrics and Gynecology, NU-Hospital Organisation, Trollhättan, Uddevalla, Sweden Department of Pediatrics, NU-Hospital Organisation, Trollhättan, Uddevalla, Sweden c Department of Nursing, Health and Culture, University West, Trollhättan, Sweden b
a b s t r a c t Keywords: Adolescents Loneliness Narrative Parental cancer Qualitative content analysis Young adults
Aim: The aim of this study was to describe young adults’ own perspectives on the experience of having a parent who developed cancer when the young adult was an adolescent. Method: Narrative interviews were conducted with six young adults aged between 20 and 26. The interviews were analysed using qualitative content analysis. Results: The main message that the young adults communicated in the interviews was interpreted as the overarching theme ‘Loneliness despite the presence of others’. Two domains with three categories each emerged: distance, comprising a feeling of loneliness, lacking the tools to understand, and grief and anger; and closeness, comprising belief in the future, comfort and relief, and a need for support. The young adults felt a loneliness that they had never experienced before, and they lacked the tools to understand the situation. They felt grief and anger over what the cancer had caused. However, they had still managed to regain faith in the future. They found comfort and relief in the thought that this would not necessarily happen to them again, and they gained support from talking to family and friends. Conclusion: If all family members are given the same information, it becomes easier to talk about what is happening. This can reduce adolescent children’s experience of loneliness. Contact with health care professionals should be maintained throughout the period of illness. Many short informal contacts create relationships and trust that can be helpful if the worst happens and the parent dies. Ó 2013 Elsevier Ltd. All rights reserved.
Introduction This qualitative study focuses on experiences of parental cancer during adolescence. Worldwide, many adult people suffer from cancer. In Sweden in 2010, approximately 6600 people aged 35e54 were diagnosed with cancer (National Board of Health and Welfare, 2010). Many of these people have a family, potentially including adolescent children. A parent who is ill with cancer is not the only one to suffer; the whole family suffers with them (Visser et al., 2005). When a parent is diagnosed with cancer, children and adolescents experience a high degree of internal and external stress. Anxiety and stress remain constant regardless of how long the disease and treatment last (Visser et al., 2005). Adolescents and young adults experience this stress more often than children (Compas et al., 1996). The degree of malaise among adolescents will
* Corresponding author. Avd 45, NÄL, SE-461 85 Trollhättan, Sweden. E-mail addresses: [email protected] (E. Karlsson), kicki.andersson@ vgregion.se (K. Andersson), [email protected] (B. Hedman Ahlström). 1462-3889/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.09.005
depend on their self esteem and their relationship with the ill parent before the illness (Nelson and While, 2002). The recurrence of a parent’s illness affects internal stress to a very high degree (Huizinga et al., 2011). Adolescents have the ability to empathise with their parent’s suffering; this empathy is reflected in feeling sorry for the ill parent and wanting to care for and try to console them. Adolescents also feel anger about the injustice of fate, and try to find meaning in their parent’s disease. Despite this, adolescents are still able to be concerned about the healthy parent and the family situation as a whole (Thaustum et al., 2008). Adolescents may develop both emotional and behavioural problems in association with a parent’s illness (Birenbaum et al., 1999; Edwards and Clarke, 2004; Heiney et al., 1997; Howes et al., 1994; Huizinga et al., 2003; Welch et al., 1996). The burden of being at school, doing homework, and visiting the ill parent results in a feeling of stress, which can manifest in different ways. External stress, for example, may be expressed as unacceptable social behaviour, aggression, or criminality (Visser et al., 2005; Nelson et al., 1994; Birenbaum et al., 1999). Internal stress may be expressed as withdrawal, problems with concentration, somatic symptoms, or signs of anxiety (Huizinga et al., 2003). Some studies
698
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
have shown a relationship between parents’ and adolescents’ experiences of anxiety. A deeply anxious parent will have trouble talking about the cancer and the family situation, which will further increase the adolescent’s stress (Nelson et al., 1994; Edwards and Clarke, 2004). Families who are able to openly talk about the illness, express their feelings, and solve problems show lower levels of depression and anxiety (Heiney et al., 1997). In a study by Huizinga et al. (2003), adolescents whose mothers had been diagnosed with cancer expressed a feeling of conflict, and a desire to be relieved from this feeling. In a way, they were afraid of losing their mother, and wanted to spend as much time with her as possible; but at the same time they had a need for an adolescent’s natural process of liberation. Christ et al. (1994) described how girls tend to delay the normal process of liberation when their mothers become ill, and instead deepen their relationship. Adolescent boys, however, more often continue their normal liberation process. Thaustum et al. (2008) described four coping strategies used by adolescents: helping others, parentification (i.e. the adolescent takes over the parental role), distraction, and wishful thinking (i.e. the adolescent hopes for new medicines and treatments for the ill parent). Although the family share the same experience, parents’ estimations and perceptions of how adolescents cope with a parent’s illness do not correspond with the adolescent’s own estimations (Visser et al., 2005; Huizinga et al., 2003; Grant and Compas, 1995). However, mothers’ perceptions are more accurate than fathers’ (Visser et al., 2005). The parents in a study by Thaustum et al. (2008) expressed a desire for guidance in how to inform their adolescent children and what to inform them about. Since no one offered them help with this, they instead used the information they had received from health care professionals for themselves. Huizinga et al. (2003) reported that adolescents asked for abundant information about the disease, its treatment, and the prognosis. When it becomes clear that the ill parent is going to die and the family realises that the time is limited, they try to make the most of the time they have left together. Sheehan and Draucker (2011) describe this process as occurring in four steps: coming to know their time together was limited, spending more time together, extending their time together and giving up their time together. Previous studies examining adolescents’ experiences of parental cancer have been primarily quantitative, and the interviews and survey responses show evidence of parental influence. There is a lack of knowledge about adolescents’ own perspectives on parental cancer, which became evident in the review of literature presented above; this is the reason why few of the articles referenced in this introduction are particularly recent. The aim of this study was to describe young adults’ own perspectives on the experience of having a parent who became ill with cancer when the young adults were adolescents.
Methods A qualitative design was chosen, using interviews in the form of narratives. Narratives can be used to describe a natural part of life, allowing people to introduce themselves and share their feelings and experiences with others (Skott, 2004). A narrative interview is an interactive conversation where participants tell their stories without being interrupted and are given time and space to narrate. The interviewer has few pre-prepared questions, and asks follow-up questions to help move the story forward (Mishler, 1986; Polit and Beck, 2008). In the narrative interview, participants talk freely about their experiences of the specific phenomenon being studied. This increases the opportunity for the interviewer to get closer to the complexity of experiences of the phenomena (Lundman and Hällgren Graneheim, 2008; Sandelowski, 2011). Settings and participants This study took place in the south of Sweden from November 2009 to April 2011. Young adults were recruited through advertisements on a university website and bulletin boards. The inclusion criteria were: having experienced during their adolescence (13e19 years) a parent being diagnosed with cancer, and age between 20 and 26 years at the time of the interview. Inclusion took place in the order of sign-up, regardless of gender. An email was sent to the young adults including further information about the study. Six young adults participated: one man and five women (see Table 1). Data collection Data were collected through narrative interviews. The informants decided where the interview should take place; two chose their own homes, three the university, and one a hospital. Two of the authors (KA and EK) conducted three interviews each. In order to better understand the context that the informants were living in at the time when their parents were diagnosed with cancer, the interview started with the questions: ‘How old were you when your parent got cancer?’, ‘What family situation did you live in at that time?’ and ‘How old are you now?’. The main question of the study was then posed: ‘Tell me your story, what happened when your mother or father got cancer?’. The interviewer stimulated the storytelling with follow-up questions when necessary. Each interview lasted between 40 and 60 min. The collected data were transcribed verbatim by the interviewers to avoid the risk of losing important data such as facial expressions, body language, and the meaning of pauses (Mishler, 1986).
Table 1 Participant profile. Name
Age at interview
Age at onset of parent’s illness
Age at parent’s death
Family picture at onset of parent’s illness
A
22
16
20
B C D
20 20 20
16 15 14
e 17 15
E
21
16
17
F
22
15
18
Other parent never mentioned. Two older siblings moved out from home. One younger brother living with ill parent. A living on campus, just moved out from home. Parents separated. One younger brother living at home. B living at home. Cohabiting parents. Four half-siblings, all living away from home. C living at home. Parents separated, both in new relationships. One brother and two stepsisters. D alternating residence between mother and father. Cohabiting parents. One younger brother. One older half-brother living away from home. E living at home. Cohabiting parents. One younger brother. Several older half-siblings all living away from home. F living at home.
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
699
Data analysis
Ethical issues
The narratives were analysed with content analysis, focussing on the interpretation of texts (Lundman and Hällgren Graneheim, 2008). During the analysis, the authors attempted to place the text in its context. The process included dividing the text into meaning units, then condensing the meaning units and labelling them with codes following a step by step model leading to subcategories, categories, and themes (Krippendorff, 2004; Lundman and Hällgren Graneheim, 2008; Graneheim and Lundman, 2004; Morse, 1994). A theme emerged early in the analytical process, which was a process between comparing the parts of the text and the whole of the text. The theme became increasingly evident the longer the analysis proceeded. Meaning units were identified and condensed without decreasing the quality in what remained of their content; two domains emerged during this process (Lundman and Hällgren Graneheim, 2008). The next step was to label the condensed meaning units with codes. Finally, the codes were compared based on similarities and differences, and sorted into subcategories and categories.
The study was approved by the local ethics committee at University West (2009/32 B 22), and adhered to the guidelines set out in the World Medical Association Declaration of Helsinki (WMA, 2008). Precautions were taken to ensure that resources were available to meet any crisis reactions among the young adults. A counsellor, a psychologist, and the deacon at the university were informed of the study and were prepared to be available for the participants if support needs arose. The young adults gave written consent to participate, and were informed that they could terminate their participation at any time. Only one interviewer was present at each interview, due to the sensitive subject and the balance of power.
Analytical rigour To ensure trustworthiness, interviews were transcribed by the corresponding interviewer. The transcripts were read repeatedly by both interviewers, who also conducted the analysis together; the third author acted as co-reader. In addition, all three authors individually and together scrutinised and discussed all aspects of the study, further increasing the credibility (Lundman and Hällgren Graneheim, 2008; Polit and Beck, 2008; Rose and Webb, 1998). When using narrative interviews, it is neither possible nor desirable for interviewers to exclude themselves from the narrative; the interviewers become co-creators. The credibility of the results of the study will be dependent on the extent to which results can be transferred to other groups or situations (Estabrooks et al., 1994; Polit and Beck, 2008). It is important to provide an accurate description of the sample, participants, data collection, analysis, and context of the study so that readers can decide whether the results are transferable to other contexts (Lundman and Hällgren Graneheim, 2008; Morse, 1994).
Findings Loneliness despite the presence of others The message communicated by the young adults was interpreted into one theme: Loneliness despite the presence of others. Two domains with three categories each emerged: distance, comprising a feeling of loneliness, lacking the tools to understand, and grief and anger; and closeness, comprising belief in the future, comfort and relief, and a need for support. The loneliness that the young adults experienced permeated their lives and was expressed not only in terms of distance but also as an undertone when expressing closeness. An overview of the analytical process and findings is given in Table 2. Distance Feelings of distance were related to time, relationships, understanding, and the physical distance. This domain contained three categories: a feeling of loneliness, lacking the tools to understand, and grief and anger. A feeling of loneliness Loneliness was described both as physical loneliness and as a feeling of being alone in their experience. The young adults felt that
Table 2 The analytical process: domains, sub-categories, categories, and theme. Domains
Sub-categories
Categories
Theme
Distance
Desolation Missing the parent Communication difficulties Uncertainty about the future Difficulty in understanding Guilt over inability to understand Turning down support in the acute phase Grief at the incurable diagnosis The grief lives on Anger about what was happening Angry about the betrayal of friends I will be fine Learning to seize the day This need not happen to me again Comfort in living as usual Closeness affords security It could have been worse Perceptions of the parent’s continued presence Remembering with joy Helpful support from family and friends Helpful support from professionals
A feeling of loneliness
Loneliness despite the presence of others
Closeness
Lacking the tools to understand
Grief and anger
Belief in the future
Comfort and relief
A need for support
700
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
no one had really understood what they were going through. Although there were many people present, loneliness was still there: D: “Everyone was there at the parting at the hospital, but we were all alone in a way.” Loneliness was also experienced when the ill parent did not understand that the adolescent had a need to learn about the disease and the treatment. The young adults spoke about missing their parents even before they died, because the illness had caused so many changes in their parents, both in body and in personality. They felt the lack of their healthy parents. The young adults expressed the wish that the ill parent had shown their feelings about the disease, rather then hiding their feelings to protect the young adults’ emotions. The young adults noted that their ill parents had difficulty talking about the illness, especially about the fact that they could die. B: “It was the only thing you thought about, but yet we were not talking about it, everyone just went around and was . very tense.” The young adults did not talk about the illness either, but thought about it a lot. Although the family had previously been able to talk to each other about everything, the young adults felt that the disease changed this. Loneliness was also expressed as an uncertainty about the future and what would happen if, or when, the ill parent died. The parent was irreplaceable, and their death would mean that an important person was gone forever. The young adults also felt fear that another loved one would fall ill or die. The informants also described difficulties in communicating with their friends. This was an even greater disappointment, because they had a great need to share thoughts about their situation. They also wanted to share their memories with friends, but were rejected: A: “I only had to mention that he. so did he, or like that, from everyday life, but I couldn’t, they became completely stiff and started talking about something completely different instead.” Lacking the tools to understand The young adults found it difficult to understand the news of the parent’s disease, and they had many questions that were never answered. One reason for this was the parent’s efforts to protect them, but another was that the parent did not know enough about the disease. Some of the young adults would have preferred to be offered information from health care professionals. They also described their inability to understand that the parent had not improved, but instead was expected to die. The young adults expressed a sense of guilt about their inability to understand that their parents’ needs had changed, and in what condition the parent really was. At the same time, they explained that they could not have known or understood: F: “. he did not want to fly to Stockholm by himself to get laser treatment. Once he asked me to come along, but I felt that I couldn’t because I had school . it was probably, he ought to be able to cope with this himself, he had done that before.” Most of the young adults said that they had declined help from a counsellor or other professional support in direct connection to their parent’s death. They explained that they could not imagine talking to someone they had no previous relationship with: D: “. There was no one who came while he was sick. . When she got there, the counsellor, after he had passed away, I just felt, no, you have nothing to do with this at all, like . It would have been one thing if she had been present the whole time.”
Grief and anger The young adults experienced grief from the moment the parent was diagnosed with cancer. A sense of hopelessness arose even before they knew the prognosis: D: “. it was hopeless, so to speak .” Some of the young adults felt sorrow in advance, as anticipatory grief; they prepared for the worst, although they tried to be hopeful. After the death of the parent the young adults grieved that nothing could ever be as it had been before: A: “. God, I would like to call dad and talk to him about this, and I can’t .” At holidays such as Christmas and birthdays, the young adults again mourned the parent they had lost. They had to create new traditions, even though they did not actually want to, because the grief remained in each new stage of life. Some of the young adults expressed anger that their parents had not recovered as they had expected. This anger was expressed as a sense of defiance: F: “I don’t know. Somehow it felt like I was mad at him because he didn’t get better, and then I didn’t want to be with him either .” The young adults also felt anger and disappointment with peers who did not understand their situation. Closeness Feelings of closeness were related to time, relationships, understanding, and a physical closeness. This domain contained three categories: belief in the future, comfort and relief, and the importance of support. Belief in the future The young adults said that although the period of the parent’s illness and death had been difficult, they had fared quite well. They stated that there were no rules for how to grieve or feel, and explained that they had learned to “seize the day”. They were not afraid anymore, and their parents were no longer suffering. The young adults nevertheless experienced a feeling of closeness to their departed parent: A: “It makes you not as scared anymore, because it’s better to live as you do instead, and live as you want instead of worrying about such things . I’ve probably grown in a sense. It feels so good to know that he doesn’t need to suffer, and that he’s still with me. And that you do not regret anything. It is nice to feel his presence.” The young adults felt they had matured through their experiences. They also indicated that cancer was not a penalty; anyone could suffer the illness, and it was not necessarily going to happen to them again. Comfort and relief The young adults had gained a feeling of relief from being close to the ill parent and the rest of the family; this created a sense of security for themselves and for the whole family. This closeness also helped to create good memories of the time of illness, which were a positive thing to have after the parent had died. The young adults also gained security from participating in decisions concerning the care of the ill parent, and hence having some influence on those aspects of the future that were not fixed:
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
E: “Mother asked us, how do you, do you want them, for people to come here and help him with things, or do we want him to be in a hospice where we can also be there. No, I think it was pretty obvious to everyone that we wanted him home” All the young adults spoke about trying to live as normal a life as possible, even when the parent’s disease progressed and everything actually became less normal. When the changes in the ill parent became too obvious, the young adults sought relief in other people and environments. After the death of the parent, the young adults felt able to live a normal life again; to restart life with a new normality: E: “The funeral was tough because it brought everything up again. That was that. Now it’s mum, me and my little brother. Everything is quite normal.” Despite the changes in the ill parent’s body, some of the young adults asserted that their parent’s personality was the same as before. After the death finally occurred, they comforted themselves by remembering that although they had lost their parent, it could have been even worse, with even more suffering for the ill parent. The young adults spoke about perceptions of a presence reminiscent of the dead parent, about dreams, and about recognising their parent in a sibling. These sensations and experiences filled the young adults with a feeling of comfort and a feeling of not being abandoned: D: “I’ve seen him dead, so I know he is no more. But he comes to me in dreams sometimes and talks to me. I think this is nice, then it feels like he is there after all.” The young adults expressed that it felt good to remember the dead parent as a healthy person; the parent’s appearance, body language, voice, and the things they had experienced together. The young adults liked to talk and write about these memories. Stored memories such as photos, films, sound recordings, and letters were important because they were afraid of forgetting their parent’s appearance. The importance of support The young adults pointed out that the support of family and friends meant a lot during the parent’s illness and death. Their burden could be eased by having the opportunity to talk to someone who understood and shared their concerns, grief, and worries. Some of the young adults also described the support received from professionals such as counsellors, nurses, or the palliative care team: E: “.those who came to us [the palliative care team], they were like really good and very gentle and sweet, and cared about everybody.”
Discussion The young adults experienced a loneliness despite being with others, and this loneliness remained several years after their loss. They described this loneliness not primarily as a physical solitude, but as a deeper loneliness stemming from being alone in having these experiences, with no one else who could completely understand the situation. This result stands in contrast to a review by Visser et al., in which no study highlighted loneliness (2004). The young adults in the present study made their own choice to participate in our research. In previous studies, parents have either responded for their children or been involved in their children’s participation (Visser et al., 2005; Huizinga et al., 2003; Grant and
701
Compas, 1995). It is possible that feelings of loneliness did not emerge in previous studies because no one asked the children directly; parental involvement could have prevented the children from expressing these feelings. Children show solidarity with their parents, and in stressful situations parents may not have the ability to acknowledge their children’s feelings of loneliness. In the present study, however, we found that when the young adults talked freely the feeling of loneliness clearly emerged. The young adults’ inability to understand what was happening when their parent became ill was rooted in the fact that they and their parents had not received adequate information about the disease, its prognosis, and the feelings and reactions such an illness can cause. They therefore lacked the tools to understand and to cope. The young adults described how their grieving process began as soon as they learned about the diagnosis. Rini and Loriz (2007) have discussed how this anticipatory grief can have a positive effect on the perception of the process of illness, the journey towards death, and the grief that follows. This emphasises the need for truthful information and honest communication between parents and adolescents to reduce worry and anxiety. When everyone in the family is able to act openly, express their feelings, and manage to solve their problems, the result is a well-functioning family which is able to cope (Huizinga et al., 2003; Edwards and Clarke, 2004). This is underlined by legislation such as the Swedish Health and Medical Services Act, in which children, by law, are considered equal to adults in terms of their right to information (1982:763x2g). Only a few of our participants referred explicitly to anger, but implicit feelings of anger and disappointment were evident among most of the participants, revealed in gestures, body language, and tone of voice (cf. Lundman and Hällgren Graneheim, 2008). Cerney and Buskirk (1991) have emphasised that anger is a primitive reaction which can be a protection when a person is under threat, such as when a parent suffers a serious illness. It is therefore important that nurses and health care professionals help the adolescent children of cancer patients to understand the difference between being angry at the ill parent and being angry at the situation of the parent’s illness, thus unburdening the adolescents’ feelings of guilt. The young adults said that they coped well through the parental illness and death; this was a surprise for us, albeit a pleasant one. Despite the fact that something terrible had happened, the young adults were capable of looking forward. They understood that their experiences, which they would gladly have been spared, made them look differently at life. They had moved on in life, enriched with one more important experience. Mireault and Compas (1996) have described how young adults show less anxiety than adolescents when a parent becomes ill or dies. If the present study had been carried out when the young adults were still adolescents, perhaps they would have expressed more anxiety, indicating that information at that time in life is even more important. The young adults expressed several factors that provided solace and comfort, making it easier for them to cope with and get through the parent’s illness and death. They found major comfort in being with the ill parent and the other family members. They described how both the ill and the healthy parent tried to live as normally as possible despite the cancer. This, the young adults believed, was because the parents wanted to protect their children from anxiety, a result also described by Huizinga et al. (2003). However, Thaustum et al. (2008) have reported that when parents consider the situation retrospectively, they say that it would have been better to give the adolescents more detailed information and knowledge at an earlier stage of the disease, to prevent negative reactions. As the present study shows, early in the course of the disease the young adults found the best relief by being with the ill
702
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703
parent and family, but when the situation at home became too difficult for them they sought comfort with other people. Nolbris et al. (2010) have emphasised the importance of having someone else to talk to in this situation, preferably someone who has experienced the same thing. In the present study it became clear that the way the young adults had been treated during the course of the disease also affected how they narrated and felt after the parent’s death. Since five of the six parents had died of their disease, the stories contained the entire course of events from onset of illness to the death and the time beyond. This, according to Skott (2004), is the natural narrative structure; a story always has a beginning, a middle, and an end. It is therefore important that nurses and other health care professionals take the time to listen to the whole story, otherwise essential information can be lost and this can prevent the adolescents from getting help and support. The young adult whose parent had recovered from cancer differed from the other informants by trying to put it all behind her, and therefore did not have the same need of remembering and telling. Methodological considerations and recommendations for further research All students at the university had access to the website and the message boards where the invitation to participate in the study was posted. Despite this, and despite the fact that the advertisement lasted for 1.5 years the number of participants in the present study was low. The gender balance was uneven, five women and one man. Many other studies also have a majority of female participants (Compas et al., 1996; Grant and Compas, 1995; Heiney et al., 1997; Nelson and While, 2002; Visser et al., 2005; Welch et al., 1996; Wong et al., 2006). Considering the uneven gender balance, Davey et al. (2005) found that women and girls are more likely to talk about and share their feelings with others while men and boys are more inclined to solve their problems by using more active problem-focused strategies. The low number of participants recruited to this study and the preponderance of females could to some degree be due to the design. It is possible that advertisements in newspapers might have attracted a larger number of participants with a better gender balance. The outcome of the parental illness differed; five parents died, and one recovered. The young adults’ stories were rich and deep, giving plentiful material to analyse. Despite the low number of participants, the uneven gender balance, and different outcome of the parents’ disease, this study showed similarities with larger studies (Compas et al., 1996; Edwards and Clarke, 2004; Grant and Compas, 1995; Nelson et al., 1994; Wong et al., 2006). The fact that five out of six young adults who wanted to participate in the study had parents who had died of their disease may also have affected the results. In order to investigate differences in adolescents’ experiences, it would have been desirable to have a more even gender balance and to divide the result by whether the parent had fully recovered, was still ill, or had died. We chose to conduct the interviews after the adolescents had reached adulthood, because children are not allowed to independently make the decision to participate, and the parents’ attitude may affect the narrative. Adolescence is a fragile and unstable period in life; a young person at this stage has not yet found their adult self, and alternates between being a child and being an adult (Erikson, 1997). It is therefore important for health care professionals to support dialogue between parents and adolescents, to help them talk about the disease and the family’s experience. One way to support such a dialogue is to motivate the parents to allow the children in the family, together with their parents, to receive information from health care professionals.
Conclusions and recommendations for practice The young adults were willing to narrate about their experiences. They expressed a lack of support during the parent’s illness, and spoke about a distance that turned into a loneliness they had never experienced before. They lacked the tools to understand the situation, and they felt grief and anger over what the cancer had caused. Nevertheless, via a sense of closeness they had managed to regain belief in the future. They found comfort and relief in the thought that this would not necessarily happen to them again, and gained support by talking to family and friends. An undertone of loneliness pervaded everything they said, even when speaking about positive aspects. When nurses and other health care professionals meet an adult diagnosed with a serious illness, they should first find out if the patient is permanently living with children (0e18 years). It is important to include these children and adolescents as family members, and ensure that they are provided with information. Written guidelines facilitate this difficult task. Nurses and other health care professionals should offer to inform the children along with their parents. The young adults in our study would have liked to have had accurate information from health care professionals during their parents’ illness, and the United Nations Convention on the Rights of the Child gives children and adolescents this right (UNICEF, 2013-03-01). Information could be provided by nurses or other health care professionals. The guidelines should also advise that early in the parent’s disease, a personal contact should be created with a nurse or counsellor providing psychosocial support in outpatient health care. This contact should be maintained throughout the whole period of illness. Relationships and trust can be created by repeated short informal contacts between health care professionals and adolescents, using the internet, text messages, and other means of communication that are natural for young people. This can be helpful if the worst happens and the parent dies. Conflict of interest The authors have no conflicts of interest to declare inherent to the submission of this manuscript. Acknowledgements We are humbly grateful to the young adults who shared their stories. We also thank Ingela Berggren for valuable comments and advice. This research was partly funded by the Research and Development Unit, NU-Hospital Organisation, Trollhättan/Uddevalla, Sweden. References Birenbaum, L.K., Yancey, D.Z., Phillips, D.C., Chand, N., Huster, G., 1999. School-age children’s and adolescents’ adjustment when a parent has cancer. Oncology Nursing Forum 26 (10), 1639e1645. Cerney, M.S., Buskirk, J.R., 1991. Anger: the hidden part of grief. Bulletin of the Menninger Clinic 55 (2), 228e237. Christ, G.H., Siegel, K., Sperber, D., 1994. Impact of parental terminal cancer on adolescents. American Orthopsychiatric Association 64 (4), 604e613. 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), 167e175. Davey, M., Gulish, L., Askew, J., Godette, K., Childs, N., 2005. Adolescents coping with mom’s breast cancer: developing family intervention programs. Journal of Marital Family Therapy 31 (2), 247e258. Edwards, B., Clarke, V., 2004. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psycho-Oncology 13, 562e576. Erikson, E.H., 1997. The Life Cycle Completed. W.W. Norton & Company Inc., New York.
E. Karlsson et al. / European Journal of Oncology Nursing 17 (2013) 697e703 Estabrooks, C.A., Field, P.A., Morse, J.M., 1994. Pearls, pith and provocation. Aggregating qualitative findings: an approach to theory development. Qualitative Health Research 4 (4), 503e511. Graneheim, U.H., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24 (2), 105e112. Grant, K.E., Compas, B.E., 1995. Stress and anxious-depressed symptoms among adolescents: searching for mechanisms of risk. Journal of Consulting and Clinical Psychology 63 (6), 1015e1021. Heiney, S.P., Bryant, L.H., Walker, S., Parrish, R.S., Provenzano, F.J., Kelly, K.E., 1997. Impact of parental anxiety on child emotional adjustment when a parent has cancer. Oncology Nursing Forum 24 (4), 655e661. Howes, M.J., Hoke, L., Winterbottom, M., Delafield, D., 1994. Psychosocial effects of breast-cancer on the patient’s children. Journal of Psychosocial Oncology 12 (4), 1e21. Huizinga, G.A., Van der Graaf, W.T.A., Visser, A., Dijkstra, J.S., HoekstraWeebers, J.E.H.M., 2003. Psychosocial consequences for children of a parent with cancer. A pilot study. Cancer Nursing 26 (3), 195e202. Huizinga, G.A., Visser, A., Van der Graaf, W.T.A., Hoekstra, H.J., Stewart, R.E., Hoekstra-Weebers, J.E.H.M., 2011. Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer. PsychoOncology 20, 730e737. Krippendorff, K., 2004. Measuring the reliability of qualitative text analysis data. Quality & Quantity 38, 787e800. Lundman, B., Hällgren Graneheim, U., 2008. Kvalitativ innehållsanalys. In: Granskär, M., Höglund-Nielsen, B. (Eds.), Tillämpad Kvalitativ Forskning Inom Hälso-och Sjukvård. [Qualitative Content Analysis. In: Granskär, M. Höglund-Nielsen, B. (Eds.), Applied qualitative research in health care. Studentlitteratur, Lund, pp. 159e172. Mireault, G.C., Compas, B.E., 1996. A prospective study of coping and adjustment before and after a parent’s death from cancer. Journal of Psychosocial Oncology 14 (4), 1e18. Mishler, E.G., 1986. Research Interviewing Context and Narrative. Harvard University, London. Morse, J.M., 1994. Qualitative research: fact or fantasy? In: Morse, J.M. (Ed.), Critical Issues in Qualitative Research Methods. Sage Publication, Thousand Oaks, pp. 1e7. National Board of Health and Welfare, 2010. Sweden. http://www.socialstyrelsen. se/statistik/statistikdatabas/cancer (2013.10.02). Nelson, E., Sloper, P., Charlton, A., While, D., 1994. Children who have a parent with cancer: pilot study. Journal of Cancer Education 9, 30e36. Nelson, E., While, D., 2002. Children’s adjustment during the first year of a parent’s cancer diagnosis. Journal of Psychosocial Oncology 20 (1), 15e36.
703
Nolbris, M., Abrahamsson, J., Hellström, A.-L., Olofsson, L., Enskär, K., 2010. The experience of therapeutic support groups by siblings of children with cancer. Pediatric Nursing 36 (6), 298e304. Polit, D.F., Beck, C.T., 2008. Nursing Research: Generating and Assessing Evidence for Nursing Practice, eighth ed. Wolters Kluwer/Lippingcott Williams & Wilkins, Philadelphia. Rini, A., Loriz, L., 2007. Anticipatory mourning in parents with a child who dies while hospitalized. Journal of Pediatric Nursing 22 (4), 272e282. Rose, K., Webb, C., 1998. Analyzing data: maintaining rigor in a qualitative study. Qualitative Health Research 8 (4), 556e562. Sandelowski, M., 2011. When a cigar is not just a cigar: alternative takes on data and data analysis. Research in Nursing and Health 34, 342e352. Sheehan, D.K., Draucker, C.B., 2011. Interaction patterns between parents with advanced cancer and their adolescent children. Psycho-Oncology 20 (10), 1108e1115. Skott, C., 2004. Introduktion: Berättelsens betydelse, In: Skott, C. (Eds.), Berättelsens Praktik Och Teori-narrativ Forskning I Ett Hermeneutiskt Perspektiv. [Introduction: Narrative significance]. In: Skott, C. (Eds.), The narrative in theory and practice e narrative research in a hermeneutic perspective. Studentlitteratur Lund. p. 9. Swedish Health and Medical Services Act, 1982:763x2g, 2013.03.01 http://www. riksdagen.se/sv/. Thaustum, M., Birkelund Johansen, M., Gubba, L., Berg Olesen, L., Romer, G., 2008. Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer. Clinical Child Psychology and Psychiatry 13 (1), 123e138. UNICEF, 2013 03 01. United Nations Convention on the Rights of the Child. http:// www.unicef.org/crc/. Visser, A., Huizinga, G.A., Hoekstra, H.J., Van der Graaf, W.T.A., Klip, E.C., Pras, E., et al., 2005. Emotional and behavioural functioning of children of a parent diagnosed with cancer: a cross-informant perspective. Psycho-Oncology 14, 746e758. Visser, A., Huizinga, G.A., Van der Graaf, W.T.A., Hoekstra, H.J., HoekstraWeebers, J.E.H.M., 2004. The impact of parental cancer on children and the family: a review of the literature. Cancer Treatment Reviews 30, 683e694. Welch, A.S., Wadsworth, M.E., Compas, B.E., 1996. Adjustment of children and adolescents to parental cancer. American Cancer Society 77 (7), 1409e1418. WMA, 2008. Declaration of Helsinki e Ethical Principles for Medical Research Involving Human Subjects, 2012.11.16 http://www.wma.net/en/30publications/ 10policies/b3/. Wong, M., Looney, E., Michaels, J., Palesh, O., Koopman, C., 2006. A preliminary study of peritraumatic dissociation, social support, and coping in relation to posttraumatic stress symptoms for a parent’s cancer. Psycho-Oncology 15, 1093e1098.
