Copyright B 2016 Wolters Kluwer Health, Inc. All rights reserved.
Nicole Landry-Datte´e, MPsy Diane Boinon, PhD Gaelle Roig, MPsy Alain Bouregba, MPsy Marie-France Delaigue-Cosset, MD Sarah Dauchy, MD
Telling the TruthIWith Kindness Retrospective Evaluation of 12 Years of Activity of a Support Group for Children and Their Parents With Cancer
K E Y
W O R D S
Background: Cancer in a parent can have harmful effects on a child’s ability to
Children
cope with the situation, in particular if communication about the disease is limited.
Communication
Objective: The aim was to evaluate whether the parent-child group run by a
Parental cancer
psychoanalyst and a doctor at the hospital helps facilitate communication about the
Support group
disease with a child and helps to sooth the child and his/her symptoms. Methods: This qualitative retrospective study conducted among 61 families (71 adults, 19 children) using semidirected interviews made it possible to identify the expectations and benefits perceived by the parents and children. Results: The main expectations of the parents were to meet professionals who would help them to speak about the disease and to help the children understand it better in order to reduce their symptoms. The parents’ expectations were largely satisfied. As far as the children are concerned, they expressed more benefits (better understanding of the disease, reduction of symptoms, meeting similar others) than expectations. Conclusions: The group is a resource that helps both parents and children. Meeting similar others made it possible to justify each participant’s own experiences and promote better communication during the continued course of the disease. Implications for Practice: The benefits brought about by this group testify to the need to offer such support to a greater number of parents with cancer. Improvements to the way in which the group is organized are discussed.
Author Affiliations: Unite´ de Psycho-Oncologie, De´partement de Soins de Support, Gustave Roussy, Villejuif (Ms Landry-Datte´e and Drs Boinon and Dauchy); Service de Pneumologie, HHpital Beaujon, Clichy (Ms Roig); Ligue Nationale Contre le Cancer, Paris (Mr Bouregba); and De´partement des Blocs, Gustave Roussy, Villejuif (Dr Delaigue-Cosset), France. This research was funded by Sanofi-Aventis, France.
The authors have no conflicts of interest to disclose. Correspondence: Nicole Landry-Datte´e, MPsych, Unite´ de Psycho-Oncologie, De´partement de Soins de Support, Gustave Roussy, 114 Rue Edouard Vaillant F-94805, Villejuif, France ([email protected]). Accepted for publication February 16, 2015. DOI: 10.1097/NCC.0000000000000262
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Landry-Datte´e et al
A
ccording to the Institut National du Cancer, of the 365 000 registered cases of cancer in France in 2011, 10.3% (all cancers taken together) had been diagnosed in patients aged between 15 and 49 years.1 Such patients may well already have children or may conceive during a period of remission, which, unfortunately, can sometimes be followed by a relapse. Whatever the age of these children and the family circumstances of their parents, they will be confronted sooner or later by the disease and may potentially be affected by it. Even though many authors have examined the experiences of children of parents with cancer, relatively few data are available concerning the frequency of these situations, in particular because of methodological and ethical obstacles. Despite this, there is a consensus concerning the harmful effects that the presence of a serious and potentially mortal illness in the parent can have on children’s development: sadness, anxiety, mood disorders, adaptive disorders, problems of concentration and difficulties at school, disrupted sleep and eating disorders, and psychosomatic disorders have all been described.2Y8 The frequency of negative emotions has also been emphasized: loss of self-esteem, incomprehension, anger, fear in the face of uncertainty regarding the outcome of the disease, fear of death, and feeling insecure.2,6,9 Neither the objective characteristics of the illness (stage of the cancer, period of development since diagnosis), the age of the ill parent, nor the age of the child seems to be factor that determines the suffering experienced by the child.10 However, behavioral disorders (aggression) seem to be greater in children whose mother is ill.10Y12 Anxiety-related disorders have also been found to be reported more frequently when it is the mother who evaluates the children’s distress (measured using the Child Behavior Checklist) rather than the father.10 Other factors seem to be associated with the difficulties experienced by these children, such as the quality of intrafamily communication about the cancer. The results of this communication appear contradictory. Many studies have shown that more open communication is associated with better adaptation on the part of children, whereas poor-quality communication is linked to greater signs of distress and difficulties in adaptation.3,5Y7,12Y15 By contrast, certain studies have failed to find any link between family communication and the functioning of the child16 or have even reported increased distress in the child (evaluated by the parents) when intrafamily communication regarding cancer is more open.10 According to the authors, these latter results should be viewed in the light of the aspects evaluated by the questionnaire used in this study (the Openness to Discuss Cancer in the Nuclear Family), namely, the emotional abilities of the 2 parents to communicate in the family context. Within this perspective, when parents express their emotions more openly, this may cause greater anxiety in their children.10 According to the authors, it is therefore important to distinguish between the effects associated with intrafamily communication about cancer (children who are not supposed to see everything, hear everything, and share everything with their parents) and the effects of the information children have about the specific disease from which their parent is suffering. In this field, many studies nevertheless agree on the difficulties experienced by parents when communicating with their
Telling the Truth With Kindness
children about the disease. The way parents communicate about cancer is limited in particular by their desire to protect their children from negative emotions such as fear or anger3,6,17 as well as by their fear of not being able to control their own emotions.11 Some parents are not able to give the disease its name and say the word cancer.13 By avoiding their children’s questions about cancer and death and thinking of their children as too young to understand, some parents may come to hide information,18 even though the children themselves state the importance of being informed about the disease and its treatment and of knowing the truth.13,17 In particular, this information allows them not to feel responsible for the situation and the disease and to reduce potential feelings of guilt. When children are kept at arm’s length from their parent’s experience of the disease, this can, in the longer term, generate a feeling of distrust of the parent and medical practitioners.18 Data from the literature confirm our clinical experience gained as psychotherapists in a cancer center where we regularly witness parents’ reticence to communicate with their children about cancer. When we meet them, parents express their deep concern not only about themselves and their future, but also about their children to whom they find it difficult to explain what has happened to them. Situations of advanced illness in which the children are not or are only poorly informed are frequent and a source of great distress to the patients, their children, and the team of carers. The child’s discovery of the parents’ lies and/or concealment aggravates the situation because it threatens the child’s trust in his/her parents and thereby risks impairing children’s development, which is deeply rooted in this trust, and increasing their anxiety. When healthcare providers support parents in their parental role to inform and communicate with their children regarding cancer, they may simultaneously help parents to decrease their distress and also help the children themselves.10,15 Parents ask for the assistance of professionals in speaking to their children and emphasize the need to arrange meetings with them for precisely this purpose.3,5,7,15,17Y19 A number of programs have thus been set up and evaluated, most of which were for children of women with breast cancer and intended either for parents on their own3,17 or children on their own gathered together in appropriate age groups (primary school children/adolescents)5,17,20 or as a function of the advancement of the disease.19 These programs are primarily educational, using methods such as drawing, music, puppets, and games. Although research shows the effectiveness of such psychological support programs in improving mood disorders and quality of life and reducing adaptive difficulties and cancer-related stress,20 few have been the object of comparative studies.7 Since 1994, Gustave Roussy cancer center has conducted support groups for ill parents with nonadult children, irrespective of the stage of the disease and the type of cancer,21Y23 to help the parents start or renew a dialog with their children concerning the disease or even death. Children attend with their parents and constitute the focal point of the group, which concentrates on their questions, their experience, or their emotions. Although the group has been designed for children aged 4 to 18 years, the presence of all the siblings is recommended if possible even if Cancer NursingTM, Vol. 39, No. 2, 2016
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their ages are above or below this range. The sessions are cofacilitated by a doctor-child psychotherapist pair. This group’s frame of reference is psychoanalytical. The group is closed to new members, meets in the same room for sessions lasting approximately 2 hours, and consists of 2 sessions separated by a 2-week interval. The participants are arranged in a semicircle with the children at the front, the parents behind them, and with the facilitators closing the circle. This arrangement allows the various participants to avoid looking at or being looked at by the others who are present in this analytical configuration. We have chosen not to use drawings or games but instead to leave space for speech and to stimulate thought by moving from emotion to representation. The session starts with the projection of a short, 15-minute film You Must Talk-to-Know produced by the 2 cotherapists on the basis of their clinical experience with children. This film addresses the topics of cancer, the main treatments, and the possibility of death. It also addresses sadness, guilt, impotence, and the fear of separation. After the film, there is a discussion period of an hour, followed by a purposeful movement to a different room for a snack that emphasizes the movement away from a situation laden with emotion. At the end of the second meeting, each family receives a small book24 written as a communication aid to help the parents and children continue their discussions. Our purpose here is to provide a 12-year retrospective review of this group approach.
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Aim of the Study
Using a qualitative approach, we sought to qualitatively evaluate the way in which the group responded to the various expectations of the parents (both for themselves and for their children) as well as to the expectations of the children themselves. The secondary aims were to assess the impact of participation in the group on intrafamily communication about cancer and on the children’s symptoms and the distress perceived and expressed by them.
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Methods
Procedure The approach involved semidirected interviews by a psychologist specifically recruited for the study and not involved in the clinical care of either the parents or their children. A funding grant for a 2-year evaluative study was obtained in 2008. Between 2008 and 2010, we interviewed available families who had participated in the group between 1995 and 2007. The 328 families, including 644 children who participated, were identified, and a letter explaining the study was sent to the ill parent if he/she was still alive or, if not, to the surviving partner. The parent was invited to take part in a telephone interview and to invite the children who had taken part in the group to participate as well. This letter was accompanied by a response coupon
to be returned to the hospital by the participants along with their signed consent in a prepaid envelope indicating their agreement to participate in the telephone interview with a psychologist engaged for the study who was external to the hospital. If children who were still minors participated, their parents’ agreement also had to be provided. All the interviews were recorded with the participants’ consent and were rendered anonymous before being transcribed. The study was approved by the ethics committee of the Ligue Nationale Contre le Cancer.
Tools A pilot phase was conducted in order to test the interview matrix constructed for the responses to the research questions. This was based on the use of a semidirected interview (in which the majority of the questions were open) administered to 20 parents. The interview matrix covered the following 7 subject areas: (1) reasons for taking part in the research, (2) expectations regarding the group and perceived benefits for the parent and child, (3) impact of the disease on the functioning of the family and effect of the group on this impact, (4) effect of the group on communications about the disease, (5) consultation(s) with a mental healthcare professional for the child and for the parent, (6) long-term benefits in coping with the disease progression, and (7) encourage the widespread implementation of the program. The conduct of these preliminary interviews confirmed the relevance and coherence of the interview instructions in terms of the object and aims of the research. Only a few adjustments were made in order to improve the understanding of the questions and facilitate the exchange through the use of prompts and reformulations. Supplementary open questions were added to the initial interview instructions, including the way the patient found out about of the existence of the group, presentation of the group to the child, level of information possessed by the children about the disease before coming to the group, and the habitual mode of communication in the family before participation. At the end of the interview, the parents were asked if they had invited their children to take part in this study and the reasons for their decision (Appendix 1). This interview matrix was adapted depending on the interviewee (parent or child). It was also simplified for use with children aged 7 to 11 years (Appendix 2). A thematic analysis, which followed Bardin’s25 recommendations, was completed by 2 investigators (N.L.-D. and M.-F.D.-C.). The in-depth reading of the first 20 interviews allowed to identify the main categories linked to our research questions. A coding guideline including the recurrent categories was built. A category is defined as a subject or motif that is sufficiently characterized in a person’s speech for the researcher to be able to recognize it as having a broad-based and stable meaning. We identified in each interview the presence or the absence of a category, whatever it appeared directly after the question asked by the researcher or at a deferred time during the interview. When the 2 investigators disagree about the coding, discussions were opened to favor the interrater agreement. We used frequencies in each category and identified link with the expectations and the benefits in relation to the group.
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Table 1 & Expectations and Benefits for Themselves
Results
According to the Parents (n = 71)
Participants Of the 328 families contacted, 73 letters were returned to the hospital undelivered (22.3% of families lost to follow-up). Of the 255 families asked to participate, 61 agreed and responded to the interview (23.9%). We chose not to recontact the families who chose not to participate in order to find out the reasons for their refusal. The study sample therefore consisted of 71 parents (52 mothers, 35 of whom were ill and 17 who were well; 19 fathers, 5 of whom were ill and 14 who were well) and 19 children (14 boys aged between 7 and 25 years [mean age, 14.7 years], 5 girls aged between 10 and 25 years [mean age, 17.6 years]). At the time at which they participated in the group, the children who took part in the research were aged between 5 and 23 years (mean, 11.03 [SD, 4.6] years). The mean period between participation in the group and the research interview was 59.4 (SD, 43) months, with the shortest interval being 8 months and the greatest interval 147 months.
Group Participation Effects The evaluation of the effect of participating in the group on intrafamily communication about the disease showed that 54% of the parents and 57% of the children considered that their participation in the group had facilitated this communication by helping them reduce the difficulties involved in speaking about the disease. Furthermore, 45% of the parents thought that participation in the group had helped their children to adapt better during the subsequent course of the disease (reduction of distress and evident symptoms, reduced feeling of solitude), and this figure increased to 67% when the children were questioned directly. Most of the parents (89%) said they would recommend the group to families in which 1 of the parents has cancer, and 93% thought it desirable to replicate this group program in its present form in other hospitals (‘‘I hope that this research will make it possible to develop discussion groups for the children of ill parents’’). When asked about the setting, they primarily referred to the empathy of the therapists, the feeling of safety, the words used, and the snack. This latter aspect was systematically mentioned by the children (‘‘There was a great snack, it was really friendly’’; ‘‘The doctor served the croissants, we all sat down together. It was really nice’’; ‘‘The snack showed the hospital in a different light, as a living space where there is room for children’’). The parents’ own expectations of the group and the perceived benefits for themselves (Table 1) were mostly positive: to be helped to speak about the disease with their child, to understand the disease, express their experience, meet people in a similar situation (ie, other ill adults or their partners), to search for hope and reassurance, and to receive support from an independent professional in order to communicate better. Some of the parents (25%) said that they had no specific expectations. None of the parents interviewed feared a negative impact. The 2 fields in which expectations were highest were support in being able to speak about the disease, mentioned by 45% of the parents (‘‘I couldn’t tell him, it was an opportunity for someone else to speak in my place’’; ‘‘My
Telling the Truth With Kindness
Categories Finding the right words Understanding Expressing oneself Meeting similar others Search for hope Reduction in symptoms Getting to know the hospital Idea of a ‘‘third party’’ No expectation or benefit expressed Increase in symptoms
Expectations, n (%)
Benefits, n (%)
32 (45) 4 (6) 0 (0) 9 (13) 1 (1) 8 (11) 0 (0) 34 (48) 18 (25)
29 (41) 7 (10) 10 (14) 28 (39) 10 (14) 30 (42) 2 (3) 35 (49) 14 (20)
0 (0)
3 (4)
words just weren’t enough’’), and the opportunity to meet professionals who were qualified to help them find ways to speak about the disease, mentioned by 48% of parents (‘‘It was so overwhelming and impossible to talk about that I had to get help from outside’’; ‘‘I thought that specialists would find the right words’’; ‘‘The doctor said something very complicated using very simple words’’; ‘‘When they were said by the doctor, the words didn’t seem so awful’’; ‘‘The meeting had a serious feel because a psychologist and a doctor were there’’). Perceived benefits were frequently mentioned in these 2 areas (‘‘It helped us to find the words to talk about the disease’’; ‘‘Communication in the family loosened up again’’; ‘‘What it gave us was freedom in the way we talked and the reassurance that this brings’’), as well as in 2 fields in which the patients nevertheless mentioned few expectations for themselves: meeting similar others for 39% of the parents (‘‘We found out that it’s the same for everyone, it’s not just us that’s the problem, it’s human nature’’; ‘‘We’re all in the same boat’’; ‘‘To experience it as a group, that had something reassuring, calming about it’’) and reducing their own symptoms of distress and sadness in 42% of cases (‘‘I was able to let off steam’’; ‘‘It was very intense at the emotional level, but at the same time, it was soothing to cry’’; ‘‘It did me good because it was the first time I had cried’’). Finally, 4% of the parents described an increase in distress. However, this response was never exclusive and was therefore associated with a positive impact (Table 1). The parents reported expecting participation in the group to enable their children to speak more freely about the disease and to receive the support of a third-party (‘‘A lock that’s been opened’’; ‘‘Doors that have been forced open’’; ‘‘A curtain that’s been lifted’’). In this case, meeting someone in a similar situation (‘‘I didn’t want him to feel alone, as if his father was the only person this had happened to in the world’’) and reducing the symptoms of distress in the child were perceived as benefits and as benefits that had been expected by the parents (‘‘She spoke about death and after that she didn’t have any more nightmares’’). Finding out about the hospital in which the parent was being treated did not feature among the expectations but still tended to be perceived as a benefit (‘‘To be able to identify with the hospital’’; ‘‘To have a genuine idea of the place, to be able to picture the place and the people who look after me’’; ‘‘It brought Cancer NursingTM, Vol. 39, No. 2, 2016
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peace of mind and comfort’’). Some of the parents (49%) hoped that a better understanding of the disease would help reduce the symptoms in their children (nightmares, bed wetting, withdrawal, aggression); 46% of them thought that participation in the group had helped reduce these symptoms. Finally, 17% of the parents said that they had not noticed that the group had any impact on their child. An increase in distress symptoms was reported by only 1% of parents (Table 2). Of the children, 32% expected to gain a better understanding of their parent’s disease (‘‘She wasn’t able to tell us, but we could feel it, we worried about it; we asked ourselves lots of questions, we imagined lots of things, and we needed to know’’), and nearly 58% said they had felt this benefit (‘‘It made it possible for parents and children to talk’’). Even though only 26% of the children expected the group to reduce their symptoms, this benefit was perceived by 63% of them. Forty-seven percent stressed the benefit of meeting other children who had to cope with having an ill parent (‘‘I was happy to find out that I was not the only person to experience that. My friends’ mums, they didn’t have that.’’; ‘‘You feel like you’re the only one in the world, and then you see that you’re not the only one who’s suffering’’; ‘‘I was able to see that everything I was feeling was justified’’; ‘‘It helps you accept your feelings’’), even though only 16% said they had such an expectation (Table 3).
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Discussion
The results of this qualitative study address the ways both parents and children experienced their participation in the group. Reported benefits support the positive outcomes of communication on the part of adults about cancer with their children.26Y30 The expectations expressed by the parents in this study for both themselves and their children indicate that they correctly understood the objectives of the group. The importance of the third-party role played by the therapists in the group is that they help parents to speak rather than speaking in their place and in this way help them recover or maintain their function as parents. Potentially fatal diseases can increase distress and depression and restrict the possibility of expressing a truth that is too difficult to share with one’s children. The difficultly parents feel in commu-
Table 2 & Expectations and Benefits for the Child According to the Parents (n = 71)
Categories Finding the right words Understanding Expressing oneself Meeting similar others Search for hope Reduction in symptoms Getting to know the hospital No expectation or benefit expressed Increase in symptoms Don’t know
Expectations, n (%)
Benefits, n (%)
28 (39) 29 (41) 16 (23) 26 (37) 0 (0) 35 (49) 3 (4) 4 (6) 0 (0) 0 (0)
22 (31) 27 (38) 21 (30) 37 (52) 2 (3) 33 (46) 15 (21) 12 (17) 1 (1) 1 (1)
Table 3 & Expectations and Benefits for Themselves According to the Children (n = 19)
Categories Finding the right words Understanding Expressing oneself Meeting similar others Search for hope Reduction in symptoms Getting to know the hospital Expectation or benefit for the parent No expectation or benefit expressed Increase in symptoms Don’t remember
Expectations, n (%) 3 6 0 3 0 5 0 4 6
(16) (32) (0) (16) (0) (26) (0) (21) (32)
0 (0) 0 (0)
Benefits, n (%) 5 11 6 9 2 12 5 1 1
(26) (58) (32) (47) (11) (63) (26) (5) (5)
1 (5) 1 (5)
nicating with their children about cancer may be linked to the difficulty for the parents to think about their cancer and consequently to speak about it. Not addressing it risks children imagining scenarios that are often much more frightening than the reality. Not addressing cancer can have harmful effects for the mental functioning of the child, as Tisseron31 has explained. These effects may take the form of a loss of confidence by the child in his/her parents as well as a loss of self-confidence and may threaten the permanence of a relationship that is essential if children are to construct their own identities, as observations of the mother-baby relationship and concepts of attachment and imprinting have shown.32Y34 Counting on trust and support from reliable, predictable adults is indispensable if children are to construct a fundamental basis of security on which they can rely throughout their lives.29 Our study findings indicate that the problem of the child’s symptoms seems to be of central importance for the parents who see it as an expression of the child’s suffering. By contrast, it seems to be of secondary importance to the children who do not necessarily make the connection between their suffering and their symptoms. The results of our study show that, according to the parents available to report, this expectation of a reduction in the child’s symptoms was satisfied, whereas the children came to notice it only after participating in the group given that it was not prominent among their expectations. Nevertheless, the children mentioned this benefit more often than their parents did. In light of these results, we conclude that most expectations were satisfied (being able to communicate, reducing symptoms), and thus, the group achieved its aims. Parents and children gained an additional benefit from meeting other people who were experiencing the same situation. This benefit seemed particularly valuable to the parents, discovering that they were not alone. Children were able to ask difficult questions and learned that such questions are not wrong to ask. The group also allowed the parents to recognize that their children think about death. To see one’s self in other people’s words and to be able to identify with others can be calming within the safe environment of a reassuring group.35 That is why we chose to follow the free association of ideas from participants. Very often, the discussion started with factual questions by the
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youngest children about the disease and how to treat it. Before hearing the answer, they were always asked to explain how they imagined it. The discussions make it possible to ‘‘normalize’’ the experience of each of the participants and reassure them that there is nothing wrong with experiencing the disease as a burden. These relatively encouraging results are consistent with Rimbault’s36 observations as well as those reported by child psychotherapists: ‘‘It is necessary to help and support the parents in order to help and support the children.’’ What is more, the majority of the parents who took part in our study said they would recommend the group to families in which one of the parents had cancer. It is important for healthcare providers to help and strengthen ill parents in reasserting their parental image. Many feel inadequate and guilty for imposing such a burden on their children. To encourage them to communicate with their children is to give them the resources necessary to establish and maintain the trust that is essential if their children are to structure their identities. It is also to help prevent the children from being submerged by the distress caused by an imagined situation. n
Limitations
ACKNOWLEDGMENT
The authors thank the study participants for their time and effort.
References
One of the main limitations of our study lies in its retrospective nature, with our evaluation being based on the participants’ memories and reconstruction of past feelings and events. Some of the parents and children responded more than 10 years after participating in the group. Ultimately, what we evaluate here is less the impact of the group in the narrow sense and more the memory of participating in the group and the place that the adults and children accord this in their memory of the patient’s healthcare trajectory. There was a risk that the memory of the group would be laden with negative emotions. In this context, the fact that this retrospective evaluation was positive is a valuable finding. The presence of a social desirability bias in the collected data is also possible because the parents were personally invited to take part in a telephone interview and were told that their anonymity would be guaranteed in the interview transcriptions. It is possible that the participants responded positively out of a feeling of gratitude toward the hospital. To limit this bias to the greatest possible extent, participants were told that the interviewer came from outside the hospital. Another limitation of our study lies in the small size of the child sample, with only a small number of children responding compared with the number who had participated in the group during the 12 years covered by the study. For the youngest of these, a telephone interview might have been a difficult prospect, and a face-to-face meeting would probably have been more appropriate. By contrast, those who had participated a long time in the past had grown up, and some of the parents did not inform them of our invitation in order to avoid, as they said, reawakening painful memories. n
regions in France. It has also given rise to national and international training programs on this issue. Certain modifications are being considered, for example, reserving a short period for the children alone during the second session. The question of the value of an additional session, which some of the parents cited as desirable during the interview, might also be a subject for further consideration. A prospective study is still required in order to provide data acquired during the time course of the disease and the period following it rather than data based on memories remolded by time. The difficulty of such a study is that it should ideally include a period devoted to the evaluation of intrafamily communications before participation in the groupVsomething that would be problematic at the methodological, ethical, and practical levels.
Conclusion
The results of this study provide support for the attempts to offer this type of group, which is now provided in 4 district
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1. INCA. La situation du cancer en France en 2012 [Cancer in France in 2012]. http://www.e-cancer.fr. Accessed Retrieved October 17, 2013. 2. Compas BE, Worsham NL, Ey S, Howell DC. When mom or dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients. Health Psychol. 1996;15(3):167Y173. 3. Hoke LA. A short-term psychoeducational intervention for families with parental cancer. Harv Rev Psychiatry. 1997;5(2):99Y103. 4. Edwards B, Clarke V. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psychooncology. 2004;13(8):562Y576. 5. Kristjanson LJ, Chalmers KI, et al. Information and support needs of adolescent children of women with breast cancer. Oncol Nurs Forum. 2004; 31(1):111Y119. 6. Visser A, Huizinga GA, et al. The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev. 2004;30(8): 683Y694. 7. Su YH, Ryan-Wenger NA. Children’s adjustment to parental cancer: a theoretical model development. Cancer Nurs. 2007;30(5):362Y381; quiz 363Y382. 8. Korneich D, Mannheim H, Axelrod D. How children live with parental cancer. Prim Psychiatry. 2008:64Y70. 9. Giesbers J, Verdonck-de Leeuw IM, van Zuuren FJ, et al. Coping with parental cancer: Web-based peer support in children. Psychooncology. 2010; 19(8):887Y892. 10. Paradis M, Consoli SM, et al. Influence of the communication about one parent’s cancer on children’s suffering. Rev Med Interne. 2008;29(12): 986Y993. 11. Thorne S. The family cancer experience. Cancer Nurs. 1985;8(5):285Y291. 12. Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psychooncology. 2007;16(2):101Y126. 13. Thastum M, Johansen MB, Gubba L, et al. Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer.Clin Child Psychol Psychiatr. 2008;13(1):123Y138. 14. Gazendam-Donofri SM, Hoekstra H, van der Graaf W, et al. Parent-child communication patterns during the first year after a parent’s cancer diagnosis: the effect on parents’ functioning. Cancer. 2009;115(18):4227Y4237. 15. Huizinga GA, Visser A, et al. The quality of communication between parents and adolescent children in the case of parental cancer. Ann Oncol. 2005;16(12):1956Y1961. 16. Nelson E, While D. Children’s adjustment during the first year of a parent’s cancer diagnosis. J Psychosoc Oncol. 2002;20,(1):15Y36. 17. Greening K. Support groups for children of patients with cancer. Cancer Pract. 1999;7(4):208Y211.
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18. Barnes J, Kroll J, et al. Factors predicting communication about the diagnosis of maternal breast cancer to children. J Psychosom Res. 2002; 52(4):209Y214. 19. Kari E, Helseth S, Darbyshire P. Chidren’s experiences of participation in a family support program when their parent has incurable cancer. Cancer Nurs. 2008;31(6):426Y434. 20. Taylor-Brown J, Acheson A, Farber JM. Kids can cope: a group intervention for children whose parents have Cancer. J Psychosoc Oncol. 1993;11(1):41Y52. 21. Landry-Dattee N, Gauvain-Piquard A, et al. A support group for children with one parent with cancer: report on 4 year experience of a talking group. Bull Cancer. 2000;87(4):355Y362. 22. Landry-Datte´e N, Delaigue-Cosset MF. Support group for children. Eur J Palliat Care. 2001;8(3):107Y110. 23. Landry-Datte´e N, Delaigue-Cosset MF. Soutenir les enfants de parent malade: une expe´rience de groupe [A support group for children with parental cancer. Rev Fr Psychooncol. 2006;1(248Y249). 24. Landry-Datte´e N, Delaigue-Cosset MF. Anatole l’a dit! [That’s What Anatole Said!]. Paris, France: K’Noe; 2006. 25. Bardin L. L’analyse de contenu [The Analysis of Content]. Paris, France: PUF; 2007. 26. Spitz R. De la naissance a` la parole: la premie´re anne´e de la vie [From Birth to Speech: The First Year of Life]. Paris, France: PUF; 1968.
27. Lebovivi S, Soule´ M. La connaissance de l’enfant par la psychanalyse [A Better Knowledge of Child by Psychoanalysis]. Paris, France: PUF; 1970. 28. Lebovici S, Diatkine R, Soule´ M. Traite´ de psychiatrie de l’enfant et de l’adolescent [Child and Adolescent Psychiatry]. Paris, France: PUF; 1985. 29. Winnicott DW. De la Pe´diatrie a` la Psychanalyse [Throught Pediatrics to Psychoanalysis]. Paris, France: Payot; 1989. 30. Luquet P. Les identifications pre´coces [Early Identifications]. Paris, France: PUF; 2003. 31. Tisseron S. Secrets de famille, mode d’emploi [Family Secrets, Instruction for Use]. Paris, France: Ramsay; 1996. 32. Bick E. Notes in infant observation in psycho-analysic training. Int J Psychoanal. 1964;45:558Y566. 33. Bowlby J and all. The effects of mother-child separation: a follow-up study. Br J Med Psychol. 1956;29(3Y4):211Y247. 34. Lorenz K. Essais sur le comportement animal et humain: les lec¸ons de l’e´volution de la the´orie du comportement [Studies in Animal and Human Behaviours]. Paris, France: Le Seuil; 1970. 35. Ka4s R. Les theories psychanalytiques du groupe [Psychoanalytic Theories of Support Group]. Paris, France: PUF; 2009. 36. Rimbault G. La Clinique du reel [The Clinical Theory of the Reality Check]. Paris, France: Seuil; 1982.
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Appendix 1: Instructions for interview conducted with parents n
Introduction:
- Enter into contact: thank interviewee for participating; presentation of interviewer; reminder of letter and aims of the study. Time dedicated to questions asked by participant. - Recall the context: -
With which members of your family did you take part in the group? What age were the children at the time? What age are they now? At what stage during the illness did you take part?
- Information about the existence of the group - Who told you about the existence of this group? 1. Reasons for taking part in the research - What were the reasons why you decided to talk to me today? 2. Expectations concerning the group/presentation of the group to the children/children’s knowledge of the disease before attending the group/perceived benefits for the parent and for the child/memories concerning the group -
Why did you take part in the group, what were your expectations for yourself/for your children? What did your children know about the disease before they took part in the group? How did you present the group to your children? What did it do for you/for your children? What memories do you have of it?
3. Impact of the disease/effect of the group on the impact of the disease - At the time, in what way did the disease change your family? Did you notice any change in your children’s behavior? - Did taking part in the group modify the impact of the disease? How? 4. Effect of the group on communication about the disease - How did you use to talk about important events in your family? - Did taking part in the group change the way you talked about the disease in your family? How? In the short term? In the long term? 5. Meeting(s) with a mental healthcare professional for the child and for the parent - Did you, your children, receive any psychological care before taking part in the group? After taking part? What was the role of the group? 6. Help during the further course of the disease - Did taking part in the group help you and your children during the further course of the disease? How? - If and only if death is mentioned: Did taking part in the group help prepare for death? And after death? For yourself/for the children? 7. Extension of the group initiative - Do you think that other groups should be set up in other hospitals? - Would you recommend this group?
n
Conclusion: - Did you ask your children to take part in the study? Your partner? - Have you anything to add, a comment, a question? - If this interview has caused you any distress and you want to talk about it, you can contact the psychologist who conducted the group at the IGR (communicate contact details of the psycho-oncology unit). - State that a letter will be sent to them at the end of the study to inform them of its conclusions. - Thank the participant for taking part in the research.
Telling the Truth With Kindness
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Appendix 2: Instructions for interview conducted with children aged 7 to 11 years For the children aged 11 and 14 years, the questions in the present instructions were reformulated. For the children aged older than 14 years, the interview instructions for parents were used and were adapted to the interviewee.
n
Introduction:
- Enter into contact: thank interviewee for participating; presentation of interviewer; reminder of letter and aims of the study. - Recall the context: - Who did you go to the group with? - How old were you? And how old are you now? - At what stage during your parent’s illness did you take part in the group? - Information about the existence of the group - Who told you about the existence of this group? 1. Reasons for taking part in the research - Why did you decide to talk to me today? 2. Expectations concerning the group/children’s knowledge of the disease before attending the group/perceived benefits/ memories concerning the group -
Tell me why you took part in the group, what did you expect from it? What were you told before coming to the group? What did you know about your parent’s illness before coming to the group? Tell me what coming to the group did for you. What memories do you have of the group?
3. Impact of the disease/effect of the group on the impact of the disease - Tell me what effect your parent’s illness had on the life of your family and on you. - Did coming to the group change anything? 4. Effect of the group on communication about the disease - How do you usually talk about important events in your family? - Tell me if taking part in the group changed the way you spoke about your parent’s illness with your parent and the other members of your family. - How did you talk about it before? 5. Meeting(s) with a mental healthcare professional for the child - Had you met a psychologist before taking part in the group? And after the group? 6. Help during the further course of the disease - Did taking part in the group help you afterward? How? - If and only if death is mentioned: Did taking part in the group help prepare you for death? And after death? 7. Extension of the group initiative - Do you think we should carry on having groups like this? - Would you recommend this group? - If so, what would you say to other children to get them to come to the group? n
Conclusion: -
If speaking to me has been a bit difficult for you, you can talk about it with the psychologist from the group. She can see you. Do you want to tell me anything else? Mention the feedback in the results of this research. Thank the participant for taking part in the research.
E18 n Cancer NursingTM, Vol. 39, No. 2, 2016 Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
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Nicole Landry-Datte´e, MPsy Diane Boinon, PhD Gaelle Roig, MPsy Alain Bouregba, MPsy Marie-France Delaigue-Cosset, MD Sarah Dauchy, MD
Telling the TruthIWith Kindness Retrospective Evaluation of 12 Years of Activity of a Support Group for Children and Their Parents With Cancer
K E Y
W O R D S
Background: Cancer in a parent can have harmful effects on a child’s ability to
Children
cope with the situation, in particular if communication about the disease is limited.
Communication
Objective: The aim was to evaluate whether the parent-child group run by a
Parental cancer
psychoanalyst and a doctor at the hospital helps facilitate communication about the
Support group
disease with a child and helps to sooth the child and his/her symptoms. Methods: This qualitative retrospective study conducted among 61 families (71 adults, 19 children) using semidirected interviews made it possible to identify the expectations and benefits perceived by the parents and children. Results: The main expectations of the parents were to meet professionals who would help them to speak about the disease and to help the children understand it better in order to reduce their symptoms. The parents’ expectations were largely satisfied. As far as the children are concerned, they expressed more benefits (better understanding of the disease, reduction of symptoms, meeting similar others) than expectations. Conclusions: The group is a resource that helps both parents and children. Meeting similar others made it possible to justify each participant’s own experiences and promote better communication during the continued course of the disease. Implications for Practice: The benefits brought about by this group testify to the need to offer such support to a greater number of parents with cancer. Improvements to the way in which the group is organized are discussed.
Author Affiliations: Unite´ de Psycho-Oncologie, De´partement de Soins de Support, Gustave Roussy, Villejuif (Ms Landry-Datte´e and Drs Boinon and Dauchy); Service de Pneumologie, HHpital Beaujon, Clichy (Ms Roig); Ligue Nationale Contre le Cancer, Paris (Mr Bouregba); and De´partement des Blocs, Gustave Roussy, Villejuif (Dr Delaigue-Cosset), France. This research was funded by Sanofi-Aventis, France.
The authors have no conflicts of interest to disclose. Correspondence: Nicole Landry-Datte´e, MPsych, Unite´ de Psycho-Oncologie, De´partement de Soins de Support, Gustave Roussy, 114 Rue Edouard Vaillant F-94805, Villejuif, France ([email protected]). Accepted for publication February 16, 2015. DOI: 10.1097/NCC.0000000000000262
E10 n Cancer NursingTM, Vol. 39, No. 2, 2016 Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
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A
ccording to the Institut National du Cancer, of the 365 000 registered cases of cancer in France in 2011, 10.3% (all cancers taken together) had been diagnosed in patients aged between 15 and 49 years.1 Such patients may well already have children or may conceive during a period of remission, which, unfortunately, can sometimes be followed by a relapse. Whatever the age of these children and the family circumstances of their parents, they will be confronted sooner or later by the disease and may potentially be affected by it. Even though many authors have examined the experiences of children of parents with cancer, relatively few data are available concerning the frequency of these situations, in particular because of methodological and ethical obstacles. Despite this, there is a consensus concerning the harmful effects that the presence of a serious and potentially mortal illness in the parent can have on children’s development: sadness, anxiety, mood disorders, adaptive disorders, problems of concentration and difficulties at school, disrupted sleep and eating disorders, and psychosomatic disorders have all been described.2Y8 The frequency of negative emotions has also been emphasized: loss of self-esteem, incomprehension, anger, fear in the face of uncertainty regarding the outcome of the disease, fear of death, and feeling insecure.2,6,9 Neither the objective characteristics of the illness (stage of the cancer, period of development since diagnosis), the age of the ill parent, nor the age of the child seems to be factor that determines the suffering experienced by the child.10 However, behavioral disorders (aggression) seem to be greater in children whose mother is ill.10Y12 Anxiety-related disorders have also been found to be reported more frequently when it is the mother who evaluates the children’s distress (measured using the Child Behavior Checklist) rather than the father.10 Other factors seem to be associated with the difficulties experienced by these children, such as the quality of intrafamily communication about the cancer. The results of this communication appear contradictory. Many studies have shown that more open communication is associated with better adaptation on the part of children, whereas poor-quality communication is linked to greater signs of distress and difficulties in adaptation.3,5Y7,12Y15 By contrast, certain studies have failed to find any link between family communication and the functioning of the child16 or have even reported increased distress in the child (evaluated by the parents) when intrafamily communication regarding cancer is more open.10 According to the authors, these latter results should be viewed in the light of the aspects evaluated by the questionnaire used in this study (the Openness to Discuss Cancer in the Nuclear Family), namely, the emotional abilities of the 2 parents to communicate in the family context. Within this perspective, when parents express their emotions more openly, this may cause greater anxiety in their children.10 According to the authors, it is therefore important to distinguish between the effects associated with intrafamily communication about cancer (children who are not supposed to see everything, hear everything, and share everything with their parents) and the effects of the information children have about the specific disease from which their parent is suffering. In this field, many studies nevertheless agree on the difficulties experienced by parents when communicating with their
Telling the Truth With Kindness
children about the disease. The way parents communicate about cancer is limited in particular by their desire to protect their children from negative emotions such as fear or anger3,6,17 as well as by their fear of not being able to control their own emotions.11 Some parents are not able to give the disease its name and say the word cancer.13 By avoiding their children’s questions about cancer and death and thinking of their children as too young to understand, some parents may come to hide information,18 even though the children themselves state the importance of being informed about the disease and its treatment and of knowing the truth.13,17 In particular, this information allows them not to feel responsible for the situation and the disease and to reduce potential feelings of guilt. When children are kept at arm’s length from their parent’s experience of the disease, this can, in the longer term, generate a feeling of distrust of the parent and medical practitioners.18 Data from the literature confirm our clinical experience gained as psychotherapists in a cancer center where we regularly witness parents’ reticence to communicate with their children about cancer. When we meet them, parents express their deep concern not only about themselves and their future, but also about their children to whom they find it difficult to explain what has happened to them. Situations of advanced illness in which the children are not or are only poorly informed are frequent and a source of great distress to the patients, their children, and the team of carers. The child’s discovery of the parents’ lies and/or concealment aggravates the situation because it threatens the child’s trust in his/her parents and thereby risks impairing children’s development, which is deeply rooted in this trust, and increasing their anxiety. When healthcare providers support parents in their parental role to inform and communicate with their children regarding cancer, they may simultaneously help parents to decrease their distress and also help the children themselves.10,15 Parents ask for the assistance of professionals in speaking to their children and emphasize the need to arrange meetings with them for precisely this purpose.3,5,7,15,17Y19 A number of programs have thus been set up and evaluated, most of which were for children of women with breast cancer and intended either for parents on their own3,17 or children on their own gathered together in appropriate age groups (primary school children/adolescents)5,17,20 or as a function of the advancement of the disease.19 These programs are primarily educational, using methods such as drawing, music, puppets, and games. Although research shows the effectiveness of such psychological support programs in improving mood disorders and quality of life and reducing adaptive difficulties and cancer-related stress,20 few have been the object of comparative studies.7 Since 1994, Gustave Roussy cancer center has conducted support groups for ill parents with nonadult children, irrespective of the stage of the disease and the type of cancer,21Y23 to help the parents start or renew a dialog with their children concerning the disease or even death. Children attend with their parents and constitute the focal point of the group, which concentrates on their questions, their experience, or their emotions. Although the group has been designed for children aged 4 to 18 years, the presence of all the siblings is recommended if possible even if Cancer NursingTM, Vol. 39, No. 2, 2016
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their ages are above or below this range. The sessions are cofacilitated by a doctor-child psychotherapist pair. This group’s frame of reference is psychoanalytical. The group is closed to new members, meets in the same room for sessions lasting approximately 2 hours, and consists of 2 sessions separated by a 2-week interval. The participants are arranged in a semicircle with the children at the front, the parents behind them, and with the facilitators closing the circle. This arrangement allows the various participants to avoid looking at or being looked at by the others who are present in this analytical configuration. We have chosen not to use drawings or games but instead to leave space for speech and to stimulate thought by moving from emotion to representation. The session starts with the projection of a short, 15-minute film You Must Talk-to-Know produced by the 2 cotherapists on the basis of their clinical experience with children. This film addresses the topics of cancer, the main treatments, and the possibility of death. It also addresses sadness, guilt, impotence, and the fear of separation. After the film, there is a discussion period of an hour, followed by a purposeful movement to a different room for a snack that emphasizes the movement away from a situation laden with emotion. At the end of the second meeting, each family receives a small book24 written as a communication aid to help the parents and children continue their discussions. Our purpose here is to provide a 12-year retrospective review of this group approach.
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Aim of the Study
Using a qualitative approach, we sought to qualitatively evaluate the way in which the group responded to the various expectations of the parents (both for themselves and for their children) as well as to the expectations of the children themselves. The secondary aims were to assess the impact of participation in the group on intrafamily communication about cancer and on the children’s symptoms and the distress perceived and expressed by them.
n
Methods
Procedure The approach involved semidirected interviews by a psychologist specifically recruited for the study and not involved in the clinical care of either the parents or their children. A funding grant for a 2-year evaluative study was obtained in 2008. Between 2008 and 2010, we interviewed available families who had participated in the group between 1995 and 2007. The 328 families, including 644 children who participated, were identified, and a letter explaining the study was sent to the ill parent if he/she was still alive or, if not, to the surviving partner. The parent was invited to take part in a telephone interview and to invite the children who had taken part in the group to participate as well. This letter was accompanied by a response coupon
to be returned to the hospital by the participants along with their signed consent in a prepaid envelope indicating their agreement to participate in the telephone interview with a psychologist engaged for the study who was external to the hospital. If children who were still minors participated, their parents’ agreement also had to be provided. All the interviews were recorded with the participants’ consent and were rendered anonymous before being transcribed. The study was approved by the ethics committee of the Ligue Nationale Contre le Cancer.
Tools A pilot phase was conducted in order to test the interview matrix constructed for the responses to the research questions. This was based on the use of a semidirected interview (in which the majority of the questions were open) administered to 20 parents. The interview matrix covered the following 7 subject areas: (1) reasons for taking part in the research, (2) expectations regarding the group and perceived benefits for the parent and child, (3) impact of the disease on the functioning of the family and effect of the group on this impact, (4) effect of the group on communications about the disease, (5) consultation(s) with a mental healthcare professional for the child and for the parent, (6) long-term benefits in coping with the disease progression, and (7) encourage the widespread implementation of the program. The conduct of these preliminary interviews confirmed the relevance and coherence of the interview instructions in terms of the object and aims of the research. Only a few adjustments were made in order to improve the understanding of the questions and facilitate the exchange through the use of prompts and reformulations. Supplementary open questions were added to the initial interview instructions, including the way the patient found out about of the existence of the group, presentation of the group to the child, level of information possessed by the children about the disease before coming to the group, and the habitual mode of communication in the family before participation. At the end of the interview, the parents were asked if they had invited their children to take part in this study and the reasons for their decision (Appendix 1). This interview matrix was adapted depending on the interviewee (parent or child). It was also simplified for use with children aged 7 to 11 years (Appendix 2). A thematic analysis, which followed Bardin’s25 recommendations, was completed by 2 investigators (N.L.-D. and M.-F.D.-C.). The in-depth reading of the first 20 interviews allowed to identify the main categories linked to our research questions. A coding guideline including the recurrent categories was built. A category is defined as a subject or motif that is sufficiently characterized in a person’s speech for the researcher to be able to recognize it as having a broad-based and stable meaning. We identified in each interview the presence or the absence of a category, whatever it appeared directly after the question asked by the researcher or at a deferred time during the interview. When the 2 investigators disagree about the coding, discussions were opened to favor the interrater agreement. We used frequencies in each category and identified link with the expectations and the benefits in relation to the group.
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Table 1 & Expectations and Benefits for Themselves
Results
According to the Parents (n = 71)
Participants Of the 328 families contacted, 73 letters were returned to the hospital undelivered (22.3% of families lost to follow-up). Of the 255 families asked to participate, 61 agreed and responded to the interview (23.9%). We chose not to recontact the families who chose not to participate in order to find out the reasons for their refusal. The study sample therefore consisted of 71 parents (52 mothers, 35 of whom were ill and 17 who were well; 19 fathers, 5 of whom were ill and 14 who were well) and 19 children (14 boys aged between 7 and 25 years [mean age, 14.7 years], 5 girls aged between 10 and 25 years [mean age, 17.6 years]). At the time at which they participated in the group, the children who took part in the research were aged between 5 and 23 years (mean, 11.03 [SD, 4.6] years). The mean period between participation in the group and the research interview was 59.4 (SD, 43) months, with the shortest interval being 8 months and the greatest interval 147 months.
Group Participation Effects The evaluation of the effect of participating in the group on intrafamily communication about the disease showed that 54% of the parents and 57% of the children considered that their participation in the group had facilitated this communication by helping them reduce the difficulties involved in speaking about the disease. Furthermore, 45% of the parents thought that participation in the group had helped their children to adapt better during the subsequent course of the disease (reduction of distress and evident symptoms, reduced feeling of solitude), and this figure increased to 67% when the children were questioned directly. Most of the parents (89%) said they would recommend the group to families in which 1 of the parents has cancer, and 93% thought it desirable to replicate this group program in its present form in other hospitals (‘‘I hope that this research will make it possible to develop discussion groups for the children of ill parents’’). When asked about the setting, they primarily referred to the empathy of the therapists, the feeling of safety, the words used, and the snack. This latter aspect was systematically mentioned by the children (‘‘There was a great snack, it was really friendly’’; ‘‘The doctor served the croissants, we all sat down together. It was really nice’’; ‘‘The snack showed the hospital in a different light, as a living space where there is room for children’’). The parents’ own expectations of the group and the perceived benefits for themselves (Table 1) were mostly positive: to be helped to speak about the disease with their child, to understand the disease, express their experience, meet people in a similar situation (ie, other ill adults or their partners), to search for hope and reassurance, and to receive support from an independent professional in order to communicate better. Some of the parents (25%) said that they had no specific expectations. None of the parents interviewed feared a negative impact. The 2 fields in which expectations were highest were support in being able to speak about the disease, mentioned by 45% of the parents (‘‘I couldn’t tell him, it was an opportunity for someone else to speak in my place’’; ‘‘My
Telling the Truth With Kindness
Categories Finding the right words Understanding Expressing oneself Meeting similar others Search for hope Reduction in symptoms Getting to know the hospital Idea of a ‘‘third party’’ No expectation or benefit expressed Increase in symptoms
Expectations, n (%)
Benefits, n (%)
32 (45) 4 (6) 0 (0) 9 (13) 1 (1) 8 (11) 0 (0) 34 (48) 18 (25)
29 (41) 7 (10) 10 (14) 28 (39) 10 (14) 30 (42) 2 (3) 35 (49) 14 (20)
0 (0)
3 (4)
words just weren’t enough’’), and the opportunity to meet professionals who were qualified to help them find ways to speak about the disease, mentioned by 48% of parents (‘‘It was so overwhelming and impossible to talk about that I had to get help from outside’’; ‘‘I thought that specialists would find the right words’’; ‘‘The doctor said something very complicated using very simple words’’; ‘‘When they were said by the doctor, the words didn’t seem so awful’’; ‘‘The meeting had a serious feel because a psychologist and a doctor were there’’). Perceived benefits were frequently mentioned in these 2 areas (‘‘It helped us to find the words to talk about the disease’’; ‘‘Communication in the family loosened up again’’; ‘‘What it gave us was freedom in the way we talked and the reassurance that this brings’’), as well as in 2 fields in which the patients nevertheless mentioned few expectations for themselves: meeting similar others for 39% of the parents (‘‘We found out that it’s the same for everyone, it’s not just us that’s the problem, it’s human nature’’; ‘‘We’re all in the same boat’’; ‘‘To experience it as a group, that had something reassuring, calming about it’’) and reducing their own symptoms of distress and sadness in 42% of cases (‘‘I was able to let off steam’’; ‘‘It was very intense at the emotional level, but at the same time, it was soothing to cry’’; ‘‘It did me good because it was the first time I had cried’’). Finally, 4% of the parents described an increase in distress. However, this response was never exclusive and was therefore associated with a positive impact (Table 1). The parents reported expecting participation in the group to enable their children to speak more freely about the disease and to receive the support of a third-party (‘‘A lock that’s been opened’’; ‘‘Doors that have been forced open’’; ‘‘A curtain that’s been lifted’’). In this case, meeting someone in a similar situation (‘‘I didn’t want him to feel alone, as if his father was the only person this had happened to in the world’’) and reducing the symptoms of distress in the child were perceived as benefits and as benefits that had been expected by the parents (‘‘She spoke about death and after that she didn’t have any more nightmares’’). Finding out about the hospital in which the parent was being treated did not feature among the expectations but still tended to be perceived as a benefit (‘‘To be able to identify with the hospital’’; ‘‘To have a genuine idea of the place, to be able to picture the place and the people who look after me’’; ‘‘It brought Cancer NursingTM, Vol. 39, No. 2, 2016
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peace of mind and comfort’’). Some of the parents (49%) hoped that a better understanding of the disease would help reduce the symptoms in their children (nightmares, bed wetting, withdrawal, aggression); 46% of them thought that participation in the group had helped reduce these symptoms. Finally, 17% of the parents said that they had not noticed that the group had any impact on their child. An increase in distress symptoms was reported by only 1% of parents (Table 2). Of the children, 32% expected to gain a better understanding of their parent’s disease (‘‘She wasn’t able to tell us, but we could feel it, we worried about it; we asked ourselves lots of questions, we imagined lots of things, and we needed to know’’), and nearly 58% said they had felt this benefit (‘‘It made it possible for parents and children to talk’’). Even though only 26% of the children expected the group to reduce their symptoms, this benefit was perceived by 63% of them. Forty-seven percent stressed the benefit of meeting other children who had to cope with having an ill parent (‘‘I was happy to find out that I was not the only person to experience that. My friends’ mums, they didn’t have that.’’; ‘‘You feel like you’re the only one in the world, and then you see that you’re not the only one who’s suffering’’; ‘‘I was able to see that everything I was feeling was justified’’; ‘‘It helps you accept your feelings’’), even though only 16% said they had such an expectation (Table 3).
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Discussion
The results of this qualitative study address the ways both parents and children experienced their participation in the group. Reported benefits support the positive outcomes of communication on the part of adults about cancer with their children.26Y30 The expectations expressed by the parents in this study for both themselves and their children indicate that they correctly understood the objectives of the group. The importance of the third-party role played by the therapists in the group is that they help parents to speak rather than speaking in their place and in this way help them recover or maintain their function as parents. Potentially fatal diseases can increase distress and depression and restrict the possibility of expressing a truth that is too difficult to share with one’s children. The difficultly parents feel in commu-
Table 2 & Expectations and Benefits for the Child According to the Parents (n = 71)
Categories Finding the right words Understanding Expressing oneself Meeting similar others Search for hope Reduction in symptoms Getting to know the hospital No expectation or benefit expressed Increase in symptoms Don’t know
Expectations, n (%)
Benefits, n (%)
28 (39) 29 (41) 16 (23) 26 (37) 0 (0) 35 (49) 3 (4) 4 (6) 0 (0) 0 (0)
22 (31) 27 (38) 21 (30) 37 (52) 2 (3) 33 (46) 15 (21) 12 (17) 1 (1) 1 (1)
Table 3 & Expectations and Benefits for Themselves According to the Children (n = 19)
Categories Finding the right words Understanding Expressing oneself Meeting similar others Search for hope Reduction in symptoms Getting to know the hospital Expectation or benefit for the parent No expectation or benefit expressed Increase in symptoms Don’t remember
Expectations, n (%) 3 6 0 3 0 5 0 4 6
(16) (32) (0) (16) (0) (26) (0) (21) (32)
0 (0) 0 (0)
Benefits, n (%) 5 11 6 9 2 12 5 1 1
(26) (58) (32) (47) (11) (63) (26) (5) (5)
1 (5) 1 (5)
nicating with their children about cancer may be linked to the difficulty for the parents to think about their cancer and consequently to speak about it. Not addressing it risks children imagining scenarios that are often much more frightening than the reality. Not addressing cancer can have harmful effects for the mental functioning of the child, as Tisseron31 has explained. These effects may take the form of a loss of confidence by the child in his/her parents as well as a loss of self-confidence and may threaten the permanence of a relationship that is essential if children are to construct their own identities, as observations of the mother-baby relationship and concepts of attachment and imprinting have shown.32Y34 Counting on trust and support from reliable, predictable adults is indispensable if children are to construct a fundamental basis of security on which they can rely throughout their lives.29 Our study findings indicate that the problem of the child’s symptoms seems to be of central importance for the parents who see it as an expression of the child’s suffering. By contrast, it seems to be of secondary importance to the children who do not necessarily make the connection between their suffering and their symptoms. The results of our study show that, according to the parents available to report, this expectation of a reduction in the child’s symptoms was satisfied, whereas the children came to notice it only after participating in the group given that it was not prominent among their expectations. Nevertheless, the children mentioned this benefit more often than their parents did. In light of these results, we conclude that most expectations were satisfied (being able to communicate, reducing symptoms), and thus, the group achieved its aims. Parents and children gained an additional benefit from meeting other people who were experiencing the same situation. This benefit seemed particularly valuable to the parents, discovering that they were not alone. Children were able to ask difficult questions and learned that such questions are not wrong to ask. The group also allowed the parents to recognize that their children think about death. To see one’s self in other people’s words and to be able to identify with others can be calming within the safe environment of a reassuring group.35 That is why we chose to follow the free association of ideas from participants. Very often, the discussion started with factual questions by the
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youngest children about the disease and how to treat it. Before hearing the answer, they were always asked to explain how they imagined it. The discussions make it possible to ‘‘normalize’’ the experience of each of the participants and reassure them that there is nothing wrong with experiencing the disease as a burden. These relatively encouraging results are consistent with Rimbault’s36 observations as well as those reported by child psychotherapists: ‘‘It is necessary to help and support the parents in order to help and support the children.’’ What is more, the majority of the parents who took part in our study said they would recommend the group to families in which one of the parents had cancer. It is important for healthcare providers to help and strengthen ill parents in reasserting their parental image. Many feel inadequate and guilty for imposing such a burden on their children. To encourage them to communicate with their children is to give them the resources necessary to establish and maintain the trust that is essential if their children are to structure their identities. It is also to help prevent the children from being submerged by the distress caused by an imagined situation. n
Limitations
ACKNOWLEDGMENT
The authors thank the study participants for their time and effort.
References
One of the main limitations of our study lies in its retrospective nature, with our evaluation being based on the participants’ memories and reconstruction of past feelings and events. Some of the parents and children responded more than 10 years after participating in the group. Ultimately, what we evaluate here is less the impact of the group in the narrow sense and more the memory of participating in the group and the place that the adults and children accord this in their memory of the patient’s healthcare trajectory. There was a risk that the memory of the group would be laden with negative emotions. In this context, the fact that this retrospective evaluation was positive is a valuable finding. The presence of a social desirability bias in the collected data is also possible because the parents were personally invited to take part in a telephone interview and were told that their anonymity would be guaranteed in the interview transcriptions. It is possible that the participants responded positively out of a feeling of gratitude toward the hospital. To limit this bias to the greatest possible extent, participants were told that the interviewer came from outside the hospital. Another limitation of our study lies in the small size of the child sample, with only a small number of children responding compared with the number who had participated in the group during the 12 years covered by the study. For the youngest of these, a telephone interview might have been a difficult prospect, and a face-to-face meeting would probably have been more appropriate. By contrast, those who had participated a long time in the past had grown up, and some of the parents did not inform them of our invitation in order to avoid, as they said, reawakening painful memories. n
regions in France. It has also given rise to national and international training programs on this issue. Certain modifications are being considered, for example, reserving a short period for the children alone during the second session. The question of the value of an additional session, which some of the parents cited as desirable during the interview, might also be a subject for further consideration. A prospective study is still required in order to provide data acquired during the time course of the disease and the period following it rather than data based on memories remolded by time. The difficulty of such a study is that it should ideally include a period devoted to the evaluation of intrafamily communications before participation in the groupVsomething that would be problematic at the methodological, ethical, and practical levels.
Conclusion
The results of this study provide support for the attempts to offer this type of group, which is now provided in 4 district
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1. INCA. La situation du cancer en France en 2012 [Cancer in France in 2012]. http://www.e-cancer.fr. Accessed Retrieved October 17, 2013. 2. Compas BE, Worsham NL, Ey S, Howell DC. When mom or dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients. Health Psychol. 1996;15(3):167Y173. 3. Hoke LA. A short-term psychoeducational intervention for families with parental cancer. Harv Rev Psychiatry. 1997;5(2):99Y103. 4. Edwards B, Clarke V. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psychooncology. 2004;13(8):562Y576. 5. Kristjanson LJ, Chalmers KI, et al. Information and support needs of adolescent children of women with breast cancer. Oncol Nurs Forum. 2004; 31(1):111Y119. 6. Visser A, Huizinga GA, et al. The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev. 2004;30(8): 683Y694. 7. Su YH, Ryan-Wenger NA. Children’s adjustment to parental cancer: a theoretical model development. Cancer Nurs. 2007;30(5):362Y381; quiz 363Y382. 8. Korneich D, Mannheim H, Axelrod D. How children live with parental cancer. Prim Psychiatry. 2008:64Y70. 9. Giesbers J, Verdonck-de Leeuw IM, van Zuuren FJ, et al. Coping with parental cancer: Web-based peer support in children. Psychooncology. 2010; 19(8):887Y892. 10. Paradis M, Consoli SM, et al. Influence of the communication about one parent’s cancer on children’s suffering. Rev Med Interne. 2008;29(12): 986Y993. 11. Thorne S. The family cancer experience. Cancer Nurs. 1985;8(5):285Y291. 12. Osborn T. The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psychooncology. 2007;16(2):101Y126. 13. Thastum M, Johansen MB, Gubba L, et al. Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer.Clin Child Psychol Psychiatr. 2008;13(1):123Y138. 14. Gazendam-Donofri SM, Hoekstra H, van der Graaf W, et al. Parent-child communication patterns during the first year after a parent’s cancer diagnosis: the effect on parents’ functioning. Cancer. 2009;115(18):4227Y4237. 15. Huizinga GA, Visser A, et al. The quality of communication between parents and adolescent children in the case of parental cancer. Ann Oncol. 2005;16(12):1956Y1961. 16. Nelson E, While D. Children’s adjustment during the first year of a parent’s cancer diagnosis. J Psychosoc Oncol. 2002;20,(1):15Y36. 17. Greening K. Support groups for children of patients with cancer. Cancer Pract. 1999;7(4):208Y211.
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18. Barnes J, Kroll J, et al. Factors predicting communication about the diagnosis of maternal breast cancer to children. J Psychosom Res. 2002; 52(4):209Y214. 19. Kari E, Helseth S, Darbyshire P. Chidren’s experiences of participation in a family support program when their parent has incurable cancer. Cancer Nurs. 2008;31(6):426Y434. 20. Taylor-Brown J, Acheson A, Farber JM. Kids can cope: a group intervention for children whose parents have Cancer. J Psychosoc Oncol. 1993;11(1):41Y52. 21. Landry-Dattee N, Gauvain-Piquard A, et al. A support group for children with one parent with cancer: report on 4 year experience of a talking group. Bull Cancer. 2000;87(4):355Y362. 22. Landry-Datte´e N, Delaigue-Cosset MF. Support group for children. Eur J Palliat Care. 2001;8(3):107Y110. 23. Landry-Datte´e N, Delaigue-Cosset MF. Soutenir les enfants de parent malade: une expe´rience de groupe [A support group for children with parental cancer. Rev Fr Psychooncol. 2006;1(248Y249). 24. Landry-Datte´e N, Delaigue-Cosset MF. Anatole l’a dit! [That’s What Anatole Said!]. Paris, France: K’Noe; 2006. 25. Bardin L. L’analyse de contenu [The Analysis of Content]. Paris, France: PUF; 2007. 26. Spitz R. De la naissance a` la parole: la premie´re anne´e de la vie [From Birth to Speech: The First Year of Life]. Paris, France: PUF; 1968.
27. Lebovivi S, Soule´ M. La connaissance de l’enfant par la psychanalyse [A Better Knowledge of Child by Psychoanalysis]. Paris, France: PUF; 1970. 28. Lebovici S, Diatkine R, Soule´ M. Traite´ de psychiatrie de l’enfant et de l’adolescent [Child and Adolescent Psychiatry]. Paris, France: PUF; 1985. 29. Winnicott DW. De la Pe´diatrie a` la Psychanalyse [Throught Pediatrics to Psychoanalysis]. Paris, France: Payot; 1989. 30. Luquet P. Les identifications pre´coces [Early Identifications]. Paris, France: PUF; 2003. 31. Tisseron S. Secrets de famille, mode d’emploi [Family Secrets, Instruction for Use]. Paris, France: Ramsay; 1996. 32. Bick E. Notes in infant observation in psycho-analysic training. Int J Psychoanal. 1964;45:558Y566. 33. Bowlby J and all. The effects of mother-child separation: a follow-up study. Br J Med Psychol. 1956;29(3Y4):211Y247. 34. Lorenz K. Essais sur le comportement animal et humain: les lec¸ons de l’e´volution de la the´orie du comportement [Studies in Animal and Human Behaviours]. Paris, France: Le Seuil; 1970. 35. Ka4s R. Les theories psychanalytiques du groupe [Psychoanalytic Theories of Support Group]. Paris, France: PUF; 2009. 36. Rimbault G. La Clinique du reel [The Clinical Theory of the Reality Check]. Paris, France: Seuil; 1982.
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Appendix 1: Instructions for interview conducted with parents n
Introduction:
- Enter into contact: thank interviewee for participating; presentation of interviewer; reminder of letter and aims of the study. Time dedicated to questions asked by participant. - Recall the context: -
With which members of your family did you take part in the group? What age were the children at the time? What age are they now? At what stage during the illness did you take part?
- Information about the existence of the group - Who told you about the existence of this group? 1. Reasons for taking part in the research - What were the reasons why you decided to talk to me today? 2. Expectations concerning the group/presentation of the group to the children/children’s knowledge of the disease before attending the group/perceived benefits for the parent and for the child/memories concerning the group -
Why did you take part in the group, what were your expectations for yourself/for your children? What did your children know about the disease before they took part in the group? How did you present the group to your children? What did it do for you/for your children? What memories do you have of it?
3. Impact of the disease/effect of the group on the impact of the disease - At the time, in what way did the disease change your family? Did you notice any change in your children’s behavior? - Did taking part in the group modify the impact of the disease? How? 4. Effect of the group on communication about the disease - How did you use to talk about important events in your family? - Did taking part in the group change the way you talked about the disease in your family? How? In the short term? In the long term? 5. Meeting(s) with a mental healthcare professional for the child and for the parent - Did you, your children, receive any psychological care before taking part in the group? After taking part? What was the role of the group? 6. Help during the further course of the disease - Did taking part in the group help you and your children during the further course of the disease? How? - If and only if death is mentioned: Did taking part in the group help prepare for death? And after death? For yourself/for the children? 7. Extension of the group initiative - Do you think that other groups should be set up in other hospitals? - Would you recommend this group?
n
Conclusion: - Did you ask your children to take part in the study? Your partner? - Have you anything to add, a comment, a question? - If this interview has caused you any distress and you want to talk about it, you can contact the psychologist who conducted the group at the IGR (communicate contact details of the psycho-oncology unit). - State that a letter will be sent to them at the end of the study to inform them of its conclusions. - Thank the participant for taking part in the research.
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Appendix 2: Instructions for interview conducted with children aged 7 to 11 years For the children aged 11 and 14 years, the questions in the present instructions were reformulated. For the children aged older than 14 years, the interview instructions for parents were used and were adapted to the interviewee.
n
Introduction:
- Enter into contact: thank interviewee for participating; presentation of interviewer; reminder of letter and aims of the study. - Recall the context: - Who did you go to the group with? - How old were you? And how old are you now? - At what stage during your parent’s illness did you take part in the group? - Information about the existence of the group - Who told you about the existence of this group? 1. Reasons for taking part in the research - Why did you decide to talk to me today? 2. Expectations concerning the group/children’s knowledge of the disease before attending the group/perceived benefits/ memories concerning the group -
Tell me why you took part in the group, what did you expect from it? What were you told before coming to the group? What did you know about your parent’s illness before coming to the group? Tell me what coming to the group did for you. What memories do you have of the group?
3. Impact of the disease/effect of the group on the impact of the disease - Tell me what effect your parent’s illness had on the life of your family and on you. - Did coming to the group change anything? 4. Effect of the group on communication about the disease - How do you usually talk about important events in your family? - Tell me if taking part in the group changed the way you spoke about your parent’s illness with your parent and the other members of your family. - How did you talk about it before? 5. Meeting(s) with a mental healthcare professional for the child - Had you met a psychologist before taking part in the group? And after the group? 6. Help during the further course of the disease - Did taking part in the group help you afterward? How? - If and only if death is mentioned: Did taking part in the group help prepare you for death? And after death? 7. Extension of the group initiative - Do you think we should carry on having groups like this? - Would you recommend this group? - If so, what would you say to other children to get them to come to the group? n
Conclusion: -
If speaking to me has been a bit difficult for you, you can talk about it with the psychologist from the group. She can see you. Do you want to tell me anything else? Mention the feedback in the results of this research. Thank the participant for taking part in the research.
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