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Parents’ views on information in childhood cancer care
European Journal of Oncology Nursing 15 (2011) 290e295
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Parents’ views on information in childhood cancer care Anne Kästel a, *, Karin Enskär b, Olle Björk c a
The Red Cross University College, Karolinska University Hospital, Solna, 17176 Stockholm, Sweden Department of Nursing Science, School of Health Science, Jönköping University, Sweden c Paediatric Oncology Unit, Karolinska Institute, Stockholm, Sweden b
a b s t r a c t Keywords: Childhood cancer Parents Information Understanding
Purpose: The aim of the study is to highlight parents’ views on information in childhood cancer care. Method: A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child’s illness. Results: If the parents’ needs were fulfilled, they were better equipped to handle the illness of their child, which is totally dependant on how the matter of information is dealt with. Information is a complex and demanding issue for the persons involved and the families’ views were divergent in this area. Sometimes they seemed to obtain the information successfully and sometimes there were great problems in this respect. Therefore their preferences must be considered. Conclusion: There has to be an improvement from the aspects of what, when and how information is provided. The major findings of this study indicate that the families need better support and more distinct instructions to be able to cope with the situation. Ó 2010 Elsevier Ltd. All rights reserved.
Introduction Child cancer care is becoming increasingly successful, and today 75% of all children diagnosed with cancer are cured; the treatment has become more successful through intensified therapy. The survival for most diagnoses has improved continuously, but the development has not been simple to achieve due to the pain and anxiety the treatment often causes (Gustafsson et al., 2007). Therefore, the families report various degrees of psychological stress, as the treatment for the sick children and its side effects are very trying (Ow, 2003). Experiencing a cancer diagnosis is thus emotionally devastating and it takes a great deal of energy for the whole family to adjust to the illness and the new situation. Parker and Johnston (2008) state that starting with the severe experience of finding out that your child has cancer it is vital how the information is communicated, which can have a lasting impression on parents receiving the news. Consequently, the control and power the families might achieve are greatly dependent upon how the aspect of information is handled. The diagnosis of a serious disease in a child is a stressing factor for healthcare workers who have to tell the parents about it (Beltrao et al., 2007). Furthermore, communication affects people’s factual understanding of the situations they are in and thus building * Corresponding author. Tel.: þ46 8 51773630, þ46 73 7592036(mobile). E-mail address: [email protected] (A. Kästel). 1462-3889/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2010.10.007
a good interpersonal relationship e one entailing mutual respect, trust and empathy e seems to be an essential prerequisite for satisfactory information exchange and collaboration. Communication of bad news is a two-way process that requires not only skilled medical staff but also a receptive audience. The emotional state of the parent determines his or her ability to hear and comprehend the information (Eden et al., 1994). According to Beltrao et al. (2007), three main themes occurred in maternal perceptions about their child receiving a cancer diagnosis, concerning attitudes and feelings, information as a support for coping and social support. The authors found that parents were satisfied when the conversation about the diagnosis was frank and open and when their privacy was respected, they were allowed time to express their emotions and their questions were answered. Aim The research question in this study aims to describe families’ experiences of information in childhood cancer care. Methods A qualitative method was appropriate for this study and has been chosen to allow us to understand the interaction between families and nursing staff. To fully comprehend why parents think and feel the way they do, it is necessary to be in the same setting and to share
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in discussions and talks with the families. Listening to their stories and conducting interviews allowed the family members to express their experiences (Sebrant, 2000). The study was conducted at a paediatric oncology ward, following up eight families, each with a child diagnosed with cancer, during the first year after diagnosis. Participants The families were selected using a qualitative way of working, intended to strive for variety among several factors. The families were thereby selected from certain criteria that had to be considered: the family constitution, the child’s age and sex, the child’s diagnosis and prognosis and the socio-economic situation. Eight families were chosen: five with Swedish background, one with a Nordic background, one Asian family and one family with a father from southern Europe. Educational background varied greatly, from highly educated to working class, as did the socio-economic situation. The children selected for the study, were diagnosed with various types of leukaemia and solid tumours of different levels of severity, because of the possible variety in impact on the parents’ experiences. There were five boys and three girls in the study, aged 2 months to 17 years. Setting The study was conducted at a paediatric oncology ward accommodating 14 children. The treatment periods are short and characterized by high intensity, with some variety due to diagnosis, after which the children are soon transferred to the outpatient ward. The medical staff is made up of registered nurses, registered nurses with specialist education in paediatric nursing, unregistered assistant nurses and physicians. Data collection Informal meetings with the families were done several times during the first year, in order to get a sense of the interaction in the ward context. This approach facilitated the understanding of the families’ views, as their situation and experiences change to a great extent, especially during the first year after the cancer diagnosis. In the same purpose talks and interviews were carried out on five occasions with both families and nursing staff (five interviews with eight families ¼ 40 interviews) spread out over the first year of their child’s illness, see Table 1. The interview questions were open ended with a focus on the parents stories and were planned overtime to follow the parents’ process from the time of diagnosis to the end of the first year. The parents described their initial experiences from the introduction to the ward, meeting the staff and onwards the communication and interaction. Follow-up interviews with a staff member were carried out after each interview and are reported elsewhere.
Table 1 Participants in each interview. Interview 1 Family Family Family Family Family Family Family Family *
1 2 3 4 5 6 7 8
Interview 2 Interview 3 Interview 4 Interview 5
Mother Father Mother þ father Mother Mother Father Mother Father Mother Mother Mother Mother Mother Father Brother* Mother
Father Mother Mother Mother Mother Father Father Sister*
Older sibling substituting for the parent in the family.
Mother Father Father Father Father Mother Mother Brother*
Father Mother Mother Father Mother Mother Father Sister*
291
Data analysis All the interviews were audio taped and transcribed in their entirety. A content analysis was conducted as described by Neumann (2006). The transcripts were read several times to get a sense of the whole picture. Descriptive themes and subthemes were identified, and coding was done at the subtheme level. Discussions within the research team were held to reach consensus about the coding, and any discrepancies were resolved. Two main themes emerged from the results of the data analysis, concerning information and participation. The first, information, is described below and the second, participation, will be described in another publication. Validity and reliability In qualitative research, validity means truthfulness, but qualitative researchers are more interested in authenticity than truthfulness. Authenticity means giving a fair, honest and balanced account of social life from someone’s viewpoint (Neumann, 2006). Social research concerns interpretations of people’s notions and opinions that constitute the result, which leads to constructions by the researcher. Thus, the argument for relevance and usefulness in the results and interpretations becomes vital (Sebrant, 2000). Qualitative data is not imprecise or deficient but rather highly meaningful for qualitative researchers (Neumann, 2006). Reliability means dependability or consistency. Qualitative researchers believe that subject matter, and a researcher’s relationship to it, should be a process that evolves over time (Neumann, 2006). Ethical aspects Children with cancer and their families are extremely vulnerable and it is of great importance to consider basic ethical principals, such as the autonomy principal and the importance of volition, which was carefully considered in this study. The regional ethical committee at the Karolinska Institute, Dnr 04-1041/4, approved this study. Findings The aim of the study was to highlight the families’ experiences of information in paediatric oncology. There are two meeting parties, the family and the medical staff, and the findings are analysed from these parties separately. The statements from the families and the staff have been qualitatively analysed and the quotations chosen as particularly illuminating. One of the main themes that appeared when analysing the parents’ statements concerned information. The families views about information Initially, the parents have to come to an understanding of what is happening, and thereafter must be able to internalise the information. Once the information is internalised, the possibility emerges for the family to become involved and take on responsibility. The pattern that is gradually becoming visible from the empiric findings mainly concerns this theme. The matter of information, from the parents’ perspective, that has appeared from the empiric findings concerns realizing what is happening, and concerns what, when and how. These categories concern structure, time, emotions and personality: What e structure, when e time/availability, how e emotions, who e personality. The all-encompassing issue about information is what is informed. The information given is huge and concerns diagnoses,
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treatments and side effects, as well as basic practical information. This structure suits certain parents very well, but others less well. To bring about comprehension and create confidence is also about when and how the information is given. Time is an important aspect and needs to be available, but this is also applies to who is giving the information. The emotional aspect is vital to internalising information. This implies how the information is given and the extent to which a professional medical language is used, versus an understandable language adjusted to the receiver. The quotations below are cited with family number (fam) from 1e8 and the interviews (int) from 1e5. What Receiving information the instant it is available is described as a positive experience by the parents, but is sometimes more problematic, because they often need more time and prefer to be spared certain information. There are obvious differences in experiences, which could be connected to education level and reading habits but also emotional status. One family argued that no more information should be given than was asked for. “Perhaps they don’t need to give all the information the first” week; perhaps they could leave out some details. (mother fam 2 int 2) “The information is given rapidly, but we cannot take it all in and they over-inform about everything.” (mother fam 1 int 1) The importance of the physicians being available for questions is emphasized strongly, and the experience of having a great deal of information is often described as stressful. When there was room for questions, misunderstandings and faults often emerged, which on the other hand might cause extra pressure on the family to stay well informed. Certain situations led to frustration for families not finding the “right” person and thus giving up the attempt. A different phenomenon instead arose, whereby the families pitied the staff that was put under pressure. Their own anxiety was displaced, to avoid being seen as demanding. Sometimes it was described as pure panic to stop anyone, just to get an answer. It happened that discussion they had been promised never came up, and the family was left with a quick answer from the physician just passing by. The result could be unanswered questions and anxiety never being addressed. “Sometimes it is stressful and there might be misunderstandings because of the rush.” (father fam 4 int 2) ”It ended up in a quick talk in the hallway instead, so I gave up my questions and anxiety.” (mother fam 6 int. 4) Parents are under a great deal of pressure and stress before leaving the ward, and in this situation it is very important that the information is internalised. Leaving the ward for the first time after the début of their child’s disease was sometimes experienced as mere horror including a serious lack of preparation for the families. It is a demanding situation to take over responsibility and feel confident whenever it happens; therefore the parents’ confidence probably would increase with better preparation. In certain situations the information was not provided and the family had not at all realized the implications of leaving the ward. “I wondered if they sent us home because our daughter was so sick that she wouldn’t make it.” (mother fam 3 int. 3)
“Poor information before we went home, too much of a rush.” (father fam 2 int. 2) The families underlined the importance of written information, especially before leaving the ward. The situation varies depending on who is giving the information; verbal instructions are used occasionally and there is no official rule regarding written information. Avoiding verbal information concerning certain issues such as medication could reduce the stress level for the families, as there is great responsibility involved in handling the medication. “I need a paper to get it clear.” Perhaps it is necessary to have a distinct routine. If we can read there won’t be any mistakes.” (father fam 3 int. 4) A great change is in store when the child is transferred from the ward to the outpatient department. The space of time for questions and talks is limited in the new surroundings, and the experiences from this situation varied greatly. It is sometimes experienced as manageable and unproblematic, when an understanding of the disease and treatment has been achieved. But if the treatment and protocols are incomprehensible it is a difficult situation. At the outpatient department the children are scheduled at set intervals and there is thus no extra time for questions or thoughts when the time has run out for the visit. The longer time that has passed, the more complicated it is to persist with questions. It is described as a huge difference, from initially being showered with information to gradually having to seek information themselves. “The difference was huge at the outpatient department. At first we had a lot of information at the ward e now we must get the information ourselves. It does not feel easier with the questions now and having to ask for extra time.” (mother fam 6 int 2) Sometimes there is not enough time at the outpatient department, and certain information has to be given by phone. This particular situation is very unsatisfactory to the families. The experience of being listened to and confirmed became most important. “Information by phone e how serious is this? We become more and more critical and observant.” (father fam 7 int. 2) When How the families experienced the opportunity to ask questions, in addition to how their anxiety was met, varied greatly. There were also differences in how the families experienced the flow of information. Initially there were almost no limitations in space, but this lessened over time. There also were variations due to which person the family met. “We could ask about anything; Dr. A. was available during the first days.” (mother fam 2 int 1) “Dr. N. always takes his time and we felt confident in asking. He was there to calm us down.” (mother fam 3 int 1) At the outpatient department there is less available time for questions than at the ward, due to a different structure and schedule. The families were very understanding about the lack of time and took this as an organizational matter rather than being due to the person they met. Sometimes, however, the families
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reacted strongly to the fact that they did not receive the response or attention they needed. It was not an acceptable experience to have to wait until the next treatment event for information.
hold on to. The plans for treatment, cures and other factors important for the coming time, helped to reshape the order that the family had lost.
“There is not much time to discuss things here; it is unspoken that there is no time.” (mother fam 5 int 3)
“There were clear messages and relief. We had been to hell and had returned.” (father fam 1 int 2)
“Hard to get a chance to talk to the doctors, it is their working situation esomething has to do be done about that.” (father fam 1 int. 3)
On the other hand, they pointed out stressful situations with a great deal of insecurity and confusion. Too much information could cause them to lose control. Sometimes the best choice was not to provide a great deal of information in a short time.
Who The parents describe that the physicians give the essential medical information and that they play an important role. The nurse often has an interpreting function, is often under less stress and can confront the physicians in order to get details. The nurse is often closer to the families with a concrete presence due to her specific role, in matters like recurrent medical routines. The families draw extra confidence from the fact that the information can be repeated by the nurses as well as the assistant nurses. “The nurse can give answers to questions you normally ask the doctors about.” (brother fam 8 int. 1) “The doctors inform and the nurses check up.” (father fam 3 int. 2) The assistant nurses are an important group, supplying a great deal of basic practical information. They have closeness to the family that the other staff members do not have. “Respect for the doctors e more convenient to ask the assistant nurses.” (mother fam 8 int. 2) “The nurses were very helpful e we had a lot of questions and they had the time.” (mother fam 4 int. 3) A father described the assistant nurses as the hub and the spine of the ward, and this seems connected to building up confidence, due to time and availability. Every person on the staff has his or her special significance for the families, but the assistant nurses are important in a special way, spending a great deal of time in the patient room performing various tasks. How A common situation is how the parents describe the shock they felt when they first received the news of their child’s cancer diagnosis; it was about not having the capacity to internalise the message. The experience was so strong and difficult that they did not manage to take in the information. There could be certain fragments that were understood as the possibility of cure and recovery, but many details simply disappeared and were not grasped. “You remember nothing e they talked and talked.” (mother fam 4 int. 1)
“We are knocked out by all the information, .enormous insecurity.” (mother fam 5 int. 1) It seems to be very important how the information is presented. Sometimes the parents found the information level well adjusted to their own needs and circumstances, clear and unambiguous. The experience and sensitive ear from the informant seems quite vital, including the capacity to read the families and to individualize the information. “Sometimes we didn’t understand, but then they explained.” (father fam 5 int. 4) “We know that they give exhaustive answers.” (mother fam 2 int. 3) The views of the Asian family diverged from those of the other families in the study. They even stated that they ought to have been spared some of the details about complications involved with the treatment. Their idea was that a great deal of information might result in an increased negative experience. This seems to be an example of variations in culture. A connection between another type of knowledge and approach was thereby made. Medical explanations from the physicians are difficult to understand, and in their home country, information is never given straight to the patient but rather to the relatives. “They told us and it was awful and we had empty hearts; it was very hard.” (Mother fam 8 int 2) In this situation the families sometimes experienced the information as too extensive. A clear and distinct message could sometimes be understood as cold and insensitive. The difficulty in adjusting to every family’s needs from various presuppositions is obvious. It is a matter of overcoming linguistic obstacles, personal chemistry, cultural differences and other important aspects. “He was very cold and distinct; he wanted to say the worst. After that it can only be better.” (Sister fam 8 int 3) “It doesn’t change anything, but sometimes it matters how things are told.” (mother fam 6 int. 2)
“At first we didn’t understand anything, .hard to follow along and realize.” (mother fam 5 int. 1)
The families sometimes had difficulty grasping the essential parts of the information. They sometimes miss the overall point because of too many details. This was a recurrent dilemma, when a great deal of information was given and the ability and prepositions from sender and receiver varied.
After the initial phase of complex information, the parents described that they felt relieved, confident and safe on the one hand. After total chaos, it could be a sense of relief and something to
“The information has been fractioned and we missed the whole, something overall.” (father fam 4 int. 4)
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The parents often found the physician to be the most important person in providing complex medical information, but the experiences varied, due to who they met. It sometimes happened that the parents were aware of the physician’s attitudes to certain questions and thereby orchestrated which physician they would like to meet. “If we want a different answer, we know who we should ask, because the doctors have different views on the risk of infections.” (mother fam 1 int. 4) It was not a matter of course for the families to understand the medical language, because physicians explain in various ways. The medical staff is often familiar with and use medical conceptions that were confusing and not comprehensible to the families. Therefore, the situation not always was seen as confident and safe enough to expose their unawareness. Assessing what and how much information the families are able to take in becomes vital. “I could partly understand the information, but there were a lot of medical terms at the start that were over my head.” (mother fam 3 int. 1) Information is very much about arranging the meeting, and sometimes this did not turn out well, according to the families. Several questions that needed answers came up after the first heavy message about the seriousness in the child’s diagnosis. Some of the questions were not possible to answer, but to be there and give the opportunity through listening seemed vital. “It is not OK to have a doctor who cannot face my questions; we need answers.” (mother fam 5 int. 2) ”The doctor speaks in medical terms and we hesitate to ask again because we feel stupid.” (father fam 6 int. 3) Discussion The aim of this study was to highlight parents’ views on information in childhood cancer care. The study was conducted for a period of one year, after the time of the child’s diagnosis. Meetings with the families on five occasions during this year provided an extraordinary opportunity to experience the parents’ individual adjustment to the situation, and monitor their development. Therefore, the qualitative approach seems to be appropriate in capturing the magnitude of this particular life situation. The findings in the present study point out an important perspective on the family situation concerning information. There are aspects of structure and time, as well as the emotional effect, to consider from this phenomenon. In the present study, parents had different experiences concerning how much information they received and when it was provided, but they generally adjusted to the situation. Parents preferred staff members to be distinct and open when speaking about roles and expectations, and these are important aspects to consider for positive cooperation (Shields et al., 2003; Ygge and Arnetz, 2004). This was also discovered by PykeGrimm et al. (1999), in which parents pointed out the importance of receiving clear messages, but questioned what and how much information they needed. According to Mack et al. (2006), nearly all parents wanted as much information as possible about the diagnosis and treatment and more than one-third of the parents wanted more information about the prognosis than they had received.
The results from the present study imply that when the parents were emotionally prepared and had increasingly more questions, staff members did not have the time to accommodate them. The information the parents initially received was crucial if they were to gain confidence and feel secure, and the results point to an urgent need for improvement in this area. The families described that the information was not always well adjusted to their needs, contrary to the physicians’ opinions. Sometimes they had to wait for answers until the next meeting at the outpatient ward, and sometimes the nurses provided the information. This is similar to findings from several studies, whereby parents often seem to experience a lack of information and unclear expectations (Coyne, 1995; Callery and Smith, 1991). Despite the fact that most parents were satisfied with their experience of receiving the diagnosis, there is a still a need to improve communication in this matter between medical staff and families. One particular problem in paediatric cancer is that the caring measures are carried out by large teams that include a variety of health professionals, each with a different type of relationship to the child and family. The diversity of viewpoints represented and the structural, cultural and even architectural or facility-related factors affecting the ways these professionals interact can affect the quality of communication between them (Sobo, 2007). This is similar to findings in the present study. It seems important to make it clear that that the parents are supposed to become very important members of the team from the very beginning. Including all the basic information about diagnosis, treatment and other things, this must be communicated to them. But above all, a dialogue has to be maintained, and this seems to be a major problem. Vital questions cannot be postponed until the next meeting, and serious talks cannot be neglected and then finally held in the hallway. Furthermore, Hallström et al. (2002) point out that seeking information is one of the most important methods used by parents to cope with the stressful event of having an ill child, as it provides a sense of control. This is congruent with the findings of Yiu and Twinn (2001), who point out the importance of providing relevant information to parents in a difficult situation, which might contribute to increased control and reduced insecurity. This indicates the need for education in terms of communication for nurse students. The results from the study thereby point out family-focused care as more rhetoric than reality in childhood cancer care, which could improve with intensified communication between staff and parents. Lack of dialogue is described by Corlett and Twycross (2006) as a common problem that reduces parents’ possibilities to participate in the care of their child. They feel a loss of the power and prevention they would likely receive through the important dialogue with the nurses. There are far more problems than just the aspect of time and availability when cultural differences and language obstacles occur as well. In this situation, there are even more demands on the staff to ensure that there is flexibility in organizational and treatment issues and furthermore to adjust their caring efforts to each child’s and family’s needs, beliefs and cultural values (Eichner and Johnson, 2003). The results of the present study indicate that it is a matter of various aspects like cultural identity and the extent to which the information is internalised and understood. Aspects of cultural differences are discussed by Pergert et al. (2007) concerning obstacles in transcultural meetings that might result in consequences like unequal care. Considering cultural identity, education, attention and empathy is necessary to be able to meet expectations from parents, even at times of organizational limitations in the time schedule.
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Conclusion
References
The matter of information is a complex and demanding issue for the persons involved. Sometimes it was easy to follow the mould, and the repeated information was successfully obtained by and comprehensible for the families. In other situations problems initially occurred, when the families were given complex information about diagnosis and treatment, due to defence mechanisms and mental obstacles within the families. As the treatment proceeded the comprehension process for the parents seemed to become easier, both intellectually and emotionally. On the contrary, the opportunity to receive information seemed to occur less and less frequently. It becomes a paradox that when the parents were receptive and prepared, there was not enough time for a meeting. The initial information was described by the parents as very traumatic and not possible to take in, to a great deal. Still, being informed created confidence and helped them to regain control. Time was of great importance for total comprehension, from the first serious talk until later when they became more familiar with the situation. It is vital to provide information with the receiver in mind, as the prerequisites for understanding and internalising information seemed to vary due to language, culture and social background. There has to be an improvement regarding the aspects of what, when and how information is provided. In order to become a “member of the team”, the family needs better support and more distinct instructions. Physicians, nurses and other staff members must respect the family’s vulnerability and their preferences concerning the aspect of information. This study reflects the parents’ descriptions of their experiences concerning information. Further studies will highlight their participation as well as the medical professionals’ perspective from both information and participation, and interaction between the staff and the families.
Beltrao, M.R., Vascocelos, M.G., Pontes, C.M., Albuquerque, M.C., 2007. Childhood cancer: maternal perceptions and strategies for coping with diagnosis. Paediatrics 83 (6), 562e566. Callery, P., Smith, L., 1991. A study of role negotiation between nurses and parents of hospitalized children. Journal of Advanced Nursing 16, 772e781. Corlett, J., Twycross, A., 2006. Negotiation of parental roles within family-centred care: review of the research. Journal of Clinical Nursing 15 (10), 1308e1316. Coyne, I.T., 1995. Partnership in care: parents views of participation in their hospitalized child’s care. Journal of Clinical Nursing 4, 71e79. Eden, O.B., Black, I., MacKinlay, G.A., Emery, A.E., 1994. Communication with parents of children with cancer. Palliative Medicine 8 (2), 105e114. Eichner, J.M., Johnson, B.H., 2003. Family-centred care and the paediatrician’s role. Pediatriks 112, 691e696. Gustafsson, G., Heyman, M., Vernby, Å, 2007. Childhood Cancer Incidence and Survival in Sweden 1984e2005. Barncancer Epidemiologiska Forsknings Enheten vid Karolinska Institutet. Hallström, I., Runeson, I., Elander, G., 2002. An observation study of the level at which parents participate in decisions during their child’s hospitalisation. Nursing Ethics 9, 202e214. Mack, J.W., Wolfe, J., Grier, H.E., Cleary, P.D., Weeks, J.C., 2006. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. Journal of Oncology 24 (33), 5265e5270. Neumann, W.L., 2006. Social Research Methods. Wisconsin, Pearson Education, Inc. Ow, R., 2003. Burden of care and childhood cancer: experiences of parents in an Asian context. Health Social Work 28 (3), 232e240. Parker, T.M., Johnston, D.L., 2008. Parental perceptions of being told their child has cancer. Paediatric Blood Cancer 51 (4), 531e534. Pergert, P., Ekblad, S., Enskär, K., Björk, O., 2007. Obstacles to transcultural caring relationships experiences of health care staff in paediatric oncology. Journal of Paediatric Oncology Nursing 24 (6), 314e328. Pyke-Grimm, D.e.g.n.e.r.L., Small, A., Mueller, B., 1999. Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study. Journal of Paediatric Oncology Nursing 16, 13e24. Sebrant, U., 2000. Organiserande och identitet. Academic Dissertation. Stockholm: University of Stockholm. (In Swedish) Shields, L., Kristensson-Hallström, I., O’Callaghan, M., 2003. An examination of the needs of parents of hospitalized children: comparing parents and staffs perceptions. Scandinavian Journal of Caring Sciences 17 (2), 176e184. Sobo, E.J., 2007. Good communication in paediatric cancer care: a culturallyinformed research agenda. Journal of Paediatric Oncology Nursing 21, 150e154. Ygge, B.M., Arnetz, J.E., 2004. A study of parental involvement in paediatric hospital care: implications for clinical practice. Journal of Paediatric Nursing 19, 217e223. Yiu, J.M., Twinn, S., 2001. Determining the needs of Chinese parents during the hospitalisation of their child diagnosed with cancer: an exploratory study. Cancer Nursing 24 (6), 483e489.
Conflict of interest statements There are no problems regarding this issue. The study was approved by the regional ethical committee.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Parents’ views on information in childhood cancer care Anne Kästel a, *, Karin Enskär b, Olle Björk c a
The Red Cross University College, Karolinska University Hospital, Solna, 17176 Stockholm, Sweden Department of Nursing Science, School of Health Science, Jönköping University, Sweden c Paediatric Oncology Unit, Karolinska Institute, Stockholm, Sweden b
a b s t r a c t Keywords: Childhood cancer Parents Information Understanding
Purpose: The aim of the study is to highlight parents’ views on information in childhood cancer care. Method: A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child’s illness. Results: If the parents’ needs were fulfilled, they were better equipped to handle the illness of their child, which is totally dependant on how the matter of information is dealt with. Information is a complex and demanding issue for the persons involved and the families’ views were divergent in this area. Sometimes they seemed to obtain the information successfully and sometimes there were great problems in this respect. Therefore their preferences must be considered. Conclusion: There has to be an improvement from the aspects of what, when and how information is provided. The major findings of this study indicate that the families need better support and more distinct instructions to be able to cope with the situation. Ó 2010 Elsevier Ltd. All rights reserved.
Introduction Child cancer care is becoming increasingly successful, and today 75% of all children diagnosed with cancer are cured; the treatment has become more successful through intensified therapy. The survival for most diagnoses has improved continuously, but the development has not been simple to achieve due to the pain and anxiety the treatment often causes (Gustafsson et al., 2007). Therefore, the families report various degrees of psychological stress, as the treatment for the sick children and its side effects are very trying (Ow, 2003). Experiencing a cancer diagnosis is thus emotionally devastating and it takes a great deal of energy for the whole family to adjust to the illness and the new situation. Parker and Johnston (2008) state that starting with the severe experience of finding out that your child has cancer it is vital how the information is communicated, which can have a lasting impression on parents receiving the news. Consequently, the control and power the families might achieve are greatly dependent upon how the aspect of information is handled. The diagnosis of a serious disease in a child is a stressing factor for healthcare workers who have to tell the parents about it (Beltrao et al., 2007). Furthermore, communication affects people’s factual understanding of the situations they are in and thus building * Corresponding author. Tel.: þ46 8 51773630, þ46 73 7592036(mobile). E-mail address: [email protected] (A. Kästel). 1462-3889/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2010.10.007
a good interpersonal relationship e one entailing mutual respect, trust and empathy e seems to be an essential prerequisite for satisfactory information exchange and collaboration. Communication of bad news is a two-way process that requires not only skilled medical staff but also a receptive audience. The emotional state of the parent determines his or her ability to hear and comprehend the information (Eden et al., 1994). According to Beltrao et al. (2007), three main themes occurred in maternal perceptions about their child receiving a cancer diagnosis, concerning attitudes and feelings, information as a support for coping and social support. The authors found that parents were satisfied when the conversation about the diagnosis was frank and open and when their privacy was respected, they were allowed time to express their emotions and their questions were answered. Aim The research question in this study aims to describe families’ experiences of information in childhood cancer care. Methods A qualitative method was appropriate for this study and has been chosen to allow us to understand the interaction between families and nursing staff. To fully comprehend why parents think and feel the way they do, it is necessary to be in the same setting and to share
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in discussions and talks with the families. Listening to their stories and conducting interviews allowed the family members to express their experiences (Sebrant, 2000). The study was conducted at a paediatric oncology ward, following up eight families, each with a child diagnosed with cancer, during the first year after diagnosis. Participants The families were selected using a qualitative way of working, intended to strive for variety among several factors. The families were thereby selected from certain criteria that had to be considered: the family constitution, the child’s age and sex, the child’s diagnosis and prognosis and the socio-economic situation. Eight families were chosen: five with Swedish background, one with a Nordic background, one Asian family and one family with a father from southern Europe. Educational background varied greatly, from highly educated to working class, as did the socio-economic situation. The children selected for the study, were diagnosed with various types of leukaemia and solid tumours of different levels of severity, because of the possible variety in impact on the parents’ experiences. There were five boys and three girls in the study, aged 2 months to 17 years. Setting The study was conducted at a paediatric oncology ward accommodating 14 children. The treatment periods are short and characterized by high intensity, with some variety due to diagnosis, after which the children are soon transferred to the outpatient ward. The medical staff is made up of registered nurses, registered nurses with specialist education in paediatric nursing, unregistered assistant nurses and physicians. Data collection Informal meetings with the families were done several times during the first year, in order to get a sense of the interaction in the ward context. This approach facilitated the understanding of the families’ views, as their situation and experiences change to a great extent, especially during the first year after the cancer diagnosis. In the same purpose talks and interviews were carried out on five occasions with both families and nursing staff (five interviews with eight families ¼ 40 interviews) spread out over the first year of their child’s illness, see Table 1. The interview questions were open ended with a focus on the parents stories and were planned overtime to follow the parents’ process from the time of diagnosis to the end of the first year. The parents described their initial experiences from the introduction to the ward, meeting the staff and onwards the communication and interaction. Follow-up interviews with a staff member were carried out after each interview and are reported elsewhere.
Table 1 Participants in each interview. Interview 1 Family Family Family Family Family Family Family Family *
1 2 3 4 5 6 7 8
Interview 2 Interview 3 Interview 4 Interview 5
Mother Father Mother þ father Mother Mother Father Mother Father Mother Mother Mother Mother Mother Father Brother* Mother
Father Mother Mother Mother Mother Father Father Sister*
Older sibling substituting for the parent in the family.
Mother Father Father Father Father Mother Mother Brother*
Father Mother Mother Father Mother Mother Father Sister*
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Data analysis All the interviews were audio taped and transcribed in their entirety. A content analysis was conducted as described by Neumann (2006). The transcripts were read several times to get a sense of the whole picture. Descriptive themes and subthemes were identified, and coding was done at the subtheme level. Discussions within the research team were held to reach consensus about the coding, and any discrepancies were resolved. Two main themes emerged from the results of the data analysis, concerning information and participation. The first, information, is described below and the second, participation, will be described in another publication. Validity and reliability In qualitative research, validity means truthfulness, but qualitative researchers are more interested in authenticity than truthfulness. Authenticity means giving a fair, honest and balanced account of social life from someone’s viewpoint (Neumann, 2006). Social research concerns interpretations of people’s notions and opinions that constitute the result, which leads to constructions by the researcher. Thus, the argument for relevance and usefulness in the results and interpretations becomes vital (Sebrant, 2000). Qualitative data is not imprecise or deficient but rather highly meaningful for qualitative researchers (Neumann, 2006). Reliability means dependability or consistency. Qualitative researchers believe that subject matter, and a researcher’s relationship to it, should be a process that evolves over time (Neumann, 2006). Ethical aspects Children with cancer and their families are extremely vulnerable and it is of great importance to consider basic ethical principals, such as the autonomy principal and the importance of volition, which was carefully considered in this study. The regional ethical committee at the Karolinska Institute, Dnr 04-1041/4, approved this study. Findings The aim of the study was to highlight the families’ experiences of information in paediatric oncology. There are two meeting parties, the family and the medical staff, and the findings are analysed from these parties separately. The statements from the families and the staff have been qualitatively analysed and the quotations chosen as particularly illuminating. One of the main themes that appeared when analysing the parents’ statements concerned information. The families views about information Initially, the parents have to come to an understanding of what is happening, and thereafter must be able to internalise the information. Once the information is internalised, the possibility emerges for the family to become involved and take on responsibility. The pattern that is gradually becoming visible from the empiric findings mainly concerns this theme. The matter of information, from the parents’ perspective, that has appeared from the empiric findings concerns realizing what is happening, and concerns what, when and how. These categories concern structure, time, emotions and personality: What e structure, when e time/availability, how e emotions, who e personality. The all-encompassing issue about information is what is informed. The information given is huge and concerns diagnoses,
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treatments and side effects, as well as basic practical information. This structure suits certain parents very well, but others less well. To bring about comprehension and create confidence is also about when and how the information is given. Time is an important aspect and needs to be available, but this is also applies to who is giving the information. The emotional aspect is vital to internalising information. This implies how the information is given and the extent to which a professional medical language is used, versus an understandable language adjusted to the receiver. The quotations below are cited with family number (fam) from 1e8 and the interviews (int) from 1e5. What Receiving information the instant it is available is described as a positive experience by the parents, but is sometimes more problematic, because they often need more time and prefer to be spared certain information. There are obvious differences in experiences, which could be connected to education level and reading habits but also emotional status. One family argued that no more information should be given than was asked for. “Perhaps they don’t need to give all the information the first” week; perhaps they could leave out some details. (mother fam 2 int 2) “The information is given rapidly, but we cannot take it all in and they over-inform about everything.” (mother fam 1 int 1) The importance of the physicians being available for questions is emphasized strongly, and the experience of having a great deal of information is often described as stressful. When there was room for questions, misunderstandings and faults often emerged, which on the other hand might cause extra pressure on the family to stay well informed. Certain situations led to frustration for families not finding the “right” person and thus giving up the attempt. A different phenomenon instead arose, whereby the families pitied the staff that was put under pressure. Their own anxiety was displaced, to avoid being seen as demanding. Sometimes it was described as pure panic to stop anyone, just to get an answer. It happened that discussion they had been promised never came up, and the family was left with a quick answer from the physician just passing by. The result could be unanswered questions and anxiety never being addressed. “Sometimes it is stressful and there might be misunderstandings because of the rush.” (father fam 4 int 2) ”It ended up in a quick talk in the hallway instead, so I gave up my questions and anxiety.” (mother fam 6 int. 4) Parents are under a great deal of pressure and stress before leaving the ward, and in this situation it is very important that the information is internalised. Leaving the ward for the first time after the début of their child’s disease was sometimes experienced as mere horror including a serious lack of preparation for the families. It is a demanding situation to take over responsibility and feel confident whenever it happens; therefore the parents’ confidence probably would increase with better preparation. In certain situations the information was not provided and the family had not at all realized the implications of leaving the ward. “I wondered if they sent us home because our daughter was so sick that she wouldn’t make it.” (mother fam 3 int. 3)
“Poor information before we went home, too much of a rush.” (father fam 2 int. 2) The families underlined the importance of written information, especially before leaving the ward. The situation varies depending on who is giving the information; verbal instructions are used occasionally and there is no official rule regarding written information. Avoiding verbal information concerning certain issues such as medication could reduce the stress level for the families, as there is great responsibility involved in handling the medication. “I need a paper to get it clear.” Perhaps it is necessary to have a distinct routine. If we can read there won’t be any mistakes.” (father fam 3 int. 4) A great change is in store when the child is transferred from the ward to the outpatient department. The space of time for questions and talks is limited in the new surroundings, and the experiences from this situation varied greatly. It is sometimes experienced as manageable and unproblematic, when an understanding of the disease and treatment has been achieved. But if the treatment and protocols are incomprehensible it is a difficult situation. At the outpatient department the children are scheduled at set intervals and there is thus no extra time for questions or thoughts when the time has run out for the visit. The longer time that has passed, the more complicated it is to persist with questions. It is described as a huge difference, from initially being showered with information to gradually having to seek information themselves. “The difference was huge at the outpatient department. At first we had a lot of information at the ward e now we must get the information ourselves. It does not feel easier with the questions now and having to ask for extra time.” (mother fam 6 int 2) Sometimes there is not enough time at the outpatient department, and certain information has to be given by phone. This particular situation is very unsatisfactory to the families. The experience of being listened to and confirmed became most important. “Information by phone e how serious is this? We become more and more critical and observant.” (father fam 7 int. 2) When How the families experienced the opportunity to ask questions, in addition to how their anxiety was met, varied greatly. There were also differences in how the families experienced the flow of information. Initially there were almost no limitations in space, but this lessened over time. There also were variations due to which person the family met. “We could ask about anything; Dr. A. was available during the first days.” (mother fam 2 int 1) “Dr. N. always takes his time and we felt confident in asking. He was there to calm us down.” (mother fam 3 int 1) At the outpatient department there is less available time for questions than at the ward, due to a different structure and schedule. The families were very understanding about the lack of time and took this as an organizational matter rather than being due to the person they met. Sometimes, however, the families
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reacted strongly to the fact that they did not receive the response or attention they needed. It was not an acceptable experience to have to wait until the next treatment event for information.
hold on to. The plans for treatment, cures and other factors important for the coming time, helped to reshape the order that the family had lost.
“There is not much time to discuss things here; it is unspoken that there is no time.” (mother fam 5 int 3)
“There were clear messages and relief. We had been to hell and had returned.” (father fam 1 int 2)
“Hard to get a chance to talk to the doctors, it is their working situation esomething has to do be done about that.” (father fam 1 int. 3)
On the other hand, they pointed out stressful situations with a great deal of insecurity and confusion. Too much information could cause them to lose control. Sometimes the best choice was not to provide a great deal of information in a short time.
Who The parents describe that the physicians give the essential medical information and that they play an important role. The nurse often has an interpreting function, is often under less stress and can confront the physicians in order to get details. The nurse is often closer to the families with a concrete presence due to her specific role, in matters like recurrent medical routines. The families draw extra confidence from the fact that the information can be repeated by the nurses as well as the assistant nurses. “The nurse can give answers to questions you normally ask the doctors about.” (brother fam 8 int. 1) “The doctors inform and the nurses check up.” (father fam 3 int. 2) The assistant nurses are an important group, supplying a great deal of basic practical information. They have closeness to the family that the other staff members do not have. “Respect for the doctors e more convenient to ask the assistant nurses.” (mother fam 8 int. 2) “The nurses were very helpful e we had a lot of questions and they had the time.” (mother fam 4 int. 3) A father described the assistant nurses as the hub and the spine of the ward, and this seems connected to building up confidence, due to time and availability. Every person on the staff has his or her special significance for the families, but the assistant nurses are important in a special way, spending a great deal of time in the patient room performing various tasks. How A common situation is how the parents describe the shock they felt when they first received the news of their child’s cancer diagnosis; it was about not having the capacity to internalise the message. The experience was so strong and difficult that they did not manage to take in the information. There could be certain fragments that were understood as the possibility of cure and recovery, but many details simply disappeared and were not grasped. “You remember nothing e they talked and talked.” (mother fam 4 int. 1)
“We are knocked out by all the information, .enormous insecurity.” (mother fam 5 int. 1) It seems to be very important how the information is presented. Sometimes the parents found the information level well adjusted to their own needs and circumstances, clear and unambiguous. The experience and sensitive ear from the informant seems quite vital, including the capacity to read the families and to individualize the information. “Sometimes we didn’t understand, but then they explained.” (father fam 5 int. 4) “We know that they give exhaustive answers.” (mother fam 2 int. 3) The views of the Asian family diverged from those of the other families in the study. They even stated that they ought to have been spared some of the details about complications involved with the treatment. Their idea was that a great deal of information might result in an increased negative experience. This seems to be an example of variations in culture. A connection between another type of knowledge and approach was thereby made. Medical explanations from the physicians are difficult to understand, and in their home country, information is never given straight to the patient but rather to the relatives. “They told us and it was awful and we had empty hearts; it was very hard.” (Mother fam 8 int 2) In this situation the families sometimes experienced the information as too extensive. A clear and distinct message could sometimes be understood as cold and insensitive. The difficulty in adjusting to every family’s needs from various presuppositions is obvious. It is a matter of overcoming linguistic obstacles, personal chemistry, cultural differences and other important aspects. “He was very cold and distinct; he wanted to say the worst. After that it can only be better.” (Sister fam 8 int 3) “It doesn’t change anything, but sometimes it matters how things are told.” (mother fam 6 int. 2)
“At first we didn’t understand anything, .hard to follow along and realize.” (mother fam 5 int. 1)
The families sometimes had difficulty grasping the essential parts of the information. They sometimes miss the overall point because of too many details. This was a recurrent dilemma, when a great deal of information was given and the ability and prepositions from sender and receiver varied.
After the initial phase of complex information, the parents described that they felt relieved, confident and safe on the one hand. After total chaos, it could be a sense of relief and something to
“The information has been fractioned and we missed the whole, something overall.” (father fam 4 int. 4)
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The parents often found the physician to be the most important person in providing complex medical information, but the experiences varied, due to who they met. It sometimes happened that the parents were aware of the physician’s attitudes to certain questions and thereby orchestrated which physician they would like to meet. “If we want a different answer, we know who we should ask, because the doctors have different views on the risk of infections.” (mother fam 1 int. 4) It was not a matter of course for the families to understand the medical language, because physicians explain in various ways. The medical staff is often familiar with and use medical conceptions that were confusing and not comprehensible to the families. Therefore, the situation not always was seen as confident and safe enough to expose their unawareness. Assessing what and how much information the families are able to take in becomes vital. “I could partly understand the information, but there were a lot of medical terms at the start that were over my head.” (mother fam 3 int. 1) Information is very much about arranging the meeting, and sometimes this did not turn out well, according to the families. Several questions that needed answers came up after the first heavy message about the seriousness in the child’s diagnosis. Some of the questions were not possible to answer, but to be there and give the opportunity through listening seemed vital. “It is not OK to have a doctor who cannot face my questions; we need answers.” (mother fam 5 int. 2) ”The doctor speaks in medical terms and we hesitate to ask again because we feel stupid.” (father fam 6 int. 3) Discussion The aim of this study was to highlight parents’ views on information in childhood cancer care. The study was conducted for a period of one year, after the time of the child’s diagnosis. Meetings with the families on five occasions during this year provided an extraordinary opportunity to experience the parents’ individual adjustment to the situation, and monitor their development. Therefore, the qualitative approach seems to be appropriate in capturing the magnitude of this particular life situation. The findings in the present study point out an important perspective on the family situation concerning information. There are aspects of structure and time, as well as the emotional effect, to consider from this phenomenon. In the present study, parents had different experiences concerning how much information they received and when it was provided, but they generally adjusted to the situation. Parents preferred staff members to be distinct and open when speaking about roles and expectations, and these are important aspects to consider for positive cooperation (Shields et al., 2003; Ygge and Arnetz, 2004). This was also discovered by PykeGrimm et al. (1999), in which parents pointed out the importance of receiving clear messages, but questioned what and how much information they needed. According to Mack et al. (2006), nearly all parents wanted as much information as possible about the diagnosis and treatment and more than one-third of the parents wanted more information about the prognosis than they had received.
The results from the present study imply that when the parents were emotionally prepared and had increasingly more questions, staff members did not have the time to accommodate them. The information the parents initially received was crucial if they were to gain confidence and feel secure, and the results point to an urgent need for improvement in this area. The families described that the information was not always well adjusted to their needs, contrary to the physicians’ opinions. Sometimes they had to wait for answers until the next meeting at the outpatient ward, and sometimes the nurses provided the information. This is similar to findings from several studies, whereby parents often seem to experience a lack of information and unclear expectations (Coyne, 1995; Callery and Smith, 1991). Despite the fact that most parents were satisfied with their experience of receiving the diagnosis, there is a still a need to improve communication in this matter between medical staff and families. One particular problem in paediatric cancer is that the caring measures are carried out by large teams that include a variety of health professionals, each with a different type of relationship to the child and family. The diversity of viewpoints represented and the structural, cultural and even architectural or facility-related factors affecting the ways these professionals interact can affect the quality of communication between them (Sobo, 2007). This is similar to findings in the present study. It seems important to make it clear that that the parents are supposed to become very important members of the team from the very beginning. Including all the basic information about diagnosis, treatment and other things, this must be communicated to them. But above all, a dialogue has to be maintained, and this seems to be a major problem. Vital questions cannot be postponed until the next meeting, and serious talks cannot be neglected and then finally held in the hallway. Furthermore, Hallström et al. (2002) point out that seeking information is one of the most important methods used by parents to cope with the stressful event of having an ill child, as it provides a sense of control. This is congruent with the findings of Yiu and Twinn (2001), who point out the importance of providing relevant information to parents in a difficult situation, which might contribute to increased control and reduced insecurity. This indicates the need for education in terms of communication for nurse students. The results from the study thereby point out family-focused care as more rhetoric than reality in childhood cancer care, which could improve with intensified communication between staff and parents. Lack of dialogue is described by Corlett and Twycross (2006) as a common problem that reduces parents’ possibilities to participate in the care of their child. They feel a loss of the power and prevention they would likely receive through the important dialogue with the nurses. There are far more problems than just the aspect of time and availability when cultural differences and language obstacles occur as well. In this situation, there are even more demands on the staff to ensure that there is flexibility in organizational and treatment issues and furthermore to adjust their caring efforts to each child’s and family’s needs, beliefs and cultural values (Eichner and Johnson, 2003). The results of the present study indicate that it is a matter of various aspects like cultural identity and the extent to which the information is internalised and understood. Aspects of cultural differences are discussed by Pergert et al. (2007) concerning obstacles in transcultural meetings that might result in consequences like unequal care. Considering cultural identity, education, attention and empathy is necessary to be able to meet expectations from parents, even at times of organizational limitations in the time schedule.
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Conclusion
References
The matter of information is a complex and demanding issue for the persons involved. Sometimes it was easy to follow the mould, and the repeated information was successfully obtained by and comprehensible for the families. In other situations problems initially occurred, when the families were given complex information about diagnosis and treatment, due to defence mechanisms and mental obstacles within the families. As the treatment proceeded the comprehension process for the parents seemed to become easier, both intellectually and emotionally. On the contrary, the opportunity to receive information seemed to occur less and less frequently. It becomes a paradox that when the parents were receptive and prepared, there was not enough time for a meeting. The initial information was described by the parents as very traumatic and not possible to take in, to a great deal. Still, being informed created confidence and helped them to regain control. Time was of great importance for total comprehension, from the first serious talk until later when they became more familiar with the situation. It is vital to provide information with the receiver in mind, as the prerequisites for understanding and internalising information seemed to vary due to language, culture and social background. There has to be an improvement regarding the aspects of what, when and how information is provided. In order to become a “member of the team”, the family needs better support and more distinct instructions. Physicians, nurses and other staff members must respect the family’s vulnerability and their preferences concerning the aspect of information. This study reflects the parents’ descriptions of their experiences concerning information. Further studies will highlight their participation as well as the medical professionals’ perspective from both information and participation, and interaction between the staff and the families.
Beltrao, M.R., Vascocelos, M.G., Pontes, C.M., Albuquerque, M.C., 2007. Childhood cancer: maternal perceptions and strategies for coping with diagnosis. Paediatrics 83 (6), 562e566. Callery, P., Smith, L., 1991. A study of role negotiation between nurses and parents of hospitalized children. Journal of Advanced Nursing 16, 772e781. Corlett, J., Twycross, A., 2006. Negotiation of parental roles within family-centred care: review of the research. Journal of Clinical Nursing 15 (10), 1308e1316. Coyne, I.T., 1995. Partnership in care: parents views of participation in their hospitalized child’s care. Journal of Clinical Nursing 4, 71e79. Eden, O.B., Black, I., MacKinlay, G.A., Emery, A.E., 1994. Communication with parents of children with cancer. Palliative Medicine 8 (2), 105e114. Eichner, J.M., Johnson, B.H., 2003. Family-centred care and the paediatrician’s role. Pediatriks 112, 691e696. Gustafsson, G., Heyman, M., Vernby, Å, 2007. Childhood Cancer Incidence and Survival in Sweden 1984e2005. Barncancer Epidemiologiska Forsknings Enheten vid Karolinska Institutet. Hallström, I., Runeson, I., Elander, G., 2002. An observation study of the level at which parents participate in decisions during their child’s hospitalisation. Nursing Ethics 9, 202e214. Mack, J.W., Wolfe, J., Grier, H.E., Cleary, P.D., Weeks, J.C., 2006. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. Journal of Oncology 24 (33), 5265e5270. Neumann, W.L., 2006. Social Research Methods. Wisconsin, Pearson Education, Inc. Ow, R., 2003. Burden of care and childhood cancer: experiences of parents in an Asian context. Health Social Work 28 (3), 232e240. Parker, T.M., Johnston, D.L., 2008. Parental perceptions of being told their child has cancer. Paediatric Blood Cancer 51 (4), 531e534. Pergert, P., Ekblad, S., Enskär, K., Björk, O., 2007. Obstacles to transcultural caring relationships experiences of health care staff in paediatric oncology. Journal of Paediatric Oncology Nursing 24 (6), 314e328. Pyke-Grimm, D.e.g.n.e.r.L., Small, A., Mueller, B., 1999. Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study. Journal of Paediatric Oncology Nursing 16, 13e24. Sebrant, U., 2000. Organiserande och identitet. Academic Dissertation. Stockholm: University of Stockholm. (In Swedish) Shields, L., Kristensson-Hallström, I., O’Callaghan, M., 2003. An examination of the needs of parents of hospitalized children: comparing parents and staffs perceptions. Scandinavian Journal of Caring Sciences 17 (2), 176e184. Sobo, E.J., 2007. Good communication in paediatric cancer care: a culturallyinformed research agenda. Journal of Paediatric Oncology Nursing 21, 150e154. Ygge, B.M., Arnetz, J.E., 2004. A study of parental involvement in paediatric hospital care: implications for clinical practice. Journal of Paediatric Nursing 19, 217e223. Yiu, J.M., Twinn, S., 2001. Determining the needs of Chinese parents during the hospitalisation of their child diagnosed with cancer: an exploratory study. Cancer Nursing 24 (6), 483e489.
Conflict of interest statements There are no problems regarding this issue. The study was approved by the regional ethical committee.