Education Given to Parents of Children Newly Diagnosed with Acute Lymphoblastic Leukemia: The Parent’s Perspective Gemma Aburn and Meryn Gott M edical advancements and technology over time mean children diagnosed with cancer no longer face certain death. As recently as the 1940s, children with cancer were merely admitted to the hospital for clarification of diagnosis and given palliative treatment (Jacob, 1999). Today, a curative approach is used encompassing a variety of treatment protocols, and approximately 80% of children now survive the diagnosis and treatment of cancer (Smith & Hare, 2004). With so many children receiving treatment and given the nature of the treatment protocols now used, the focus of care has begun to move away from a purely inpatient setting. Thus, it is necessary to investigate how parents are educated and supported to provide nursing care for their child at home. Parents and caregivers need adequate information and advice prior to discharge as recognizing and acting upon simple signs, such as a fever, can mean life or death for a child with acute lymphoblastic leukemia (ALL) (Leukemia & Blood Cancer, 2009). The overwhelming nature of diagnosis of a childhood cancer is well reported within the literature. Understandably, it can be a period of extreme stress for parents (Dahlquist et al., 1993; Masera et al., 1997; Patistea, Makrodimitri, & Panteli, 2000). A diagnosis of childhood cancer can often raise thoughts of uncertainty, Gemma Aburn, BN (Hons.), RN, is Professional Teaching Fellow; and a Staff Nurse, Starship Children’s Hospital, School of Nursing, University of Auckland, Auckland, New Zealand. Merryn Gott, PhD, MA, is a Professor of Health Sciences – Nursing, University of Auckland, Auckland, New Zealand. Over the last 30 years, diagnosis and treatment of childhood cancers have improved significantly due to medical research and advancements in technology. Increasingly, parents are taking on the role of providing “nursing” care for their children, including managing emergency situations as well as everyday treatment needs. This study investigated the perceptions and experiences of parents caring for newly diagnosed children with acute lymphoblastic leukemia (ALL) in relation to education given prior to the first discharge from hospital. Using a grounded theory approach, 12 parents of children with ALL from a tertiary pediatric hematology and oncology setting in New Zealand were interviewed using a semi-structured interview technique. Key findings of relevance to clinical practice include the importance of recognizing the emotional strain parents experience following diagnosis and the resultant impact upon how education is understood. Findings may also be applicable to other complex child health areas where education is provided, both in a local and international context. Understanding the family perspective is crucial to enabling clinicians to provide appropriate and informative education to children with ALL and their families. potential loss of life, and loss of hope for the future of families (Patistea et al., 2000). These factors can change the focus of family life to providing emotional support and care to the sick child, which interrupts the normal routine. This disruption can have a detrimental effect upon relationships within the family, between mother and father, parents and children, and sibling-to-sibling (Dahlquist et al., 1993; Jacob, 1999; Mikkelson, 1993). The family needs information promptly before treatment is initiated (Smith & Hare, 2004). However, information must be delivered within the context of the range of emotions parents experience at this time. It is important that health professionals recognize the initial stage of grief and adaptation a family will be experiencing, as well as the difficulties they are likely to encounter in managing a daunting situation in a foreign environment, such as a hospital (Lewis & Noyes, 2006). Such factors have an impact upon the family’s ability to take on board new information regarding treatment both at the time of diagnosis and further into the illness PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5 experience. In addition, most children want to be fully informed about their diagnosis, treatment, and prognosis, and want to be involved in decision-making, especially big decisions, such as palliative care (Ellis & Levanthal, 2007). When a child is diagnosed with a life-threatening illness, the entire family structure is altered, including the bond between siblings. Siblings can assume a variety of roles with each other, from mentor and supporter to comforter, protector, and socializer (Mikkelson, 1993). At the time of diagnosis, other family members may care for siblings, and the focus of family life can shift to caring and supporting the sick child. Providing siblings with support and an understanding of what is happening is vital (Mikkelson, 2004). Given the feelings of uncertainty and impending death the child and family often have at time of diagnosis, it is vital that health professionals are able to manage these fears through support and empowering individuals with appropriate levels of education (Luker et al., 1995). The literature highlights a number of factors that may 243 contribute to effective education of patients and their families (Fant, Clark, & Kemper, 2005; Glenton, 2002; Leydon et al., 2000). Over time, patient populations have identified barriers to education, such as the use of medical jargon (Glenton, 2002). However, parent experiences of and preferences for the receipt of information and education at time of diagnosis of a child with ALL remains an under-researched area. Currently, there are no existing published policies, protocols, or criterion within pediatric hematology and oncology regarding parent education or provision of information. The aim of this study was to address the following research question: What are the perceptions and experiences of parents caring for newly diagnosed children with acute lymphoblastic leukemia in relation to education given prior to the first discharge from hospital? Methods The question outlined above was broad, reflecting the lack of previous research on this topic. A qualitative methodology was therefore appropriate for the study (Bryman, 2008). The desire to generate a participant perspective also led to the decision to adopt principles of grounded theory (GT) in this exploratory study (Charmaz, 2006; Glaser & Strauss, 1967). Semistructured interviews in person and via telephone were used to gather parent experiences and opinions. Sampling The population of interest identified was parents/caregivers of children diagnosed with ALL between February 1, 2009, and February 28, 2010. This timeframe was chosen to ensure participants had time to process their child’s diagnosis and use the information given to them, while still being recent enough to recall the experience. The following exclusion criteria were developed to protect the emotional well-being of families and prevent a conflict of interest given that the principal investigator was employed as a staff nurse within the unit studied: • Families who have received education during diagnosis and first hospitalization from the principal researcher of this study. • Families of deceased children due to the potentially sensitive nature of the reflection involved in the discussion for these families. 244 • Children who had not yet been discharged from hospital since diagnosis because the opportunity to use the education in the home and community setting had not yet occurred. Twelve families out of a possible 25 gave their informed consent to participate in the study. Of the 12 participants, seven were under the Shared Care service – where their care is shared between their local hospital and the tertiary center. Reasons for non-participation were not collected; however, it was evident that participants’ lack of literacy skills may have contributed to this in some situations. Ethnicity of patients was also identified using a short demographic questionnaire. The age of the patient and parent, the parent’s educational level, and the parent’s role (for example, mother, father, or caregiver) were also collected in this short questionnaire. The sample of participants was noted to be ethnically diverse and included participants from New Zealand European, New Zealand Maori, and a variety of other ethnicities. The interview guide was developed following a comprehensive review of the relevant literature (Aburn & Gott, 2011). Procedure The majority of participants (n = 8) were interviewed in person when in the hospital for their child’s clinic appointment or during an elective admission for chemotherapy. After several parents expressed a keen interest in participating in the study but found they had limited time available while in Auckland for clinic appointments, phone interviews were also offered. Families offered phone interviews had already expressed an interest in participating and were all from Shared Care centers. Four phone interviews were carried out. All interviews were audio recorded. Analysis The principal investigator transcribed word for word all interviews within 24 hours of each interview. When transcribing, codes were used to identify pauses between conversations and non-linguistic cues, such as sighs and laughter. This aided in the analysis of data collected by adding further meaning to the situation (Polit & Beck, 2006). Each transcript was re-read and cross-checked a second time with the audio recording to ensure accuracy. The next stage of the analysis involved identifying thematic categories or “coding.” A number of codes were developed in the opencoding stage from the data collected within this study from small ideas, such as the information sharing between families, to larger concepts, including personal experiences and emotions felt during the initial education period at diagnosis. During the open-coding process, theoretical codes are also developed (Artinian, Giske, & Cone, 2009). Theoretical coding is a more sophisticated level of coding in which possible relationships between earlier developed categories can be identified. In this study, all data were re-read after transcription and after coding. Re-reading or recoding old data may, in fact, “spark new ideas” and themes that were not seen in the initial process (Charmaz, 2006). The constant comparative method of analysis was also adopted within this study. Data were continuously compared to data, data with categories, categories with categories, and categories to concepts (Glaser & Strauss, 1967). Comparison throughout the analysis process enables more abstract ideas and theories to evolve, while at the same time, allowing the ability for sample size to be endlessly assessed throughout (Bryant & Charmaz, 2010; Charmaz, 2006; Glaser & Strauss, 1967). Results Of the 12 participants in the study, nine were mothers. There were varying levels of education among parents, with five participants having secondary education and five having completed education post-secondary school. The remainder of participants did not specify their education level. The children who were diagnosed with acute lymphoblastic leukemia were of a variety of ages, ranging from two to 14 years of age. “It Was Like Learning A Different Language”: The Parent Experience A common theme that emerged in every interview was the overwhelming nature of experiencing the diagnosis of a child with ALL, and having to learn very quickly about the disease and how to care for their child. All parents identified that dealing with the emotional impact of diagnosis made learning about leu- PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5 kemia and the care their child required for the next two-three years more difficult. At the time, I was basically taking everything on board for the family. Dad I think was still in shock, so I’ve become his bible…I didn’t know anything. I thought that was the end of the road. (Mother, 31 to 40 years of age, education status not specified) Many parents also identified their lack of knowledge about leukemia at the time of diagnosis. A number of parents highlighted that the general public perception of leukemia is very negative and discussed this in relation to their reaction to their child’s diagnosis. They reported that the public view of leukemia is that of grueling treatment and an imminent death: My biggest fear, as I say, was that my son was dying, I thought my son was dying, and I didn’t know that there was any real hope. (Mother, 31 to 40 years of age, education status not specified) Discussion with health professionals at the initial time of admission was reported to be vital because it dispelled fears about their child dying and meant parents could move forward and begin to understand their child’s diagnosis and treatment. Given the emotional impact of diagnosis, parents reported some difficulty in processing information in the initial stages, and therefore, described a journey through their development of knowledge: I mean, obviously now when you look back, and it’s really easy, and you think, oh yeah, you know whatever, but at the time it was probably a little bit overwhelming,…and I really struggled to understand what all the stages were about and the whole sort of…it was I guess, I think it was just information overload basically. (Mother, 31 to 40 years of age; education status not specified) Participants expressed mixed opinions as to the amount of information they wanted their children to know at the time of diagnosis. Many acknowledged the role of an individual assessment of the child in making the decision of what and when to tell their child. Parents commented that they wanted to have a choice as to how much their child was told: I do think that is something that has to be done 1:1 as to the development of the child and how much you as a parent want to tell your child. (Mother, 41 to 50 years of age, secondary education) Those who elected to discuss the diagnosis with their children felt nursing staff were supportive and informed the child of all procedures and basic information around diagnosis and treatment in a manner appropriate to the child. A number of parents articulated the role of the play specialist in providing information through medical play. I found the play therapist really beneficial, and the nurses were all really good, too. They always explained everything to my daughter, they… I’ve never had the impression….they always told my daughter what they were doing despite that she was only four, and I thought that was really good. (Mother, 31 to 40 years of age, secondary education) The general consensus among participants when reflecting upon the time of their child’s diagnosis was that the information and education they received met most of their needs as a family. Parents identified gaps in the process as being the need for more information around topics, such as food safety and infection; removal of irrelevant information from the “white education folder” (this folder is given to all families when their child is newly diagnosed with ALL; it contains information about the unit, their child’s condition, necessary care at home, and signs to monitor, indicating an emergency situation); and needing more time to sit and converse with nurses and doctors away from their child’s room. More information on food safety and where he can’t go to minimize infection. (Father, 41 to 50 years of age, secondary education) “There Were Two Nurses Who Had a Big Impact”: The Role Of the Health Professional Health professionals and nurses in particular have a major role to play PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5 in the education of patients and their families. This includes providing useful and appropriate information for the family to provide safe and effective care to the child in the community (Luker et al., 1995). Many parents reported they felt they could always have a discussion with both the medical and nursing teams, and they were given many opportunities to ask questions. Some participants even reported how important they felt being empowered and able to ask questions were to their understanding of the situation and impending treatment. Yes I did, and I still do, and I probably ask the same things all the time, but I just need to get it right in myself so I understand. (Mother, 41 to 50 years of age, secondary education) There was a definite perception from the participants that nurses played a significant role in providing support to both themselves and their child during the initial period of diagnosis. Many parents identified that consistent nursing care helped in making this difficult time much more manageable. There were two nurses that made a big impact on my husband and I, and were particularly helpful in those first 10 days… We happened to have her for a few consecutive days, and I just felt that she was like everybody, but she was genuinely working her ass off for my daughter. (Mother, 31 to 40 years of age, post-secondary education) It was evident in several interviews that the medical team, in particular the oncologists, were viewed as “the leaders” of the team. These parents also reflected they were the professionals who provided the education and knowledge needed about their child’s condition and care. However, when discussing nursing influences, all participants also mentioned the information they gained from nursing staff and how useful it had been throughout their child’s diagnosis and treatment. Although the guided conversation attempted to focus predominantly upon the nursing aspects of family education and information provision, parents frequently mentioned their experiences of communicating with 245 Education Given to Parents of Children Newly Diagnosed with Acute Lymphoblastic Leukemia: The Parent’s Perspective their oncologist and the medical team. There were mixed opinions of frustration, support, and expressions of a true partnership between parent and doctor. Parents who expressed frustration could often cite a specific situation that had annoyed them, and this commonly related to a lack of information or not “being kept in the loop.” Even in the last couple of weeks, we’ve had a couple of things where…my son…had blood tests done, and his medication protocol was supposed to have changed, and it didn’t. And the only reason I realized it should have been done was that I had to come in and get a script and then took a script to the pharmacy and it came back that the dosage was different…it ended up, he ended up his counts dropped like anything. You know, you sort of work around, well ok we don’t want this to happen again, so why don’t we…so you can come in and talk to the oncologist about it, and I find that the oncologists are really good. They’ll listen to what you say. The one thing that I don’t find is that they don’t give you the full story a lot of the time. So things are changing, and you’re not being told…it’s all of a sudden, well we weren’t told that. (Father, 41 to 50 years of age, post-secondary education) “It Was Kind of Comforting that My Son’s Disease Had A Folder”: Approach Of Education All parents could recall receiving the “white education folder,” and most reported having read it on at least one occasion. Parents recalled feeling apprehensive, while at the same time, very keen to receive their white folder. A few participants mentioned their anxiety and frustration in the wait to be given their copy. There were mixed opinions as to the value of this folder; some parents found it really beneficial and found comfort in the fact that information about their child’s treatment was collated in one place, while other parents didn’t find the “white folder” as valuable. Comments of there being too much irrelevant information, out of date information, or too much medical jargon were made. There was too much stuff that wasn’t really that relevant…There’s so 246 much to read in here that I thought it was maybe too much. There was some stuff that hadn’t been updated. (Mother, 31 to 40 years of age, post-secondary education) The general consensus among parents was that the “white folder” was a useful resource that could be of benefit to more families if information were in layman’s terminology, easy to understand, contained information of relevance at the time of diagnosis, and was updated on a regular basis. Some of it’s quite full of medical jargon, and that part of it is a bit hard to understand…there is also a lot of information in the white folder that I have never read because I just don’t want to scare myself. I thought, well, I will go there if I need to. (Mother, 41 to 50 years of age, secondary education) Other common formats parents described receiving information in were conversations with health professionals, informal discussions with fellow parents in similar situations, information sheets about specific treatments, drug safety information and resources, and literature from external agencies, such as the Child Cancer Foundation, Canteen (a support group for teenages living with cancer), and the Leukemia & Blood Cancer foundation. Parents reported that discussions with fellow parents and caregivers commonly occurred on the ward and in the clinic. There were divergent ideas about the benefit of such contact. However, most parents reported they found mixing with other parents most beneficial once they had overcome the emotional challenge of diagnosis. I heard stuff… This is where we get a lot of information, sitting around in the clinic and in the ward. For instance, I know one family, he’s got ALL, where everyone who comes into their house has to change clothes and shower. When I heard that I felt sick ‘cuz I felt like – oh I’ve never even thought of doing that where do they get that from. I didn’t actually feel like that’s random, that’s over the top…I felt physically sick that given the number of times she’s been sick with infections, maybe that’s what I should have been doing. (Mother, 31 to 40 years of age, post-secondary education) Resources from external agencies, such as the Leukemia & Blood Cancer foundation and the Child Cancer Foundation, proved very popular with parents. Most reported they were useful resources because they were parent-friendly with simple language and easy-to-understand layout. The patient and family resource “Acute Lymphoblastic Leukemia” produced by the Leukemia & Blood Cancer foundation was a highlight for many families. Children’s books supplied by Child Cancer Foundation were also identified as beneficial for both adults and children within the family. All parents were asked whether they had used the Internet to seek information. Some parents had used the Internet either through a ‘Google’ search or by visiting websites referred to them by other parents or hospital resources. There was a general consensus that the Internet was “scary” and a daunting way of gathering information; therefore, they recommended other parents not to use in the future. I found the whole Internet thing really scary. I did the stupid thing of putting T-cell ALL into Google… read about….gone onto a couple of websites and thought I don’t know whether I want to be here looking at this stuff, how reputable is it? I think there was in the white folder somewhere some websites you can look at, and then I found something that was grim about T-cell kids… and then I looked at it, and it was about 20 years old, and then I just went oh I’m not going to do the Internet. (Mother, 31 to 40 years of age, post-secondary education) There were two parents who reported that they used the Internet to search for treatment provided in other units around the world to compare the treatment their child was receiving. These parents identified that they used this information to make informed choices for their child in discussion with their child’s primary oncologist. There were also parents who reported not using the Internet in the initial phase of diagnosis and treatment. This was mainly as a result of discussion with other parents who were further into treatment who recommended not seeking PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5 Internet information based on their personal experiences where they were “scared” by information they found in the initial stages: Early on, one of the parents here gave me a bit of advice that he started looking up on the Internet, and he got side-tracked down another path and another path, and wasn’t really sure with medical jargon being used what he was looking at so he… advised me not to go down this track and get lost looking at some totally different thing and get all worried about that. (Father, 41 to 50 years of age, secondary education) Discussion Throughout the interviews, the immense stress and overwhelming nature the diagnosis placed on both parents and the family system as a whole were emphasized. This was also reflected in the literature discussed above (Dahlquist et al., 1993; Masera et al., 1997; Patistea et al., 2000). All parents reflected on how difficult the initial diagnosis was for them and how the general public perception of leukemia as meaning imminent death had an impact on them at this time. A number of families reported feeling they had a lack of understanding of their child’s diagnosis and treatment in the initial hospital admission because they could not absorb information due to the shocking and overwhelming nature of the diagnosis. However, all highlighted that over time, once the shock of the diagnosis dissipated and the family experienced more treatment, they acquired further knowledge. A few parents even mentioned they now felt like “experts” on their child’s diagnosis and care. Grootenhuis and Last (1997), and Kerr, Harrison, Medves, and Tranmer (2004) describe a similar journey in parents of child cancer patients to that reported by the parents in this study. All parents discussed the extent to which information should be provided to the child diagnosed with ALL and their siblings. The general consensus from parents was that this had to be assessed on an individual basis. It is commonly assumed as adults that we know best what a child does or does not need to know about diagnosis or future treatments; often, providing very little information to a child is seen as protecting their wellbeing and welfare (Sartain, Clarke, & Heyman, 2000). Parents who discussed the need for an individually tailored approach to providing information to children felt the resources they received from the Child Cancer Foundation and the support from ward-nursing staff were sufficient to help them manage their child’s needs. Parents on the whole felt they were well supported by staff and had the ability to ask questions or have a discussion with the health professionals involved in the child’s care at any time. When reflecting upon the role of health professionals in the education process, parents frequently referred to the medical team and particularly the oncologists as being the superior “partners” in the education process. This is not surprising given that the public is known to view medical specialists as the elite of medicine and hold great faith and trust in them (Irvine, 2001; Rivett, 1998). A number of parents reported that they had appreciated being cared for, and in particular, receiving education and information from the same nurse for the first few days following their child’s initial admission. They felt this continuity of care was beneficial for both themselves and their children. This model of practice is commonly known as primary nursing and has been researched in practice all over the world. Although a specific model of primary nursing is not currently used within the unit studied, it is widely recognized that this model is advantageous to the success of education and discharge planning with children who have chronic illness or complex care needs (Bloomquist & Lewis-Hunstiger, 1978; Collinson, 2008; Gatford, 2004; Lewis & Noyes, 2006; Stephens, 2005). Parents highlighted that the format of education, the resources they were given, and the time at which the information was provided all affected the adequacy of the education process and their overall experience of the period of diagnosis. A common theme that emerged through the interviews related to the use of the “white education folder.” All parents reported receiving a folder. However, there were mixed opinions as to the efficacy of this format of information, and many felt the content was “full of medical jargon,” “out of date,” and “irrelevant.” This is in line with previous research that has identified that patients value information written in easily accessible language (Glenton, 2002). PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5 Conversations with health professionals also featured highly on the most useful ways to present information, although a large number of parents valued having written information as well because when they had a quiet opportunity, they could read back through it themselves. This finding supports literature undertaken in the neonatal population (Johnson, 1999). Most parents reflected on the importance of user-friendly information and reported they felt the resources and literature supplied by external agencies, such as Child Cancer Foundation, most useful because they were written in layman’s terminology. The use of the Internet as a source of information was discussed with all parents. Many reported they did not use the Internet during the period of their child’s diagnosis after advice from fellow parents that information was “scary” and “not accurate.” Other parents mentioned they explored the Internet but very quickly gave up because of “grim” information or websites full of medical jargon. Most used a Google search process to find information, although many of these parents also reported using the list of websites provided in the white education folder (however, participants mentioned this list was very out of date). Implications for Clinical Practice Many parents involved in this study reported their interest in participating was based on their belief that their contribution could help families who “follow in our footsteps.” In considering the needs of future groups of parents with children newly diagnosed with ALL, parents shared specific areas of education they felt could be improved to aid better understanding of the disease and their child’s treatment. The greatest area highlighted by participants was the need for information in layman’s terms and the removal of irrelevant information, such as return to school details, from the education folder. Other recommendations related to the need for further information around specific topics. It is important to note when reflecting on gaps parents identified, individual factors can affect the amount of information a parent feels is needed. These factors can include, but are not limited to, previous education of the parent, occupation, and 247 Education Given to Parents of Children Newly Diagnosed with Acute Lymphoblastic Leukemia: The Parent’s Perspective previous experience of family illness and hospitalization (Luker et al., 1995). The findings from this study will be disseminated back to policy makers and clinicians working within the unit studied to ensure they inform policy and protocol development within this area. A particular recommendation will be that parent education in the future is standardized across all nursing staff. These findings will contribute to current education practices and help ensure parents have the confidence to provide safe and effective care to their child in the home environment. Providing education to parents of children newly diagnosed with ALL is a crucial nursing role within children’s hematology and oncology. With the shift to more care being provided in the community, it is increasingly important to assess how parents are educated to provide safe and effective care to their children. Parents expressed a variety of views; however, the overall perception obtained was that parents were generally satisfied with the education they received. Some gaps identified by parents included the need for more discussion time with health professionals, less medical jargon in written information, and an up-to-date and reliable list of Internet websites. Parents also reported that they wished to have more of a partnership role with health professionals and appreciated continuity of care during their initial admission. seeking behavior in a variety of patient populations, for example women with breast cancer (Leydon et al., 2000; Luker et al., 1995; Wilson, 1999). It would be interesting to draw upon the models and theoretical constructs developed with the population studied in this research to further understand the education and information-related needs of parents. Future Research Aburn, G., & Gott, M. (2011). Education given to parents of children newly diagnosed with acute lymphoblastic leukemia: The parent’s perspective. Journal of Pediatric Oncology Nursing, 28(5), 300-305. Artinian, B.M., Giske, T., & Cone, P. (2009). Glaserian grounded theory in nursing research: Trusting emergence. New York, NY: Springer Publishing Company. Bloomquist, L.M., & Lewis-Hunstiger, M.J. (1978). To care for the child at home: Discharge planning for the child with leukemia. Cancer Nursing, 8, 303-308. Bryant, A., & Charmaz, K. (2010). The Sage handbook of grounded theory. London: Sage Publications. Bryman, A. (2008). Social research methods (3rd ed.). Oxford: Oxford University Press. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage Publications. Collinson, J. (2008). Discharge planning of children with complex needs after longterm hospitalization [unpublished manuscript]. Auckland, New Zealand. This study has identified a significant need for additional research and future research directions in relation to the education of parents of children diagnosed with ALL. The potential for further research to be completed in this area is wide and varied. Undertaking additional research with parents and caregivers could usefully inform the development of themes identified in this study. Similarly, it would be of interest to investigate parent perceptions and experiences of education and information provision with other groups of children with complex care needs. In addition, it would be interesting to explore staff perceptions of the education process, as well as the perceptions of children themselves (both the patient and their siblings). Finally, a significant body of research has been carried out investigating models of information248 Strengths and Limitations This study adds new knowledge and understanding to issues that have not been addressed in detail in the literature (Aburn & Gott, 2011). However, several limitations must be acknowledged. First, the sample size was relatively small, although this is not problematic in relation to the principles of grounded theory (Charmaz, 2006). Moreover, the sample was relatively diverse, although there was a significant over-representation of mothers, with only three fathers participating. In most cases this reflected the fact that the mothers acted as the child’s primary caregiver. Twenty-five families were initially invited to participate; however, only 12 of these responded positively to the invitation. As discussed above, poor response could have been related to the literacy levels of some parents. A further potential weakness of the study is that due to time constraints, data were not verified through feedback to participants (Polit & Beck, 2006). References Dahlquist, L.M., Czyzewski, D.I., Copeland, K.G., Jones, C.L., Taub, E., & Vaughan, J.K. (1993). Parents of children newly diagnosed with cancer: Anxiety, coping & marital distress. Journal of Pediatric Psychology, 18(3), 365-376. Ellis, R., & Leventhal, B. (2007). Information needs and decision making preferences of children with cancer. PsychoOncology, 2(4), 277-284. Fant, K.E., Clark, S.J., & Kemper, A.R. (2005). Completeness & complexity of information available to parents from newborn– screening programs. Pediatrics, 115, 1268-1272. Gatford, A. (2004). Time to go home: Putting together a package of care. Child: Care, Health & Development, 30(3), 243-246. Glaser, B.G., & Strauss, A.L. (1967). The discovery of grounded theory. Chicago: Aldine Publishers. Glenton, C. (2002). Developing patient– centred information for back pain sufferers. Health Expectations, 5, 319-329. Grootenhuis, M.A., & Last, B.F. (1997). Adjustment & coping by parents of children with cancer: A review of the literature. Supportive Care in Cancer, 5, 466-484. Irvine, D. (2001). The changing relationship between the public and the medical profession. Journal of the Royal Society of Medicine, 94, 162-169. Jacob, E. (1999). Making the transition from hospital to home: Caring for the newly diagnosed child with cancer. Home Care Provider, 4(2), 67-73. Johnson, A. (1999). Do parents value and use written health information? Neonatal, Paediatric and Child Health Nursing, 2, 3-7. Kerr, L.M.J., Harrison, M.B., Medves, J., & Tranmer, J. (2004). 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