Konstantina Poursanidou and Philip Garner
The Nottingham Trent University, e-mail: Konstantina.Poursanidou@ntu.ac.uk

Alan Watson and Roger Stephenson
Nottingham City Hospital

Paper presented at the British Educational Research Association Annual Conference, Heriot-Watt University, Edinburgh, 
11-13 September 2003

This paper reports on a study that sought to use the viewpoints of key health professionals in order to i) map difficulties at school for children with chronic renal failure (renal transplants), ii) investigate the enabling/disabling features of educational provision currently made for them, iii) identify the support necessary to promote their effective educational and social inclusion, and iv) explore issues of communication/liaison between health and education staff (inter-agency collaboration). The study encompassed elements of "action research" methodology and used qualitative methods of data collection. Individual semi-structured interviews were undertaken with consultant paediatric nephrologists and specialist nurses in four Paediatric Renal Units in northern England in the period January-March 2003. The paper draws on interview material in order to illustrate and discuss key issues and areas of concern identified by the study participants, as well as to consider implications of these issues for practice.

The education of children with chronic medical conditions (including renal failure) has not been a topic for concerted research attention (Bolton, Closs and Norris, 2000; Lightfoot, Wright and Sloper, 1999; Bailey and Barton, 1999), notwithstanding that such conditions affect a considerable proportion of school children, amounting to 10-15% (Eiser, 1993). The focus of existing research has mainly been on issues of psychosocial and behavioural adjustment, as well as on family functioning among children with chronic illnesses (Eiser, 1993; Spirito, DeLawyer and Stark, 1991). Hence, there are relatively few studies (completed in the United Kingdom and the U.S.A) that have focussed directly on educational dimensions of chronic health conditions (including renal failure) in children. The studies in question have documented crucial barriers to the education of children with chronic health conditions, and charted gaps in the educational provision available for them (Lightfoot, Wright and Sloper, 1998; Bolton, 1997; Norris and Closs, 1999; Closs, 2000; Larcombe, Walker, Charlton et al., 1990; Lynch, Lewis and Murphy, 1992; Fowler, Johnson and Atkinson, 1985).

More specifically, these studies have identified four broad areas of concern in the school lives of children with chronic medical conditions. The first area of concern involves academic problems mainly connected with

• frequent and long absences from school resulting in considerable gaps in learning (discontinuity of education);

• difficulties with catching up on missed work on return to school following periods of absence; and

• resulting underachievement.

The second major area of concern relates to wider aspects of social integration and inclusion, exemplified by

• exclusion from a school's extracurricular activities;

• peer relationship difficulties, including bullying; and

• problems in relationships with school staff, associated with an apparent lack of awareness and understanding of the psycho-educational implications of chronic illness in children.

Emotional/psychological issues represent a third set of important factors that may place the education of children with chronic medical conditions at risk. Such issues include low motivation for school work, as well as worries and anxieties that typically relate to academic and social difficulties surrounding re-integration into school following absence. Finally, a fourth aspect of school life that may be problematic for children with chronic illnesses, is the management of their medical needs in school on a day-to-day basis.

As regards gaps in educational provision for children with chronic illnesses, existing literature has consistently documented, among others, issues of communication and liaison between families, educators (hospital/home tutors and mainstream school teachers) and health professionals, as well as issues of co-ordination of educational support. Furthermore, the literature in question has consistently highlighted the critical importance of teachers' awareness and understanding of their pupils' special health needs and of the impact of chronic illness on the pupils' emotional, social and educational functioning (Mukherjee, Lightfoot and Sloper, 2000; Mason, O'Sullivan and Cullen, 2000; McFarlane, 2000; Hassard, 2000).

It is essential to note here that existing studies addressing educational issues in children with chronic medical conditions (see above) have mainly investigated the perspectives of the children, their parents and their teachers, whereas the views of health professionals-key people involved in the children's lives and care-are largely missing (cf. Mukherjee, Lightfoot and Sloper, 2000). The few studies (completed in the United Kingdom) that have explored health professionals' views on the education of children with chronic illnesses, have focussed largely on issues of communication/collaboration between health and education staff (Mukherjee, Lightfoot and Sloper, 2002; Farrell and Harris, 2003).

More specifically, a qualitative study was carried out in one NHS Trust in England with a purposive sample of health staff from the entire spectrum of professionals who have the responsibility for meeting the needs of children with a chronic illness or physical disability in mainstream schools (Mukherjee, Lightfoot and Sloper, 2002). Wide variation was found in the extent to which health professionals communicated with school staff. Furthermore, the research participants highlighted a number of sources of difficulty in communication between health and education staff, including i) the practical difficulties of arranging meetings linked to the limited availability of time for health and school staff that could be used for liaison purposes, ii) lack of knowledge about others professionals' roles and responsibilities with regard to children with a chronic illness or physical disability, iii) a school ethos that was perceived as non-supportive with regard to pupils with special health needs, iv) issues of patient confidentiality, and v) problems in the flow of communication within health services (issues of intra-agency communication). Similarly, a study investigating communication between Health and Education Services (in England and Wales) in the area of provision for children with speech and language needs, showed that from the point of view of Speech and Language Therapists, difficulties in working collaboratively with class teachers were mainly attributable to i) a non-supportive school 'culture'/ethos with regard to Speech and Language Therapy and to special educational needs as a whole, ii) a lack of knowledge and understanding on the part of the teachers about the speech and language therapist's role and about the impact of a language difficulty on children's learning, and iii) a lack of adequate time for liaison (Law, Lindsay, Peacey et al., 2000). The factors that were identified in the two aforementioned studies as likely to play a crucial part in inhibiting effective communication/collaboration between health and education staff, have been consistently documented in the literature on inter-professional/inter-agency collaboration in the area of working with vulnerable children and families (Easen, Atkins and Dyson, 2000; Roaf, 2002; Dyson, Lin and Millward, 1998; Band, Lindsay, Law et al., 2002).

In the opening paragraph of this paper, it was pointed out that there is a relative dearth of educational research on chronic medical conditions in children at large. In the case of children with chronic renal failure (including children with renal transplants) specifically, the dearth in question has been particularly pronounced. Research with these children and their families has focussed primarily on psychosocial functioning and adjustment (Shaben, 1993; Postlethwaite, Garralda, Eminson et al., 1996; Soliday, Kool and Lande, 2000; Fielding and Brownbridge, 1999; Brownbridge and Fielding, 1991; Reynolds, Garralda, Postlethwaite et al., 1991; Douglas, Hulson and Trompeter, 1998; Brownbridge and Fielding, 1989). As a result, there are relatively few existing studies addressing aspects of school functioning in this group of children (Oomen, Hulstijn-Dirkmaat, Braun et al., 2000; Lawry, Brouhard and Cunningham, 1994; Garralda, Jameson, Reynolds et al., 1988; Fukunishi and Honda, 1995; Fukunishi and Kudo, 1995; Hobbs and Sexson, 1993; Beadles, Stephenson and Watson, 1997; Poursanidou, Garner, Stephenson et al., 2003). Moreover, the studies in question have drawn almost exclusively on quantitative data, whereas qualitative methodologies have been scarcely used. On the whole, the findings of these studies suggest problems in various areas of school functioning for children with chronic renal failure, including school attendance, cognitive functioning and academic attainment, behavioural adjustment, as well as relationships with school peers.

In summary, existing literature points to the need for further research on the education of children with chronic renal failure and chronic medical conditions at large, in view of the paucity of such research. There also seems to be a particular need for further research on health professionals' perspectives, when it comes to the education of children with chronic illnesses (including renal failure), considering that health professionals' views are largely missing. Moreover, given that studies concerning the education of children with chronic renal failure have used almost exclusively quantitative data, there seems to be a need for a more central role for qualitative approaches in researching the educational experiences of these children. Such approaches are able to explore first-hand-and in their full complexity-the educational experiences of children by using the 'voices' of those who are most involved in their education and care (cf. Bolton, Closs and Norris, 2000). The present study sought to partially fill these gaps in the research literature.

The present study built on previous research on the educational experiences of children with chronic renal failure (renal transplants), which focussed on a Paediatric Renal Unit in Nottingham, England with its model of service and educational policies/strategies as the context of the investigation (Poursanidou, Garner, Stephenson et al., 2003). The (previous) research in question i) identified difficulties and problems in the school lives of children following renal transplantation, ii) evaluated the educational provision made for them, and iii) explored their support needs in relation to school. The research also investigated issues of educational and social support for these children's parents, as well as issues of communication/liaison between health and education staff (inter-agency collaboration). The research drew upon the perspectives of kidney-transplanted children attending the Nottingham City Hospital Paediatric Renal Unit as outpatients, their parents and their teachers in mainstream schools.

The main aims of the present study were to use the viewpoints of key health professionals in order to:

1. map difficulties at school for children with chronic renal failure (renal transplants);

2. investigate the enabling/disabling features of educational provision currently made for them;

3. identify the support necessary to promote their effective educational and social inclusion; and

4. explore issues of communication/liaison between health and education staff (inter-agency collaboration).

Furthermore, the present study sought to compare and contrast the models of service and educational policies/strategies used by the Paediatric Renal Unit in Nottingham (see above) with those used by a sample of four other Paediatric Renal Units in northern England.

Research strategies/Methods of data collection and analysis

The present study encompassed elements of 'action research' methodology, considering that i) it involved collaboration between educational researchers and education and health professionals from Nottingham Trent University and Nottingham City Hospital (England), and ii) it had an action basis, as it sought to raise awareness and provide professional development information to education professionals who encounter children with chronic renal failure in non-medical settings.

The study used qualitative methods of data collection, namely individual semi-structured interviews with consultant paediatric nephrologists and specialist nurses during visits to four Paediatric Renal Units in northern England in the period January-March 2003. The interviews took between 45 and 60 minutes and were tape-recorded. It is essential to note here that interviews were conducted upon obtaining the participants' informed consent. The participants were initially approached and invited to partake in the study by a paediatric nephrologist from Nottingham City Hospital. Once informed consent had been obtained, the researcher contacted the participants via e-mail and then by telephone to identify a mutually convenient time for her visit to the respective Paediatric Renal Units. Last, the interviewees were provided with the appropriate guarantees of confidentiality and anonymity as regards the handling of the interview material.

Individual interviews with consultant paediatric nephrologists and specialist nurses in the four Paediatric Renal Units explored the following broad areas/topics:

1. difficulties/areas of concern in the school lives of transplanted children in their care with respect to school work/educational progress, participation in extra-curricular activities and relationships with school peers;

2. academic and social/emotional support offered to these children at school (issues of educational provision); examples of good practice; limitations/problems with respect to support at school and suggestions for improvement; and

3. communication/liaison between the health professionals and school staff; purposes and methods of liaison; issues of patient confidentiality in the liaison process; examples of good practice; areas of difficulty in communication/liaison with school staff and suggestions for improvement.

These broad areas/topics were also explored in the earlier study of the educational experiences of children with chronic renal failure/renal transplants (Poursanidou, Garner, Stephenson et al., 2003), which the present study built on (see above in Aims of the research).

Interview transcripts were content-analysed and examined for key emerging themes in progressive focus (Maykut and Morehouse, 1994). In the following section, interview material is drawn upon in order to illustrate and discuss some of the key themes/issues that emerged in the interview data analysis.

Analysis of interview data highlighted a number of key themes/issues that fall into three broad categories, namely i) difficulties/areas of concern at school for transplanted children, ii) support offered to transplanted children at school/issues of educational provision, and iii) communication/liaison between health professionals and school staff.

Health professionals in the present study identified four key areas of concern/difficulty in the school lives of transplanted children. They involve i) underachievement, ii) difficulties relating to school absence and re-integration into school following absence, iii) emotional issues concerning the children's worries and feelings of uncertainty about possible complications in their health condition, and iv) school peer relationship difficulties, including teasing/bullying linked largely to issues of physical appearance. The interview accounts that follow, are particularly illustrative of these areas of concern/difficulty.

"A small number of children will get transplanted before they need to go on to dialysis but the majority will be dialysed first and then they will get a transplant...and there is no doubt that children who have been on any form of dialysis, have quite a lot of unmet educational needs...and whenever it's been looked at, their educational performance has been less good than their age match group of children who don't have renal disease"

(Paediaric nephrologist)

"Particularly if the children have had haemodialysis beforehand, because they were missing such a lot of school, a lot of them will be behind with their work...and we have never formally assessed the achievements of our school children...but I think they would be probably fairly poor...fairly poor in terms of how many go into college or University and actually get good jobs!"

(Specialist nurse)

"A lot of children, particularly if they spend a lot of time on dialysis, have missed an awful lot of school...and those children are harder to integrate back into school because they have missed so much...and to actually get them back into school full-time, when they are so behind, with limited support, that's very difficult!" (Specialist nurse)

"Initially, when they've first been transplanted, children need to come to the hospital 3 times a week and that does decrease but even at two-three months post-transplant, they still come twice or once a week...it means that they are being taken out of school a lot, which is marking them out as different...and particularly the secondary age pupils don't want to be different...they want to be the same as their friends...so, the fact that they have to attend the hospital, is an issue" (Specialist nurse)

'Sometimes the children are very worried by having periods away from school...they are very anxious about friendship groups and 'Will everything still be the same?' when they go back...and that can actually become cyclical...they've had to have a lot of time off and therefore they are worried about it, so then they come up with more reasons not to go back to school because they are worried that they won't have any friends when they go back"

(Specialist nurse)

"As regards difficulties to do with school absence, it's things like appearance...once you've had a transplant, you become fat and hairy or spotty...certainly when you are in a special regime, you usually change appearance...and particularly for older children, there are real anxieties about going back and looking different...and for some that's quite a big problem! [...] We've certainly had children in whose case we get the feeling that it is because of their appearance, they stay away from school!" (Paediaric nephrologist)

"For the child who has a transplant and keeps having episodes of rejection, there's the uncertainty of knowing 'Am I going to go to school next week or not?' Each day they are not sure what's gonna happen a few days, a few weeks ahead...as time goes on with the graft, they become more and more confident about the fact that they are going to stay at school...but to start with, I sometimes sense that maybe they don't really get into school, they don't make the effort...simply because they are thinking 'Well, I might have a rejection, I might be off school again! So, what's the point?"

(Paediaric nephrologist)

"The children are going to show quite a lot of side effects from their medication early on...and that will potentially cause teasing and issues to do with being or looking different [...] I guess later on there are issues to do with potentially poor growth...maybe a delay in going into puberty...particularly for boys...so, they quite often won't be growing at the same time their friends are growing...which does cause potential peer relationship problems!"

(Paediaric nephrologist)

With regard to levels of school support offered to transplanted children, the views and experiences reported by health professionals in the present study suggest that provision of school support for these children is far from being a homogeneous phenomenon. Perceived wide variation in levels of school support offered to transplanted children, was a recurring theme in the interview data. The health professionals pointed to a number of factors that are likely to play a crucial part in enhancing or inhibiting the provision of effective support by schools. Such factors may include, among others, i) school ethos and teacher attitudes linked to levels of teacher-awareness and knowledge concerning renal transplantation, ii) type of school attended by the transplanted children (primary/secondary; special/mainstream), and iii) issues of resources/funding for schools linked to political factors specific to the localities of schools. The interview extracts that follow, exemplify the factors in question.

"There are schools who really go out of their way to help...and they are very helpful...I think it's a lot down to the culture that there is in the school [...] But there are schools who don't have a good attitude...there is a male patient who had real problems with his school when he was on dialysis ...they wouldn't really tolerate him feeling ill at all...he'd have to maybe sent to the school medical room and then sent home...and they wouldn't let him walk upstairs when he was able to walk upstairs...some of those problems continued now he has got a transplant...and they are not trying to balance the need for him to be in school with the fact that he does have perhaps just slightly more health care needs than an average child would...he is actually very well...and I think school is part of the problem rather than part of the solution"

(Paediaric nephrologist commenting on both helpful and unhelpful/over-protective school/teacher attitudes)

"I think because our attitude to transplantation is that children should be treated as normal as possible and like everybody else, and we are giving that message to the teachers as well, sometimes that is exactly what the teachers do, so the children get no concession at all...and sometimes you'll end up with problems where the children are not allowed to go to the toilet when they want to, for instance"

(Specialist nurse commenting on unhelpful teacher attitudes where no allowances are made for the children)

"Certainly, the way we see children being treated when they go to school, is that they are over-protected...I think the majority of teachers misunderstand what happens after the transplant...they imagine the children need protecting more than they do"

(Paediaric nephrologist commenting on unhelpful/over-protective teacher attitudes linked to teachers' misconceptions about the nature of renal transplantation)

"Schools are very variable as regards the support they offer...this is probably the fairest report to make [...] We have had issues with teachers in secondary schools making very unhelpful comments about children either saying words to the effect of 'Oh, you've bothered to turn up today, have you?' or 'Who are you?' 'Is this a new child in our class?' Either because of the dramatic change in children's appearance or because they've had a period up to 6 six weeks of not going to school in that initial period when they are very immunosupressed [...] I get the impression that a lot of teachers...obviously have a lot of knowledge in the education field...but heath issues are a bit of a mystery to them...they don't seem to have interest in health...so you are often really having to go back to very much first principles in order to talk to them about issues surrounding transplantation...they need very basic information...I am a parent and I feel that I've got a grasp of what basic issues are in education...cause I have to...cause my children go to school...but it doesn't seem to be that same sense of teachers having an awareness of health issues"

(Specialist nurse commenting on unhelpful teacher attitudes/insensitive comments linked to lack of knowledge concerning the transplanted children's health condition)

"As regards the support the children are offered, at primary level I would say that is generally very good...and I assume that that's because generally primary schools are smaller than secondary schools and it is easier for them to identify individuals and to look at their issues individually...if anything, primary schools and teachers are probably slightly more anxious than they need to be and would tend to be very over-protective and very concerned that they don't want to do anything that will endanger the child...to the point that very often our role with primary schools is to try and build confidence and encourage them to treat children as normal as possible and not to make them a special case"

(Specialist nurse commenting on how primary schools tend to be more supportive than secondary)

"I think because special schools tend to be smaller, again you seem to have more of a sense in the same way as you do when you go into primary schools that the teachers have a very in-depth knowledge of their children and their family set-up and how that all works...special schools are maybe able to be slightly more individual because they haven't got such a big population"

(Specialist nurse commenting on how attending a special school tends to affect support)

"If schools have a good Special Needs Department, they are better... the children are going to be all right...they are going to do better...because they have that extra support...it might even be access to a toilet"

(Specialist nurse commenting on SEN support in mainstream schools)

"Some of the sort of community schools are not as good...and again it depends on areas...some of the more deprived areas...schools in those areas are not as [good]...because it's funding issues of course...because if you have a child who has needs...who is actually being statemented or going down the process of being statemented...whether it is health or educational needs...there is funding issues...and not all schools or not all Education Authorities have the money to provide the support that is necessary...I had a primary school...with a child who beside his transplant was wet as well, so he was in nappies and things...and the school wanted the family to buy a bin! To dispose of them! Which is completely unreasonable! Well, you don't do that in nurseries, do you? [Nurseries deal with nappies all the time]"

(Specialist nurse)

As in the case of levels of school support offered to transplanted children, the views and experiences reported by health professionals in the present study suggest that collaboration between health and education practitioners is far from being a homogeneous phenomenon. The health professionals pointed to a number of factors that are likely to play a crucial part in enhancing or inhibiting the effectiveness of liaison between health and education staff. Such factors, which appear to interact in a complex manner, may include, among others, i) teacher attitudes, ii) 'cultural' differences between professionals in education and health, iii) the extent to which health and education professionals are clear about each others' roles and responsibilities, iv) conditions of professional work, e.g. availability of time for teachers and hospital staff that could be used for liaison purposes, v) type of school attended by the transplanted children (primary/secondary; special/mainstream), vi) resources and staffing for hospitals and schools, and vii) geographical factors specific to the localities of schools and hospitals. The interview extracts that follow, illustrate the factors in question.

Geographical factors specific to the localities of schools and hospitals

"It is not as easy to liaise with community and schools when people live a long way away...there are areas where population density is very low...and they will be a helicopter ride away from places...so, your geography affects how easily you can deliver things" (Paediaric nephrologist)

"A hospital teacher here did an audit...the teacher wrote to all the schools, where all the dialysis and transplant patients went, and she asked them for feedback on attendance and about their report...very few schools bothered to reply...the majority of schools did not respond...some did and they were quite enthusiastic...but the majority didn't bother! And it's a great disappointment...we have children who have been transplanted and they've done their GCSEs and we don't know how they are doing! We had to ask the pupils...It would be very nice to get some sort of feedback from the schools saying 'This is how they got on!' Or SATs tests (results)...this sort of information would be very useful for us to keep track of things...and the schools seem to be very bad at returning any information like that...they expect us to provide the information quickly but they don't provide information back...we hardly get anything back at all! In that specific incident of the audit, we got very little back!"

(Paediaric nephrologist)

"[Question on how problems in the liaison with schools could be overcome] I don't know, it's very difficult...because I know teachers are very busy people...and they have enough on their plate just as we have" (Paediaric nephrologist)

"Our community nursing staff resource is quite poor...we only have the equivalent of one proper person for the community side...and the community nurses are usually very busy with the dialysis patients...so, we are under-resourced in that area where you might say that you need to have some community element that should link up with the schools...and if you are going to do something pro-actively, there should be the community staff going out, making contact with the schools and establishing those lines to communication...but for us, that's very hard because we don't have that resource" (Paediaric nephrologist)

"Our problem is that we don't know who you write to in a school...do you write to their teacher? Do you write to their form teacher in secondary school? What do you do? Whereas the school could make contact very easily with us because the patients and their parents always know who their consultant is"

(Paediaric nephrologist)

"Special schools have a school nurse usually on site...that makes it easy...whereas mainstream schools will have a school nurse that may cover 2-3 different schools...so, to actually engage them, it is a bit more difficult" (Specialist nurse)

"[Liaison with schools] is very variable really...I do find that secondary schools are harder than primary schools...to engage...so, I might have a lot of input in some schools and hardly any input in [other] schools...[What do you think makes secondary schools harder to engage?] They are much bigger...and obviously some schools are bigger than others...the bigger the school, the more difficult it is...because as it tends to be, the pastoral care isn't the same" (Specialist nurse)

"At secondary level, we certainly have encountered much more reluctance to be interested in what we have got to say, compared to primary [...] As Education Authorities have got stricter and stricter about the whole concept of risk assessments and teachers not taking on what often seem to be nursing or medical tasks...that seems to have exacerbated the issue...because they're very cut and dry that 'This is my job...I am a teacher... I have to do with education!' and I wonder if that is maybe part of the issue that we are coming up against...a profession that is very...protective...rightly so...of their need to be educationalists...and so doesn't want to be embroiled in [health matters]...be mini health care professionals...but from my point of view, I don't think I am asking them to be that...I am just saying 'I would like to give you some information so that you feel safe and secure and you feel able to know what's going on with this child' Particularly at secondary level, 'I am not asking you to give medicines, I am not asking you to take responsibility...I just want to give you information, so that you understand what happens... If this child is suddenly off unexpectedly or this child is off with a temperature, which you didn't think was serious, but actually the hospital is making a big deal about, I want you to have a concept of what rejection is...why we might be worried...so that you can understand this child as an individual, not just as somebody who sits in your class and goes away at 3.30pm and you have no further responsibility for"

(Specialist nurse commenting on what could be perceived as differences in how health professionals and teachers conceptualise teachers' role)

• Findings of the present study relating to issues of communication between health and education staff have a particular relevance for educational policy and practice given the current rhetoric of "partnership" and "inter-agency collaboration" that characterises official educational policy literature in England (DfES, 2001a; DfES, 2001b)

• Findings relating to lack of teacher-awareness and knowledge concerning chronic renal failure have crucial implications for practice, e.g. for Initial Teacher Education.

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This document was added to the Education-line database on 28 October 2003