Childhood diabetes: parents' experience of home management and the first year following diagnosis

L. Lowes, P. Lyne and J, W. Gregory*

Abstract
Nursing, Health and Social Care Research Centre and *Department of Child Health, University of Wales College of Medicine, Cardiff, UK Accepted 28 August 2003

Aims To explore parents' experience of having a child diagnosed with Type 1 diabetes, managed at home, and their first year following diagnosis. Methods A qualitative, longitudinal study based on 40 in-depth interviews with parents of 20 children with newly diagnosed Type 1 diabetes managed at home from diagnosis in South Wales. Results Many parents were alarmed by the speed of diagnosis following the gradual progress of their child's symptoms. The provision of timely, adequate information was important to all parents. Although five parents had initial concerns about going home, all parents were subsequently pleased their children had not been hospitalized. Home management enabled parents to integrate diabetes management into the family's normal lifestyle from diagnosis. Professional support, particularly accessible telephone advice, was valued by and reassured parents. Parents experienced a loss of spontaneity, a continuing fear of hypoglycaemia and did not want their child to feel different to other children. Acutely aware of the seriousness of diabetes, they did their utmost to achieve optimal glycaemic control but felt that diabetes could not 'dominate' if they were to lead a 'normal' life. Conclusions The experience of parents in this study suggests that parents of children with newly diagnosed diabetes are able to cope successfully when given the opportunity to start treatment at home. Therefore, if children with diabetes are clinically well at diagnosis, this study supports home management as a system of care from the parents' point of view. These findings are relevant to clinicians, policy makers and health service managers involved in planning and providing paediatric diabetes care. Diabet. Med. 21, 531-538 (2004) Keywords childhood diabetes, home management, parents' experience

Introduction
Increasingly, children with newly diagnosed Type 1 diabetes who are clinically well are treated at home from diagnosis [ 1 4]. In Leicestershire, only 98 (42%) out of 236 children were admitted at diagnosis from 1979 to 1988 [2], with over 80% of newly diagnosed children managed at home since 1988. In Birmingham, after the introduction of a Home Care Unit in 1981, 60% of newly diagnosed children were managed
Correspondence to: Lesley Lowes, Department of Child Health, University Hospital of Wales, Heath Park, Cardiff CF14 4XW, UK, E-mail: LowesQcardiff .acuk

entirely at home by 1994 |5]. Similarly, in Cardiff, from 1995 to 1999, 51 (57%) of 89 newly diagnosed children were home managed from diagnosis |6J. In the USA and Canada, several centres have eliminated unnecessary hospitalization [1,4,712]. For example, the number of children managed at home from diagnosis in Texas increased from 0 to 38% hetween 1987 and 1990 [4], However, there are differing interpretations of 'home management', which range from total avoidance of hospitalization [2,5,6J toperiodsof up to72 h in hospital |12|. Hospitalization for newly diagnosed children is still common worldwide, with considerable variation in length of stay [13-16], The average length of hospitalization in Japan [14]

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531

fV/532? Mb^me'mlnagemeht of tKildhood'diabetes L. Lotties et al. and Sweden [17] is 3 weeks and in Finland, 4 weeks [15], It has been demonstrated, however, that length of stay can be reduced without an adverse effect on metabolic or psychosocial outcomes [15], and that early discharge to a training apartment can result in improvements in information and attention received and in the emotional response to treatment [17], Anecdotal evidence suggests that home management enables parents to cope better with acute crises through active involvement in their child's diabetes management from diagnosis [2,18]. Studies investigating home management have examined effects on quantitative variables such as glycosylated haemoglobin (HbA,^,) [2,19], frequency of re-admissions [2,4] and cost effectiveness [4,12] and suggest that home management is a safe and cost-effective alternative to hospitalization. However, concern about the initial impact of the diagnosis on parents has resulted in some health professionals recommending a short period of hospitalization at diagnosis [20]. Despite the current emphasis on the provision of health care services that reflect the views and experiences of patients, their families and carers [21-23], there is a lack of evidence concerning parents' experience of home management. The study reported in this paper explores this phenomenon and the ways in which parents cope, emotionally and practically, with their changed situation over the first year following diagnosis. There were two single-parent families. There were a range of parental occupations including teaching, engineering, office work, cleaning and journalism. Five mothers did not work outside the home and two fathers described themselves as unemployed. Three parents had Type 1 diabetes, and four parents had experience of a relative with Type 1 or Type 2 diabetes. The newly diagnosed children were managed at home using the usual system of care in the study setting. They were discharged from the paediatric unit 1-3 hours after diagnosis. A diabetes specialist nurse visited the families at home twice a day for the first few days to provide education and teach the practical skills of diabetes management. Initial home visits often lasted 2-3 hours. An established on-call service (a mobile phone shared by paediatric diabetes team members) allowed parents access to advice out of hours. To achieve the study objectives, a qualitative approach was adopted using in depth interviewing as the principal method of data generation [25,27,28]. To allow parents to tell their stories in their own terms [29], and because nothing was known about the study topic, a structured interview schedule with predetermined questions was not used. At their first interview, parents were asked only open-ended questions such as 'What has it been like for you ,,. ?'More focused questions arose from interpretation of the initial data for subsequent interviews, hut minimal prompting was required as parents raised issues spontaneously. Parents were interviewed in their own homes. Children were not present during the interviews, which lasted 30-90 min. Interviews were audio taped and transcribed verbatim. Fieldnotes [30] were recorded before, during and after the interviews. All fieldwork and transcription was undertaken by the principal researcher (LL), a paediatric diabetes specialist nurse with responsibility for the home care of 70% of the children in the study. Particular attention was paid to the researcher's dual role. This research was guided by theories from the social sciences and interpretative phenomenology, philosophical perspectives that propose that researcher and participant are equal partners in the research process [31,32]. These approaches reflect a conviction that the values, beliefs, experiences and understanding of the researcher can legitimately be an important part of the research process. Transparency is assured by means of an 'audit trail', which gives the reader access to the processes leading from data to conclusions, an essential pre-requisite for rigour in qualitative research [30,33]. In the present study [24], documentation of research methods, contextual data, researcher self-awareness and choices made during analysis and interpretation allows readers to follow or 'audit' the researcher's thinking and reasoning, and scrutinize for bias or error. The study findings were discussed with eight parents after their participation in the repeated interviews, and they could all recognize and relate to the researcher's interpretation of their experiences. The interview text was coded according to themes that emerged from the parents' accounts. Pieces of text that corresponded to a specific category were highlighted and stored on a spike, a Word for Windows processing facility [34], which was emptied into a separate document when all selected data were accumulated. This method keeps the original text intact and allows further categorization [35]. Analysis of the data was continually reviewed and challenged by the other two authors, one of whom (PL) had no clinical contact with the respondents. The relationship between the text, the researchers' preconceptions

Subjects and methods

Inclusion criteria for participants were that they were parents of children with newly diagnosed diabetes who were clinically well (blood pH > 7.30) at presentation and managed at home following referral to the paediatric unit at a teaching hospital in South Wales. All parents of children who met these criteria from March 1998 to October 1999 were invited to participate and all consented. The final sample comprised 38 parents. Nineteen parents (of 10 children) participated in a series of three interviews: within 10 days of diagnosis and 4 and 12 months after diagnosis. To allow an examination of the possible effect of repeated interviewing [24], seven parents (of four children) participated in a single interview 4 months after diagnosis and 12 parents (of six children) participated in a single interview 12 months after diagnosis. Qualitative studies using interviews are sometimes criticised hecause the small numher of subjects does not permit generalization ofthe findings [25]. However, the usual objective of such studies is to produce rich and detailed information on a small number of cases without claiming generalisability. Their value lies in the insights that can only be obtained by detailed work [26]. This is true of the present study in which the sample is appropriate and adequate in qualitative terms [25]. It comprises information-rich cases reflecting a range of characteristics for study in depth, with each family providing a unique description of their experience to increase understanding of the study topic. The totality of the cohort of participating parents makes it likely that the population under study are well represented. All parents were white English-speaking. Their median age was 39 (range 23-49) years, and the median age of their newly diagnosed children (11 boys, nine girls) was 9 (range 2-15) years.

2004 Diabetes UK. Diabetic Medicine. 2 1 , 531-538

Original article 533 and the resultant interpretation were objectively reflected upon and questioned. All decisions concerning data interpretation were justified with reference to the original text and the data were examined for similarities and differences between cases, and for divergent cases, i.e. those that differed in important respects from the majority. Thus, criteria for the conduct of qualitative enquiry were strictly observed [36,37] and the generation of data was acknowledged as a process occurring between parents and a carer. The findings are presented as accounts given to a known clinician and interpreted through the process described above. This study was approved by the Bro Taf Health Authority Local Research Ethics Comtnittee. Almost all these parents reported how the sense of urgency continued or increased at the hospital. However, their perception of the urgency of hospital staff, the speed of diagnosis and how quickly their children were started on insulin was viewed in different ways by individual parents. Seven (37%) parents perceived it as good service at the time and two (10%), retrospectively. I thought we'd be sitting on a bench In some dtaughty cotridor for the best part of two hours before we'd be looking at being seen [F5, son (12), 1st intetviewj. Ten (53%) parents viewed it as cause for concern, four of whom likened the experience to 'roller coasting', 'railroading' or 'steatn-rollering'. I couldn't believe the urgency ... I couldn't undetstand why Ihe prognosis (sic) was so rushed, and why she had lo becotne ati insulin diabetic that night. Why couldn't it wait ;t week? Why couldn't we see how she went? I felt 1 was lositig conttol, I suppose. I felt like saying, now wait. Let's all caltii down now ... but it all seetned to be railroaded on so fast |M8, daughter (10), Isl interview]. Some parents had conflicting feelings between the two. Sixteen (84%) knew little about diabetes and therefore felt powerless and dependent upon intervention frotn health professionals who were tnaking decisions that they could not understand. Thus, even while awaiting confirtnation of the diagnosis, they needed infortnation about diabetes and the diagnostic process. That would have been a good idea, 1 think, to have sotne sort of leaflets around, because people like us are totally ignorant of it. I would have been grabbing thetii, as quick as you could like, but the sitting round in the hospital waiting for the blood tests ... 1 think the fear factor would have died down when you statted tending it [F6, daughter (10), 1st interview]. All the parents were shocked at the diagnosis. Three (16%) found it particularly hard to accept the diagnosis because their children were not 'ill', and three (16%) felt a sense of relief. I think it was relief, as well, that we had found out what was wtong in terms ofthedrinking and everythitig [Fl,son (11), 1st ititerview]. Seven (37%) parents had expected their children to be hospitalized. All the parents wanted to avoid their child being hospitalized but five (26%) had concerns about coping at hotne. M8's anxiety was related to the speed of events. F9 and M9 were nervous about giving an injection to their son. M3 was concerned because she knew little about diabetes. It was M7, the only single mother interviewed at diagnosis, who was tnost anxious. I was terrified, I've got to be hotiest, at the thought of going hotne [M7, daughter (9), 1st interview].
The first week

Results
when presenting qualitative findings, it is preferable to use lengthy data extracts to provide context [38], but publishing restrictions necessarily limit their inclusion. The full text is available for inspection [24]. Quotations are attributed to mother (M) or father (F), followed by family identification number and age of son or daughter.

Events leading up to diagnosis

Nineteen parents (of 10 children) participated in this first interview phase. There was a striking similarity in their accounts of events leading up to diagnosis. Before diagnosis, 15 (79%) parents harboured an underlying suspicion of diabetes and four strongly suspected diabetes. However, regardless of the depth of their suspicion, all these parents had alternative explanations for the symptoms. Most parents put diabetes to the 'back of their minds' and continued to attach their children's symptoms to other, more common infections or conditions. I was determined it was a urine infection. I thought, no. It just won't be diabetes. It's bound to be a urine infection [M10, son (2), 1st interview]. They felt no urgency to take action at the onset of their child's symptoms and only sought advice from their family doctor (GP) when symptoms persisted, sometimes over several weeks. It crept up on us ... it was the combination of the thirst, the behaviour, the bed wetting and the weight loss. Those were just the four things that slowly ... it was probably happening from the beginning of the summer, but we weren't noticing it until it suddenly got to that critical point where they all eatne together [M9, son (6), 1st interview]. The parents' experience was characterized by a gentle acceleration of concern propelled by the gradual progress of their children's symptoms. Consequently, 16 (84%) parents became alarmed at the contrastingly instant response from the GP, who informed them of the probable diagnosis and immediately referred their child to hospital. Dr Anon ... was phoning to arrange an appointment. 1 said, fine, that's ok. But it wasn't an appointment, it was come in now ... which again triggered a little alarm bell (Ml, son (11), 1st interview].

All the parents were distressed at the diagnosis. Nine (47%) felt numb and described the first few days as 'a blur'. Four (21%) expressed the diagnosis as a kind of loss.

2004 Diabetes UK. Diabetic Medicine, 2 1 . 531-538

i ^ u i [ ' . ' | . . |'IM>1II<KI,JI I K K V - ; - / ; - . ; , , . i / ;/

There's a sense of loss in a way because we can't do it exactly like we used to do it... there's a change in routine, a change in the way you do things ... it's made me think of the life that used to be and the Hfe that is now [FIO, son (2), 1st interview]. The parents' shock, hurt and disbelief were due mainly to the suddetiness and perpetuity of the diagnosis. M8 experienced continuing distress and felt she was not coping. I just feel really bitter about it all... why has it got to be her? ... How do you know she's diabetic? You only saw her for a couple of hours...she wasn't ill [M8, daughter (10), 1st interview]. All the parents needed a reason for this to have happened. I said to him, 1 wish I'd breastfed (son) for longer, which is so stupid and illogical .,, but I think you're trying to find answers [M2, son (6), 1st interview]. All the parents coped initially by focusing on the practical aspects of diabetes tnanagement and prioritizing their children's immediate needs. With the exception of M l and Fl, they all found the information they were given initially 'a lot to take in' and worked on a 'need-to-know' basis, preferring to absorb the information in small chunks. I needed it in layman's terms really ... there's so much to take on board ,,, you think one minute you've grasped it, and then you think, no I haven't [M2, son (6), 1st interview]. M l and Fl found the 'drip feeding' of information over several days difficult to cope with because it induced a fear of 'what was to come'. I think we're the kind of people that like everything up front and then deal with it [Ml, son (11), 1st interview]. Commonly, parents were frightened of 'hypos'. Ten (53%) parents, eight of whom were mothers, found it difficult to allow their child the level of freedom previously enjoyed. You're on tenterhooks ,,, how long's it going to take to go round the shop, and it's all you can do not to stand on the gatepost [M4, son (13), 1st interview]. Parents adopted a range of coping strategies. Six (32%) coped by taking 'one day at a time'. Twelve (63%) expressed the importance of getting into a routine, and five (26%), the need ro 'plan ahead'. Ten (53%) found it helpful to talk to other people with knowledge of diabetes. Professional support was important to all the parents, for whom easy accessibility to telephone advice was particularly reassuring. You were there when we needed you ,,, you came round when we needed you ,,, you were at the end of the phone at the end of the day, tf I was that worried, I could pick a phone up. So, I was afraid of feeling very isolated, but no, I haven't felt isolated at all. Quite the reverse actually. There has been somebody there if I've needed them [M7, daughter (9), 1st interview]. Ten (53%) parents felt more confident about their ability to cope within a week of diagnosis.

I think we've learnt to cope with it relatively quickly ,,, I'm not saying that we know everything, but it seems much less daunting today and that's what, only ,,, four days after diagnosis ,,, I'm not trying to make light of it or say it's not serious, but,,, it just doesn 't seem so daunting now [Fl, son (11), 1st interview]. All the parents, even those with initial misgivings, were pleased that their children had not been hospitalized. Reasons included: 'it's best dealt with in a relaxed atmosphere ,,. without buzzers and bleepers around (Ml)', 'getting on with it yourselves as soon as possible (M2)', 'it's not like he was actually physically ill (F4)', 'better for him because he's been with his family (M5)', 'she'd have hated being in hospital (M7)', 'to get him home as quickly as possible, so as to make it a normal part of everyday life (M9)', and 'fitting [diabetes] into a routine (MIO)', From diagnosis, parents learnt to deal with situations that occurred within the framework of their everyday life. We did his blood monitoring in the car park at McDonald's today ,,, we even calibrated the new thing in there .,, no problem at all. And we've done it in school [M9, son (6), 1st interview].
Four months after diagnosis

Twenty-six parents were interviewed 4 months after diagnosis, 19 (of 10 children) in their second interview and seven (of four children) in a single interview. All these parents actively sought information about diabetes from various sources. They needed to know what they were dealing with to help them cope with their new situation. It gets easier. The more you understand, the more in control you are, I think you just need to know and absorb as much as you can so you're not scared of it. You've got to leam, what is diabetes [Ml2, daughter (9), single interview at 4 months]. Six to 8 weeks after diagnosis, three mothers experienced acute distress. Two described these episodes as 'turning points' after which they felt better about their child having diabetes. I was absolutely hysterical. I was sobbing ... up to that stage I felt I had the whole weight of the world on my shoulders ... then, after that, I was starting to come back up ... I was pretty down before [M4, son (13), 2nd interview]. Eleven (42%) parents felt a continued sense of loss. Losses included a loss of freedom, a loss of their child's health, a loss of rheir child's independence and a loss of spontaneity. 1 wish I could have my healthy boy back ... it's as if, one day, you've got a healthy child, and then all of a sudden ... you haven't [M4, son (13), 2nd interview]. Thirteen (93%) children had experienced minor hypos. Although parents or their child had dealt with these with no adverse effects, 17 (65%) parents remained anxious about the possibility of a severe hypo. One mother experienced a change in the child/parent relationship. The main difference has been ,,, he's just the last year or so been at the age where you're letting go ,,, they can make decisions ,,, go
2004 Diabetes UK. Diabetic Medicine. 21, 531-538

Original article 535 into town and things. And suddenly, you're having to come back in again as the vigilant parent. It sort of collides with the emerging independence. And working out how to manage that and allow him to carry on becoming more and more independent is quite a juggling act [Ml3, son (12), single interview at 4 months]. Apart from the loss of spontaneity regarding timing of meals, dietary management was not a major concern for any of the parents. Specific dietary issues included weight control, school meals and children's parties. All but one (M8) of the parents were surprised how quickly they had adapted, 14 (54%) describing their child's diabetes as 'a way of life'. They had become more flexible in working around diabetes, and routines they had established were now just 'part of the day'. You get into a pattem where you deal with it without thinking about it, but you're still dealing with it. You're still doing what you need to do, with regards to being organized if you want to go here or go there or whatever... there's not so much emphasis in your mind about it. You just do it [F4, son (13), 2nd interview]. Sixteen (61%) parents felt home management had helped them cope by introducing diabetes as a manageable condition rather than an illness. I was very glad that it could happen that way ... it gave a feeling that it was manageable, and you could just get on with it and do it. It was a very positive sort of feeling to have ... So, I'm very glad that it was possible to work it that way ... where he could just come home and we could sort of face it and think about what goes next together [Fl 3, son (12), single interview at 4 months]. However, they recognized the seriousness of diabetes and were acutely aware of the association between glycaemic control and the risk of complications in later life. I think the message about the more control you have, the less likely these complications are ... although it's frightening knowing that they're around, it's helpful motivation to try and work at control [M13, son (12), single interview at 4 months]. Indeed, their perception of how well they were coping was strongly influenced by their child's glycaemic control. All the parents did their utmost to achieve optimal glycaemic control. That's my focus at the moment. Getting good control for later life. Because 1 think if we aren't vigilant now, we could store up problems for him later on, and I think that's unfair. I think it's our role as parents to make sure as far as possible we don't do that [MIO, son (2), 2nd interview].
Twelve months after diagnosis

If somebody had said to me a year ago, when (son) was first diagnosed, that I would be sitting here saying what 1 have today, that I'm coping, I think I would have said, forget it. Because 1 really didn't think I was going to. But I have [M5, son (12), 3rd interview]. Nocturnal hypoglycaemia continued to be a particular concern of all the parents. Three children had experienced severe hypos. I have never been so frightened in all my life ... the way it happened, one minute he was opening his eyes, got out of bed. and the next minute, he was out. Out of it completely, and having a fit (M9, son (6), 3rd interview]. M9's confidence was shattered by her son's severe hypo. With him having that awful hypo, it was almost like having to start again ... get your head around it again ... in the beginning, you just thought, we're doingfine.The BMs are good. We've got used to it. We're carrying on with it. And then that happened and ... you immediately think ... I 've been doing something wrong ... the last couple of months, since it happened, have been really difficult ... in fact, I've given up work ... because it's getting in the way |M9, son (6), 3rd interview]. Nine (29%) parents continued to experience a loss of spontaneity. The need to 'plan ahead' affected almost every aspect of their lives. We've got to be organized if ever we go anywhere ... you've got to think, right, have we got his monitor, his insulin ... biscuits and crisps ... so, you 've got to go out prepared. You can't just leave the house like you normally do (M16, son (8), single interview at 12 months]. All the parents felt more confident when good glycaemic control was achieved, both day-to-day and as demonstrated by their child's HbA|j. result. You can actually see then what she has been like over the period of time, and it's good that she is getting on well ... you know then you're coping with it well... you're looking after it, you're controlling it [F15, daughter (6), single interview at 12 months]. Conversely, inexplicable high or low blood glucose measurements engendered feelings of confusion, disappointment and loss of control. We've lost control completely over the past few weeks ... and that's worrying ... there's nothing different. Why is it doing this? When they [blood sugars] get out of control, I feel I've lost it because I don't know why they've gone [Ml, son (11), 3rd interview]. Eleven (35%) parents did not want their life to be different to that of other people or their children to feel different to other children. Consequently, they made a deliberate effort to ensure their children's lives were as normal as possible from diagnosis. However, 12 (39%) parents believed that if their children were to lead normal lives, it was important that diabetes was not allowed to dominate or become too intrusive. You do worry that it is serious. But not everyday ... 1 think diabetes is something you've got to put to the back of your mind ... if he's coping all right, you can't think about it every day [F3, son (12), 3rd interview].

Thirty-one parents were interviewed 12 months after diagnosis, 19 (of 10 children) in their third interview and 12 (of six children) in a single interview. Twenty-one (68%) now viewed diabetes as part of their everyday lives. Having a child with diabetes, and incorporating the child's needs into their lifestyle, was now their normality. All the parents, except M9, felt they were coping most of the time.

2004 Diabetes UK. Diaiyetic Medicine, 2 1 , 531-538

\ '536 Mgrne'-rriariagement of childhood diabetes L. Lowes et al. All the parents revisited the time of diagnosis. Six (19%) reflected that home management had helped build their confidence to deal with the changes to their lives resulting from their child developing diabetes. Having the management passed over to you straight away, with the back-up of the visits, just made you feel, yes, we can cope with this. I think if she'd have been in hospital, and then sent home, that would have been harder... maybe we'd have had less confidence to deal with it. We were thrown in at the deep end, but wilMngly. I think it was sort of wanting to take control of it almost, wasn't it? [M20, daughter (9), single interview at 12 months].

Discussion
Despite the increasing trend towards home management of childhood diabetes, parents' experience of this approach to care was hitherto unexplored. Qualitative work allows a greater understanding of the experiences of service users and, as such, this qualitative study was undertaken expressly to allow parents to describe their experience of having a child diagnosed with diabetes, treated at home from diagnosis and caring for their newly diagnosed child over the first year. It is generally accepted that a diagnosis of childhood diabetes represents a major stressor event for parents [39]. The literature suggests that a number of factors (i.e. parental grief, parents' perception of the seriousness of the diagnosis, the child's age, concurrent stressful events, inadequate information, professional support) may influence how parents cope with their changed situation [40-43]. Accounts from parents in this study concur with many of these. Interpretation of the data identified four main factors that influenced coping as described by these parents: their perception of the speed of events surrounding diagnosis, their developing knowledge and understanding of diabetes, their perception of their ability to achieve good glycaemic control and the re-establishment of normality. The empowerment of patients and carers is one of the goals of the Diabetes National Service Frameworks for England and Wales, and the importance of the provision of information to the process of empowerment is clearly illustrated in the study data. Parents' perception of the speed of events at diagnosis had a major impact on many parents in this study, who felt powerless in what they perceived to be a frightening situation. It would clearly be inappropriate and unsafe for a diagnosis of Type 1 diabetes to be handled in a leisurely fashion. All the newly diagnosed children of parents in this study were clinically well (blood pH > 7.30) at presentation but might have become ketoacidotic if commencement of their treatment had been delayed. However, the data suggest that these parents would have coped better if timely, adequate verbal and written information had been provided throughout the diagnostic period to allow them an understanding of the reason for the prompt referral to hospital and commencement of treatment. The ability to contact members of the paediatric diabetes team 'out-of-hours' via a mobile phone was reassuring to par-

ents. Many paediatric diabetes teams across the United Kingdom provide a similar service, which is usually unpaid and dependent upon the good will of team members. The resource implications need to be quantified and funded, and this service co-ordinated across Trusts, an approach that has been successfully implemented across Tayside, Fife and Forth Valley [44]. It has been suggested recently that trends such as starting insulin at home and encouraging patients to continue a 'normal' lifestyle play down the seriousness of diabetes [45]. The findings from this study do not support this assumption. Parents in this study recognized the seriousness of diabetes and the importance of optimal glycaemic control but, to cope with the diagnosis, they needed to balance the seriousness of diabetes with the need to lead a 'normal' life. Thus, they minimized the impact of the diagnosis to re-establish a normal lifestyle that incorporated the needs of the child with diabetes. It is recognized that findings from this study have limited generalisability due to the sample size and socially situated and context-bound nature of qualitative inquiry [31,37]. For example, the same paediatric diabetes team cared for all families in the study. Furthermore, it is not known to what extent the findings from this study are transferable to parents of children with diabetes who are hospitalized at diagnosis. Nevertheless, accounts from these parents support anecdotal evidence that home management promotes parental coping through active involvement in the management of their child's diabetes from diagnosis [2,18]. As some parents pointed out, they would have had to learn to cope at home after discharge if their children had been hospitalized. It is possible that the response of these parents to their child's diagnosis, particularly the initial shock and disbelief, feelings of being out of control and the need for immediate and careful explanations, could be applied to other childhood chronic disorders, particularly those in which diagnosis triggers rapid intervention. Interestingly, the experience of the peri-diagnostic period described by these parents mirrors that of parents in a longitudinal study undertaken 40 years ago investigating the impact ofa diagnosis of spinal paralytic poliomyelitis on 14 children and .their families [46]. Thus, although parents' experiences .may vary according to the nature of the crisis or family situation, there are enough similarities to contribute to our knowledge of parents' responses to other childhood chronic conditions. The researcher's dual role was examined in depth by comparing data from the parents for whom LL was the primary nurse with data from the other parents. Parents' accounts were strikingly similar with no difference in the quality of data, suggesting that the dual nurse/researcher role did not lead to bias. All the parents found it helpful that the researcher had an understanding of childhood diabetes and its management. They were reminded before each interview that the research was being undertaken to increase understanding about their experience of coping, and they frequently talked about times when they felt they had not coped or had made mistakes.

2004 Diabetes UK. Diabetic Medicine, 21, 531-538

Original article To explore the effect of serial interviewing, repeated and single interview data were actively searched for similarities and differences. Single interview parents clearly travelled the same journey and reported similar experiences as repeated interview parents. However, unlike repeated interview parents, they sometimes had poor recall 4 or \2 months after diagnosis of specific events that occurred at diagnosis. The experience of repeated interview parents could also be explored in greater depth because repeated interviews provided approximately two more hours of interview data for each family. Thus, the longitudinal design is believed to be a strength of this study. This work can inform further qualitative and quantitative research in this area. Topics that merit further investigation include the child's experience of being diagnosed with diabetes (as one father said: 'to ask us is only half a story'), the effect of the normalization process on family coping, and a comparison of hospital vs, home at diagnosis (measuring long-term outcomes such as glycaemic control, treatment compliance, readmission rates and cost effectiveness). In conclusion, the experience of parents in this study suggests that parents of children with newly diagnosed diabetes are able to cope successfully when given the opportunity to start treatment at home. This approach to care was appreciated by these parents, most of whom seemed to adapt well to their changed situation. These parents recognized the seriousness of the condition and had an acute awareness of the importance of good glycaemic control. The provision of timely adequate information and an 'out-of-hours' emergency telephone service were particularly important to parents. If children with diabetes are clinically well at diagnosis, this study supports home management as a system of care from the parents' point of view. These findings are relevant to clinicians, policy makers and health service managers involved in planning and providing paediatric diabetes care.
Acknowledgements

537

We thank all of the parents who participated in this study, sometimes at very difficult or distressing times in their lives, LL was the principal investigator. She initiated the research and with PL and JG designed the study. LL took primary responsibility for data collection, interview transcription and preliminary data analysis and interpretation. PL and JG jointly supervised the study, and with LL, discussed core ideas, participated in analysis and interpretation of the data and writing of the paper. All authors contributed to the final draft of the paper, LL is guarantor for the paper. This research was part funded by the Wales Office of Research and Development for Health and Social Care,

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