childhood diabetes parents expericnes

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Childhood diabetes: parents experience of homemanagement and the first year following diagnosis

L. Lowes, P. Lyne and J, W . Gr eg ory

Nursing, Health and Social Care Research Centreand Depa rtment of Child Health, University ofWales College of Medicine, Cardiff, UK

Accepted 28 August 2003

Abstract ims To explore parents' experience of having a child diagnosed with Type 1diabetes, managed at home, and their first year following diagnosis.

Methods A qualitative, longitudinal study based on 40 in-depth interviewswith parents of 20 children with newly diagnosed Type 1 diabetes managed athome from diagnosis in South Wales.

Results Many parents were alarmed by the speed of diagnosis following thegradual progress of their child's symptoms. The provision of timely, adequateinformation was important to all parents. Although five parents had initial con-cerns about going home, all parents were subsequently pleased their childrenhad not been hospitalized. Home management enabled parents to integrate di-abetes management into the family's normal lifestyle from diagnosis. Profes-sional support, particularly accessible telephone advice, was valued by andreassured parents. Parents experienced a loss of spontaneity, a continuing fearof hypoglycaemia and did no t want their child to feel different to other ch ildren.Acutely aware of the seriousness of diabetes, they did their utmost to achieveoptimal glycaemic control but felt that diabetes could not 'dominate' if theywere to lead a 'normal' life.

onclusions The experience of parents in this study suggests that paren ts ofchildren w ith newly diagnosed diabetes are able to cope successfully when giventhe opportun ity to start treatment at home. Therefore, if children with diabetesare clinically well at diagnosis, this study supports home management as a sys-tem of care from the parents' point of view. These findings are relevant to clini-cians, policy makers and health service managers involved in planning andproviding paediatric diabetes care.

Diabet. Med. 21, 531-538 (2004)

Keywords childhood diabetes, home management, paren ts' experience

IntroductionIncreasingly, children with newly diagnosed Type 1 diabeteswh o are clinically well are treated at home from diagnosis [ 1 -4] . In Leicestershire, only 98 (42 ) out of 236 children wereadm itted at diagnosis from 1979 to 1988 [2 ], with over 80of newly diagnosed children managed at home since 1988. InBirmingham, after the introduction of a Home Care Unit in1 9 8 1 , 60 of newly diagnosed children were managed

orrespondence to : Lesley Lowes, Department of Child Health, University Hos-pital of W ales, Heath Park, Cardiff CF 4 4XW , UK, E-mail: LowesQcardiff .acu k

entirely at home by 1994 |5]. Similarly, in Cardiff from 1995to 1999 , 51 (57 ) of 89 newly diagnosed children were homemanaged from diagnosis |6J. In the USA and Canada, severalcentres have eliminated unnecessary hospitalization [1,4,7-12]. For example, the number of children managed at homefrom diagnosis in Texa s increased from 0 to 3 8 hetween1987 and 1990 [4], However, there are differing interpretationsof 'home management', which range from total avoidance ofhospitalization [2,5,6J toper iods of up to7 2 h in hospital |12 |.

Hospitalization for newly diagnosed children is still com-mon worldwide, with considerable variation in length of stay

[1 3- 16 ], The average length of hospitalization in Japa n [14]


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fV/532? Mb^me'mlnagemeht of tKildhood'dia bete s L. otties et al.

and Sweden [17] is 3 weeks and in Finland, 4 weeks [15], Ithas been demonstrated, however, that length of stay can bereduced without an adverse effect on metabolic or psychoso-cial outcom es [15], and that early discharge to a training apa rt-ment can result in improvements in information and attentionreceived and in the emotional response to treatment [17],

Anecdotal evidence suggests that home management ena-bles parents to cope better with acute crises through activeinvolvement in their child's diabetes management from diag-nosis [2,18]. Studies investigating home management haveexamined effects on quan titative variables such as glycosylatedhaemoglobin (HbA,^,) [2,19], frequency of re-admissions [2,4]and cost effectiveness [4,12] and suggest that home manage-ment is a safe and cost-effective alternative to hospitaliza tion.However, concern about the initial impact of the diagnosis onparents has resulted in some health professionals recommend-ing a short period of hospitalization at diagnosis [20] . Despitethe current emphasis on the provision of health care services

that reflect the views and experiences of patients, their familiesand carers [21-23], there is a lack of evidence concerning par-ents' experience of home management. The study reported inthis paper explores this phenomenon and the ways in whichparents cope, emotionally and practically, with their changedsituation over the first year following diagnosis.

ubjects and methods

Inclusion criteria for participants were that they were parents ofchildren with newly diagnosed diabetes who were clinicallywell (blood pH > 7.30) at presentation and managed at homefollowing referral to the paediatric unit at a teaching hospital inSouth Wales. All paren ts of children who met these criteria fromMa rch 199 8 to October 1999 were invited to participate and allconsented. The final sample comprised 38 parents. Nineteenparents (of 10 children) participated in a series of three inter-views: within 10 days of diagnosis and 4 and 12 months afterdiagnosis. To allow an examination of the possible effect ofrepeated interviewing [24] , seven pare nts (of four children)participated in a single interview 4 months after diagnosis and12 parents (of six children) participated in a single interview12 months after diagnosis.

Qualitative studies using interviews are sometimes criticisedhecause the small numher of subjects does not permit generali-zation ofthe findings [25]. However, the usual objective of suchstudies is to produce rich and detailed information on a smallnumber of cases withou t claiming generalisability. Their valuelies in the insights that can only be obtained by detailed work[26]. This is true of the present study in which the sample is ap-propriate and adequate in qualitative terms [25]. It comprisesinformation-rich cases reflecting a range of characteristics forstudy in depth, with each family providing a unique descriptionof their experience to increase understand ing of the study topic .The totality of the cohort of participating p arents m akes it like-ly that the popula tion under study are well represented. All par-ents were white English-speaking. Their median age was 39(range 23-49) years, and the median age of their newly diag-

nosed children (11 boys, nine girls) was 9 (range 2-15) years.

There were two single-parent families. There were a rangeparental occupations including teaching, engineering, offiwo rk, cleaning and journalism. Five mothers did not work oside the home and two fathers described themselves as uneployed. Three parents had Type 1 diabetes, and four parenhad experience of a relative with T ype 1 or Type 2 diabetes.

The newly diagnosed children were managed at home usithe usual system of care in the study setting. They were dcharged from the paediatric unit 1-3 hours after d iagnosisdiabetes specialist nurse visited the families at home twice a dfor the first few days to provide education and teach the pctical skills of diabetes management. Initial home visits oftlasted 2-3 hours. An established on-call service (a mobphone shared by paediatric diabetes team members) allowparents access to advice out of hours.

To achieve the study objectives, a qualitative approach wadopted using in depth interviewing as the principal m ethoddata generation [25,27 ,28]. T o allow parents to tell their storin their own terms [29 ], and because nothing was know n abothe study topic, a structured interview schedule with prdetermined questions was not used At their first interview, parenwere asked only open-ended questions such as 'What has it belike for you ,,. ? 'M ore focused questions arose from interpretion of the initial data for subsequent interviews, hut minimprom pting was required as parents raised issues spontaneousParents were interviewed in their own homes. Children wenot present during the interviews, which lasted 30-90 min. terviews were audio taped and transcribed verbatim. Fieldno[30] were recorded before, during and after the interviews. fieldwork and transcription w as undertaken by the principal searcher (LL), a paediatric diabetes specialist nurse w ith resposibility for the home care of 70 of the children in the study.

Particular attention was paid to the researcher's dual roThis research was guided by theories from the social sciencand interpretative phenomenology, philosophical perspectivthat propose that researcher and participant are equal partnin the research process [3 1,32]. These approaches reflect a coviction that the values, beliefs, experiences and understandiof the researcher can legitimately be an im portant part of the search process. Transparency is assured by means of an 'autrail', which gives the reader access to the processes leadifrom data to conclusions, an essential pre-requisite for rigourqualitative research [30,33]. In the present study [24], docmentation of research methods, contextual data, researchself-awareness and choices made during analysis and interptation allows readers to follow or 'au dit' the researcher's thining and reasoning, and scrutinize for bias or error. The stufindings were discussed with eight parents after their particiption in the repeated interviews, and they could all recognize arelate to the researcher's interpretation of their experiences.

The interview text was coded according to themes themerged from the parents' accounts. Pieces of text that corrsponded to a specific category were highlighted and stored onspike a Word for Window s processing facility [34], which wemptied into a separate document when all selected data weaccumu lated. This method keeps the original text intact and lows further ca tegorization [35]. Analysis of the data was cotinually reviewed and challenged by the other two a utho rs, oof whom (PL) had no clinical contact with the re spondents. Trelationship between the text, the researchers' preconceptio


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Original article 533

and the resultant interpretation were objectively reflected uponand questioned. All decisions concerning data interpretationwere justified with reference to the original text and the datawere examined for similarities and differences between cases,an d for divergent cases, i.e. those that differed in importantrespects from the majority. Thus, criteria for the conduct ofqualitative enquiry were strictly observed [36,37] and thegeneration of data was acknowledged as a process occurringbetween parents and a carer. The findings are presented asaccounts given to a known clinician and interpreted throughthe process described abov e.

This study was approved by the Bro Taf Health AuthorityLocal Research Ethics Comtnittee.

Results

when presenting qualitative findings, it is preferable to uselengthy data extracts to provide context [38], but publishingrestrictions necessarily limit their inclusion. The full text is

available for inspection [24]. Quotat ions are attributed tomother (M) or father (F), followed by family identificationnumber and age of son or daughter.

vents leading up t diagnosis

Nineteen parents (of 10 children) participated in this firstinterview phase. There was a striking similarity in theiraccounts of events leading up to diagnosis. Before diagnosis,15 (79 ) parents harboured an underlying suspicion of diabetesand four strongly suspected diabetes. However, regardless ofthe depth of their suspicion, all these parents had alternative

explanations for the symptoms. Most parents put diabetes tothe 'back of their m inds' and continued to attach their children'ssymptoms t o other, more common infections or conditions.

I was determined it was a urine infection. I thought, no. It justwon'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'ssymptoms and only sought advice from their family doctor(GP) when symptom s persisted, sometimes over several weeks.

It crept up on us ... it was the combination of the thirst, the behaviour,the bed wetting and the w eight loss. Those were just the four thingsthat slowly ... it was probably happening from the beginning of thesummer, but we weren't noticing it until it suddenly got to that criticalpoint where they all eatne together [M9, son (6), 1st interview ].

The pa rents' experience was characterized by a gentle accel-eration of concern propelled by the gradual progress of theirchildren's symptoms. Consequently, 16 (84 ) parents becamealarmed at the contrastingly instant response from the GP,who informed them of the probable diagnosis and immedi-ately referred their child to hospital.

Dr Anon ... was phoning to arrange an appointment. said, fine,that's ok. But it wasn't an appointment, it was come in now ... whichagain triggered a little alarm bell (Ml, son (11), 1st interview].

Almost all these parents reported how the sense of urgencycontinued or increased at the hospital. However, their perceptionof the urgency of hospital staff, the speed of diagnosis and howquickly their children were started on insulin was viewed in dif-ferent way s by individual paren ts. Seven (37 ) parents perceivedit as good service at the time and two (10 ), retrospectively.

I thought we'd be sitting on a bench In some dtaughty cotridor forthe 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 ofwhom likened the experience to 'roller coasting', 'railroa ding'or 'steatn-rollering'.

I couldn't believe the urgency ... I couldn't undetstand why Iheprognosis (sic) was so rushed, and why she had lo becotne ati insu-lin diabetic that night. Why couldn't it wait ;t week? Why couldn'twe see how she went? I felt was lositig conttol, I suppose. I feltlike saying, now wait. Let's all caltii down now . .. but it all seetned

to be railroaded on so fast |M 8, daughter (10), Isl interview].Some parents had conflicting feelings between the two.

Sixteen (84 ) knew little about diabetes and therefore feltpowerless and depen dent upon interven tion frotn hea lth pro-fessionals who were tnaking decisions that they could notunderstand. Thus, even while awaiting confirtnation of thediagnosis, they needed infortnation about diabetes and thediagnostic process.

That would have been a good idea, think, to have sotne sort ofleaflets around, because people like us are totally ignorant of it. Iwould have been grabbing thetii, as quick as you could like, but thesitting round in the hospital waiting for the blood tests . .. thinkthe 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 beca use theirchildren were not 'ill', and three (16 ) felt a sense of relief.

I think it was relief, as w ell, that we had found out what was w tongin terms ofthedrinking and everythitig [F l,so n (11), 1st ititerview].

Seven (37 ) parents had expected their children to be hospi-talized. All the parents wanted to avoid their child being hos-pitalized but five (26 ) had concerns about coping at hotne.

M8's anxiety was related to the speed of events. F9 and M9were nervous about giving an injection to their son. M3 wasconcerned because she knew little about diabetes. It was M7,the only single mothe r interviewed at diagnosis, who was tnostanxious.

I was terrified, I've got to be hotiest, at the thought of going hotne[M7, daughter (9), 1st interview].

The first wee k

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.


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i ^ u i [ | | I M > 1I I< K I, JI I K K V - ; - / ; - . ; , , . i / ; /

There's a sense of loss in a way because we can't do it exactly likewe used to do it .. . there's a change in routine, a change in the wayyou do things ... it's made me think of the life that used to be andthe Hfe that is now [FIO, son (2), 1st interview].

The pare nts' shock, hu rt and disbelief were due mainly to thesuddetiness and perpetuity of the diagnosis. M8 experienced

continuing distress and felt she was not coping.

I just feel really bitter about it al l. .. why has it got to be her ... Howdo you know she's diabetic? You only saw her for a couple ofhours...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 sostupid 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 practicalaspects of diabetes tnanagement and prioritizing their chil-dren's immediate needs. With the exception of M l and F l,they all found the information they were given initially 'a lot totake in' and worked on a 'need-to-know' basis, preferring toabsorb the information in small chunks.

I needed it in layman's terms really ... there's so much to take onboard ,,, you think one minute you've grasped it, and then youthink, no I haven't [M2, son (6), 1st interview].

M l and Fl found the 'drip feeding' of information over severaldays difficult to cope with because it induced a fear of 'whatwas to come'.

I think we're the kind of people that like everything up front andthen deal with it [Ml, son (11), 1st interview].

Com monly , parents were frightened of 'hy pos '. Ten (53 )parents, eight of whom were mothers, found it difficult toallow their child the level of freedom previously enjoyed.

You're on tenterhooks ,,, how long's it going to take to go roundthe shop, and it's all you can do not to stand on the gatepost [M4,son (13), 1st interview].

Parents adop ted a range of coping strategies. Six (32 ) copedby taking 'one day at a time '. Twelve (63 ) expressed the

impo rtance of getting into a routin e, and five (26 ), the needro 'plan ahe ad'. Ten (53 ) found it helpful to talk to otherpeople with knowledge of diabetes. Professional support wasimportant to all the parents, for whom easy accessibility totelephone advice was particularly reassuring.

You were there when we needed you ,,, you came round when weneeded you ,,, you were at the end of the phone at the end of theday, tf I was that worried, I could pick a phone up. So, I was afraidof feeling very isolated, but no, I haven't felt isolated at all. Quitethe reverse actually. There has been somebody there if I've neededthem [M7, daughter (9), 1st interview].

Ten (53 ) parents felt more confident about their ability tocope within a week of diagnosis.

I think we've learnt to cope with it relatively quickly ,,, I'm nsaying that we know everything, but it seems much less dauntitoday and that's what, only ,,, four days after diagnosis ,, , I'm ntrying to make light of it or say it's not serious, but ,,, it just doesnseem so daunting now [ Fl , son (11), 1st interview].

All the parents, even those with initial misgivings, we

pleased that their children had not been hospitalized. Reasonincluded: 'it's best dealt with in a relaxed atmosphere ,,. witout buzzers and bleepers arou nd ( M l) ', 'getting on with yourselves as soon as possible (M2 )', 'it's not like he was actally physically ill (F4)', 'better for him because he's been wihis family (M5)', 'she'd have hated being in hospital (M7)', 'get him hom e as quickly as possible, so as to make it a normpart of everyday life (M9 )', and 'fitting [diabetes] into a routin(MIO)', From diagnosis, parents learnt to deal with situatiothat occurred within the framework of their everyday life.

We did his blood monitoring in the car park at McDonaldtoday ,,, we even calibrated the new thing in there ., , no probleat all. And we've done it in school [M9, son (6), 1st interview]

our months after diagnosis

Twenty-six parents were interviewed 4 months after diagnsis, 19 (of 10 children) in their second interview an d seven (four children) in a single interview. All these parents activelsought information about diabetes from various sources. Theneeded to know wh at they were dealing with to help them copwith their new situation.

It gets easier. The more you understand, the more in control yoare, I think you just need to know and absorb as much as you cso you're not scared of it. You've got to leam, what is diabet[Ml2, daughter (9), single interview at 4 months].

Six to 8 weeks after diagnosis, three m others experienceacute distress. Tw o described these episodes as 'turning p oin tafter wh ich they felt better abou t their child having d iabetes

I was absolutely hysterical. I was sobbing ... up to that stage I fI had the whole weight of the world on my shoulders ... then, afthat, I was starting to come back up ... I was pretty down befo[M4, son (13), 2nd interview].

Eleven (42 ) parent s felt a cont inue d sense of loss. Lossincluded a loss of freedom, a loss of their child's health, a loof rheir child's independence and a loss of spontaneity.

1 wish I could have my healthy boy back ... it's as if, one dayou'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 hypoAlthough parents or their child had dealt with these with nadverse effects, 17 (65 ) parents remained anxious abou t thpossibility of a severe hypo. One m other experienced a changin the child/parent relationship.

The main difference has been ,,, he's just the last year or so been athe age where you're letting go ,,, they can make decisions ,,, g


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into town and things. And suddenly, you're having to come back inagain as the vigilant parent. It sort of collides with the emergingindependence. And w orking out how to manage that and allow himto carry on becoming more and more independent is quite ajuggling act [Ml3, son (12), single interview at 4 months].

Apa rt from the loss of spontaneity regarding timing of meals,

dietary management was not a major concern for any of thepare nts. Specific dietary issues included weigh t contr ol, schoolmeals and children's parties. All but one (M8) of the parentswere surprised how quickly they had adapted, 14 (54 )describing their child's diabetes as 'a way of life'. They hadbecome more flexible in working around diabetes, and rou-tines they had established were now just 'part of the day'.

You get into a pattem where you deal with it without thinkingabout it, but you're still dealing with it. You're still doing what youneed to do, with regards to being organized if you want to go hereor go there or w hate ver... there's not so much emphasis in yourmind about it. You just do it [F4, son (1 3), 2nd interview].

Sixteen (61 ) parents felt home man agem ent had helpedthem cope by introducing diabetes as a manageable conditionrather than an illness.

I was very glad that it could happen that way .. . it gave a feeling thatit was manageable, and you could just get on with it and do it. Itwas a very positive sort of feeling to have ... So, I'm very glad thatit was possible to work it that way ... where he could just comehome and w e could sort of face it and think about what goes nexttogether [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 con-trol and the risk of complications in later life.

I think the message about the more control you have, the less likelythese complications are ... although it's frightening knowing thatthey'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 wasstrongly influenced by their child's glycaemic control. All theparents 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 pro-blems for him later on, and I think that's unfair. I think it's ourrole as parents to make sure as far as possible we don't do that[MIO, son (2), 2nd interview].

welve m onths after diagnosis

Thirty-one parents were interviewed 12 months after diagno-sis, 19 (of 10 children) in their third interview and 12 (of sixchildren) in a single interview. Tw enty-one (6 8 ) now vieweddiabetes as part of their everyday lives. Having a child withdiabetes, and incorporating the child's needs into their life-style, was now their normality. All the parents, except M9, felt

they were coping most of the time.

If somebody had said to me a year ago, when (son) was first diag-nosed, that I would be sitting here saying what 1 have today, thatI'm coping, I think I would have said, forget it. Because 1 reallydidn't think I was going to. But I have [M5, son (12), 3rd interview].

Nocturna l hypoglycaemia continued to be a particular concernof all the parents. Three children had experienced severe hypos.

I have never been so frightened in all my life ... the way it hap-pened, one minute he was opening his eyes, got out of bed. and thenext minute, he was out. Out of it completely, and having a fit (M 9,son (6), 3rd interview].

M9's confidence was shattered by her son's severe hypo.

With him having that awful h ypo, it was almost like having to startagain .. . get your head around it again .. . in the beginning, you justthought, we're doing fine. The BMs are good. We've got used to it.We re carrying on with it. And then that happened and . .. you imme-diately think . .. I ve been doing something wrong ... the last coupleof months, since it happened, have been really difficult ... in fact,

I've given up work . .. because it's getting in the way |M 9, son (6),3rd interview].

Nine (29 ) parents continued to experience a loss of sponta-neity. The need to 'plan ahead' affected almost every aspect oftheir lives.

We've got to be organized if ever we go anywhere ... you've got tothink 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 houselike you normally do (M16, son (8), single interview at 12 months].

All the parents felt more confident when good glycaemiccontrol was achieved, both day-to-day and as demonstrated bytheir child's HbA|j. result.

You can actually see then what she has been like over the periodof time, and it's good that she is getting on well . .. you know thenyou're coping with it well... you're looking after it you're control-ling it [F15, daughter (6), single interview at 12 months].

Conversely, inexplicable high or low blood glucose m easure-ments engendered feelings of confusion, disappointment andloss of control.

We've lost control completely over the past few weeks . .. and tha t'sworrying . .. there's nothing different. Why is it doing this? Whenthey [blood sugars] get out of control, I feel I've lost it because Idon't know why they've gone [Ml, son (11), 3rd interview].

Eleven (35 ) parents did not wan t their life to be different tothat of other people or their children to feel different to otherchildren. Con sequen tly, they made a deliberate effort to ensuretheir children's lives were as normal as possible from diagno-sis. How ever , 12 (39 ) parents believed that if their childrenwere to lead normal lives, it was important that diabetes wasnot allowed to dominate or become too intrusive.

You do worry that it is serious. But not everyday . .. 1 think diabetesis something you've got to put to the back of your mind ... if he'scoping all right, you can't think about it every day [F3, son (12),3rd interview].


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\ '536 Mgrne'-rriariagement of childhood diabetes L. Lowes et al.

All the parent s revisited the time of diagn osis. Six (19 )reflected that home management had helped build their confi-dence to deal with the changes to their lives resulting from theirchild developing diabetes.

Having the management passed over to you straight away, with theback-up of the visits, just made you feel, yes, we can cope withthis. think if she'd have been in hospital, and then sent home, thatwould have been harder... maybe we'd have had less confidenceto deal with it. We were thrown in at the deep end, but wilMngly. Ithink it was sort of wanting to take control of it almost, wasn't it?[M20, daughter (9), single interview at 12 months].

is ussion

Despite the increasing trend towards home management ofchildhood diabetes, parents' experience of this approach tocare was hitherto unexplored. Qualitative work allows agreater understanding of the experiences of service users and,

as such, this qualitative study was undertaken expressly toallow parents to describe their experience of having a childdiagnosed with diabetes, treated at home from diagnosis andcaring for their newly diagnosed child over the first year.

It is generally accepted that a diagnosis of childhood dia-betes represents a major stressor event for parents [39]. Theliterature suggests that a num ber of factors (i.e. parental griefparents' perception of the seriousness of the diagnosis, thechild's age, concurrent stressful events, inadequate informa-tion, professional support) may influence how parents copewith their changed situation [ 40 -4 3] . Accounts from parentsin this study concur with many of these. Interpretation of the

data identified four main factors that influenced coping asdescribed by these parents: their perception of the speed ofevents surround ing diagn osis, their developing knowledge andunderstanding of diabetes, their perception of their ability toachieve good glycaemic control and the re-establishment ofnormality.

The empowerment of patients and carers is one of the goalsof the Diabetes Nationa l Service Fram ework s for England andWales, and the importance of the provision of information tothe process of empowerment is clearly illustrated in the studydata. Parents' perception of the speed of events at diagnosishad a major impact on many parents in this study, who feltpowerless in what they perceived to be a frightening situation.It would clearly be inapp ropriate and unsafe for a diagnosis ofType 1 diabetes to be handled in a leisurely fashion. All thenewly diagnosed children of parents in this study were clini-cally well (blood p H > 7.30) at presentatio n but m ight havebecome ketoacidotic if commencement of their treatment hadbeen delayed. However, the data suggest that these parentswould have coped b etter if timely, adequate verbal and writteninformation had been provided throughout the diagnosticperiod to allow them an understanding of the reason for theprompt referral to hospital and commencement of treatment.

The ability to contact members of the paediatric diabetesteam 'out-of-hours' via a mobile phone was reassuring to par-

ents. Many paediatric diabetes teams across the United Kindom provide a similar service, which is usually unpaid adependent upon the good will of team members. The resourimplications need to be quantified and funded, and this servco-ordinated across Trust s, an appro ach th at has been succesfully implemented across Tayside, Fife and Fo rth Valley [44

It has been suggested recently that trends such as startiinsulin at home and encouraging patients to continue a 'nomal' lifestyle play down the seriousness of diabetes [45]. Tfindings from this study do not support this assumption. Paents in this study recognized the seriousness of diabetes and timportance of optimal glycaemic control but, to cope with tdiagnosis, they needed to balance the seriousness of diabetwith the need to lead a 'norm al' life. Thus, they minimized timpact of the diagnosis to re-establish a normal lifestyle thincorporated the needs of the child with diabetes.

It is recognized that findings from this study have limitegeneralisability due to the sample size and socially situated acontext-bound nature of qualitative inquiry [31,37]. Fexamp le, the same paediatric diabetes team cared for all famlies in the study. Furthermore, it is not known to what extethe findings from this study are transferable to parents of chdren with diabetes who are hospitalized at diagnosis. Nevetheless, accounts from these parents support anecdotevidence that home management promotes parental copinthrough active involvement in the management of their childdiabetes from diagnosis [2,18]. As some parents pointed outthey would have had to learn to cope at home after dischargif their children had been hospitalized.

It is possible that the response of these parents to thechild's diagnosis, particularly the initial shock and disbelieffeelings of being out of control and the need for immediate acareful explanations, could be applied to other childhoochronic disorders, particularly those in which diagnosis trigers rapid intervention. Interestingly, the experience of thperi-diagnostic period described by these parents mirrors thof parents in a longitudinal study und ertaken 40 years aginvestigating the impact o fa diagnosis of spinal paralytic poomyelitis on 14 children and .their families [46]. Thualthough pare nts' experiences .may vary according to thnature of the crisis or family situation, there are enough simlarities to contribu te to our know ledge of parents ' responses other childhood chronic conditions.

The researcher's dual role was examined in depth by comparing data from the parents for whom LL was the primarnurse with data from the other parents. Parents' accounts westrikingly similar with no difference in the quality of data , sugesting that the dual nurse/researcher role did not lead to biaAll the parents found it helpful that the researcher had aunderstanding of childhood diabetes and its managemenThey were reminded before each interview that the researcwas being undertaken to increase understanding aboutheir experience of coping, and they frequently talkeabout times when they felt they had not coped or had madmistakes.


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To exp lore the effect of serial interviewing, repeated and sin-gle interview data were actively searched for similarities anddifferences. Single interview parents clearly travelled the samejourney and re ported similar experiences as repeated interviewparents. However, unlike repeated interview parents, theysometimes had poor recall 4 or \2 months after diagnosis of

specific events that occurred at diagnosis. The experience ofrepeated interview parents could also be explored in greaterdepth because repeated interviews provided approximatelytwo more hours of interview data for each family. Thus, thelongitudinal design is believed to be a strength of this stud y.

This work can inform further qualitative and quantitativeresearch in this area. Topics that merit further investigationinclude the child's experience of being diagnosed w ith diabetes(as one father said: 'to ask us is only half a story'), the effect ofthe normalization process on family coping, and a comparisonof hospital vs, home at diagnosis (measuring long-term out-comes such as glycaemic control, treatment compliance,readmission rates and cost effectiveness).

In conclusion, the experience of parents in this study sug-gests that parents of children with newly diagnosed diabetesare able to cope successfully when given the opportunity tostart treatment at home. This approach to care was appreci-ated by these parents, most of whom seemed to adapt well totheir changed situation. These parents recognized the serious-ness of the condition and had an acute awareness of the im-portance of good glycaemic control. The provision of timelyadequate information and an 'out-of-hours' emergency tele-phone service were particularly important to parents. If chil-dren with diabetes are clinically well at diagnosis, this studysupports home management as a system of care from the par-ents' point of view. These findings are relevant to clinicians,policy makers and health service managers involved in plan-ning and providing paediatric diabetes care.

cknowledgements

We thank all of the parents who participated in this study,sometimes at very difficult or distressing times in their lives, LLwas the principal investigator. She initiated the research andwith PL and JG designed the study. LL took primary responsi-bility for data collection, interview transcription and prelimi-nary data analysis and interpretation. PL and JG jointlysupervised the study, and w ith LL, discussed core ideas, partic-ipated in analysis and interpretation of the data and writing ofthe paper. All authors contributed to the final draft of thepaper, LL is guarantor for the paper. This research was partfunded by the Wales Office of Research and Development forHealth and Social Care,

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