Annotated Bibliography

P A R E N T A L C A R E - G I V I N G

Living with type 1 diabetes: perceptions of children and their parents

Marie Marshall, Bernie Carter, Karen Rose and Ailsa Brotherton

Aim. To explore and describe the experiences of children and their parents living with type 1 diabetes mellitus from diagnosis

onwards.

Background. Type 1 diabetes mellitus is a psychologically and behaviourally demanding chronic condition that necessitates

children and their parents taking extensive responsibility for managing the condition. Diabetes management involves main-

taining a highly effective level of treatment to reduce the risks of short- and long-term complications. Treatment is carried out in

the context of daily life, but little research evidence is available about this experience.

Design. A phenomenological study using conversational interview.

Method. A purposive sample of 10 children, (aged 4–17) living with type 1 diabetes mellitus and their parents participated in

this study. Participants were from different ethnic backgrounds and at differing lengths of time since diagnosis. Data were

generated through conversational interviews and analysed using thematic analysis.

Results. The central theme that was identified was ‘normal’. This was underpinned by four subthemes: transition, attachment,

loss and meaning. The notion of ‘normal’ is dominant in the lives of these children and their parents because diabetes not only

makes these families different, but also makes their pursuit of ‘normal’ more visible.

Conclusion. These findings highlight that, despite different cultures, ages and lengths of time since diagnosis, families living with

diabetes share very similar experiences. Understanding how children and parents create meaning and how this meaning influences

their actual and potential health problems, is important if the provision of healthcare is to be effective in meeting their needs.

Relevance to clinical practice. Conducting child- and parent-centred qualitative research allows exploration of the perceptions and

understanding of type 1 diabetes mellitus and the meaning ascribed by children and their parents who live with the condition.

Diabetes is a lifelong, life-threatening condition that has a significant impact on children’s and parents’ lives. Developing a deeper

understanding of their lives and experiences will enable the delivery of nursing care to meet their specific needs.

Key words: child-centred, diabetes, normal, nurses, nursing

Accepted for publication: 24 October 2008

Background

The number of new cases of childhood-onset type 1 diabetes

mellitus (T1DM) has increased substantially in recent years,

particularly in younger children (Alderson et al. 2006).

T1DM is a life-long, life-threatening condition that invades

the lives of children and their parents (Brett & Swift 2003)

and onset and symptoms can develop very rapidly (Lowes &

Gregory 2004). Treatment aims to maintain blood glucose

levels within normal limits (4–7 mmol/l) (DoH 2001) and

there are constant short- and long-term health risks (DoH

2007). Reducing risks requires children and their parents to

Authors: Marie Marshall, BSc (part time PhD Student), RSCN,

Paediatric Diabetes Nurse Specialist, Saint Mary’s Hospital,

Manchester, UK; Bernie Carter, BSc, PhD, PGCE, RSCN, SRN,

Professor of Children’s Nursing, Department of Nursing, University

of Central Lancashire, Preston, UK; Karen Rose, MA (Oxon), MSc,

PhD, PGCE, RN, Freelance Researcher, Healthcare Consultancy,

Manchester, UK; Ailsa Brotherton, BSc (Hons), MSc, PhD, PGCE,

RD, FHEA, Senior Research Fellow, Department of Nursing,

University of Central Lancashire, Preston, UK

Correspondence: Marie Marshall, Part time PhD student, Paediatric

Diabetes Nurse Specialist, Saint Mary’s Hospital, Manchester, UK.

Telephone: +44 0161 276 6815.

E-mail: [email protected]

On behalf of all the authors, this work has not been published and is

not being considered for publication elsewhere.

Source: This study had a small grant awarded by Novo Nordisk.

� 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd, Journal of Clinical Nursing, 18, 1703–1710 1703 doi: 10.1111/j.1365-2702.2008.02737.x

balance a healthy diet, exercise, blood glucose level moni-

toring and insulin injections (DoH 2001). Self-care and

self-discipline are central to diabetes control (National

Institute for Clinical Excellence (NICE) 2004) and self-care

creates specific demands on adolescents (Sullivan-Bolyai et al.

2002, Marshall et al. 2006).

Research and literature relating to childhood diabetes is

extensive, primarily quantitative, medically oriented and

reflects the global concerns about morbidity and mortality

related to diabetes, such as epidemiological challenges

(Mazur et al. 2007), the comparative prevalence of types of

diabetes (Eppens et al. 2006), personality and diabetes

control (Vollrath et al. 2007) and approaches to monitoring

(Golicki et al. 2008). Most studies, which have attempted to

address children’s and parents’ perceptions, have been

questionnaire based with very few studies adopting a rigou-

rous qualitative methodology.

Three key small qualitative studies have started to address

what it is like for a child and their parents to live with T1DM

diabetes. Hatton et al.’s (1995) study highlighted the inordi-

nate stress parents’ experienced resulting from factors

including the criticality of the condition at diagnosis, the

all-pervading nature of diabetes and being expected to

manage their child’s long-term care. Lowes et al. (2005)

showed that for parents to view their child’s T1DM as part of

their everyday lives, they had to move to a world view that

accommodated the child with T1DM ‘that is’ rather than the

child that ‘should be’. The children in Miller’s (1999) study

talked about finding out, daily discipline, being normal, good

things, bad things and support. Whilst these studies contrib-

ute to knowledge, no significant qualitative study has been

undertaken in the UK, which considers how children live,

from diagnosis onwards, with T1DM and no research jointly

considers this in the context of how their parents’ perceive the

way their child lives with this condition. The intention of this

study is to address this gap.

Methodology and data collection

Aim

This study aimed to explore and describe the experiences of

children and their parents living with T1DM from diagnosis

onwards.

Methodology

Phenomenological research is the study of lived experience –

the world as it is immediately experienced rather than

conceptualised, categorised or theorised. Phenomenology

aims to transform lived experiences into textual expressions

of their essence in a way that enables us to grasp their nature

and significance. Phenomenology (Van Manen 1990) was the

selected methodology as would ‘borrow’ experiences thus

enabling the researchers to interpret and describe the

children’s and their parents’ meaning of living with T1DM.

Asking children and their parents ‘what T1DM is like’ from

their own perspectives is a substantial change in direction

from the usual medical management questions. This aimed to

generate knowledge and understanding to support practitio-

ners to provide care that reflects the lived, contextual reality

and concerns of the children and their parents.

Conversational interviews: collecting data and engaging

children and parents

Conversational interviews in the families’ own homes were

the chosen method of data collection as they were felt to

facilitate a relaxed, non-directive, phenomenologically

appropriate approach to engaging with and eliciting parents’

and children’s experiences of T1DM. Conversational inter-

views (no written literacy skills required) were felt to be

particularly valuable in enabling children as young as four

years of age (Docherty & Sandelowski 1999) and their

parents to tell stories about their experiences. In particular,

this approach allowed the interviewer to accommodate the

specific needs of individual children at different stages of their

development. Although similar questions were used with

parents and children, interviews were matched to the child’s

cognitive level through additional prompts, changes in

pacing, using child-oriented language and adapting the

questioning style.

After careful consideration, children and parents were

interviewed independently rather than in a child–parent

dyad/triad. Interviewing the children without their parents

present gave them the space to ‘tell it how it is’ mitigating the

potential subtle and not-so-subtle power that parents can

exert on children. We respected children as experts about

their own experiences. This approach also gave the parents

space to talk freely about their experiences without feeling

constrained by their child. We wanted parents and children to

feel free to reveal and describe their own feelings, thoughts,

explanations and meanings about living with diabetes.

Before the interview, the lead researcher (MM) explained

the study, gained consent or assent, talked to the parents and

talked and played with the children. Drawing materials were

available to help put the children at ease and obtain child-led

data. The researcher’s existing relationship with the children

(and the parents) part of her clinical caseload provided a

sound foundation for the children to feel comfortable during

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the interview. This was helped by encouraging the children to

handle the audio equipment and listen to their voice on the

audio recorder. After the interview, the researcher spent some

‘warm-down’ time with the participants, checking that they

were OK and explaining what happened next.

The interviews were audio-recorded, with participants’

agreement and transcribed verbatim. Field notes were made

immediately after the interviews for example, how easy or

difficult it was for parents to tell their stories (some mothers

cried intermittently during the interview, but still wished to

continue) and how easy or difficult it was for children to find

their own words to describe their diabetes or the usefulness of

the opportunity to draw a picture about ‘me and my diabetes’.

Ethics and consent

Ethics approval was obtained from the Local Research Ethics

Committee (LREC). Parents and children were given separate

and specific written information about the study and had the

opportunity to ask questions before making a decision to

participate. Parents consented to their own participation and

for their child’s if the child was under 16. Children under 16

gave their assent and those over 16 gave consent. Confiden-

tiality and anonymity were assured and pseudonyms are used.

Psychological support was made available to participants, if

desired; no-one made use of this offer.

Participants

A purposive sample of 10 children and their parents was

recruited from MM’s own caseload and aimed to reflect,

rather than represent children from a wide range of cultural

backgrounds, age groups and experience of diabetes.

Data analysis

Van Manen’s (1990) phenomenological approach to thematic

coding was used. Thematic analysis involves repetitive

examination of the data to recognise ‘threads’, which exist

across a single interview (Morse & Field 1996, p. 114). Every

transcript was coded and themes identified and contextua-

lised. Then the children’s transcripts were considered collec-

tively and ‘threads’ were identified that occurred across the

transcripts. Additionally, incidents, events and descriptions

that did not occur in all the transcripts, but which were seen

as important were also identified. The transcripts from the

parents were handled the same way. Finally, the two sets of

texts (children’s and parents’) were examined to expose the

phenomena that existed in both and which helped make sense

of the data set in its entirety.

Maintaining rigour

Rigour was achieved through attention to detail at all stages

of the study (from design through to presentation of findings).

Reliability and transferability were promoted through the

detailed description of the sample and research process (Guba

& Lincoln 1981, Miles & Huberman 1994).

Equal attention to rigour was paid to the children’s and the

parents’ data. Children’s data were seen to hold the same

value and credibility as parents’ data. Rigour was maintained

during the interviews by MM checking that she correctly

understood the sense of what the children (and parents) were

trying to convey. Audio-recording and verbatim transcription

of the interviews created accurate textual expressions from

which to proceed with analysis and interpretation. Verbatim

quotations were used in the findings to assist the reader to

establish the trustworthiness of the study (Guba & Lincoln

1989). Collaborative discussions on interpretative themes and

thematic descriptions of the phenomena were held with

members of the supervision team. This helped to re-examine,

re-interpret and reformulate the thematic description of the

phenomena (Van Manen 1990) and enhanced methodological

rigour in terms of credibility.

Results

Ten children (aged 4–17, time since diagnosis 10 months–

eight years) and 11 parents (10 mothers, one father) were

interviewed (one couple was interviewed together). The

children who participated were: Reece (aged 4); Amy (aged

6); Zac (aged 7); Zoe (aged 8); Rabena (aged 9); Misha (aged

10); Subena, Neela and John (aged 15) and Marie (aged 17).

The children were from different cultural backgrounds

(Asian, Eastern European, Jamaican, Irish, English).

Four themes – transition, attachment, loss and meaning –

were common to the children’s and parents’ data with

‘normal’ being the central unifying theme; these are now

presented.

Transition

Children identified transition as ‘moving on’, becoming

independent in their choices and decisions and appreciate

the challenge to their relationships with their parents. Marie

(aged 17) described the tensions between wanting to become

more independent and leave home and her mother’s desire to

keep her safe:

I would like to in a couple of years, to move away, say to uni., but

Mum doesn’t think it is going to happen. Well I don’t really think she

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wants it to happen in case, well, I have the whole scenario from

Mum. If you are in your room and are on your own and you had a

hypo, who is going to look after you…?

For parents, transition brought changes in the parent–child

relationship, which was often influenced by the way their

child chose to self-manage their diabetes. Parents expressed

difficulty in striking the balance between being interested and

attempting to control self-care activities. Parents became

concerned that their child regarded other things (such as

external activities) as being more meaningful than their

diabetes care. These differing perspectives often resulted in

tensions as John’s mother expresses:

It’s made me more wary with John being the age (15) that he is now.

When he was younger it was a lot easier because I could have control

over his life; it was easier to control what he was eating, when he was

eating it, when he was having his injections. I think it is a lot

more worrying, just because he’s sort of outside more than he was as

well.

Her anxiety, typical of other participant mothers, stemmed

from the fact that she no longer controlled his diabetes self-

care activities or the choices he made, which often conflicted

with his diabetes self-care. Even parents of younger children

were consciously thinking about their child’s transition

through adolescence, envisaging this as a stressful time.

Parents worried that as their child’s knowledge of the

significance of diabetes increased, they might not be able to

accept it. Reece’s mother described her anxieties about

Reece’s (currently aged 4) adolescence:

I think as Reece gets older and he learns more about it, I don’t think

he will like it at all, really don’t. I don’t think he will like it one bit.

You know when he gets to be a teenager and they don’t find a cure

for it, you know. When he doesn’t come home for his tea and I don’t

give him his insulin, that’s what going to be the nerve-wrecking bit

for me. I wouldn’t be a 100% sure that he has taken it.

Parents were anxious about their child growing up and

becoming independent, but accepted that they needed to

learn to trust and support their child make decisions and

choices; this was ‘the nerve-wrecking bit’.

Attachment

Relationships also figure strongly in the attachment theme.

Attachment, the tendency of human beings to form strong,

lasting affectionate bonds with others can explain many

forms of emotional distress, detachment, anxiety and depres-

sion that occur when unwilling separation or loss is experi-

enced (Bowlby 1977). Attachment was changed by T1DM

and most often seen in parents who felt that their child was

still very dependent on them:

You know when he was a baby [Zac now aged 7], lifestyle revolves

around that child and as they grow up, you grow up with them. So

there were some things I was no longer doing (aged 7), like waking up

in the night, I was no longer doing that and I was, like, also leaving

him in a particular place for a few hours but I couldn’t do that

anymore because it was constantly there in the back of your mind:

What’s happening to him?

Mothers also felt that, despite the child’s age or their ability

to self-care for their diabetes, it was necessary to check on

them to reassure themselves that their child was well. Their

child was always in their thoughts and, as a consequence,

they were unable to switch off as Subena’s mother clearly

described:

Because it’s still there (diabetes) any way, even though she grown up,

it still gets to you that you had better check on her. You never know.

Factors contributing to the changes in the attachment process

included the discomfort of the illness, its physical impact, side

effects of treatment and stigma. Amy (aged 6) described her

parents’ specific roles in relation to her diabetes care. She was

emphatic, stating that ‘No’ she would not let her father help

‘do the jags [insulin injections]’ because ‘…he really jabs it in. It’s horrible’. Amy had created some level of control over her

treatment, even if she marginalised her father as a result.

Amy’s mother clearly recalled diagnosis 10 months ago and

how she:

… burst out crying. All I saw was needles because I had seen my

friend with needles. I didn’t know it was as complicated as it is.

I didn’t have a clue. Petrified I still am out of my own skin. It took me

about three days before I would actually use the needle on her.

I wouldn’t do it. Every time I went to do it, she cried ‘You’re hurting

me, Mummy. Don’t do that! It’s hurting me!’. Of course you can’t do

something painful to a child when they are like that, can you? So that

was the first day of the rest of my life.

Attachment meant a realignment of her role as a mother; she

now cared and hurt her child on a daily basis. Zoe’s (aged 8)

mother described her feelings when she was told the diagnosis

six years ago:

…I thought there was a misunderstanding, that I hadn’t heard them

properly. It was only when I actually got to hospital that it actually

hit me. I wish she could have been a bit older so I could have seen the

signs.

For parents, the meaning of illness was evident in the way

they described the physical work of managing their child’s

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T1DM, their emotional responses and the stress they expe-

rienced. T1DM was often described as ‘pain’ as Rabena’s

(aged 9) mother describes:

She feels pain sometimes, but I will do the injections and sometimes

she just sits very quietly. Sometimes she screams and sometimes she

starts crying and I feel pain, so much pain.

The diagnosis of T1DM resulted in multiple losses, partic-

ularly for parents and older children, through the changes in

attachment.

Loss

Parents experienced many losses, including the loss of their

previously healthy child, loss of their freedom and loss of

confidence. Parents talked of their failure to protect their

child from developing the condition, their concerns about

being able to protect their child in the future and how this

had affected their confidence as parents. Reece’s mother

remembered the shock that she experienced:

You never expect your child, you know, to be ill and I remember

being in hospital and everyone was talking to me about this, diabetes.

I just remember I weren’t taking it in, it was a big shock. I was crying,

I was upset. When they were telling me other things, I had to do with

him every day and I had to, he had to, even bringing him home, I was

petrified, I just thought: ‘My poor child’.

Misha’s father talked about his struggle in dealing with the

uncertainty that his daughter’s diabetes created:

Every time that she does get near a hypo, when her figures are low,

I do find myself, maybe I don’t show it as much, but deep down I do

have a bit of a panic attack thinking this could lead into something

else. Is she going to collapse?

Parental data showed a grieving period following the loss of

their child’s health evoked by a radical disruption of the pattern

of their lives and the disruption of child/parent relationships of

attachment. This grieving process ran a natural course,

culminating in parents coming to terms with their loss to

provide the necessary diabetes care for their child.

The children talked of loss in terms of a loss of spontaneity

as they could not just do things like other children, Marie

(aged 17) explained:

Trying to remember to bring certain things with you when you are

going anywhere, or as Mum says, have you got your little snack in

your bag, have you got your glucose sweets, but I have them all the

time, I check everything before I go.

The children who were older when they were diagnosed

had a different sense of loss to those who were very young

and could remember less about their life before diabetes.

Zoe (aged 8 diagnosed at 18 months) talked about what

might best be described as a ‘loss of health’ and what

needs to be done to make her healthy again. When asked if

she thought she would always have diabetes she replied

‘It’s up to you [health professionals]… see if you can do anything’. She explained her ideas (and through these

expressed what diabetes meant to her) about getting rid of

her diabetes:

Trying to get all the bad parts out of my body, what diabetes put

there. Diabetes put bad parts into your body, that’s how you get it, so

if you get them out it could change so I won’t be diabetic.

Meaning

The ways the children and the parents made sense of

diabetes and understood it were similar; both had an

embodied and social sense of what diabetes meant to them.

Zoe’s description of diabetes putting ‘bad parts into your

body’ eloquently shows this. Diabetes brought bodily

changes, disruption and intrusion into family life. Diabetes

had major consequences for children’s lives, often as a result

of the disruptive symptoms and intrusiveness of daily

regimes. Rabena (aged 9) graphically described how:

…When I have hypos I can’t move my legs. My friend had an

accident, she can’t walk now; that’s how I feel when I have a hypo.

These sorts of descriptions reflect Bury’s (1991) work on

biographical disruption, which frames the experience of

chronic illness as an assault on the physical self. This can lead

to a loss of confidence in social interaction, such as Zoe (aged

8) experienced:

When we went to the youth club, everybody teases me with sweets.

I got upset, everybody always goes, ‘Ah, Zoe, look! Do you like a bit

of it? Oh no, I forgot you’re not allowed it, are you, right?’. But if

they are buying stuff from the shop they go, ‘Ah, look, Zoe!’ and they

walk away and people tease me, saying that I am not allowed it.

For Zoe, the consequences of diabetes were the teasing she

experienced and the distress this caused. Bury (1991)

describes two types of ‘meaning’ when living with a

chronic illness: the meaning in relation to the consequences

(such as disruptive symptoms) and meaning in relation to

its significance. Subena clearly saw her diabetes as signif-

icant and needed to find out more about her family history

as:

It feels kind of different. I’m the first one to get it. I’m always

asking did anyone have it, like a grandma or ancestor. I kind of feel

a bit left out.

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Parents often mirrored the ‘why me’ response with a ‘why my

child’ response. Subena’s mother felt this was a question she

could not escape from:

[I ask]… why she got it how she got it because the questions there in your head the questions are sometimes on my head, why did she get

it? Or we haven’t got them in our genes why did she get, how she got

them. It does bug you sometimes when you sit down thinking about

it, it goes round and round in your head and you think why how, how

did it happen why did it happen and all these questions.

Other families understood meaning through the changes

wrought to their families and their future plans. Eleven

months after Neela’s diagnosis, her mother has some sense of

meaning and acceptance:

You look back and think, oh then, you know, but definitely I think,

now, we have completely accepted it. And completely. Maybe it is

just positive attitude towards it, positive thinking, you can overcome

anything. Whatever happens to you or you know and medicines are

advancing all the time so at the minute she is just coping very well,

she is so happy and she is such a good kid, you just think treasure it.

Achieving normality

Over time, living with T1DM became normal and ‘being

normal’ was seen as something significant to aspire to. The

families became so familiar living with the condition on a

daily basis that, despite its unpredictable nature, it became

normal to live with it.

‘Normal’ was strongly related to wanting to be seen and

treated the same as non-diabetics, even though the children

knew that to manage their diabetes, there were ‘things’ they

had to do that their friends did not. Subena explained:

They [friends/family] don’t treat me as different. Everything is kind of

the same, just normal. They treat me like someone who isn’t diabetic.

They treat me like I’m just a normal person.

Although Subena is aware her life is different, she also sees it

as being ‘kind of the same’; being normal was important.

Kelleher (1888) explains that wanting to be seen as normal

relates to the impact that chronic illness has on a person’s

identity, which may involve a person ‘bracketing off’ its effect

and incorporating the illness and its regimens into their

identity and public life. Fitting in with the peer group is a

normal stage of development, but for adolescents with

diabetes, they may go out of their way to appear normal to

achieve this desired state of normality. This increases

demands on them, as high levels of motivation and self–

control are required to minimise both the short and long-term

effects of the condition.

Discussion

The themes of transition, attachment, loss and meaning are

consistent across the children and parents: normal being the

unifying theme. Although these are not exclusively experi-

enced by families who have a child with T1DM, they become

more visible and assume greater importance. These themes

are complex, interlinked and interdependent. Transition

becomes a visible source of tension at times as diabetes

means different things for the children and their parents and

because it is linked with shifts in attachment, fears about the

consequences of making certain decisions and choices and the

real potential of significant loss (the death of the child).

Transition, attachment, loss and meaning can be explained

through the quest to ‘be normal’; albeit that being normal is

different for each child and parent as well as different

between each child and their parents.

For children, particularly the older ones, transition was a

natural and normal part of growing up, looking forward to

the future, ‘moving on’ and becoming independent in the

choices and decisions they made. Whilst transition was seen

as normal for the children, parents perceived it as more

troubling as they saw it as both a ‘moving on’ which was

good and a ‘moving away’ which brought with it concerns

and fears. Moving on and away (which mirrored the child’s

developing independence) meant moving away from the

safety of parental management to increasing responsibility for

the child to self-manage their diabetes. When parents were in

control they felt able to create a relative safety. Handing on

and over responsibility meant that they relinquished this

oversight and had to rely increasingly on their children to

keep themselves safe.

Parental reaction to the changes that occur in the parent/

child relationship during transition can directly affect chil-

dren’s behaviour and affect self-care. Schur et al. (1999)

suggests that parents who understand what diabetes means to

their child are in a better position to provide them with the

necessary support. However, knowledge and understanding

alone are not the answer as parents also need to know how to

support their children (Kyngas & Hentinen 1995). Some

parents became stressed when having to accommodate their

children’s apparently less than optimal choices about their

diabetes self-care. Tensions existed between the children’s

pull towards greater independence and parents’ awareness of

the potential risks resulting from poor self-management

(Hentine & Kyngas 1992). Parents tried to achieve normality

and balance in managing their child’s diabetes whilst not

treating them completely differently to everyone else in the

family. However, the parents recognised that their child’s

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diabetes influenced many of their decisions (see also Eiser

1990). Lowes and Lyne (1999) report that some parents

change the whole family’s lifestyle to accommodate the

condition, believing that by doing this they can minimise the

child’s differences so that they appear ‘normal’.

Unlike other UK studies (Hatton et al. 1995, Miller 1999

and Lowes et al. 2005), which do not extend beyond the peri-

diagnostic period, our findings show that, whatever their

children’s age or ability to self-care, parents needed to

reassure themselves by checking on them. Their child’s

diabetes was always in their thoughts; consequently, they

were unable to switch off and attachment was changed. This

‘hyper vigilance’ resulted in some children feeling that they

were constantly being checked up on or that their parents

were being controlling and were more interested in their

diabetes than in them as a person. The tension is apparent

here. It was simply not an option for parents to carry on as

(prediabetes) normal; they had to come to terms with the

challenges of parenting a child with diabetes and find a ‘new

normal’ mode of parenting their child. Parents struggle with

their child’s usual as well as specific developmental needs.

According to Robinson (1993), this can often result in a trade

off; whilst ‘good’ glycaemic control may be a primary aim for

both parents and children, this can be traded off to allow the

family to feel they live a normal life (Pattison et al. 2006).

Children have to accept more responsibility (such as refusing

sweets and being careful) than their peers and have to

accommodate an individual diabetic notion of ‘normal’ into

their lives.

For parents, the future is one where their child is no longer

the healthy child they were before diabetes and this constrains

their parenting. Their loss of freedom and of confidence as

parents takes time to address (see also Lowes et al. 2005).

Parents have to ‘make normal’ the news that their child’s

condition is life-long, requires complex management and

brings short- and long-term risks to their future health. Parents

live the fact that they are different from other families but,

despite this, as their confidence and experience grows, they

normalise these differences and diabetes becomes normal.

Being a normal parent, a normal child (regardless of

ethnicity, age or duration of T1DM), a normal family

underpinned much of what occurred within the families in

this study. Diabetes meant disruption. Diabetes meant

change. Diabetes meant doing things – such as injections,

worrying about their child eating birthday cake at parties –

that had never been imagined before the diagnosis of

diabetes. Diabetes meant coming to terms with a potentially

life-threatening illness. Diabetes meant asking ‘why me?’ and

‘why my child?’ and not necessarily getting answers that

helped make sense of having to live with diabetes. Yet,

despite the difference that diabetes caused to children and

their parents, diabetes did not mean the end of being normal.

Every child, every parent and every family created and strove

(to a greater or lesser degree) to place diabetes into the

background of their lives to achieve what they wanted, which

was a ‘normal life’.

Limitations of the study

Only 10, albeit diverse, families participated limiting the

generalisability of the findings. Only one father participated

and future studies would benefit from greater involvement of

fathers. MM was also the participants’ diabetes nurse, which

could potentially have constrained disclosure and discussion;

however, it seemed to have the opposite effect and the

children/parents seemed to be relaxed and happy to share

in-depth information.

Conclusion

Understanding children’s and parent’s experiences of living

with T1DM should help practitioners to begin to appreciate

the meanings ascribed, the work involved, particularly for

parents, in managing their child’s diabetes and having a

‘normal life’. Further research is needed to extend under-

standing of what children and their parents mean by ‘normal’

and how they frame normal in respect of their lives, their

family, peers and society.

Relevance to clinical practice

Conducting child- and parent-centred qualitative research

allowed exploration of the perceptions and understanding of

T1DM and the meaning ascribed to it by children and their

parents. A more sophisticated understanding of the impact of

diabetes, from diagnosis onwards – on the everyday lives and

experiences of children and their families, can help shape

nursing care to help meet specific needs of families who have

a child with diabetes.

Acknowledgement

This work has been supported by a small grant awarded by

Novo Nordisk.

Contributions

Study design: MM (with guidance from BC, KR); data

collection: MM; analysis: Lead by MM with support from

BC, KR, AB; manuscript preparation: MM, BC, KR, AB and

Parental care-giving Living with type 1 diabetes

� 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd, Journal of Clinical Nursing, 18, 1703–1710 1709

all authors have contributed to development and revision of

article.

References

Alderson P, Sutcliffe K & Curtis K (2006) Children as partners with

adults in their medical care. Archives of Disease in Childhood 91,

3000–3303.

Bowlby J (1977) The making and breaking of attachment bonds. The

British Journal of Psychiatry 130, 201–210.

Brett PR & Swift PGF (2003) Doctor, who will look after my child’s

diabetes? Archives of Disease in Childhood 88, 1.

Bury M (1991) The sociology of chronic illness: a review of research

and prospects. Sociology of Health & Illness 13, 451–464.

Docherty S & Sandelowski M (1999) Focus on qualitative methods:

interviewing children. Research in Nursing & Health 22, 177–185.

DoH (2001) National Service Framework for Diabetes: Standards.

DH, London.

DoH (2007) Making Every Young Person with Diabetes Matter.

Department of Health, London.

Eiser C (1990) Chronic Child Disease. An Introduction to Psychological

Theory and Research. Cambridge University Press, Cambridge.

Eppens MC, Craig ME, Cusumano J, Hing S, Chan AKF, Howard

NJ, Silink M & Donaghue KC (2006) Prevalence of diabetes

complications in adolescents with type 2 compared with type 1

diabetes. Diabetes Care 29, 1300–1306.

Golicki DT, Golicka D, Groele L & Pankowska E (2008) Continuous

Glucose Monitoring System in children with type 1 diabetes

mellitus: a systematic review and meta-analysis. Diabetologia 51,

233–240.

Guba EG & Lincoln YS (1981) Effective Evaluation. Jossey-Bass, San

Francisco, CA.

Guba EG & Lincoln YS (1989) Fourth Generation Evaluation. Sage,

Newbury Parks, CA.

Hatton DL, Canam C, Thorne S & Hughes AM (1995) Parents

perceptions of caring for an infant or toddler with diabetes. Journal

of Advanced Nursing 26, 259–577.

Hentine M & Kyngas K (1992) Compliance of young diabetics with

health regimens. Journal of Advanced Nursing 17, 530–536.

Kelleher D (1888) Diabetes. Tavistock, London.

Kyngas H & Hentinen M (1995) Meaning attached to compliance

with self-care and conditions for compliance among young dia-

betics. Journal of Advanced Nursing 21, 729–736.

Lowes L & Gregory JW (2004) Childhood diabetes: parents’ expe-

rience of home management and the first year following diagnosis.

Diabetes Medicine 21, 531–538.

Lowes L & Lyne P (1999) A normal lifestyle: parental stress and

coping in childhood diabetes. British Journal of Nursing 8, 133–

139.

Lowes L, Gregory JW & Lyne P (2005) Newly diagnosed childhood

diabetes: a psychosocial transition for parents? Journal of

Advanced Nursing 50, 253–261.

Marshall M, Carter B & Rose K (2006) Adolescents living with

diabetes: self-care and parental relationships. Journal of Diabetes

Nursing 10, 8–13.

Mazur A, Grzywa M, Malecka-Tendera E & Telega G (2007)

Prevalence of glucose intolerance in school age children. Popula-

tion based cross-sectional study. Acta Paediatrica 96, 1799–1802.

Miles MB & Huberman MA (1994) An Expanded Sourcebook.

Qualitative Data Analysis, 2nd edn. Sage Publication, London.

Miller S (1999) Hearing from children who have diabetes. Journal of

Child Health Care 3, 5–12.

Morse J & Field P (1996) Nursing Researcher. The Application of

Qualitative Approaches, 2nd edn. Chapman and Hall, London.

National Institute for Clinical Excellence (NICE) (2004) Type 1

Diabetes: Diagnosis and Management of Type 1 Diabetes in

Children, Young People and Adults. Clinical guidance 15 NICE,

London.

Pattison HM, Moledina S & Barrett TG (2006) The relationship

between parental perceptions of diabetes and glycaemic control.

Archives of Disease in Childhood 91, 487–490.

Robinson CA (1993) Managing life with a chronic condition: the

story of normalization. Qualitative Health Research 3, 6–28.

Schur HV, Gamsu DS & Barley VM (1999) The young person’s

perspective on living and coping diabetes. Journal of Health

Psychology 4, 223–236.

Sullivan-Bolyai S, Deatrich J, Gruppuso P, Tamborlane W &

Grey M (2002) Mothers’ experiences raising young children with

type 1 diabetes. Journal of Specialists in Pediatric Nursing 7,

93–103.

Van Manen M (1990) Researching Lived Experience – Human

Science for an Action Sensitive Pedagogy. The Althouse Press,

ON.

Vollrath ME, Landolt MA, Gnehm HE, Laimbacher J & Sennhauser

FH (2007) Child and parental personality are associated with

glycaemic control in Type 1 diabetes. Diabetic Medicine 24, 1028–

1033.

M Marshall et al.

1710 � 2009 The Authors. Journal compilation � 2009 Blackwell Publishing Ltd, Journal of Clinical Nursing, 18, 1703–1710