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Social Science & Medicine 71 (2010) 1796e1803

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Social Science & Medicine

journal homepage: www.elsevier .com/locate/socscimed

How children and young people construct and negotiate living withmedical technology

Susan Kirk*

School of Nursing, Midwifery and Social Work, Oxford Road, University of Manchester, Manchester, United Kingdom

a r t i c l e i n f o

Article history:Available online 15 September 2010

Keywords:UKChildrenDisabilityChronic illnessHealth technologyBodyNormalisationIdentity

* Corresponding author. Tel.: þ44 1613067872.E-mail address: sue.kirk@manchester.ac.uk.

0277-9536/$ e see front matter � 2010 Elsevier Ltd.doi:10.1016/j.socscimed.2010.07.044

a b s t r a c t

Increasing numbers of children need the support of medical technology for their survival and wellbeing,yet little is known about their experiences of living technology-assisted lives. This study aimed to explorehow this group of children experience and construct medical technology and its influence on theiridentity and social relationships. Using a Grounded Theory approach, 28 children/young people agedbetween 8 and 19 years old and using different types of medical devices were recruited via nursingservices in England. Data were collected by in-depth interviews conducted in children’s homes. Themedical technology occupied an ambivalent position in children’s lives being seen as having both anenabling and disabling presence. Children actively engaged in work to incorporate the technology intotheir lives and bodies by developing strategies to manage their condition, the technology and theiridentities. This body work appeared to be driven by a desire to ‘normalise’ their bodies and their lives.Technologies were shaped to integrate them into everyday life and children managed their self-presentation and controlled information about their condition. This work was ongoing, responding tochanging social contexts and relationships. For these children the process of ‘growing up’ involvesincorporating disability, illness and technology. This study contributes to knowledge by examining howmedical technology is constructed by children whose lives are dependent on it and illuminating theresources and strategies they use to manage their identity and negotiate peer culture interactions andnorms.

� 2010 Elsevier Ltd. All rights reserved.

Introduction

In the past decade medical advances have led to the emergenceof a group of children who need the support of medical technologyfor their survival and wellbeing. Most are no longer destined to livetheir lives in hospital and institutional settings but to live their livesat home with their families; although the development of servicesto support families has not kept pace with these medical andtechnological advances (Kirk & Glendinning, 2004). While researchhas illuminated how parents experience caring for this group ofchildren (Heaton, Noyes, Sloper, & Shah, 2003; Kirk, Glendinning, &Callery, 2005), only a small number of studies have directlyaccessed children’s perspectives (Atkin & Ahmad, 2000; Earle,Rennick, Carnevale, & Davis, 2006; Noyes, 2000a, 2000b, 2006).The lack of a child’s ‘voice’ in this literature reflects the paucity ofresearch exploring children’s understandings of disability and long-term illness. However, there has been increasing recognition of the

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importance of including children’s perspectives in health-relatedresearch. This is a result of both the Children’s Rights movementwhich has reframed the social status and position of children andthe influence of the ‘new’ sociology of childhood which theoriseschildhood as being socially constructed and sees children ascompetent social actors who actively shape their social worldsand possess different experiences and knowledge to adults(Christensen & James, 2000; James & Prout, 1997). Consequently interms of research children are now viewed as active agents and theinappropriateness of adult proxies providing accounts of children’ssocial worlds is increasingly recognised.

Childhood disability has also been reconceptualised. In the pastresearch about disabled children was dominated by the medicalmodel of disability and focused on how children adapted psycho-logically and emotionally to the ‘personal tragedy’ of disability,conceptualising them as dependent rather than active social agents(Connors & Stalker, 2007). Similarly research about childhoodchronic illness has been criticised for focusing on psychologicalfunctioning and adjustment and taking a deficit centred perspec-tive (Darbyshire, Oster, & Henning, 2006; Woodgate, 1998).Increasingly the social model of disability is underpinning research

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and as a consequence the environmental, social and attitudinalbarriers faced by disabled children and their families are beingexamined andmore emphasis placed on howchildren actively copewith their situation. Unlike disabled adults, the interpretation ofthe social model in relation to children has included recognition ofimpairment and the physicality of the body as well as emphasisingpersonal experience (Connors & Stalker, 2007).

Table 1Characteristics of the young people in the sample (n ¼ 28).

Characteristic Number

Technology/device usedGastrostomy/jejunostomy 19Intravenous drug therapies 7Mechanical ventilation 6Tracheostomy 4Oxygen therapy 4

Children’s understandings and experiences of disability and chronicillness

The developing body of research exploring children’s under-standings of disability and long-term illness has described howchildren appear to be positive and pragmatic and to not constructtheir lives in terms of loss or tragedy (Connors & Stalker, 2007).Research has described how children use strategies to prevent theircondition or impairment dominating their lives (Atkin & Ahmad,2001; Woodgate, 1998). In general studies suggest that they seethemselves as the same as other children, enjoying similar activitiesand having similar aspirations until situations arise which highlighttheir difference from their non-disabled peers (Atkin & Ahmad,2001, 2000; Christian & D’Auria, 1997; Connors & Stalker, 2007;Herrman, 2006; Prout, Hayes, & Gelder, 1999). Understandings ofdisability appear to occur through concrete experiences of attitu-dinal and physical barriers to participation in mainstream societyand associated feelings of loneliness and exclusion (Atkin & Ahmad,2001; Connors & Stalker, 2007; Herrman, 2006; Watson et al.,2000). While some children may experience their differencepositively, it is apparent that others conceal their impairment,selectively disclosing their difference or presenting themselves as‘normal’ in order to construct and maintain a positive self-identity(Atkin & Ahmad, 2000, 2001; Christian & D’Auria, 1997; Gjengedal,Rustoen, Wahl, & Hanestad, 2003; Prout et al., 1999; Williams,2000). It has been suggested that children are resourceful, crea-tively using coping strategies to live ‘normally’ and maintaina positive identity (Atkin & Ahmad, 2001; Gabe, Bury, & Ramsay,2002).

Parenteral nutrition 1Peritoneal dialysis 1

Number of medical technologies/devices usedOne 15Two/three 13

GenderMale 17Female 11

Age8e11 years 912e15 years 1116e19 years 8

Education/workMainstream primary school 6Special education primary school 2Mainstream secondary school/college 5Special education secondary school/college 9Work 1Further/higher education 2Unemployed 2Other 1

Parent key informantsMother 8Father 0Mother and father 1

Parental presence in interviewsParent present for complete interview 5Parent present for part(s) of interview 5Parent not present 9

Technology and the body

There has been increasing interest in the relationship betweenthe human body and technologies (particularly personal computersand the Internet) and how body experience and selfhood arealtered by the humanemachine interface (Lupton & Seymour,2000), through extensions to the boundary of the body and theformation of virtual identities. However, this literature has tendedto focus on the enhancing capabilities of technology and ‘the body’being considered is usually one free of illness and impairment(Lupton & Seymour, 2000). Moreover the body in question isusually that of an adult and not a child. In relation to disability, theplace of technology can be contested. While it may facilitateparticipation, technology may divert attention from the societalbarriers disabled people experience or in itself be controversial (forexample, cochlear implants) (Lupton & Seymour, 2000). Medicaltechnology influences how bodies are socially identified andpersonally experienced and can be constructed as ‘taken for gran-ted embodied extensions of the self’, continuous with a sense of selfand the body (Timmermans & Berg, 2003). How needing life-longsupport of medical technology influences children’s developingpersonal and social identities has received little attention empiri-cally or theoretically to date.

The study reported in this paper aimed to explore how medicaltechnology was experienced and constructed by children and howit influenced their identity and social relationships with others.

Research methods

The study used a grounded theory approach (Strauss & Corbin,1998) to explore how children experienced living with medicaltechnology.

The sample

The sample was recruited through Community Children’sNursing Teams in England. The inclusion criteria were that childrenwere aged between 8 and 19 years old and needed the continuingsupport of one or more of the following medical technologies e

mechanical ventilation; tracheostomy; oxygen therapy; enteral/parenteral feeding; peritoneal dialysis or intravenous therapies.Children were purposively sampled to ensure maximum variationin terms of age, gender and type of technology in order to explorewhether such characteristics influenced how technology wasexperienced. The final sample included 28 children (Table 1). ANational Health Service Research Ethics Committee approved thestudy. Informed assent/consent was obtained from all children andfrom the parents of those aged under 16 years who were providedwith detailed information about the study aims and issues theinterviews would explore. In the data extracts presented the namesgiven are pseudonyms chosen by participants.

Data collection

Datawere collected by in-depth interviews. Childrenwere giventhe choice of being interviewed with or without their parents

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present. Interviews explored their understandings and experiencesof the technology within the context of their everyday lives andrelationships. In the interviews with young children or wherechildren had a learning disability ‘spidergrams’ (drawings of spiderswith a box at the end of each leg) were used as means of engaginginterest and facilitating communication (Stalker & Connors, 2003).Different ‘spidergrams’ were used to explore different issues, forexample, ‘people who are important to me’, ‘things I like to do’.Children chose whether they wished to write in the boxes them-selves or whether they preferred the researcher to complete themon their behalf. In all the interviews where parents were present(except one where a mother dominated) their presence enhancedthe data generated as theywere able to clarify events or ask specificquestions that added to their children’s accounts and deepenedunderstanding. Parents were the key informants on the lives of ninechildren who did not use verbal communication or alternativecommunication systems. Hence only a partial view of their socialworlds could be obtained and one based on parental interpretation.Where children had a mild/moderate cognitive impairment inter-views were tailored to the individual, for example, ‘spidergrams’were used in some situations, questions were modified and inter-views paced in relation to level of understanding. In the analysistheir accounts were analysed alongside data collected from otherparticipants and similarities and differences examined. Interviewswere conducted in family homes and were recorded and fullytranscribed for analysis. Field notes recording contextual informa-tion surrounding the interviews were also transcribed. The studywas conducted between 2005 and 2007.

Data analysis

Interview transcripts and field notes were imported into thequalitative data management program NVivo. Data were analysedin accordance with Grounded Theory principles (Strauss & Corbin,1998). Open and focused coding was used to develop categoriesand the relationships between categories were explored using theconstant comparison method. Differences within the sample interms of age, gender, nature of the technology used and degree ofimpairment were examined.

Findings

‘Living an ordinary life’ emerged as the core category in theanalysis that connected the sub-categories. The three main sub-categories developed were ‘living with medical technology’,‘ascribing meaning to the technology’ and ‘incorporating thetechnology’. ‘Living with medical technology’ analyses the widercontext within which the technology is situated. Against thiscontext young people made sense of and ascribed meaning to thetechnology e a meaning that was characterised by ambivalence.Young people developed strategies to manage their condition, thetechnology and their identities in order to incorporate the tech-nology into their lives and bodies and ‘live an ordinary life’. Thisrequired continual work in response to changing social contextsand relationships.

The context of living with technology

From participants’ accounts it was evident that the technologywas not seen in isolation from the wider context of children’severyday lives and their long-term condition/impairment. Theirlong-term condition required them (and their parents) to engage inillness work as therewere therapy regimens to follow, symptoms tomanage and condition-related decisions to make. For children notprofoundly impaired, as they grew older they had come to know

their own bodies; its needs and how it reacted to different situa-tions and develop expertise in managing the technology. Alongsidethis they were growing up and experiencing various life transitions,including the negotiation and transfer of illness work and self-careresponsibilities from their parents.

The children had all been disabled or had a long-term healthcondition from infancy and had thus experienced medicalisedchildhoods (Earle et al., 2006). Consequently for many childrenmanaging their condition had become an everyday activity andhealth professionals and hospitals were a familiar and regularpresence in their lives due to frequent hospital admissions andappointments.

The technologies children used ranged from those thatwere visible all the time to those that were only visible in certainsituations (for example, when swimming) to those that werecompletely hidden. In addition, some technologies could be con-tained temporarily and spatially. For some children this meant thattherapies could be contained to the home environment and/ornight-time, although they still retained an implanted device in theirbodies and the technology could still be visible in the home envi-ronment to any visitors. Other children needed the support of thetechnology outside the house and for the entire day. Thirteenchildren/young people usedmore than onemedical technology. Formost children technology was a continual presence in their bodies;it was part of them physically and symbolised their condition andtheir difference. As will be discussed children engaged in identitywork in order to present a ‘normalised’ self to others.

The meaning of the technology

In their accounts it was apparent that children’s views andconstructions of the technology were characterised by feelings ofambivalence. It was seen as having both an enabling and disablingpresence in their lives. As studies of adults needing the support ofmedical technology have described, the devices were seen as both‘friend’ and ‘foe’ (Gately, Rogers, Kirk, & McNally, 2008).

Technology as an enablerIrrespective of age and device children saw the technology as

sustaining and improving their health. They associated it withhaving fewer infections, gaining weight, feeling less tired, sleepingbetter and experiencing fewer hospital admissions. These expla-nations were based on their own personal experience. Other chil-dren spoke about how the technology was keeping them alive.Their understandings were related to the explanations provided bytheir parents and health care professionals.

Paris was a fifteen year old girl with cystic fibrosis who neededovernight gastrostomy feeding and oxygen therapy as well asregular intravenous antibiotic therapy via a portacath (a medicaldevice installed under the skin that connects to a vein). Shedescribed how she felt that she would have died without havinggastrostomy feeds as she had lost a substantial amount of weightwhich she could not regain.

‘I wouldn’t be here now if I hadn’t had it’. (Paris)

Christy, an eight year old girl who was ventilator-dependentovernight due to a congenital condition, saw the ventilator as‘helping’ her to stay alive as itmade sure she breathedwhilst asleep.

‘That machine helps me stay alive’. (Christy)

As well as its life sustaining benefits the technology was alsoseen as improving relationships and enabling social participation.This was particularly associated with gastrostomy feeding andportacath implantation. Both children and parents described how

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having a gastrostomy had led to the end of mealtime battles asgastrostomy feeding had removed the need for children to eatmeals. This had had the consequence of improving relationshipsbetween children and parents by removing the pressure to eat fullmeals. However, although the technology sustained their life andhealth, children’s accounts revealed that it also structured andconstrained their interactions and daily lives.

Technology as a disablerSome children became accustomed to the presence of tech-

nology in their body over time and in effect it became a physicalextension of their bodies. This adjustment did not appear to berelated to age or technology use (in terms of type or number ofdevices or length of use). However, for others the technology wasseen as a continual source of physical pain and discomfort and theywere always aware of its presence (even if it had been ‘part of them’

since infancy). Christy described the uncomfortable feeling of beingventilated by a machine.

‘It’s not very nice, the thing that goes on your nose, and itsqueezes your face and really hurts... you can feel the air goinginto your body .. it’s almost as if someone’s shoved a can of airdown you’(Christy)

The technology’s physical presence intruded on their lives aswell as their bodies. Children described how their sleep could bedisturbed by the noise of the devices. Ray, a thirteen year old boywho had overnight gastrostomy feeds due to a gastro-intestinalcondition described how he was aware of the feeding pump’s noiseas it pumped the feed into his body as well as the feeling of hisstomach being filled.

‘You can hear like the slurp, slurp, slosh, of the feed goingthrough. It drives me nuts, you know it’s like a ticking clock, getson me nerves’ (Ray)

The technology medicalised bedrooms and other areas of thehome due to the presence of equipment and supplies such asventilators, feeding machines and syringes. However, homes werenot just medicalised by the presence of equipment, for somefamilies the technology was accompanied by teams of supportworkers employed to support the family. Consequently for somechildren the technology was associated with surveillance as theyneeded support workers during the day at school and at night tohelp them manage the devices and contend with emergencies.Christy who had a support worker to ‘watch over’ her at nightdescribed how this presence could lead to a loss of privacy and thefeeling of being under constant observation.

‘it’s not nice when people are sitting in your chair in yourbedroom staring at you’. (Christy)

This surveillance extended beyond the home and could haveimplications for children’s relationships with others. The presenceof support workers in school could mean that children’s lives therewere also under adult surveillance. This could mark them out asdifferent and place them at risk of peer exclusion particularly if theywere in mainstream schools where support workers wereuncommon. Relationships with parents could also be altered by thepresence of support workers. Pele, an eleven year old boy witha learning disability who had a tracheostomy and was ventilatedovernight due to a congenital syndrome, expressed feelings ofresentment at being accompanied by support workers on holidaysbecause it intruded on his relationship with his mother.

I can’t go away with just me and my Mum, I have to havesomebody else, if they starts alarming. I can’t have peace withmy Mum’. (Pele)

As well as influencing relationships the therapies and devicesstructured and imposed restrictions on daily life both at home andat school. Regimens could present a barrier to taking part inactivities, emphasising their difference to both themselves andtheir peers. This is exemplified by an everyday childhood event ea children’s birthday party. Christy described how needing to beventilated overnight meant that although she could go to herfriend’s party she could not stay for the ‘sleep-over’.

‘It stops me staying at friends. And like my friend, my friend, itwas a party, it were her birthday, and she was having a sleep-over party. I had to go, everyone else was staying, and I had to gohome’. (Christy)

The technology could influence and disrupt their experience ofschool. Break-times could be taken up by therapies rather than peergroup socialisation and for some children the technology had led tothem being excluded from school trips (both residential and day-trips). As with many young people with a long-term condition,periods of illness could lead to recurrent and lengthy absences fromschool which disrupted their social relationships (and potentiallytheir educational achievements).

As noted previously, the degree of visibility of the technologyvaried. When visible the technology could have consequences forinteractions with others in terms of how children were sociallyidentified and categorised. It symbolised their difference andcould pose a threat to their identity. Michael was a fourteen yearold boy with a tracheostomy who was profoundly impaired bycerebral palsy and was totally fed via a gastrostomy. His motherdescribed how his tracheostomy made him appear vulnerableand frightening to others which created a barrier to socialinteractions.

‘the trachie is a barrier in lots of respects . it makes him lookmore vulnerable than he is . it definitely creates a barrier. Ithink trachies frighten people’. (Mother of Michael)

For some children with life-limiting conditions the meaning ofthe technology and its significance lay in how it marked theprogression and deterioration of their condition. For one youngperson with muscular dystrophy his increasing need to usea ventilator marked his increasing muscular weakness. For anotheryoung person with cystic fibrosis overnight oxygen therapy sym-bolised her worsening lung condition and need for a transplant.

However, in their accounts children across the age range andwho used different devices (and parents) presented themselves asbeing determined to not allow the technology to define their livesor accept the barriers it created. Victor was a sixteen year old boywith a learning disability who had a tracheostomy and neededovernight oxygen therapy due to a congenital impairment. Hepresented himself as not seeing the tracheostomy as a ‘problem’

and having a philosophy of not allowing it to be barrier to takingpart in activities. With the support of his parents and supportworkers it appeared that he was successfully engaging in theactivities he enjoyed and planning to live independently.

It’s just a tracheostomy, it’s not, it’s not a problem. It’s not goingto stop you doing something that you want to do’. (Victor)

Young people with a life-limiting condition expressed a similarperspective though their reasoning was based on a determinationnot to allow either their condition or the medical technology stopthem fromwhat they saw as living a ‘normal’ life while they had theopportunity. Brittany was seventeen and had a portacath forregular antibiotic therapy. She worked full-time and describeda desire to engage in a ‘normal’ teenage social life as she was awarethat her condition might deteriorate in the future.

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‘I don’t think I’mnot going out, or I’mnot going to drink becauseI’ve got this, well it’s part of growing up is going out . you’vejust got to do it really. Because you’ve still got to live your life asnormal as you can, don’t not do anything . You’ve got to liveyour life while you can, especially if you might get ill as you’reolder, so you might not have the other opportunities, so if itcomes, take it’. (Brittney)

In order to live this ‘normal’ life, participants’ accountsrevealed how they worked at incorporating the technologyinto their lives and bodies by developing strategies to managetheir condition, the technology and their identities. The mean-ings associated with different technologies are summarised inTable 2.

Incorporating technology to live an ordinary life

Children’s (and parent’s) accounts revealed a goal of ‘living anordinary life’. This goal was evident in accounts from childrenacross the age range and who used different types and numbers ofdevices. An ‘ordinary life’was the one they perceived their peers (ortheir children’s peers) living currently or in the future. In their

Table 2Comparison of the meanings ascribed to different technologies and the strategies emplo

Meanings ascribed totechnology

Gastrostomy(n ¼ 19)

Ventilation(n ¼ 6)

Tracheost(n ¼ 4)

Sustaining life/improvinghealth

Yes Yes Yes

Improving relationships Yes No NoEnabling social participation Yes No No

Pain and discomfort Yes Yes NoDisturbing sleep Yes Yes NoMedicalising the home Yes Yes YesStructuring daily life Yes Yes NoMarker of possible ‘end of life’ No Yes No

Strategies usedAdjusting and working

around therapies/devicesYes No No

Controlling information(concealmentedisclosure)

Yes Yes Yes

Use of the strategy ‘controlling information’ was influenced by visibility of the technologyVisibility of technology Implanted device.

Revealed whenundressing or bywearing particularclothing.

All sampleventilated viamasks. Highvisibility unlessonly used at night.For night onlyusers equipmentvisible in home.

ImplantedVisible unconcealedclothing.

Spatial/temporal containmentof technology

Can be containedto home andnight-times. Somechildren needed feedsduring the day

Can be containedto home and tonight-times. Onechild neededventilation duringthe day as wellas night

Continual

accounts they presented themselves as the same as other childrenin terms of interests and aspirations. They described the socialactivities they engaged in (sports, gaming, going to pubs and clubs)and their future aspirations (living independently, having children).This self-presentation appeared to demonstrate to themselves (andthe researcher) that they were not defined by their condition.Indeed in some interviews participants emphasised their sportingachievements and physical ‘toughness’. These presentationsappeared to serve the purpose of bolstering a self-image of physicalstrength and vitality as well as a normative social image. Parentssimilarly described the social activities their children took part in(both with disabled and non-disabled children) and their aspira-tions for them to have a fulfilling and if possible an independentfuture life.

In their accounts it appeared that children used a number ofstrategies and resources to incorporate the technology into theirsocial and personal identities. While identity development is partof ‘growing up’ for all young people, this group had the additionalwork of incorporating their illness and technology. However, theywere not engaged in this illness and identity work alone, bothfamilies and friends were important sources of practical andemotional support.

yed.

omy Parenteralnutrition(n ¼ 1)

Peritonealdialysis(n ¼ 1)

Oxygentherapy(n ¼ 4)

IV Therapies(n ¼ 7)

Yes Yes Yes Yes

No No No NoNo No No Yes

(Portacathimplantation)

Yes Yes Yes YesYes Yes Yes YesYes Yes Yes YesYes Yes Yes YesNo No Yes No

Yes Yes No Yes

Yes Yes Yes Yes

and potential for spatial/temporal containmentdevice.lesswith

Implanted device.Revealed whenundressing

Implanteddevice.Revealedwhenundressing

No implanteddevice. Invisibleas sample usedoxygen at nightonly.

Some had animplanteddevice thatcould berevealed whenundressing.Others couldconcealdevices ortemporaryequipmentused.

ly present Containedto homeand night-time

Containedto homeand night-time

Contained tohomeand night-timefor this sample

Dependent ontype oftherapy. Somegiven only athome andin daytime;some fourhourly &involvedadministrationoutside homeand duringnight

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Managing their condition and the technologyChildren developed routines and ways of working to reduce the

intrusion of the technology and integrate it into the context ofa ‘normal’ life. This included adjusting the timing of various ther-apies or ‘working around’ the regimens and finding ways of takingpart in activities. This ‘working around’ regimens was associatedwith gastrostomy feeding, parenteral nutrition, peritoneal dialysisand intravenous therapies and occurred mainly in the context ofthe home.

Adam was a nineteen year old man with a gastro-intestinalcondition that meant that he needed parenteral feeding (admin-istration of nutrition directly into the bloodstream). Althoughcertain activities were not recommended by his doctors due to theimplanted technology in his body, he described how he had foundways of engaging in them.

‘There’s lots of things which you’re not supposed to be able todo, but if youmaybe alter things a little bit or compromise, workaround things, you can actually do them, like swimming andthings like that. It is possible, you’ve just got to be careful’. (Adam)

For many children it was clear that their parents worked withthem in adapting and adjusting therapies and routines. Zach wasa sixteen year old boy with a chronic lung condition (not cysticfibrosis) which meant he needed monthly antibiotic infusions andovernight gastrostomy feeds. He described how he and his parents(‘we’) decided to omit an overnight enteral feed to enable him tospend a night at a friend’s house.

‘We just sort of missed it, that one session. It was just a night, soit wouldn’t matter.’ (Zach)

Young people and parents appeared to make these decisionsindependently without seeking professional advice or sanction.

The characteristics of the technology in terms of design andpotential to be contained to time and space appeared to influenceincorporation. Some children were able to compartmentalise thetechnology as being separate from their ordinary lives andmaintainit in the background even though it was a continual physicalpresence. Being able to contain the management of their conditionin the home also potentially minimised the effect of the technologyon a ‘normal’ identity. Although, as described earlier, certain situ-ations such as the inability to spend nights at friends’ houses or goon school trips risked bringing the technology into the foreground.For other children though this was not possible; their need for thesupport of technology was visible, continuous or pervaded theirdaily lives to a greater extent. For children who needed the supportof more than one technology there was no indication in theiraccounts that the number of technologies needed altered thestrategies they used to incorporate the technology. However, therewere occasions when one technology could constrain the oppor-tunity to ‘work around’ others. The strategies associated withdifferent technologies are summarised in Table 2.

Managing identityIf the technology was not immediately apparent to other people

then children faced a dilemma in their social relationships overwhether to conceal or reveal their need for technology assistance(and their underlying condition). If they chose the latter then theyhad to produce explanations that were acceptable to themselvesand meaningful for their peers. Children’s accounts revealed theiruse of different strategies to manage the visibility and presence oftechnology.

Most children, particularly those at secondary school, wereselective in terms of revealing and concealing their need for tech-nology assistance and they managed their identities by controlling

information about themselves. This mainly involved only disclosingthe presence of the technology to a trusted group of friends. Chil-dren were also selective about the nature of the information theydisclosed. Paris described how different groups of her peerspossessed different levels of knowledge about her condition.

‘I’m quite private, no-one, there’s hardly anyone who knowsreally. Only like, I can name them, there’s about about 10,probably a couple more. But other people know there’s some-thing wrong with me. Like there’s something wrong with mylungs, and breathing and that, but they don’t know what it is.’(Paris)

Although many of the young people were in the mid and lateteens, only Paris spoke about explaining her condition to herboyfriend and having to be prepared for rejection. It illustrates alsothe potential for disclosure to lead to the need for children tomanage another person’s emotions.

I have something to tell you, but you might go off me about it. Ifyou go off me then I understand and if you don’t want to go outwith me no more, because it’s a lot to cope with. And he werefine about it, he don’t care, But he don’t like talking about it, hegets upset. (Paris)

The reasoning children provided for disclosure appeared to bethat hiding their difference risked heightening their peers’ curiosityfurther. They were aware that peers already suspected that theywere different due to various situations and behaviours such asschool absences and activity restrictions.

For some children controlling information (and for some‘passing’ as ‘normal’) was threatened when friends came to theirhomes as the technology could then be visible and lead to thenecessity to explain its presence. Reece, a ten year old boy whoneeded to be ventilated at night due to a congenital condition,described how he was aware that his peers knew about hiscondition but that only one friend had actually seen the ventilatorin his bedroom. He described the difficulties involved in explaininghis need for overnight ventilation to his friends and how he hadfound a way of articulating this in a direct, ‘matter-of-fact’ waywhich appeared successful.

Reece:’ Cameron has, because he comes in, not in my room, buthe knows, he knows about it, well everyone does, but they neversaw it, only one person saw it, and that’s Joe.’Interviewer: ‘Right, so how, how do you explain it to them?’Reece:’ Hard, hard to explain it. Just say I stop breathing atnight.’

Adam also explained how friends had seen the technologywhenvisiting his home but he saw this in a positive light as it meant hedid not have to explain his condition and need for technologysupport but just respond to their questions.

‘My friends used to come in and see me all the time, and theysaw it firsthand and it was like well, there it is, deal with it kindof thing, and I didn’t have to tell them about it, because it wasjust there, so it was quite easy for me, in the sense that I didn’thave to bring it up, and I’m happy to answer any questions thatmy friends may have, but I don’t have to, I don’t have to sort ofstart off the conversation, well this is, and it’s for, and all the restof it, which is quite good because I’m not good at starting offa conversation. I’m, I’m much better at answering questions’(Adam)

Children who were able to compartmentalise their therapiestemporally and spatially and lead apparently ‘normal’ lives outsidethe home also faced threats to their identity when school events

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occurred that had a residential element as they were often unableto participate in them. Another situation that put informationcontrol at risk was getting changed at school for sporting and otheractivities. Children were skilful in disguising the presence ofdevices in their bodies through the clothes they wore. In additionthey drew on the support of close friends in helping them concealdevices. Ben, a fourteen year old boy who needed peritoneal dial-ysis and overnight gastrostomy feeding due to renal failuredescribed how he managed changing for physical educationsessions at school in order to hide the presence of his gastrostomyand his dialysis catheter.

‘I have one person on one side, one person on the other, and I’min the middle. Anybody bothers me they just say, ‘eh come on,leave him alone, he’s just getting changed.’ So Philip, he’s a goodmate, he just, he’s tall, he’s massive, and he just stands there.’(Ben)

There were a small number of children (all boys and ranging inage from eight to thirteen) who concealed the technology in orderto ‘pass’ as ‘normal’. Their need for technology assistance andsometimes their condition was a secret from their friends.However, some of these children felt that their peers suspected thatthey were different in some way though this was not verbalised.These gendered differences were also found by Williams (2000).Another small number of children of different ages and gendersdescribed being very open about their condition and the devicesthey used. It appeared that they had been influenced in taking thisapproach by the beliefs and approach taken by their parents.

However, children varied in terms of how far the visibility of thetechnology or their impairment could be managed; for some it wasnot possible to ‘pass’. The technologies and other aspects of theirappearance (for example, using a wheelchair) marked them out as‘different’, often producing a stigmatising response from others.One young person who used a wheelchair and a ventilator wasassertive in challenging the stares and inappropriate commentsthat he encountered. However, for other young people theirimpairments made it difficult for them to take such an assertivestance. Some parents explained how their childrenwere ‘protected’from being aware of people’s reactions by their sensory and/orcognitive impairments, although this was something with whichparents themselves had to contend.

It appeared that most children were open (albeit selectively)about their condition and device use and had incorporated thetechnology into their social identity and daily lives. Somewere ableto contain the technology to the private sphere of the home andmaintain its invisibility though this could be compromised byvarious situations. Children negotiated living with medical tech-nology by actively engaging in work to incorporate the technologyinto their lives and bodies. This work appeared to be driven bya desire to ‘normalise’ their bodies and their lives. They developedstrategies to manage their condition by shaping the technologies inorder to integrate them into everyday life. Children engaged inidentity work by carefully managing their self-presentation andcontrolling information about themselves and their condition.However, for all children incorporating the technology andembedding it into their everyday life worldswas an ongoing projectrequiring continual work in response to changing social contextsand relationships.

Conclusions

While there is a growing body of research that has examinedchildren’s experiences of disability and chronic illness, veryfew studies have focused on those whose lives are sustained bymedical technologies. This study has explored how young people

experience, understand and negotiate living a technology-assistedlife. It has highlighted how children see medical technology as botha positive and negative presence in their lives and that its meaningis complex and nuanced. This paradoxical construction of medicaltechnologies as enabling and disabling, simultaneously improvingand constraining lives, is also evident in the literature on adultswho live technology-assisted lives (Ingadottir & Jonsdottir, 2006;Lindahl, Sandman, & Rasmussen, 2006; Locker & Kaufert, 1988;Wilde, 2003). Research relating to disabled children and thosewith a chronic illness has largely characterised therapies asdisruptive and restrictive (Atkin & Ahmad, 2000; Gabe et al., 2002;Herrman, 2006) with the positive meaning of technologies beingrarely recognised (Earle et al., 2006). In this study children haveemerged as active and creative agents who manage this tension byengaging in illness and identity work and whose social networksplay an important role in how they make sense of their condition.

Adult experiences and understandings of chronic illness arewelldocumented across many conditions and settings. Central to theexperience is a reconstruction of identity and a redefinition of self.However, this experience is likely to be different in the case ofchildrenwhose experience of disability and chronic illness has beenlife-long. Instead of conceptualising their experience as oneinvolving a process of transformation involving the restructuring ofidentity, it appears that for this group of children disability, chronicillness and the presence of medical technology may be an integralpart of the process of developing a social and personal identity.

Children’s identity development is seen as one of the challengesof adolescence and occurs largely through interactions with others,particularly peers. It involves integrating new found body changesinto a sense of personal identity (Kroger, 2006, p. 40). Comparingthemselves and their bodies with their peers is a means of con-structing normality, of judging their own status as well as devel-oping and maintaining their self-identity (Atkin & Ahmad, 2000;James, 2000). For disabled children and those with long-termconditions this aspect to identity development is more intense andinvolves additional work as their bodies are marked by theircondition in a very tangible and often visible way. The bodies ofthose needing the support of medical technology are central toidentity construction as the devices remain a physical and symbolicreminder of their difference and a constant threat to identity (Atkin& Ahmad, 2000;Wilde, 2003). Situations arise that emphasise theirdifference such as others’ reactions, institutional barriers andregimen restrictions which have to be managed. For children theirpeer group is an important context for identity development;identity is shaped by the peer culture which dictates appropriateself-presentation for group members (Adler & Adler, 1998, p. 15;Kroger, 2006, p. 54). Consequently the illness and identity work inwhich they engage seeks to minimise their difference from theirpeers, maintain their desired self-identity and essentially to ‘fit in’(Atkin & Ahmad, 2001; Balfe, 2009; Herrman, 2006).

Controlling information and self-presentation appeared to becentral to the children’s development andmaintenance of a desiredidentity. However, the constantmanagement of thiswas exhaustingwork. For those using the strategy of concealment they had tocontinuously engage in work to prevent their body being read bytheir peers as different and to ‘pass’. Disclosurewas also problematicin terms of assessingwhowas safe to disclose to and how to explaintheir often complex conditions to other children. The potentialconsequences of intentional or unintentional disclosure for childrenwere rejection and stigma. The nature of the technology is animportant influencing factor in negotiating disclosure. While tosome extent medical devices such as inhalers have become nor-malisedwithin children’s social networks (Gabe et al., 2002), orhavethe potential to be normalised as they resemble everyday objectssuch as mobile phones (Carroll, Marrerro, & Downs, 2007), other

S. Kirk / Social Science & Medicine 71 (2010) 1796e1803 1803

medical technologies do not have this status and thus incorporationis more problematic. The degree of intrusiveness of the devices andtheir ability to be contained in time and space supports a ‘normal’self-presentation (Atkin&Ahmad, 2001). In this studywhile parentswere important in terms of socialising children’s beliefs aroundconcealment and disclosure, it appeared that in terms of negotiatingthis children were alone and largely unsupported by adults, as itoccurred within peer friendship groups and wider social networks.For some children in the study there were no opportunities tonegotiate disclosure as their difference was visible immediately.Their awareness of their differencewasmorenuanced and appearedto relate to their exposure to non-disabled peers and their degree ofcognitive impairment. Many of this group of children lives revolvedaround segregated education and their family. As Noyes’s study ofventilator-dependent children noted many have little awareness ofnon-disabled children’s lives (Noyes, 2006). However, outside ofschool and their families they had experienced negative reactionsfrom people.

This study has highlighted how living with medical technologyis a complex process for children. The body work that childrenengage in appears to be driven by a desire for samenesseto‘normalise’ their bodies and their lives. The illness work componentincludes shaping the technologies and integrating them intoeveryday life while the identity component involves controllinginformation and self-presentation. While parents and other adultssupported young people in their illness work, it appeared that theirmain source of support in relation to identity work were friends asthe place for this type of work was largely their peer group. Thisstudy has illuminated the resources and strategies that technology-assisted children use to manage their identity and negotiate peerculture interactions and norms. However, this area remains underresearched, particularly in relation to how to develop and supportthe strategies children use to manage social interactions but morefundamentally to change non-disabled children’s attitudes todisability and difference.

Acknowledgements

The researcher would like to thank both the research partici-pants for sharing their experiences with her and the communitychildren’s nurses who provided valuable help with recruitment.The study reported in this paper was funded as part of a Depart-ment of Health/Health Foundation Primary Care Post-DoctoralFellowship.

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