The experience of children and families with lymphoedema - a journey within a journey

ORIGINAL ARTICLE

The experience of childrenand families withlymphoedema – a journeywithin a journeyChristine J Moffatt, Susie G Murray

Moffatt CJ, Murray SG. The experience of children and families with lymphoedema – a journey within a journey. IntWound J 2010; 7:14–26

ABSTRACTThis paper reports on a study in the UK that explored the experience of children suffering with Lymphoedema andthat of their families. Qualitative data was collected from 20 children between the ages of 6 and 18 and theirrespective parents. Single, semi-structured interviews were used in which children and their parents were asked toshare how lymphoedema impacted on their family life. Children were asked about their school experience, theirdreams and their aspirations. Three categories emerged. Firstly, the negotiation of the health care system. Themesincluded correct diagnosis, finding robust information and reaching a knowledgeable expert. The second categoryexplored the complex role of the parents as advocates. Themes within this category included the dilemmas ofparenting and the increasing challenges as children reached adolescence. The final category involved the impacton the family unit. The first theme concerned the integration of lymphoedema into daily activities and the intrusionon family time. The second explored the impact on siblings and the final theme the changing dilemmas as childrenmoved through the stages of childhood and faced adulthood.

Key words: Children with chronic illness • Expert knowledge • Impact on families • Lymphoedema • Parental advocacy

INTRODUCTIONLymphoedema is now recognized as a majorhealth care problem affecting 1·3 per thousandin the general population (1). Causes includecancer treatment, parasitic infection and con-genital problems in the development of the

Key Points

• obtaining diagnosis is pro-longed and difficult for parentscausing stress

• inadequate information is avail-able for parents and children

• information is inconsistent andconfusing

• access to local treatment is poor• access and choice of compres-

sion hosiery and footwear areproblematic

• parents value expert help• the impact of lymphoedema

increases during adolescence• families show resilience and

courage• lymphoedema impacts on many

aspects of family life

lymphatic system. In addition, lymphoedemacan occur in patients with chronic diseasessuch as spina-bifida, rheumatoid arthritis andstroke. Children may develop lymphoedemaas part of other conditions such as Turner’sSyndrome. The epidemiology of lymphoedema

Authors: CJ Moffatt, CBE, RN, PhD, University of Glasgow,Glasgow, UK; SG Murray, RN, MA, Centre for Research andImplementation of Clinical Practice, London, UKAddress for correspondence: Professor CJ Moffatt, CBE,RN, PhD, CRICP, St Luke’s Crypt, Sydney Street, SW3 6NHLondon, UKE-mail: [email protected]

has received scant attention and the number ofchildren suffering is unknown.

Children with lymphoedemaThere is a paucity of evidence concerningthe impact of lymphoedema on children withthe condition and their families. The Lym-phoedema Support Network, the patient sup-port group in the UK, report that the conditionsignificantly impacts on the lives of childrenand families. Todd in a study of six parentsof children with lymphoedema reported thatparents experienced particular difficulty beforereceiving a diagnosis and appropriate treat-ment (2). This situation was compounded bya general lack of professional awareness andknowledge of the condition. The day to daymanagement of the condition was hamperedby the psychological effects of the condition

14 © 2010 The Authors. Journal Compilation © 2010 Blackwell Publishing Ltd and Medicalhelplines.com Inc • International Wound Journal • Vol 7 No 1

The journey of children and families with lymphoedema

on their children (2). The research describedin this paper was undertaken in the UK with20 families. (20 children/20 parents) as part ofa strategy to make international recommen-dations on the care of children with lym-phoedema.

Study aimThe aim of the study was to explore theexperience of children with lymphoedema andthe impact on families. The study had a numberof objectives:

• To describe and seek to understand theexperience of children with lymphoedemaand their families.

• To explore the impact lymphoedema hason the family and the process of adaptation

• To describe the experience of schooling inchildren with lymphoedema

• To capture the experience of the child andtheir family as they journey through thehealth care system.

• To determine how lymphoedema impactson the child’s social relationships withother children.

• To explore how the experience of havinglymphoedema influences a child’s dreamsand aspirations for the future.

Overall research designThis was a qualitative study using in-depthinterviews to form the basis of detailedcase studies of the child and family. Apurposive, stratified sampling approach wasused to identify suitable patients and theirfamilies. Such a strategy sought to identifyan information rich sample of 20 children ofvarying ages and with different presentationsof lymphoedema (both the site of swellingand its severity). A mix of gender andethnic background was ensured to capture thediversity of experience. For children under theage of 16 years, interviews were held with thechild and at least one parent. For those over16 years interviews were held separately unlessthe child requested the parent to be present. Thestudy received approval by the local researchethics committee.

Sample detailsParticipants were recruited from children whoattended a centre of lymphoedema excellencein London where the majority of children in

the UK are referred. The service register wasused to ensure they met the requirements of thesampling strategy. Once selected, the consul-tant reviewed the suitability of the proposedchildren prior to contact in order to excludeany who may be considered particularly vul-nerable or unsuitable for inclusion. The studyhad a number of criteria for inclusion. Theseincluded the following:

• Children under the age of 18 years of agewith a diagnosis of lymphoedema of anycause.

• Those able to respond verbally to ques-tions asked by the researcher.

• Those able to understand the reason forthe research appropriate to their age and,where age permitted were able to provideinformed written consent.

Additional inclusion criteria were set forparents or guardians of children. Theseincluded:

• Being a parent or guardian of a child withlymphoedema.

• The ability to give informed writtenconsent.

• Parents had to be willing to allow theirchild to be included in the study.

Because of the diverse nature of whylymphoedema presents, a number of exclusioncriteria were set. These included

• Children who were terminally ill.• Children considered vulnerable or unsuit-

able by the medical consultant• Children or parents who were unwilling

to participate.

Obtaining consent from childrenand parentsIssues of consent were influenced by the age ofthe child. Informed consent was obtained fromthe parent or guardian of all children below theage of 16 years. Adolescents aged 16–18 yearsgave their consent and permission from theparents was also sought. For younger childrenthe researcher explained the study with thehelp of the parents in ways most appropriateto the individual child. In all cases, it wasessential that the child wished to take part inthe study and this took precedence over thewishes of the parents.

© 2010 The Authors. Journal Compilation © 2010 Blackwell Publishing Ltd and Medicalhelplines.com Inc 15


The interviewsInterviews with young children can be chal-lenging particularly when they are undertakenby a person with whom they are not familiar.All interviews were undertaken in the child’shome. Interviews normally lasted about 1 hourfor each child and a further hour for the par-ents. For younger children the interviews weresometimes shorter and combined the interviewwith the parents. Interview topic guides wereused for both interviews.

Qualitative analysisAll interviews were tape recorded after hav-ing gained permission from the participantsto do so and transcribed verbatim. To addadditional rigour to this process, two indepen-dent researchers separately coded the initialtranscriptions. Agreement was sort on any dis-parity of the initial coding.

The process of data analysis used theanalysis method ‘Framework’ developed bythe National Centre for Social Research (3).This is a matrix based analytic methodthat facilitates rigorous and transparent datamanagement such that all stages involved inthe analytical hierarchy can be systematicallyconducted. The framework classifies andorganises data according to key themes,concepts and emergent categories. The studyhad a thematic framework comprising mainthemes, subdivided by a succession of relatedsub- topics. These were further refined throughfamiliarisation with the raw data and crosssectional labelling. Once considered completeeach main theme was charted on its ownmatrix. Every case was given a row and eachcolumn denoted a subtopic. Data was thensynthesised within the thematic framework.

RESULTSA diverse range of children with differentcauses of lymphoedema were recruited to thisstudy. Table 1 outlines the demographic andclinical details.

Of the 20 children interviewed there wereequal numbers of male and females. Twoof the families came from non-Europeanbackgrounds. In 7 of the families there wasa family history of lymphoedema but 17 ofthe children had been given no diagnosis ofthe type of lymphoedema they had. There

Table 1 Global and demographic details of study subjects

Number of children 20

Gender Male 10Female 10

Age range Male 6–10 years 6Male 11–17 years 4Female 6–10 years 6Female 11–17 years 4

Time of diagnosis Before birth 4At birth 8Early childhood 8

Family history oflymphoedema

7

Types of lymphoedemadiagnosed

Milroy’s disease 2

Lymphangectasia 1DistachsisUnnamed 17

Other medical conditions Autoimmune diseaseneeding bone marrowtransplant

1

Lymphangectasia 2Lymphangioma 1Microcephaly 1

with global develop-mental delay

were a number of children who had concurrentmedical problems.

The results found three overarching cate-gories that emerged with their related themes.The first category related to the parents’ negoti-ation with the health service and their journeyof exploration. Three themes emerged withinthis category. The first was the process of begin-ning the journey and the difficulties that wereendured during this process. The second, theissues of finding robust information and theimpact this process had on the family. Thethird, the parents and children’s experiences offinally reaching the knowledgeable expert andthe journey they endured before this occurred.

The second category identified the complexrole that parents play as advocates for theirchild’s well being and the changes anddilemmas that occur as the child moves toadolescence.

The final category explored the impact thatlymphoedema has on the family unit. The firsttheme in this category explores the reality ofliving day to day with lymphoedema and theintegration into everyday life of daily proce-dures and concern for complications occurring.

16 © 2010 The Authors. Journal Compilation © 2010 Blackwell Publishing Ltd and Medicalhelplines.com Inc


This theme also identified the complex issuesfor siblings of children with lymphoedema. Thefour final themes explore the uniquely differ-ent experience of younger children and that ofadolescents where life becomes far more com-plex and lymphoedema more intrusive. Thelast theme explores the parents and children’s’perspective on the continuing journey of livingwith lymphoedema.

CATEGORY 1 NEGOTIATION WITHTHE HEALTH CARE SYSTEMTheme 1 – beginning the journeyFor many of the parents in this study therealisation that their child had lymphoedemawas an insidious experience. What appearedto be a small swelling of one limb wasoften dismissed by professionals who did nothave the knowledge or skill to diagnose theproblem and often attributed it to another causesuch as an injury. One parent described theirexperience

She’d been at a disco, a school disco andher ankle was swollen. I noticed her anklewas swollen the next day. We just thoughtperhaps she’d twisted it and it just graduallygot a bit worse, went to the doctors and theysaid, oh no, it’s just this or that, keep an eyeon it.

For others the condition was noted during anultrasound scan during pregnancy. The shockof this finding was compounded on occasionby advice that maybe the pregnancy shouldbe terminated causing enormous distress forthe family. One mother’s trauma is expressedbelow

It was diagnosed before birth. I think at thetime it was that the other problem was she hadthis lymphangioma in her abdomen whichwas sort of causing a blockage, and it wasn’tuntil after they discovered this blockage in thestomach that this leg was kind of a secondarything, and at the 20 week scan we were toldthat her right leg was going to be bigger thanher left leg and they thought at the time shewas one of the worst cases. And we were, theyactually recommended a termination becausethey said she was one of the worst casesand we wouldn’t want to go ahead with apregnancy like that would we?

In some cases the condition was diagnosed atbirth or shortly afterwards. The child may havebeen acutely ill with another condition andparents were facing the possibility their childwould not survive or that they would have tolive with a significant health care problem.

In most cases there was considerable delaybefore a correct diagnosis and treatmentwas offered and parents were barraged withinaccurate information, further increasing theiranguish. Most of the families had been referredto a number of different professionals beforereaching an expert in lymphoedema able tocorrectly diagnose their condition. One familysuffered a delay of 3 years before receiving acorrect diagnosis. The experience of being sentto different professionals who had a limited orinaccurate knowledge of lymphoedema causedparents enormous distress and anxiety. Oneparent described their experience.

So the geneticist said something’s not quiteright but because they’ve ruled out Down’sSyndrome then we’ll leave it and wait andsee what happens. . . .. The paediatrician saidok well what we’ll do is send you to anorthopaedic surgeon to have all his toesbroken, to have his feet reshaped, whichwas an absolute madness wasn’t it? Andin the meantime we saw a plastic surgeonwho said for goodness sake this baby has gotlymphoedema.

A positive outcome of these difficulties wasthe strong parental advocacy roles that theseparents developed in fighting for the best carefor their children.

Parents reported that professionals oftenfailed to listen to them or value the insight theyhad already gained about their child’s con-dition. Parents with children born with lym-phoedema reported that professionals madethem feel that they had in some way con-tributed to the child developing lymphoedema.Mothers were repeatedly questioned onwhether they had smoked or drunk duringpregnancy adding to the guilt they already felt.One mother reported this experience

And every doctor went on about thepregnancy and did you smoke, and did youdo this, and I began to feel it must havebeen something I’d done and nobody ever



considered us as people, I don’t think, inthe middle of all this. It was almost likewell you’ve got this thing and it was awful,because he was this thing.

Families with a familial form of lym-phoedema were often burdened with the real-ity that the condition had been passed downfrom parent to child.

Theme 2 – finding information ‘I neverfind I really get the answers’One of the most significant findings wasthe difficulty finding information about theirchild’s condition. Parents spent a lot of timesearching the internet, being shown relevantsections from medical textbooks, and othersources of literature. Many of these hadpictures of extremely severe, complex patientswith elephantiasis and this caused parents fearthat this would be the outcome for their child.One mother recounts her experience

He read out the explanation from a bigmedical textbook. He knew nothing aboutit. So for us, I can remember my husband andI were quite devastated, we were absolutelycrying our eyes out because it sounded so bad.

This was further aggravated by professionalsbeing unable to predict the course the child’scondition would take or the overall prognosis.The children support groups for lymphoedemawere used frequently by parents who knewabout them.

Despite this the level and quantity of infor-mation for parents and children in the UKis inadequate and parents have many unan-swered questions. There was no literature foryounger children with lymphoedema.

Parents wanted a single resource that toldthem of the different products, aids and rangeof hosiery that was available to them and mech-anisms where they could buy extra productsif they wished to add to those provided bythe health service. Parents found that clinicalinformation on aspects of care such as manuallymphatic drainage and compression hosierywas conflicting.

The parents reported that professionalknowledge and information was poor and thatthey were frequently in a position of edu-cating professionals such as GPs about the

needs of their child. This was not a comfort-able position for many parents although theyaccepted this to ensure their child received thecorrect treatment. A particular difficulty wasaccess to prophylactic antibiotics. Few GPs feltit was necessary despite letters from special-ist therapists stating the child required them.Letters from hospital consultants held greaterauthority.

Parents found themselves acting as the solesource of information when their child went toschool. They took responsibility for ensuringthe information leaflets reached the schoolalthough this information was not alwayspassed on when the child changed classes.Some teachers took an active interest and foundextra information in order to enrich the child’sexperience at school. Parents continued to playa vital advocacy and protective role for theirchildren while they were at school.

Theme 3 – reaching the expertThe importance of reaching the right expertcannot be overstated. The research indicatedthat this was often a long, painful and tortuousexperience. The parents characterised this as arelationship of trust and a sense of knowingthat the professionals really understood thecondition. The relationship with key medicaland therapists within these centres was thecentral reason why parents felt so supported.

. . . . because until we saw this consultant,I’ve forgotten how long, 2 years probably3 years ago now, we didn’t really understand.We knew it was hereditary, and we knewthere were things missing but he went intoit in such a way that we learnt more in thehour that we saw him than we had for thelast 15 years that she’d had it.

Parents experienced worry when specialistcentres closed or when experts left a servicecausing problems with continuity of care.

However attending specialist centres re-quired family commitment as many lived manymiles away. Attending appointments requiredreorganisation of the whole family, not justthe affected child. Siblings had to be left withfriends or relatives, which could cause feelingsof exclusion by brothers and sisters.

I think also we had so many appointmentsthat she spent a lot of time with my mum



and dad because it wasn’t really possible tokeep taking her to the hospital all the time,and whilst, I mean she always thought it wasgood, or we always thought she thought itwas good, you know, we’re going to Nan andGrandad for a treat she now says she thoughtwe were taking him off and doing somethingnice with him and I’m not going anywherenice. So that has affected things I think.

Travel costs were high and families wereoften unaware that they might be able to claimexpenses for travel. Appointments early or latein the day added to the expense as ticketsduring peak travel times cost much more. Longhospital appointments were found boring bymany of the children and adolescents. Manychildren wished they could meet other childrensuffering with the condition during these visits.

While reaching a centre of excellence wasvery important, accessing local care oftenproved very difficult. Parents were frequentlyinvolved in appeals for funding of treatmentand many resorted to paying for aspects of caresuch as manual lymphatic drainage as this wasnot provided for locally.

I think it helps him enormously actually,and it annoys me that his PCT won’t fundit because as far as they’re concerned it hasno long-term benefits which makes me thinkthey know nothing about lymphoedema atall. And I’ve sent them letters and my GPhas tried to get funding but it’s seen as quackmedicine if you like. It’s just written downon paper. I feel that I need to go somewhereto present my case but you’re not given thatopportunity. So that’s the current situationbut I’m not leaving it at that.

Children frequently suffered with veruccasand infections secondary to in-growing toenails. Access to services such as podiatry waslimited, with long delays for treatment. Thiswas because lymphoedema was not recognisedas a priority area unlike diabetes or the elderly.

CATEGORY 2 THE COMPLEX ROLEOF PARENTSTheme 1 – parents as advocatesfor treatmentParents spent much time and effort fightingto ensure their child received the best care

possible with the least interruption to familylife. In many families one parent undertookthis role more actively than the other did.

I always felt that I took on most of theresponsibility and worry and everything likethat although I know that X worries morethan me about most things but I did alwaysfeel that most of the decisions came downto me.

This was often influenced by whetherparents were working and the time availablefor providing treatment for the child. Insome instances however, this seemed to be acoping mechanism. One parent found dealingwith these issues very difficult and abdicatedresponsibility to the partner for finding outinformation and undertaking the treatmentwhen she was available.

Parents struggled to ensure they had anadequate supply of hosiery. This was oftendifficult due to the delays in receiving ordersof hosiery and the limits set on the numbers ofgarments that would be funded by hospitals.

We have 6 monthly appointments and they(hosiery) are absolutely worn out and holeyby the time he goes to be measured, but it’s allto do with funding again. And also they’vestopped funding for the way stockings usedto be finished off, The elastic finishes here andgoes up the leg and round and because that’stoo expensive now it has to go straight acrossso they’re missing out on a piece and that’sall to do with money. His new stockingsarrived last week and they were wrong sowe’ve had to send them back. But what he’swalking around in at the moment I’d be tooembarrassed to show you. We have offeredto buy them ourselves but you can’t do thatevidently.

The children and adolescents and theirparents did not like the hosiery given to them.The styles were considered old fashioned andled some children to be bullied at school. A fewchildren refused to wear the hosiery at all.

Provision of shoes was a major challenge forparents and children. While hospital orthoticdepartments made shoes for the children thisfrequently took weeks or months. This delayoften meant that the shoes did not fit because



the child had grown during this period. Thechildren complained about the style of shoes.Parents reported that several pairs of shoesfor different purposes were required and thesewere not made available.

They’ve recently changed the way that I canorder her shoes and it took seven and a halfweeks just to get the order form. And thenit’s 8 weeks from when the form goes to themanufacturers so that’s like 16 weeks for apair of shoes.

There was one time when we were away andthe appointment had got forgotten and wehad to see a locum. At that time her feethad grown. She’d had three different types offootwear but never all at once. But as far as Icould tell she needed a school shoe, somethingto wear at home and something for PE. Andthe locum said she couldn’t have three and sheasked me to choose. And I said I can’t choose,you tell me which thing she can’t do becauseas far as I’m concerned you can’t wear yourschool shoes at home if you want to go outand play. They didn’t get back in touch withme and I didn’t know until I collected themwhat I was getting. And I thought that wasa bit poor, and when I did collect them thelady said well you know the cost is hundredsof pounds

Theme 2 – parents as advocatesat schoolAll parents were determined that their childshould receive appropriate education and thatthe schools were prepared for the health needsof the child. Some children faced difficultiesin integrating into school life because of theinflexibility of some schools in addressing thespecific needs of the child if these differed fromtheir standard practices. Issues such as pupilsdoing PE bare foot rather than in plimsollswere daily irritations that singled the child outas different and contributed to the need forconstant parental vigilance.

Silly things about him not being allowed towear plimsolls in PE and things, and theteachers saying if he wears his plimsolls itsingles him out, which ok I can understandbecause his self-confidence is low so we don’twant him singled out so that doesn’t help.But then she says if he wears his plimsolls

he’ll stand on somebody’s fingers and we’llhave this and we’ll have that and it’s becausethey don’t understand.

Sporting activities were a constant challengewith staff not always available to take off orapply hosiery after activities. Some schools didnot actively embrace children with disabilityand on a number of occasions suggested thatthese children should attend special schools.

The headteacher, she actually said to meone day – I’ve written it down, I’ve got aquote from her, ‘people overestimate whatmainstream schools are able to deal with’.And I said to her ‘do you think X should bein a special school?’ And she said ‘yes’. Sothat’s what we’re dealing with, just dealingwith this complete she’s not supposed to behere attitude.

This situation was made more acute for chil-dren who were bullied at school because oftheir condition or the compression garmentsand shoes they wore causing them unhappi-ness and bewilderment

There were some examples of excellencewhere schools went out of their way to enhancethe life of the child and promote independence.

Yes, I mean they’ve been very good, I have tosay. When she was in infant school and juniorschool I had an association there because Iworked in the infant school that was attachedto it so I had a good relationship to theteachers there and everything. I was able tolet them know what the problems were andissues. She went away on a residential, thatwas probably her last year, I would think soshe’d be 11. The teachers were fantastic. Theteachers came here to learn how to put herstockings on, to learn any signs, you know,what to pick up, so I couldn’t fault them.

CATEGORY 3 LIVING WITHLYMPHOEDEMA – A FAMILYPERSPECTIVETheme 1 – living with ‘our’lymphoedemaLymphoedema impacted on many aspects offamily life. One parent described this very well.When a family outing occurred they took thefamily and also the lymphoedema with them.



It’s almost like an extra person in the family.We have X. We have Z. And we havelymphoedema because we have to considerit in everything that we do.

Despite this they made every attempt to‘normalise’ life for the family and the affectedchild. Parents described an inherent tensionbetween giving the child freedom to undertakenormal childhood activities and the fear ofharm from injury or infection.

If we go to the seaside I have a real problemthere, nagging him to not muck about on thebeach without his stocking on and worryingthat he is going to get a cut or tread onsomething horrible. I’ve always found thata problem. I don’t go for beach holidaysconsequently, we just don’t do it. It’s sostressful sand between the toes and all therest of it. We do go to the seaside becauseafter all children want to go and have fun,but I don’t enjoy it

Parents showed different levels of parentalcontrol that ranged from giving in completelyto the demands of the child to complete controlof their treatment on a day to day basis.As children reached adolescence these issuesbecame more difficult and parents often founddifficulty relinquishing control because of theirfear that the child would not adequately carefor their condition leading to complications inadult life.

Theme 2 – the impact on siblingsThe treatment of lymphoedema impacted onthe time available for family life, although forthe majority of children who developed thecondition at an early age this was simply partof every day life. Parents reported there wasless time available for siblings and that thesick child often took precedence over otherfamily members. Parents were often distressedby these issues, recognising that siblings had totake a back seat and that this sometimes led tojealousy and frustration. However there wereinstances where very close sibling relationshipswere established. In one set of twins, thehealthy twin gave treatment to the affectedchild. Parents appeared to expect that siblingstook a degree of responsibility for the child andmany showed maturity beyond their years.

Theme 3 – the experience of youngerchildrenFor many of the younger children withlymphoedema they had never known lifewithout the condition and they accepted itor learned to ignore it. These sentimentsare captured in the experience of one boydescribing his feelings about his situation;

I was like oh my goodness gracious me, I’mnot going to be able to get on with my life.But I learnt to ignore it. It was hard at firstbut I eventually ignored it. I learnt how toignore it and now I’m just an average boy.

Most children had a basic understanding oftheir condition and that they would suffer withit for life. Some talked of hoping for a cure inthe future.

Hopefully it won’t get any worse but I don’tthink it will ever go away. I think you canhave some relief but I don’t think it will everget 100% better.

Not at this precise moment but they’re alwaysmaking medical breakthroughs

Discussion with these children revealedthat they had many dreams for the futureand that lymphoedema did not appear toinfluence them. Many of the boys enjoyed sportand hoped to become famous footballers orsportsmen. However for some their conditionreduced their effectiveness at sport and thiscaused them frustration.

I began to realise I was no faster at runningthan I used to be. It affects me cos when I’mdoing sport I can’t run. It slows me down.And also it like affects me because if beforeyou had it you were quite athletic and youwere really used to winning and you werelike a great sport. Then all of a sudden youfound out you’d got lymphoedema and likethat really slowed you down a lot and thenyou’d start to get annoyed because you kepton losing to these other people that you’d kepton beating.

Many showed great adaptability when join-ing in games. Some children had developedeffective strategies for releasing their frustra-tion that they reported really helped them



When you do get days like that you just haveto kick and punch the pillows and the duvetsand if you do have a hill near you, going outto the hill and run down it screaming andwaving your arms like a maniac and whenyou get to the bottom you’re feeling muchbetter. Then walk back up it or run up itagain, do it as many times as you have tountil you feel better. That’s how I do it butpeople do it in different ways.

Many expressed a desire to meet others in asimilar situation to their own so that they didnot feel so alone.

It would be nice to have a place to go becauseas far as she’s concerned she’s the only personin the world isn’t she?

But I’m quite excited because in theChristmas holidays there’s this boy calledG. and he’s the same age as me and he’sgot lymphoedema in his leg, and what’sgoing to happen is we both go and haveour appointments on the same day, and I’llsee the doctor and then we’ll both have sometime together so his mum can talk to mymum and then the one that’s already had theappointment will go home and the other onehas their appointment.

Theme 4 – the experience of adolescentsAs children reached the stage of adolescencethe lymphoedema had much greater impacton their lives. Issues such as body imageand the ability to fit into a peer group weremajor problems. They demonstrated a rangeof coping mechanisms. For some they avoidedtelling others about their condition and girlsdressed in trousers in order to hide the swellingfrom public view.

One teenager reported he had stoppedtalking about lymphoedema as this meant heno longer thought about it.

If I don’t talk about it I don’t think about itand I think I am a bit worse that way. BeforeI used to think about it but now I think if youdon’t think about it and forget about it thenI don’t think it’s there kind of thing.

For some however they coped by hiding theiremotions from others and withdrawing fromfamily and friends.

Many found shopping particularly difficult,as they were unable to buy fashionableclothes or shoes that would accommodate theswelling. One teenager spent hours searchingthe internet for clothes and shoes and washugely frustrated by the lack of choice.

Concordance with treatment was moredifficult for teenagers and many refused toconsistently wear their compression hosiery.One boy reported that his parents did notunderstand the impact the condition had onhim and just thought he was being lazy.

I think it slows me down. Mum just thinksI’m lazy. I get very tired with it. This leg itwouldn’t be tired. I can move that but thisone it hurts more.

As with the younger children there was aneven greater desire to meet with others whoshared the condition.

Theme 5 – thinking about the futureOn the whole the families showed acceptanceof their situation. Many coped by comparingtheir situations to other sick children with moreserious health problems.

Yes but like he said, I told him that at least hehad legs to run with. You try and give himsomething positive like we see someone in awheelchair and I say, and maybe I shouldn’t,they can’t run around and play like you.

They worried about the future, in particularhow they would cope in adulthood.

Parents worried that their child woulddevelop problems with their body image thatwould influence relationships. Two of thefathers expressed concern for sons with genitalswelling and its impact on sexual relationships.

I know that his leg is a problem but I worrytoo much about his penis because it is gettingbigger. After they said when he is five and wewere just waiting, just waiting. I know thatas he is older it is not too well. That’s why Iworry too much because I want for my boy.

As children moved into adolescence parentshad to appraise how treatment was given.While a mother may have provided treatmentfor a boy during childhood this had to



alter as children reached adolescence whereembarrassment became an issue.

And also he’s going into puberty now andI’m still helping him with the stocking andhe really couldn’t do it himself. Luckily he’sstill not too embarrassed and I imagine myhusband will have to take over fairly soon. Hedoesn’t want his mum’s head up his bottomyou know.

DISCUSSIONThis research identified the impact that Lym-phoedema has on many aspects of family lifeand the emotional distress that occurred.

Research indicates that families caring forchildren who are chronically sick suffer a highdegree of stress that is often poorly understoodby professionals (4). A chronic illness impactson many dimensions of family life. Financialand emotional difficulties are common and leadto greater strain than in families with healthychildren (5).

In this study emotional distress occurredat different times. For those who discoveredduring pregnancy, they faced the dilemmaof whether to undergo termination For thosewith a diagnosis at birth or later there was thedistress of not having a ‘perfect’ child.

We noted the stress that was caused toparents in trying to obtain a correct diagnosis.Some authors have reported that diagnosis andprognostic uncertainty are major psychologicalstressors (6). Parents feel overwhelmed at thepoint of diagnosis and need to know theyare not alone in this situation. Starke andMoller (7) reported that parents coped withdiagnosis by seeking information and gainingknowledge. It is proposed that this brings orderinto a chaotic situation. Parents in this studycomplained of lack of information that causedthem continuing stress which was furtherexacerbated as they had to fight for appropriatetreatment and resources from the health andeducation services. There was also evidenceof stress within the family unit with parentsshowing different types of coping and methodsof sharing the parental burden (8).

Parents of the children in this study soughtto provide as normal a life as possible fortheir child and siblings. This was set againstthe continued concern of complications. Thefamilies exhibited varying levels of control

over the children’s behaviour and inclusion inactivities. Many struggled with relinquishingcontrol as the child reached adolescence. Thiswas exacerbated if the child was unwilling tocare for their lymphoedema in the way theparents considered appropriate.

A number of authors have described theexperience of developing a chronic illness.Bury (9) described this as a ‘biographical dis-ruption’. This requires the individual andfamily to ‘re-frame’ their lives having acknowl-edged their altered situation. ‘Biographicalaccommodation’ is the sequel to this andrequires a number of changes: keeping a senseof balance and control and adapting and allow-ing the illness to become part of the newbiography of the child and family (10).

Children with chronic illness are known tobe at risk of psychosocial adjustment prob-lems (11). Much of the literature stresses theimportance of families being able to live asnormally as possible. This cognitive processhas been described as ‘normalisation’ (12,13).There was evidence in this study that par-ent’s also used normalisation and comparedtheir child’s situation with that of other chil-dren in worse situations. A number of studieshave reported how parents interpret their livesby using a constant comparison to others insimilar situations. These approaches includedrawing on positive comparisons with oth-ers (14), emphasising growth in their child,however minimal (15) and gradual resignationwhen situations become too difficult or aredeteriorating (16). Ray (15) stressed the impor-tance of seeing one’s child progress no matterhow small the incremental gain. Even whena child was not improving a parent’s abilityto interpret their child as strong and in con-trol was more sustaining than viewing theirchild as a helpless victim. The parents in thisstudy were all very proud of what their childhad achieved and the child thrived on thisrecognition.

Research suggests that children with chronicillness place great importance on attendingschool. Even in the absence of cognitive impair-ment, children with chronic illness performless well academically than healthy children.A number of factors for this have been iden-tified including absence from school and poorpsychosocial well being due to the limitationstheir illness places on participation in schoollife. In the limited studies that have sought



the views of children, a number of problemshave been identified about their experienceof managing school. These include the effectsthat absence from school had on relationshipswith their peers and fear over keeping up withwork. More direct communication and betterinformation provided for schools was recom-mended in a number of studies (11). For thechildren in this study friends played a complexrole in providing support that was both prac-tical and emotional. Chronic illness researchhas shown that some children do have diffi-culty with relationships, although the patternof evidence was inconsistent. Some found theircondition had a positive effect, with friendswatching out for them and offering practi-cal help. Others suffered from being ignored,bullied or the focus of curiosity. Self-esteem,school functioning, and sports participationare among the most significant psychosocialissues that affect children and adolescents withchronic illness (17). Parents and teachers playan important role in normalising and provid-ing gratifying opportunities for children whostruggle to be seen as competent by their peersand will allow them to grow up happier andfeeling better about themselves and enjoyingmore success (18).

Parents in this study were very aware ofthe impact on the child’s siblings. However allshowed a great understanding of the impact ontheir other children. They valued their willing-ness to support the sick child recognising thatthis caused tension at times within the fam-ily. Especially close relationships were seen inmany families and parents recognised that sib-lings were often required to take a greater levelof responsibility than they would have liked.Other research supports the findings from thisstudy. The literature refers to siblings beingdescribed as ‘lost in the shuffle’ (19). Parentsare acutely aware that the child who is illbecomes the central focus and that this is detri-mental to the siblings (5,20). Siblings often takeon a great deal of responsibility and adopt amonitoring role; this is particularly acute forgirls (21).

Families in this study showed a high levelof cohesion although some parents stated thatthe child’s illness had placed stress on theirrelationship. This was because of the dedi-cated time that had to be spent on deliveringtreatment each day. For many this reducedthe free time they could spend together and

reduced the ability to be spontaneous in plan-ning activities that other families enjoy. Studieshave shown that in families with a child witha chronic illness the relationship of parentswith partners, friends and extended family aretested and changed in some way. Some rela-tionships deepen while others drift away (22).The most important social support, particularlyfor mothers, is that of the partner. It is believedthat the divorce rate is higher in those familieswith a sick child although the picture is notentirely clear. Some research has shown thatcouples stay together because of the needs ofthe child even within a poor relationship (15).

This study showed the increasing difficul-ties experienced by teenagers. Some facedsignificant problems of low self-esteem andpoor body image. A number of authors havereported the difficulties of staring and teasingduring social experiences (15). The literaturereports a particular gap in understanding theviews of disabled children with much of theliterature relying on the views of parents asproxy measures for their children’s views (23).However the quality of life literature suggeststhat children have a different opinion of theimpact of their illness on their lives than thoseheld by their parents (24,25).

The teenagers in this study were beginning toundertake their treatment with parental guid-ance. Parents were often fearful that their childdid not understood their condition and wereconcerned that they would rebel. Researchin other conditions shows a similar picture.Adolescents with cystic fibrosis reported theirfrustration when professionals or parents didnot ask or consult them about their plan ofcare (26).

A literature review of the experience ofparents with health professionals involved incaring for a child with a chronic illness foundfour common themes (27). The most vital fac-tor was establishing trust. This was based onthe assumption that health care profession-als would always interact with families in apositive way. Information was very importantto parents, reducing uncertainty and giving agreater sense of control. Parents became theirchild’s advocate and wanted to participate inthe routine and technical care for their child.Parents moved to collaborative decision mak-ing with health professionals as their knowl-edge and confidence increased over time (28).



One of the most fundamental assurances par-ents hoped for from health professionals wasto know they were not totally alone and thatthey had somewhere to turn to if they neededhelp (15). In this study it was important forparents to find a professional who respectedwhat they knew about their child and his ill-ness and who was willing to find appropriatehelp and treatment if they themselves were notskilled to give this. The children gained fromthe parents’ confidence in this professional thatwas passed down to them.

This study sought to understand the viewsof both parents and children. There were differ-ences between their views in the condition. Thedreams and aspirations of the younger childrendid not seem to be adversely affected. Duringadolescence there was a growing appreciationof the impact of their condition however themajority would not let this influence their lives.

Research has rarely focussed on theexpressed views of children. Some parentschoose not to focus on the future of theirchildren and therefore do not encourage theirchildren to talk about it either. It may be thattheir own fears for their children cause tosilence them so that they do not have to thinkabout any negative outcome. Societal attitudesto the passive voice of sick children may rep-resent the wish to protect their welfare (29).Views are now changing with children con-sidered to be active in the construction anddetermination of their own lives (30).

A key aspect of this research was the courageand resilience that the children and their fam-ilies demonstrated in the face of many chal-lenges, not least for the parents in accessingtreatment for their children in a climate wherelymphoedema is barely recognised by the pro-fessional community and services are sparse.We are very grateful for their willingness andopenness in sharing their stories with us.

ACKNOWLEDGEMENTSWe would like to thank all the children, theirparents and siblings for allowing us to inter-view them and gather so much informationabout living with lymphoedema. Secondly, wewould like to thank the Lymphoedema Sup-port Network for their help and interest in thispiece of research. The work they do as a patientsupport group is invaluable to so many that wespoke to.

Our thanks also must go to Professor PeterMortimer and his team at St George’s Hospital,London for all the information and expertadvice that they so readily gave us.

We hope that this piece of research may leadto improved services for those children whosuffer with lymphoedema.

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The experience of children and families with lymphoedema - a journey within a journey

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