Tourism Management 25 (2004) 249–258

Young people, holiday-taking and cancer—an exploratory analysis

Philippa Hunter-Jones*

School of Food, Consumer, Tourism and Hospitality Management, Manchester Metropolitan University, Hollings Campus,

Old Hall Lane, Manchester M14 6HR, UK

Received 3 February 2002; accepted 16 April 2003

Abstract

This paper reports the empirical findings of a qualitative study undertaken to investigate factors which may inhibit tourism

participation for young people experiencing problems related to cancer. Participation in leisure activities has long been recognised as

playing an important role in the personal development of young people, contributing to identity and self-concept. Holiday-taking

represents one expression of leisure participation yet is not an activity universally enjoyed. Socio-economic factors are commonly

recognised as inhibiting full participation. The contribution of ill health has been less so considered.

To address this, 25 informants, accessed through the Young Oncology Unit (YOU) at Christie Hospital NHS Trust, Manchester,

UK, a specialist cancer hospital covering the northwest of England, were questioned about the key barriers inhibiting travel post-

diagnosis. Key barriers identified included fear of being unable to cope on holiday, a lack of confidence and self-belief. Such barriers

were found to be consistent with the intrinsic, environmental and interactive barriers identified in Smith’s (Ann. Tourism Res. 14

(1987) 376) earlier study of disabled tourists. The paper concludes by considering the implications the research poses for the Tourism

Industry.

r 2003 Elsevier Ltd. All rights reserved.

Keywords: Sunbathing; Skin cancers; Young holidaymakers; Self-concept

1. Introduction

Participation in leisure activities in general has longbeen acknowledged as playing an important function inthe personal development of young people, providing avehicle for establishing identity and contributingto self-concept (Coleman & Hendry, 1990; Hendry,Shucksmith, Love, & Glendinning, 1993; Roberts,1997). Holiday-taking represents one expression ofleisure participation although in contrast to leisureresearch is less readily recognised as a mechanism foradding structure and meaning to the lifestyle of youngpeople. A particular gap in understanding exists in termsof the relationship between young people, travel andillness. The problem is twofold. Tourism researchersinvestigating the travel propensity of young people tendto consider primarily the needs of able-bodied, healthyyoung people largely neglecting anyone who falls

outside this classification. Health researchers investigat-ing the implications of illness during adolescenceinvariably ignore activities such as holiday-takingconcentrating instead upon the impact of illness withinthe context of the recognised necessities of life: health,welfare and education for instance. The consequences ofsuch approaches are that currently little is known aboutthe holiday-taking patterns of young tourists facingprogressive, chronic or terminal illness.

Cancer globally is a significant form of ill health, thesecond most common cause of mortality in the UKalone. Despite this association, today many forms of thedisease carry with them an improved prognosis, thepositive by-product of advances in medical research.Such advances have prompted new challenges to caringand living with cancer, particularly for those affected atan early age. Yet much of the research considering thishas focused upon the effects of cancer upon children, theneeds of adolescents less so considered (Eiser, 1993;Faulkner, Peace, & O’Keefe, 1995). The impact of illnessupon the wide range of activities young people generallypursue, holiday-taking being one such example, sufferssimilar neglect.

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*Corresponding author. Tel.: +44-161-247-2745; fax: +44-161-247-

6334.

E-mail address: p.a.hunter-jones@mmu.ac.uk (P. Hunter-Jones).

0261-5177/03/$ - see front matter r 2003 Elsevier Ltd. All rights reserved.

doi:10.1016/S0261-5177(03)00094-3

To extend the debate an empirical study wasconducted, the purpose of which was to investigatemore directly factors which may inhibit tourismparticipation for young people experiencing problemsrelated to cancer. Rather than focusing upon frequentlycited barriers such as time and income (Haukeland,1990; Hughes, 1991; Smith, 1998), the study was moredirectly concerned with further developing earlierresearch conducted by Smith (1987) into the intrinsic,environmental and interactive barriers to leisure parti-cipation experienced by disabled tourists. Such anapproach it was envisaged would facilitate a deeperinsight into the consequences of ill health duringadolescence and highlight a range of implications forthe Tourism Industry to take account of. Literaturefocusing upon young people often uses the terminterchangeably with youth and adolescence. This paperwill adopt a similar approach.

2. Young people, health and holiday-taking

Adolescence represents a period of transition. It is atime when rapid personal development and increasingself-awareness places greater strains on the confidence,self-image and stability of a young person so much sothat it is commonly recognised as one of the mostsensitive and distinctive stages of lifecycle development(Lloyd, 1985). It is a time of changing relationships withfamily and peer groups, changing physical appearanceswith the onset of puberty and changing mental attitudesas autonomy and independence of the ‘‘nuclear’’ familyare sought.

Researchers analysing the challenges of adolescencehave suggested: ‘‘ythat most young people pacethemselves through the adolescent transition. Most ofthem hold back on one issue, while they are grapplingwith another. Most sense what they can and cannot copewith, and will, in the real sense of the term, be an activeagent in their own development’’ (Coleman & Hendry,1990, p. 205).

‘‘Issues’’ commonly explored within the context ofthis age group include: family and peer group relation-ships (Jones, 1981; Noller & Callan, 1991), self-concept(Lerner & Karabenick, 1974), sexual behaviour (Bury,1991; Elliott et al., 1998) and alcohol consumption(Blaxter, 1987; Gofton, 1990; Elliott et al., 1998). Howreadily such an assumption transfers to adolescentswhere ‘‘one issue’’ may be a cancer diagnosis is lessclear cut for despite the significance of this lifecyclestage, only relatively limited attempts have beenmade to chart the complexity of illness at this age.Literature which does exist has tended to simplyconcur with a widespread recognition that cancer canhave a significant impact upon the chief developmentaltasks of adolescence (see Table 1), although has

made little attempt to target particular areas of thatdevelopment.

Leisure participation is widely acknowledged ashaving a significant role to play in shaping the lives ofyoung people. Investigating the relationship betweenadolescence, lifestyle and issues of sport, drugs, school,friendship, health and peer group pressure, Hendry et al.(1993, pp. 42–43) identified eight independent examplesof leisure participation (see Table 2) with (�) categoriesrepresenting a transitional phase from organisedthrough casual to commercial leisure participation.Such examples highlight the complexity of socialisationand interaction for this particular age group providingclear evidence of the existence of a number of sub-cultures within this category.

In contrast to leisure participation, determining therole holiday-taking plays in shaping the lives of youngpeople is not straightforward. Research investigatingsuch consumption tends to reflect more upon the familyand holiday-taking relationship in general (see forexample Fodness, 1992; Madrigal, 1993; Thornton,1997). As such, beyond limited acknowledgements suchas the older the ‘child’ the greater their likely influenceon the decision-making process (Madrigal, 1993),particular requirements and characteristics of this agegroup invariably become subsumed within the greaterfamily picture. Tackling the subject in such a manneris problematic. First it suggests the family to be a

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Table 1

Chief developmental tasks of adolescence

Achieving new and more mature relations with the age mates of both

sexes

Achieving a masculine or feminine social role

Accepting one’s physique and using the body effectively

Achieving emotional independence of parents

Preparing for marriage and family life

Preparing for an economic career

Acquiring a set of values and an ethical system as a guide to

behaviour: developing an ideology

Desiring and achieving socially responsible behaviour

Source: Hendry et al. (1993, p. 8).

Table 2

Young people and leisure participation

Active involvement in sport and organised activities (�)The adequacy of local neighbourhood sports facilities

Pub attendance and alcohol consumption (�)Visits to and by friends (�)The importance of various aspects of youth oriented culture

(i.e. discos, popular music and clubs)

Spectator sports

Entertainment (i.e. disco and cinema attendance) (�)Hanging around in the street and the perception that there were few

places to meet in the local neighbourhood (�)

Source: Hendry et al. (1993, pp. 42–43).

P. Hunter-Jones / Tourism Management 25 (2004) 249–258250

homogenous unit all sharing some unified set of needsand wants. Second it presumes the existence of thetraditional nuclear family, a concept which itself doesnot readily translate into contemporary society. Re-search which does exist (Mintel, 1999a, b) tends to dolittle more than outline the general type of products andfacilities the family market may demand, with the lesstangible features of the holiday, the significance ofparticipation for instance, less readily addressed.

Studies investigating tourism participation havetended to single out socio-economic issues as significantin modelling participation patterns. Within this contextHaukeland (1990) considers the social circumstances ofNorwegian non-travellers, or people who do not takeholiday trips. Hughes (1991, pp. 194–195) reviewsspecifically the economically disadvantaged and barriersto holiday participation suggesting that, ‘‘holidays arean important part of contemporary life and involuntarynon-participation may be an indicator of ‘poverty’’’.Whilst Smith (1998, p. iv) goes as far as to suggest that‘‘evidence points to the existence of a ‘tourist class’, thenumber of holidays taken varying directly with socio-economic status’’.

A different angle is pursued by Gattas, Roberts,Reinhard, Water, and Yvan (1986), Smith (1987),Henderson, Bedini, Hecht, and Schuler (1995) and theFamily Holiday Association (1995) each of whomfocus upon determining the social circumstances whichforce individuals to forego holiday trips. Illness formsan integral part of such research although most oftenaddressed within a disability context. Particularlysignificant here is the broad based work of Smith(1987) who, through desk research, identifiedeleven barriers to leisure participation experienced bydisabled travellers (see Table 3), categorised into threeareas:

* intrinsic barriers, directly linked to cognitive, physicaland psychological functioning;

* environmental barriers, a consequence of externallimitations;

* interactive barriers, arising from the interaction ofhost and guest.

Claiming that such barriers undermine feelings offreedom and personal control, Smith (1987) calledupon everyone involved in the Tourism Industry totake a share of the responsibility and to work towardsreducing such obstacles to enable fuller future tourismparticipation.

The circumstances of disabled travellers will varywidely however, dependent upon many factors, notleast the form of disability be it physical and/ormental impairment, the age, gender and socio-economiccircumstances of travellers amongst other factors.Smith’s (1987) work, and indeed later studies such asHenderson’s et al. (1995) review of the leisure con-straints of physically disabled women or Burnett andBender Baker’s (2001) recent investigation into thetravel-related behaviour of different types of disabledtourists, type determined by the severity of the disability,whilst reflecting upon a number of these factors doesnot, and indeed could not, realistically cover all in-depth. This is a shortfall Smith (1987) readily acknowl-edges. Further empirical research targeting specificforms of illness and disability is necessary.

3. Research methodology

The purpose of this study was to explore the impact ofillness, specifically cancer, upon the travel propensity ofyoung people. In particular the study aimed to revisitthe barriers to leisure participation highlighted throughSmith’s (1987) general study of disabled tourists,questioning their application to young travellers under-going treatment for cancer. Most studies investigatingthe relationship between health and holiday-taking havefocused upon illnesses generated as a consequence oftravel (see for instance, Cossar, Dewar, Reid, &Grist, 1988; Heptonstall & Mortimer, 1991; Pain &Derbyshire, 2001; Holiday Which? 2001). In contrast,the implications of illness evident but unconnected withtravel is seldom considered. Given the shortfall intourism-related research, reference to published health-care literature provided the necessary foundation fordetermining the research design.

Data collection via quantitative techniques, whilstoften the most commonly applied techniques in main-stream health-care research (Murray & Chamberlain,1999), were rejected as they failed to provide a mecha-nism for exploring informants’ experiences of bothillness and holidays. Instead a ‘‘hybrid methodology’’(Lee, 1993, p. 65), drawing primarily upon qualitativetools, particularly interviews, conversations and

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Table 3

Leisure of disabled tourists: Barriers to participation

Intrinsic barriers Lack of knowledge

Health-related problems

Social ineffectiveness

Physical and psychological dependency

Environmental barriers Attitudinal barriers

Architectural barriers

Ecological barriers

Transportation barriers

Rules and regulations

Interactive Barriers Skill-challenge incongruities

Communication barriers

Source: Smith (1987).

P. Hunter-Jones / Tourism Management 25 (2004) 249–258 251

observations, was adopted. The qualitative interviewschedules were generated primarily from health-relatedresearch, Mathieson and Stam’s (1995) work provingparticularly valuable here. The lack of related researchmeant that many of the questions had not beenpreviously tested in a tourism context although ques-tions were piloted upon health professionals contribut-ing to the study prior to their administration.

Informants were accessed through the YoungOncology Unit (YOU) at Christie Hospital, NHSTrust, Manchester, UK, a specialist cancer hospitalcovering the northwest of England. An ethical conditionimposed upon the study was that all informants choosefor themselves whether to participate or not. Conse-quently whilst random sampling developed aroundbroad criteria such as age, type of cancer and natureof treatment was the preferred sampling option, thesample ultimately captured is better described asopportunistic and convenient. No claims are made thatit is representative of all young people dealing withcancer.

Building upon earlier research by Faulkner et al.(1995) investigating the impact of cancer upon child-hood, this research sought to include not only thepatient perspective but also the views of the immediatefamily (siblings and parents) and the extended family(grandparents, aunts and uncles) into the impact ofillness. A total of 25 informants contributed to thisstudy: eight patients, four health professionals (onemedical social worker, one play specialist and twopaediatric oncology nurses), two friends (aged 15and 17), and 11 members of patients’ extended families(eight parents, one brother and two grandparents). Thepatients, four male and four female, were aged between15 and 18. With the exception of only one informant allhad completed their treatment programmes (variouscombinations of surgery, radiotherapy and chemo-therapy) during the 6 months prior to the study. Theremaining informant, a female aged 15, had completedher treatment 3 months prior to the study. Allinformants were visiting Christie Hospital on a bi-monthly, monthly, two- or three-monthly basis at thetime the interviews were conducted. The forms of cancerrepresented included brain, spinal, Hodgkin’s disease(cancer of the lymphatic system) and osteo-sarcoma(cancer of the bones, muscles and tendons).

Interviews were conducted and recorded by theresearcher in either the home environment of informants(Greater Manchester, UK) or in the YOU at ChristieHospital between the period January 2000 and March2001. Rather than prompting informants’ with Smith’s(1987) barriers to participation, questions asked focusedupon informants holiday-taking patterns pre- and post-diagnosis. Consequently the barriers identified arosethrough general responses and were categorised post-interview.

4. Findings

4.1. Propensity to travel pre-diagnosis

To gain a broad insight into patterns of tourismconsumption informants were encouraged to reflectupon their main holiday-taking activity. Withoutexception, each informant affirmed that such an activityhad been an integral part of their childhood experiences,although the nature of holidays taken differedwidely. Consistent with earlier studies (Madrigal, 1993;Thornton, 1997), the main holiday activity was orga-nised, financed and took place with the family. Mintel(1999a, b) suggests the family holiday purchasingprocess to be built around a number of factors includingthe holiday destination, domestic or international; thetype of holiday product; the number of holidays takenper year; the timing of holidays and the averageduration.

Thirteen informants had taken a UK-based holidayand eight an international holiday in the year precedingthe cancer diagnosis. International travel was mostcommonly built around an annual package holidayabroad with the family, a Florida holiday representing a‘‘particularly favourite trip’’ for one informant, asentiment echoed by others in the context of Spain(Tenerife) and Greece (the Islands). Domestic holidayscited included an annual trip to Butlins, shoppingbreaks, visiting friends and relatives and activity holi-days. Fourteen informants took one main holiday peryear, the remainder more than one. With the exceptionof only one informant, the main holiday period spannedJuly to August. Holiday duration, whilst difficult toestablish with any certainty, was a 7 days break for 11informants, a 2 week break for six, whilst the remainderventured no discernible pattern. Such patterns arethemselves not only reflective of family holidaysspecifically but other general segments also.

4.2. Propensity to travel post-diagnosis

Holiday-taking patterns post-diagnosis had altered tovarying degrees. Only the travel behaviour of the twofriends interviewed remained the same. Nine informantsspoke of the limited travel they had undertaken whichwas notably domestic in nature, including trips toLondon, Salisbury and Kent and focused more uponvisiting friends and relatives than prior to illness. Fourinformants had not travelled anywhere since the cancerdiagnosis even though their aspirations to do soremained the same ‘‘yeh, I still want to travel but wecouldn’t go away last summer as I was having radio-therapy and you have to be really careful in the sun’’,‘‘well I’ve always liked camping with my mates (y) Istill want to (y). I’m hoping I’ll get back into that’’.Where a significant trip had occurred, it had been

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facilitated in part though Christie Hospital. Twoinformants for instance had taken part in ‘‘Lakeside’’,an outdoor activity holiday for cancer patients locatedin the Lake District. Organised through St. James’Hospital, Leeds, UK, such a holiday involved activeparticipation in leisure pursuits such as walking,climbing and abseiling, the intention being to rebuildconfidence, strength and stamina.

4.3. Barriers to participation

Attempting to account for the changed patterns ofparticipation informants were presented with the hy-pothesis that illness had in fact somehow altered theirdesire to travel so much so that they no longer wished totravel as frequently or undertake activities similar topre-illness. Whilst all concurred that their changinghealth had impacted upon their patterns of participa-tion, none accepted that illness had altered theirmotivation to travel. Indeed if anything informantsspoke of a heightened interest in trying out newactivities. Using the example of an activity holiday shehad participated in post-diagnosis, one informant out-lined a deliberate strategy of moving away from hertraditional ‘‘beach-type holiday’’ to trying out newthings that she had not experienced before. ‘‘Before Iwas ill that sort of thing [activity holidays] was definitelynot my scene (y) it [Lakeside holiday] were brilliant, areal laugh (y) I never thought before [illness] I couldhave done something like that’’.

Even where apathy existed latent desire to travel wasstill apparent as the comments of one male amputeedemonstrate ‘‘yeh, I really still want to go to Londonwith my girlfriend (y) just can’t manage it at themoment’’. The root cause of the altered travel propen-sity was complex. Informants talked openly of thebarriers they had confronted which had arisen as adirect consequence of ill health and which impacted notonly upon their holiday-taking patterns but also theireveryday existence. Such barriers correlate closely withSmith’s (1987) intrinsic, environmental and interactivegroupings.

4.3.1. Intrinsic barriers

A number of informants made passing reference totheir lack of awareness about travel opportunitiesavailable to people in their position. One carersummarised the main issues here when reflecting uponthe isolation her 16-year old son had experienced due tohis illness. Commenting upon holiday-taking activitiesshe reminisced over camping trips her son had enjoyedwith his friends prior to his diagnosis ‘‘he loved doingthings like that [camping], just messing about with hismates. He used to go at weekends and come back full ofstories of what they’d got up to (y) always full of funwhich is how it should be’’. In an attempt to help her son

regain stability after his treatment she had gone toconsiderable lengths to uncover information whichwould help integrate him back into what she consideredto be ‘‘mainstream adolescent activities’’. She found ‘‘alack of information available’’ to assist the process with‘‘general guides and other information not much helpreally’’.

Both psychological and physical health mattersfeatured on many occasions as inhibiting travel partici-pation. In psychological terms, illness had taken its tollupon most informants although to varying degrees andin varying ways. Problems most commonly cited bypatients included feelings of anger, loneliness, depres-sion, unhappiness, despair, vulnerability and insecurityalongside a lack of energy, enthusiasm, optimism andself-confidence. One informant openly admitted to theneed for medication to help his depression and radio-therapy induced fatigue, whilst another felt he was‘‘reliant’’ upon his stress tablets to get him througheverything.

Holiday-taking was both consciously and sub-con-sciously considered outside the scope of many infor-mants, one blaming the isolation imposed by illness‘‘people my age [eighteen] go away with their mates nottheir parents (y) how can I? I hardly see any of them[friends] anymore’’, another the fatigue induced throughtreatment ‘‘I just haven’t got the energy anymore (y)we tried a holiday in Kent but I didn’t enjoy it (y) Isuppose it was the side-effects of the radiotherapy’’.More often though it was the visual signs of cancerwhich generated the most tension for informants.Problems most commonly cited included hair loss‘‘being different, you know bald (y) has been reallygetting to me’’, surgical scarring ‘‘I used to really enjoyswimming, yeh, but now I can’t face it (y) I’ve got thesescars you see and I don’t want anyone to see them’’ andweight gain through medication ‘‘I just seem to keepputting on weight (y) steroids I think (y) I don’t fancylooking like a beached whale somehow’’.

In physical terms, three informants faced impairedmobility with each relying to varying degrees upon awheelchair. Yet despite this shared circumstance, thedegree to which being wheelchair bound affected themdiffered significantly. One informant, the most wheel-chair reliant of the three due to a leg amputation,commented that his holiday-taking patterns were notinfluenced at all by his disability ‘‘yto be honest halfthe time I don’t even think about it, well except for whenI’m wrecking them [i.e. wheelchairs] or something’’.Commenting upon a holiday to Scotland he suggested‘‘you can still go wild like in Glasgow, you just get onwith it. I wouldn’t let it stop me doing things’’. Incontrast however, to the youngest informant, a 15-yearold female, accepting impaired mobility was difficult,the wheelchair itself she blamed for reducing her interestin any leisure pastimes or holiday-taking activities. The

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wheelchair also proved inhibiting to the oldest infor-mant, an 18-year old female. She was reaching an agewhen she naturally wished to travel with her friends,yet as she pointed out, her impaired mobility hadde-stablised these plans ‘‘Well I’d really like to travelabroad you know somewhere hot and laze around allthe time, it’s just difficult to do that with my legs (y)the travel brochures aren’t much help either. Do youever see a wheelchair in the photos?’’.

Dependency was cited on a number of occasions asinhibiting travel although, as conversations revealed, theissue was often not dependency per se, but ratherdependency imposed due to poor access to places fordisabled people (Smith’s, 1987 ‘‘environmental: archi-tectural barriers’’), or to difficulties encompassed invisiting different environments unaided, the countrysideor city centres for instance (Smith’s, 1987 ‘‘environ-mental: ecological barriers’’). Whilst dependency maytake many forms, for young people those mostcommonly noted (see for example Eiser, 1993; Faulkneret al., 1995) relate to the family and include: physicaland psychosocial support through treatment; thetransition from hospital to home; transport to andfrom hospital appointments (akin to Smith’s, 1987‘‘environmental: transportational barriers’’); help incommunicating with doctors and health professionals(akin to Smith’s, 1987 ‘‘interactive: communicationbarriers’’).

The frustrations that physical dependency generateswere considered at length by one informant. As a resultof a spinal tumour she was unable to walk even shortdistances without support: ‘‘yyou just get really pissedoff ‘coz you’re having to rely upon people to take youplaces’’. Travel plans had also become a casualty ofillness as another informant demonstrated ‘‘I’m sup-posed to be going to London for a short break (y) I’mready to go now but I’ve got to wait until someone’s gotthe time to take me’’. Such frustrations are not unique tocancer or indeed holiday-taking activities. Eiser (1993,p. 70) uncovered similar problems in relation to chronicillness in general and attempted to represent such issuesthrough a continuum whereby ‘‘at one end, normaladjustment is achieved (y) at the other (y) a process ofalienation can be observed, characterised by disruptivebehaviour, rejection of cultural and family values andpotential suicide’’. Various studies (see for example,Eiser, 1993; Owens & Payne, 1999) indicate that forcancer patients though the situation is compounded bythe negative terminology associated with the conditioninvariably equating the illness with death. Faulkner et al.(1995) also argued that families themselves often do nothelp the situation citing examples of where some familieswith younger sick members had gone into a state of‘‘anticipatory mourning’’ (p. 3) as evidence. Commentsmade by three informants, all male, corroborated thisclaim, each feeling aggrieved that cancer had compro-

mised their autonomy ‘‘I spend my life with the familythese days (y) does my head in’’, ‘‘I get nagged all thetime about everything (y) can’t get away from here[family and home life] which makes being ill evenworse’’, ‘‘none of my mates get hassled like this (y) itall bothers me more than being ill’’.

To be critical of family reactions though fails to takeaccount of the complexities of the caring role thatfamilies in such circumstances have to cope with.Separate conversations with two carers drew attentionto this. One carer discussed the impact illness had hadupon other family members in general: ‘‘It’s been reallytough on them to see their brother ill’’. Another carerhad found that coping with the needs of a ‘‘hospitalisedchild’’ and looking after children at home had, at times,left her guilt ridden ‘‘I’d go with Susan for some testsand you wouldn’t know whether she was going to bekept in or not (y) if she was then you’d want to be withher (y) but then you’d be letting down her sister athome who’d be worrying’’. Such feelings of guilt,concern and worry have been previously recognised asinhibiting full travel participation (Weightman, 1996).As well as guilt over letting their ‘cared-for’ go onholiday, carers often find it difficult to take a breakthemselves even if support is available for fear of theimpact such an action may have. Yet considering theprovision of short breaks as a support for care in thecommunity Weightman (1996) argues that everybodyneeds to escape from their usual routine. Holiday-takingis held up to provide an opportunity to escape into afantasy world which carers may themselves be in greaterneed of than those they care for.

4.3.2. Environmental barriers

Stephenson’s (1997, p. 124) research determining thetravel inhibitors and facilitators for an Afro-Caribbeancommunity argued that fear of the unknown coupledwith feelings of being conspicuous, lonely and isolatedwithin certain habitats, countryside communities speci-fically, had the capacity to generate an inner ‘‘covertconflict’’ which prevented full participation. For threeinformants mental access beyond the home environmentto participate in leisure or tourism-related activities wasfound to be similarly impaired. Whilst in this case dueprimarily to illness, the feelings that this generated, asarticulated by one informant, concur closely withStephenson’s (1997) findings ‘‘It’s like you stop goingout, well apart from to your mates, you don’t know (y)how people will be. You just feel like you’re on yourown like people are looking at you which can get to yousometimes’’. Such feelings also spilled over into theholiday environment, reflected most obviously withinconversations about hair loss and surgical scarring (seeintrinsic barriers).

A number of informants suggested that reactions tocancer may really be a reflection of a wider problem of

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prejudice and intolerance against those who do notconveniently ‘‘fit in to’’ what society perceives to be‘‘normal’’. The comments of one carer coping with awheelchair bound daughter summarised much of thesentiment here ‘‘ypeople can be so intolerant (y) yougo somewhere and you just know people are beingimpatient around you ‘coz it takes you longer to dothings’’. Whether such a situation represents intoleranceor is really more of a reflection of ignorance isquestionable as comments made by another informantindicated. Questioning ‘‘the ridiculous ideas people haveabout illness’’, she recounted a number of ‘‘ignorant’’situations. Attempting to return to education tocomplete an ‘A’ level course she noted ‘‘I felt like quiteout of it and as if people thought I’d lost my mind orsomething not just the use of my legs’’, whilst later onthe subject specifically of holiday-taking she commented‘‘why is it that when you’re ill people think sending youaway to jump off a cliff or swim up a river or some othersuch horror will somehow do you good? It just seems tome that you get cancer so then you’ve got to hurlyourself off a mountain to prove you’re alright!’’Describing herself as a ‘‘beach bum’’, this informantindicated on a number of occasions, that ‘‘the sun and abeach’’ were her ‘‘type of holiday’’ and that ‘‘cancer, nomatter how bad it is, is not going to change that’’.

Currently there is no comprehensive system oflegislation in place to safeguard the needs of the sickbe they mentally or physically impaired. Various acts doexist which, to different degrees, cover such needs in theUK, the Chronically Sick and Disabled Persons Act(CSDP) (1970) for instance and the more recentDisability Discrimination Act 1995. Yet none are all-embracing, the consequences of which do extend intothe holiday-taking environment. Inspired by her abilityto cope with a holiday organised by her medical socialworker, in the weeks following her return one informantelected to travel to Torremolinos, Spain, with a friend,her first international trip since diagnosis. Opting for aweek package holiday option the pair approached atravel agent and alongside the holiday booking wereadvised of the need to purchase travel insurance. The‘in-house’ policy was promoted initially. However uponfurther questioning it transpired that, for health reasons,the policy was unsuitable and she would have to seekalternative arrangements. She reported reacting stronglyto this ‘‘there you are trying to feel normal and donormal things that everyone else takes for granted andall of a sudden it’s [cancer] thrown back in your face allover again’’. She was left feeling that the matter hadbeen dealt with anything but sensitively, disturbed notso much by the inconvenience of having to findalternative insurance, or indeed the potential additionalcost factor involved, but rather by the inference thatthose coping with cancer are ‘‘not considered normal bytravel agents’’.

4.3.3. Interactive barriers

Informants did not themselves, collectively or singu-larly, consciously raise interactive barriers, communica-tion issues or language barriers for instance, asinhibiting their holiday-taking habits. Yet many reliedsub-consciously upon their family members to commu-nicate ideas and responses to the researcher. Such asituation is not uncommon for this age group as bothFaulkner et al. (1995) and Eiser (1993) had previouslyestablished, the former within the context of the familycommunicating with doctors and health professionalson behalf of their ‘child’, the later reflecting upon thepsychosocial dependency young people experiencingillness exhibit. Both studies primarily focused uponeveryday ‘necessity’ dependency. Neither considered theextent to which this dependency might extend into otherenvironments such as leisure and holiday-taking experi-ences. Yet conversing with informants it becameapparent that many lacked the necessary confidence totravel without substantial backing and support as theconcerns of two informants highlight, one commentingupon domestic travel ‘‘I was hoping to go to the LakeDistrict with some mates soon but I’m not sure about itnow (y) What if I’m not feeling well, how will I dealwith it?’’, the other international travel ‘‘I’d love to goabroad again with my mates (y) we’re hoping to go toSpain again but I’m not sure if I can cope with it on myown [without family] anymore’’. Such a situation wouldnot be uncommon for this age group in any case but isundoubtedly compounded for those coping with theexperience of illness also.

5. Conclusions

The holiday-taking patterns of young people is anarea frequently neglected within research. This paperhas focused upon this age group questioning specificallythe impact of illness, cancer, upon their propensity totravel. It has corroborated earlier health-care research(Eiser, 1993; Faulkner et al., 1995) which suggested thatadolescents can experience loneliness and isolation oncediagnosed with cancer and used holiday-taking todemonstrate how the socialisation process, widelyacknowledged as an important part of adolescence,may be compromised by illness.

For those contending with cancer this study has foundthat barriers to tourism participation, additional tothose commonly acknowledged as significant in ageneral context, exist. Such barriers are consistent withthe intrinsic, environmental and interactive barriersidentified in the earlier work of Smith (1987) yet areseldom appreciated as problematic pre-holiday-takingas they are not recognised as having any directrelationship with the activity. Such barriers includefear of being unable to cope, lack of confidence and

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self-belief compounded by the side-effects of treatment,tiredness for instance and the visual signs of cancerincluding hair loss through chemotherapy, disfigure-ment through surgery, scarring through Hickman linesand weight gain through drugs such as steroids use.

Developing an appropriate methodology to exploresuch barriers was complicated by the lack of tourism-related research in this area. This has prompted relianceupon the methodologies employed in health-care stu-dies, although the research design did differ in manyrespects to traditional techniques used as it was builtupon qualitative rather than quantitative approaches.To provide the necessary platform for ‘‘making sense of,not an illness, but a life’’ (Mathieson & Stam, 1995,p. 284), positioning holiday-taking as one componentof this existence, data collected focused not only uponholiday-taking patterns post-diagnosis but also ques-tioned the significance of holiday-taking pre-diagnosis.

Travel propensity pre- and post-diagnosis in themajority of cases had altered. Only limited travel hadtaken place post-diagnosis, most often to domesticdestinations. Holiday behaviour is time dependenthowever. Generally informants took one main annualfamily holiday. In a number of cases the cancer wasdiagnosed and treated after the annual holiday hadtaken place for 1 year. Furthermore, the interviews wereconducted between January and March, a time of theyear which itself falls in-between the main annualholiday-taking period. It is probable that such timingswould have influenced the travel patterns of informantspost-illness. Consequently the role illness played in thischange is not necessarily clear-cut.

Also time dependent are attitudes towards holiday-taking. Such attitudes will be influenced by the stage ofrecovery the informant has reached. In a number ofcases comments made by informants suggested a changein attitude towards holiday-taking post-illness, someseeing travel as more significant, most as morecomplicated. Determining the stage of recovery aninformant has reached is itself complex for whilst sevenout of eight of the patients interviewed were at least 6months into recovery, the individual experience ofillness did differ informant to informant. Consequentlythe different mood swings accompanying recovery fromillness may well also occur at different times and impactupon the findings of the study.

One common theme which did unite informants wasthat whilst the desire to travel may still be intact post-illness, the confidence to do so may not be. Theconsequences of illness, impaired mobility for instance,alongside the perceived inability of the TourismIndustry to respond to such consequences were citedas contributory factors here. On a number of occasionsinformants expressed concerns about being unable toaccess appropriate holiday information to help formu-late their travel plans with confidence. Problems cited

included a lack of published, relevant literature in guidebooks and holiday brochures along with a perceptionthat the Tourism Industry, travel agents in particular,were less than supportive when advising travellers withparticular health needs.

Yet contrary to the perceptions of informants,organisations do exist which provide support in thisarea. Two significant organisations are the RoyalAssociation for Disability and Rehabilitation (RADAR),an umbrella organisation for constrained people dealingprimarily with the disabled but also working alongsideother charitable organisations and the Holiday CareService (HCS). Covering both domestic and interna-tional travel, RADAR produces a variety of detailedinformation including guides and holiday fact packscovering aspects of planning and booking a holiday.Packs produced annually detail for instance insurancecover, holiday finance (including trusts and benevolentfunds), organisations involved in holiday opportunitiesfor disabled people, commercial companies makingholiday provision for disabled people, cruise holidaysand accommodation groups. In addition to this,RADAR publishes an extensive publications list, amonthly bulletin and other information on services fordisabled people. Companies listed include bothhose primarily geared towards disabled people, e.g.MENCAP and those dealing also with the ‘mass’holiday market, e.g. Thomson Holidays. The HCS alsooperates an information unit for the physically disabled,mentally disabled and sensory disabled (amongst others)producing guides such as Accessible Holidays in the

British Isles—A Guide for Disabled People 1997 (HolidayCare Service (HCS), 1997) in conjunction with RADARand the National Tourist Boards.

The lack of current public awareness of suchorganisations may well be a reflection of the fact thatmany which do provide support for impaired travellersare drawn from the charitable and voluntary sector, asector which to date has been notably under-researched(Turner, Miller, & Gilbert, 2001). It may also be areflection of the reticence of the commercial sector totake responsibility for accommodating the needs of aconstrained or less-able bodied consumer, a mindsetSmith (1987) cautioned would continue to inhibittourism participation over a decade ago. Irrespectiveof the reason, the situation presents the future TourismIndustry with a clear promotional challenge.

Given that some support does exist, more targetedpromotional campaigns are required to better inform awider population of the range of travel-related oppor-tunities available. In the context of illness, hospitalbased staff may have a key role to play. Widelyacknowledged as playing a significant influential rolein their patients health and wellbeing (Riddle, 1983),health-care professionals in general, hospital-based staffmore specifically, occupy a unique position in being able

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to guide patients towards appropriate literature andsupport services. Adopting a more proactive role ininformation dissemination may benefit not only thewould be traveller but, if extended, could also be ofassistance in alerting the wider tourism industry tohealth issues inhibiting travel. The scope for increasedcollaboration between health-care professionals and thetourism industry at both a local and national level isconsiderable. This study has identified a need for such,particularly in relation to information distributionchannels, travel agents one part of this. It is noticeablehow, to date, such professionals have been infrequentlyincluded in any discussion of facilitating tourismparticipation.

Alongside this work though, in order for anysignificant advances to be made then the wider TourismIndustry, particularly those involved in facilitatingtravel through information provision (e.g. travel agents),transportation (e.g. airlines and tour operators) andaccommodation provision (e.g. hotels and guest houses),need to accept a degree of social responsibility and makea contribution to enabling ‘ill’ travellers to realise theirtravel aspirations.

Acknowledgements

The author would like to acknowledge and thank thestaff, patients and their families linked with the YoungOncology Unit (YOU), Christie Hospital NHS Trust,Manchester, UK, who participated in this research. Shewould also like to acknowledge and thank her researchsupervisors Professor Howard Hughes (ManchesterMetropolitan University, UK) and Professor StephenClift (Canterbury and Christ Church College, Canter-bury, UK) for their support and guidance throughoutthe study.

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