GASES DE EFECTO INVERNADERO

The cu rren t stu d y u sed a questionnaire-based m ethod. It w as an ticipated th at th is m e th o d w o u ld facilitate p a rtic ip a tio n th ro u g h o u t th e y ear, ease th e b u rd e n of participation, an d allow com parison w ith p rio r research.

The adolescent cancer u n it is p a rt of a regional oncology centre. The regional n a tu re of th e u n it an d the low incidence of adolescent cancer su g g ested th at m an y p atien ts w o u ld com e from ou tsid e the L ondon area. Logistically it w as u nclear h o w frequently adolescent patien ts an d th eir fam ily m em bers w o u ld atten d the u n it, p articu larly at th e 12 m o n th assessm ent point. It w as h o p ed th a t th e fle x ib ility of q u e s tio n n a ire u se w o u ld e n h a n c e lo n g itu d in a l particip atio n by; en su rin g access to p atients an d fam ilies th ro u g h o u t the year; red u cin g the practical inconveniences of h a v in g to schedule interview s, and, red u ce the tim e req u ired for p artic ip a tio n in the study. F u rth erm o re, it w as c o n sid e re d th a t q u e stio n n a ire s w o u ld facilitate p a rtic ip a tio n b y fam ily m em b ers b ecause, ra th e r th a n in terv iew s, th ey co u ld b e less em o tio n ally in tru siv e to p a tie n ts an d fam ily m em b ers d u rin g a d ifficu lt p e rio d . The a d o le sc e n t p a tie n ts sp ecifically c o u ld h a v e fo u n d q u e s tio n n a ire s less in tim id atin g th a n an interv iew an d hence m ay h av e b e en m o re tru th fu l in their responses.

Finally, for ex p erim en tal rigor sta n d a rd ise d in stru m e n ts w ere u se d so th a t d ata from the stu d y could be com p ared to existing research. The decision to u se a q u a n tita tiv e ra th e r th a n q u a lita tiv e m e th o d w as m a d e as it w as anticipated th at it w o u ld be possible to recruit sufficient p artic ip a n ts to rep o rt d a ta th a t co u ld be co m p ared w ith p rio r research . H en ce, th e research

findings would be comparable and generalisable to other adolescent cancer patients.

Q u estio n n a ire s d ev elo p ed fo r th e c u rren t s tu d y

Tw o questionnaires w ere d ev elo p ed specifically for use in the c u rre n t stu d y as there w ere no a p p ro p ria te sta n d a rd ise d q u estio n n aires; assessin g fam ily en vironm ent in all participants, an d activity levels in the adolescent patients.

De v e l o p m e n to fa f a m il y s c a l e (FAME)

The FAME w as d ev elo p ed for this s tu d y b ecau se th e q u e stio n n a ire u se d d u r in g th e p ilo t s tu d y w a s to o lo n g a n d c o m p lic a te d . T he F am ily E n v iro n m en t Scale (FES) w as a d m in iste re d to th e ad o lescen t p a tie n ts an d th eir p a re n ts d u rin g th e p ilo t s tu d y (M oos 1990). The q u e stio n n a ire h as 3 scales, 2 w ere used; the ideal fam ily an d the a c tu a l fam ily (180 questions). Each FES scale h a d 90 questions w ith 'tru e '/'fa ls e ' an sw ers a n d to o k 30 to 40 m in u tes to com plete. Some questions w ere co n sid ered v ag u e or am biguous, others w ere n o t u n d e rsto o d or n o t ap p ro p ria te for the ch ild re n in a fam ily. Both the ad o lescen t p a tie n ts a n d th e ir p a re n ts co m p lain ed th a t q u estio n s w e re b iz a rre ; E xam ples of q u e stio n s th a t elicited c o m m e n ts from th e adolescent patien ts an d their p aren ts were:

"We believe there are som e things yo u ju st have to take o n faith" "We can do w h atev er w e like in o u r family"

"We often seem to be killing tim e at hom e" "We rarely have intellectual discussions"

"Family m em bers w o n 't try th a t h a rd to succeed" "Dishes w ill be done im m ediately after eating" "M embers w o n 't believe in heaven an d hell."

The 'tru e '/'fa ls e ' scoring created fu rth e r confusion (Fobair an d Z abora 1995). To som e of the questions a positive answ er req u ired a 'false' statem en t w hich fam ily m em bers fo u n d co unter-intuitive; for exam ple: "Fam ily m em bers are n o t v ery involved in recreational activities o u tsid e w o rk or school" - if fam ily m em b ers are th e a n sw e r is 'false'. "Fam ily m em b ers a re ra re ly o rd e re d aro u n d " - to an sw er tru e ' a p p e a rs to say th a t fam ily m em b ers are o rd e re d a ro u n d w hereas it does not.

Tw o altern ativ e fam ily en v iro n m en t scales w ere considered. The Im pact on Fam ily Scale h ad tw o draw backs; a financial scale in the context of health care n o t re le v a n t to th e UK an d th e q u estio n s w ere n o t d ire c te d to w a rd s the c h ild re n in a fam ily, o n ly th e a d u lts (Stein a n d R iessm an 1980). The E d in b u rg h Fam ily Scale w as n o t u sed as it d id n o t in clu d e co m m u n icatio n w ith in the fam ily as a dim ension (Blair, Freem an et al. 1995).

D e v e lo p m e n t an d d esig n ; The original questions in the FAME w ere designed to assess fo u r d im en sio n s id e n tified from p re v io u s fam ily re se a rc h an d e x istin g q u e stio n n a ire s; c o m m u n ic a tio n /d e c isio n -m a k in g , f le x ib le /rig id fam ilies, conflict, an d e n m e sh m e n t/ overprotection. There w ere 5 questions in each p ro p o se d d im en sio n w ith the exception of conflict th a t h a d 6. The q u estio n n aire h a d 21 questions, scored from 1-5 ("Disagree' to 'A g ree', w ith 3 c o rre s p o n d in g to 'N e ith e r A g ree o r D isag ree') a n d to o k 6 m in u te s to com plete. The qu estio n n aire w as reverse scored. The FAME q u estio n n aire w as analysed usin g Principal C om ponents Factorial analysis on d a ta from the 173 adolescent controls, the results are show n in Table 3.1.

U sin g a v a rim a x ro ta tio n , six facto rs w ith E igen v a lu e s o v e r 1.0 w ere identified in the FAME questionnaire, accounting for 61.9% of variance.

Table 3,1: FAME Scale: Items listed by factor assignment and strength of loading

Scale name and items Loading

Factor 1 Cohesion CEigen value: 6.00. % var. 28.61

9 When one family member has a problem we all worry .75052 6 We discuss important events such as exams, jobs,

holidays etc.

.72595 16 In our family we are very much involved with each

other's lives

.67951 1 In our family we talk to each other about

problems we have

.67538 20 I find we worry about each other a lot .67080 21 In our family we tend to support each other .65363 Factor 2 Conflict resolution (Eigen value: 1.94. % var. 9.21

15 We do not bear grudges in the family .71632 17 In our family we don't tend to let disagreements drag on .71155 18 Rules are flexible in our household .63858 13 Disagreements tend to be settled amicably in our family .52038

19 We avoid arguing whenever possible .51769

Factor 3 Routine Œigen value: 1.62. % var. 7.7)

14 We are a family of routine .82057 2 There are set ways of doing things at home such

as meal times, studying etc.

.81098 3 I f anybody has a problem they tend to keep it in the fam ily .50371

Factor 4 (Eigen value: 1,23, % var. 5.9)

4 We tend to have lots of disagreements at home -.70097

19 We avoid arguing whenever possible .56861

10 There is often someone sulking in our fam ily -.50805

Factor 5 (Eigen value: 1.16, % var. 5.5)

7 We have to be careful about what we say to some family members

.77550

10 There is often someone sulking in our fam ily .57596

Factor 6 (Eigen value: 1.04, % var. 4.9)

12 If we feel like doing something on the spur of the moment we often do

.58823 11 We do not speak to each other about personal problems

and feelings

.51356 3 If anybody has a problem they tend to keep it in the fam ily .50185

Questions with a factor loading of less than .5

5 We often try different ways of tackling problems 8 We always look out for each other in our family

Internal reliability of the factors w as assessed u sin g alp h a coefficients, three factors w ere d iscarded. Factors 1 a n d 2 h a d alp h a coefficients of .8437 an d .6793 respectively. Q u estio n 19 w as rem o v ed because it lo a d e d o n factor 2 an d factor 4. Factor 3, w ith qu estio n 3 rem oved, h a d an a lp h a coefficient of .7653. Q uestion 3 w as rem oved because it loaded on factor 6 a n d also d id n o t have face v alid ity com pared to the oth er 2 questions in th e factor. As a result of this an aly sis th e FAME becam e a 12 item q u estio n n a ire w ith 3 factors; cohesion, conflict resolution an d routine, explaining 45.5% of variance.

De v e l o p m e n t o f a n Ac t iv it ie ss c a l e (ACTS)

W e aim ed to assess h o w m an y activities th e ad o lescent p a tie n ts h a d h a d to give u p d u e to their cancer an d its treatm ent. There are no p rev io u s stu d ies assessin g th e restrictio n s im p o se d on ado lescen ts tre a te d for cancer a n d w h eth er their activities change from active to the less active, or, w h a t h ap p en s as their treatm en t finishes. N o m easures w ere identified in the literatu re so a scale w as developed for this research.

D e v e lo p m e n t a n d design: The scale w as designed to be a sim ple co u n t of the activities in w h ich the adolescent w as p articipating. It w as d ev elo p ed from inform ation gained d u rin g the initial interview s co n d u cted w ith th e patients. S p o rt a n d h o b b y co u n ts w e re assessed as w ell ch a n g e s in th e specific activities of; sho p p in g , S atu rd ay job, cinem a, p u b s, clubs an d p arties, seeing school frien d s an d a tte n d in g school. R esponse categories w ere 'g iv en u p ', 're d u c e d ', 'no ch an g e' an d 'in c re ase d ' as w ell as "not applicable". The q u estionnaire h a d six sections an d took ab o u t 5 m in u tes to com plete. There w ere tw o q ualitative questions at the end; "Is there a n y th in g y o u like ab o u t com ing into hospital?" an d "W hat do yo u p a rtic u la rly dislike a b o u t com ing into hospital?"

S ta n d a rd ise d q u e stio n n a ire s

Q u e stio n n a ire s w ere selected to m e a su re th e v a ria b le s id e n tifie d b y th e re search ers as th e b ases for h y p o th e se s in th is research , as d e scrib e d in C h a p te r 2. Im p o rta n t selectio n c rite ria w e re face v a lid ity , sim p licity , extensive p rio r use (statistical data), an d ease of co m p reh en sio n , considering th e y o u n g e s t subjects w o u ld b e 12 y e a rs old. It w as d e c id e d to u se q u estio n n aires desig n ed for a d u lts rath er th a n a m ix tu re of child an d a d u lt q u e s tio n n a ir e s w ith few q u e s tio n n a ir e s d e s ig n e d fo r a d o le s c e n ts . C o m p a riso n s b e tw ee n the ad o lescen t p a tie n ts a n d th e ir p a re n ts w ere an im p o r ta n t a s p e c t o f th is s tu d y , p a r tic u la r ly c o p in g s tr a te g ie s a n d psychological w ell being, hence the sam e questio n n aires w o u ld be required. It w as also k n o w n at the o u tset th a t the m ean age of th e s tu d y g ro u p w o u ld be m id d le adolescence an d ch ild re n 's m easu res w o u ld be too sim ple, or too b eh a v io u r orientated. Finally, w e d id n o t w a n t to fu rth e r red u ce o u r stu d y group by usin g differing m easures on older an d y o u n g er adolescent patients. The sch ed u lin g of the questionnaires is sh o w n in F igure 3.2, at the en d of this