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3. METODOLOGÍA

4.3 PILOTO DE INTEGRACIÓN

A t th e tim e of d iag n o sis, ad o lescen t p a tie n ts w ith can cer w e re no m o re anxious o r d ep ressed th a n a control g ro u p of adolescents. The m o th ers an d fathers of n ew ly diagnosed adolescent cancer patien ts rep o rted h ig h levels of anxiety a n d d epressed m ood. There ap p ear to be few significant relationships b e tw e e n th e m ood of the adolescent p a tie n ts at d iagnosis a n d th e ir disease, in clu d in g th eir b u rd e n of sym ptom s. N o n e of the coping strategies assessed in the c u rre n t s tu d y w ere significantly re late d to th e ad o lescen t p a tie n ts' m o o d at diagnosis. H ow ever, in the context of a cancer diagnosis adolescent p atien ts rep o rted m ore use of acceptance, an d the seeking o f em otional support fo r em otional reasons, th an a control g ro u p of adolescents.

D em o g rap h ic d ata

Fifty eig h t adolescent p atien ts, 47 m o th ers an d 34 fath ers from 60 fam ilies ag reed to com plete q u estio n n aires soon after the diag n o sis of cancer. Sixty p e rc e n t of th e adolescents w ere m ale, th e av erag e age w as 16 years. The m ajo rity of the ado lescen t p atie n ts h a d a d iag n o sis of b o n e or soft tissu e sarcom a lim ited to the p rim ary site. A control gro u p of adolescents (n=173) w as re c ru ite d w ith sim ilar d em o g rap h ic ch aracteristics to th e ad o lescen ts

w ith cancer. M ore control adolescents co m p ared to th e ad o lescen t p atien ts lived w ith b o th their parents, w ho ow ned their o w n hom e.

T he a d o le s c e n t p a tie n ts , th e ir m o th e rs a n d fa th e rs c o m p le te d m o o d , o p tim ism a n d sy m p to m q u estio n n aires w ith in a m o n th of th e d iag n o sis of cancer. Q u e stio n n a ires assessin g co p in g strateg ies, fam ily e n v iro n m e n t, h ealth locus of control, social s u p p o rt an d an g er w ere co m p leted w ith in tw o m o n th s of diagnosis.

Six fam ilies refu sed to p a rtic ip a te in th e c u rre n t stu d y . T hree of th e six ad o le sc e n t p a tie n ts in th ese fam ilies h a d ex ten siv e d isea se a t diag n o sis. Reasons for refusal w ere th at there w as too m u ch p a p e r w o rk to do already or a lack of interest.

M ood at th e tim e of d iag n o sis

Ad o l e s c e n t p a t ie n t sa n d c o n t r o l s

T here w ere n o significant differences in the levels of anxiety a n d d ep ressed m o o d b e tw e e n th e ad o lescen ts recen tly d ia g n o se d w ith can cer a n d the control adolescents. There w ere no sex differences in th e re p o rtin g of anxiety or d e p re sse d m o o d in the ad o lescen t p a tie n t g roup. In th e co n tro l g ro u p , girls rep o rted h igher trait anxiety an d depressed m ood th a n boys.

The sta te a n d tra it an x iety scores for b o th g ro u p s w e re sim ilar to th o se rep o rte d by the au th o rs of the anxiety scale (Spielberger, G orsuch et al. 1983). S tu d ie s c o n d u c te d so m e tim e a fte r d ia g n o s is h a v e fo u n d sim ila rly u n re m a rk a b le levels of state anxiety in adolescents w ith cancer c o m p ared to control adolescents (Canning, C anning et al. 1992; G oertzel a n d G oertzel 1991 a n d K ellerm an, Z elter et al. 1980). C o m p arab le levels of d e p re ssio n h av e b e e n r e p o rte d in a d o lescen ts w ith can cer a n d c o n tro ls (B ennett 1994; C an n in g , C an n in g et al. 1992 an d W orchel, N o lan et al. 1988). K aplan an d c o lleag u es (1987), u sin g th e Beck D ep ressio n In v e n to ry (BDI), re p o rte d a m ean score of 7.1 (SD 6.0, n=16) in adolescent cancer p atien ts tw o y ears p o st d iag n o sis. This score w as no d ifferen t to a control sam p le of h ig h school s tu d e n ts (K aplan, B usner et al. 1987). The s tu d y a n d c o n tro l g ro u p s of ad o lescen ts in the cu rre n t stu d y re p o rte d sim ilar m ean BDI scores to th at

rep o rted by K aplan (K aplan, B usner et al. 1987). It h as b een su g g ested th at ch ild ren w h o are ill an d experiencing d isru p tio n are able to cope w ith the a tte n d a n t stress. It is those w h o are n o t stressed, an d can n o t see h o w they w ould cope, w ho get stressed (Kellerman, Zelter et al. 1980).

The s ta rtin g h y p o th e sis th a t, a t th e tim e of d iag n o sis, a d o lesc e n t cancer p atients w o u ld be m ore anxious an d d ep ressed th an control adolescents has n o t been up h eld . P rior research has n o t assessed adolescents close to the tim e of initial diagnosis. It h a d b een th o u g h t th a t th e shock of a cancer diagnosis w o u ld h av e an im pact on the adolescent p a tie n ts' psychological well-being. This d id n o t a p p ear to be the case. O n first adm ission to the A dolescent U nit, before startin g treatm en t, the m ajority of adolescent p atie n ts d id n o t rep o rt hig h levels of d istress. They w o u ld h av e b een in p a tie n ts for a few d ays before com pleting the questionnaires. Their experience of h a v in g a diagnosis of cancer w as recent. It w as possible th a t the adolescent p atien ts, w hile fully u n d e rsta n d in g the diagnosis, w ere u n a w a re of th e im plications of it in term s of tre a tm e n t a n d m o rta lity at th is tim e. A n ad o le sc e n t p a tie n t from the c u rre n t s tu d y w ro te a b o u t th e re la p se of h is cancer: "T h e w o rst h a d h ap p en ed , I w as back to w here I h ad been, except this tim e ro u n d , I knew the significance of it all" (p77; R oughton 1997).

A dditionally, at the tim e of first diagnosis, th e adolescent p a tien ts m ay have been receiving su b stan tial em otional s u p p o rt from th eir p a re n ts, fam ily an d friends. A t this early p o in t in d iagnosis the experience m ay h a v e seem ed qu ite special. The ad o lescen t u n it m ay also h a v e p ro v id e d a re a ssu rin g en v iro n m en t to the y o u n g patients. They m ay h ave perceived th eir situation as less th re a te n in g because th ey h a d m et p a tie n ts w ith th e sam e d iagnosis an d d id n o t consider them selves to be unusual.

Previous research has n o t assessed anger levels in adolescent cancer patien ts at the tim e of a cancer diagnosis. The m ean an g er scores for th e boys an d girls w ith cancer w ere sim ilar to b o th the scores for co n tro l g ro u p in the cu rre n t s tu d y an d the rep o rted n o rm s in A m erican ad o lescen t boys (14.35) an d girls (14.46) (Spielberger 1988). In a q ualitative stu d y of ch ild re n (m ean age 11 years) w ith cancer, an g er w as re p o rte d b y alm o st h alf of the g ro u p

(Kashani an d H akam i 1982). Time since diagnosis ran g ed from 1 m o n th to 10 years. It m ay be th a t anger increases w ith th e disease history. The low levels of rep o rte d an g er in the cu rren t s tu d y m ay h av e reflected th e ad o lescent patients lim ited insight into the significance of a cancer diagnosis.

A dolescent p a tie n ts w ith m etastatic d isease h a d sig n ifican tly h ig h e r state an g er scores a t d iag n o sis th a n ad o lescen t p a tie n ts w ith localised disease. C au tio n n ee d s to be sh o w n in in te rp re tin g this re su lt b ecau se of th e low n u m b er of adolescent patien ts w ho h a d m etastatic disease. H ow ever, it m ay be th a t th e ad o lescen t p atien ts externalised th eir d istress in term s of anger ra th e r th a n an x iety or d ep re sse d m ood. A n g er m a y h av e b e e n a m o re fam iliar em otion as it is h o w younger children express th eir frustrations.

Pa r e n t s

The m ean scores of state anxiety for m others an d fathers in the cu rren t stu d y w ere 52.4 a n d 46.7 resp ectiv ely . T hese w e re m o re th a n o n e s ta n d a rd d ev iatio n above n o rm s rep o rte d b y th e a u th o rs of th e State T rait A nxiety Inventory (Spielberger, G orsuch et al. 1983). Sim ilar rep o rts of state anxiety h av e b een id en tified in p rio r research. Scores of 50.6 a n d 50.1 h av e b een found in the m others an d fathers of ch ild ren w ith cancer (m ean age 6 years) d u rin g th e d iag n o stic p e rio d (Fife, N o rto n et al. 1987). D a h lq u ist an d colleag u es' (1993) research w ith p a re n ts at a m ean of 8 w eek s p o s t th eir c h ild 's (m ean age 7 years) cancer d iag n o sis re p o rte d m e a n state anxiety scores of 56.7 an d 52.7 respectively for m others an d fathers.

In the c u rre n t stu d y , 28% of m o th ers an d 9% of fath ers re p o rte d scores of ov er 16 on th e Beck D ep ressio n In v e n to ry (BDI). This in d ic a te d h ig h e r m oderate to severe levels of depressed m ood in m others, b u t a sim ilar level of d e p re sse d m o o d in fath ers, c o m p a re d to D a h lq u ist's fin d in g s of 13% of m o th e rs a n d 8% of fa th e r re p o rtin g BDI scores of o v e r 16 (D ahlquist, C zyzew ski et al. 1993). Seven w eeks after the diag n o sis of cancer in th eir child, 24% of p a re n ts (93% m others) re p o rte d m o d era te to sev ere levels of depression (M anne, Lesanics et al. 1995).

It seem ed th a t, at d iag n o sis, th e levels of an x iety a n d d e p re ss e d m o o d re p o rte d in th e c u rre n t s tu d y reflected p re v io u s re se a rc h in p a re n ts of ch ild ren w ith cancer. The sta rtin g h y p o th esis th a t h ig h levels of d istress w o u ld b e id e n tifie d in th ese p a re n ts h as b e e n u p h e ld . T h ere w e re no significant differences betw een m others an d fath ers' rep o rtin g of anxiety an d d epressed m ood.

A t the tim e of th eir ad o lescen t's cancer diagnosis, m o th ers a n d fathers h a d sim ilar anger scores. The m ean scores in m others (13.49, SD 4.14) an d fathers (14.00, SD 5.31) sh o w ed a tendency to be h ig h er th a n th e n o rm s re p o rted by th e scale a u th o rs for w o m en (10.82, SD 1.78) a n d m e n (10.77, SD 2.13) (Spielberger 1988).

There w ere no statistically sig n ifican t rela tio n sh ip s b e tw e e n an x iety an d d ep ressed m o o d in adolescent p atien ts, m o th ers an d fathers. The startin g h y p o th esis w as th a t th ere w o u ld be relatio n sh ip s b etw een m o o d in fam ily m em b ers. In creased d e p re sse d m o o d in m o th e rs, a n d h ig h e r levels of depression in their children, h ave b een identified in fam ilies of ch ild ren w ith cancer (M ulhern, Fairclough et al. 1992). Tim e since d iagnosis w as a m ed ian of .7 years, range .1 to 14 years (M ulhern, F airclough et al. 1992). It m ay be too soon in the disease trajectory to assess w h eth er the m ood states of varying fam ily m em bers have an im pact on one oth er in the cu rren t study.

O p tim ism

There w ere low negative correlations (r valu es below .6) b etw een the m ood states an d o p tim ism in the ad o lescen t p atien ts, m o th ers an d fath ers at the tim e of diagnosis. A t diagnosis, d isp o sitio n al op tim ism acco u n ted for som e of the variance in the state anger scores of parents.

Illn ess p e rcep tio n s

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