SELF-CARE AND HI V/ AI DS PATI ENTS: NURSI NG CARE SYSTEMATI ZATI ON
1Joselany Áfio Caet ano2
Lorit a Marlena Freit ag Pagliuca3
Caet an o JA, Pagliu ca LMF. Self- car e an d HI V/ aids pat ien t s: n u r sin g car e sy st em at izat ion . Rev Lat in o- am Enferm agem 2006 m aio- j unho; 14( 3) : 336- 45.
This research aim ed at syst em at izing nursing care t o HI V/ aids pat ient s in view of Orem ’s Self- care Deficit Nursing Theory, using t he convergent - care m et hod and t he Self- Care Nursing Process. Subj ect s were t hir t een HI V/ AI DS pat ient s at t ended at a non- gov er nm ent al or ganizat ion in For t aleza/ CE, Br azil. We used int erview t echniques, physical exam inat ion, observat ion and inform at ion records, wit h a st ruct ured inst rum ent , addr essing r equisit es r elat ed t o univ er sal self- car e, dev elopm ent and healt h alt er at ions. Self- car e deficit s corresponded t o ninet een nursing diagnoses, nam ed according t o NANDA’s Taxonom y I I , t en of which were based on t he requisit es for universal self- care, five on t he requisit es for self- care relat ed t o developm ent and four on t he requisit es for self- care relat ed t o healt h deviat ions. I n care planning, goals were est ablished and t he syst em and healt h m et hods were select ed, priorit izing support - educat ion act ions in order t o engage HI V/ aids pat ient s in self- care.
DESCRI PTORS: self- care; acquired im m unodeficiency syndrom e; HI V; nursing
EL AUTOCUI DADO Y EL PORTADOR DE SI DA:
SI STEMATI ZACI ÓN DE LA ATENCI ÓN DE ENFERMERÍ A
La finalidad de est a invest igación es sist em at izar la at ención de enferm ería al port ador de SI DA, baj o la Teoría de Enferm ería del Déficit de Aut o- cuidado de Orem . Se usó la m odalidad convergent e asist encial, a t ravés de la operación del Proceso de Enferm ería de Aut o Cuidado. Los suj et os fueron t rece port adores de SI DA, atendidos en una organización no gubernam ental en el m unicipio de Fortaleza/ CE, Brasil. Para el desarrollo del estudio, se usaron técnicas de entrevista, de exam en físico, de observación y de registro de las inform aciones - con un inst r um ent o est r uct ur ado – t r at ando de los r equisit os de aut o- cuidado univ er sal, los r efer idos al desarrollo y los de alteraciones de la salud. Los déficit del auto cuidado correspondieron a diecinueve diagnósticos de enferm ería, denom inados según la Taxonom ía I I de NANDA, diez de los cuales dent ro de los requisit os de auto cuidado universal; cinco en los requisitos de auto cuidado relativos al desarrollo y cuatro en los requisitos de aut o cuidado r elacionados al desvío de salud. En la fase de planificación de la at ención de enfer m er ía, fueron est ablecidas las m et as y los obj et ivos y seleccionados t ant o el sist em a com o los m ét odos de ayuda, dando prioridad a las acciones de apoyo educacional visando al com prom iso del port ador de SI DA con el aut o cuidado.
DESCRI PTORES: aut ocuidado; síndrom e de inm unodeficiencia adquirida; VI H; enferm ería
AUTOCUI DADO E O PORTADOR DO HI V/ AI DS:
SI TEMATI ZAÇÃO DA ASSI STÊNCI A DE ENFERMAGEM
À pesquisa t em com o obj et ivo sist em at izar a assist ência de enferm agem ao port ador do HI V/ aids, à luz da Teor ia de Enfer m agem do Déficit de Aut ocuidado de Or em . Ut ilizou- se a m odalidade conv er gent e-assist encial e o Processo de Enferm agem de Aut ocuidado. Foram t reze suj eit os, at endidos num a organização não- governam ent al, no m unicípio de Fort aleza/ CE. Ut ilizou- se t écnicas de ent revist a, exam e físico, observação e o registro de inform ações, com um instrum ento estruturado, abordando os requisitos de autocuidado universal, os relat ivos ao desenvolvim ent o e aqueles de alt erações de saúde. Os déficit s de aut ocuidado corresponderam a dezenove diagnóst icos de enferm agem , dez dos quais nos requisit os de aut ocuidado universal; cinco nos requisit os de desenvolvim ent o e quat ro nos relacionados ao desvio de saúde. No planej am ent o da assist ência, as m et as e os obj et ivos priorizaram ações de apoio- educação com vist as ao engaj am ent o do port ador do HI V/ aids no aut ocuidado.
DESCRI TORES: aut ocuidado; síndrom e de im unodeficiência adquirida; HI V; enferm agem
1 Paper Extracted from the Doctoral Dissertation; 2 Faculty, State University Vale do Aracaj ú and University of Fortaleza, e- m ail: j oselanyafio@uol.com .br; 3 Faculty, School of Pharm acy, Dentistry and Nursing, Federal University of Ceará
I NTRODUCTI ON
A
ids is a pandem ic disease. I n Brazil, unt il March 2002, 257,780 cases of t he disease had been f o u n d . I n t h e st at e o f Cear á, 4 , 1 9 6 cases w er e r egist er ed bet w een 1 9 8 0 an d 2 0 0 2( 1 ). A ser ies of fact ors affect s t he disease’s m orbidit y and m ort alit y profile, including access to inform ation, to opportunistic disease prevent ion m eans, lab t est s, ant iret rovirals, qualit y care, t reat m ent adherence, early diagnosis of infect ions and appropriat e t herapeut ic m easures.More than 20 years after its discovery, there are st ill gaps in care for HI V/ aids pat ient s, m ainly in term s of how people live with the disease, with a view t o a t t e n d i n g t o t h e i r p sy ch o so ci a l n e e d s a n d encouraging aut onom y skills for self- care.
Com m it t ed t o d eliv er in g car e t o HI V/ aid s pat ient s, nurses can work t o im prove t heir qualit y of life through nursing consultations and are responsible f o r p r e p a r i n g t h e m f o r se l f - ca r e . Th i s k i n d o f consult at ion is an ex clusiv e act iv it y of nur ses w ho, using t heir pr ofessional aut onom y, dev elop a car e m odel t o at t en d t o t h eir clien t s’ h ealt h n eeds, as established by Law No 7.498/ 86, regulated by Decree No 94.406/ 87( 2).
Orem ’s general theory was developed in three related parts: Self- Care, Self- Care Deficit and Nursing Sy st em s.
The Self- Care Theory includes care, self-car e capabilit y and t her apeut ic self- self-car e dem ands, as well as self- care requisit es. Self- care ( SC) is t he p r act i ce o f act i v i t i es i n i t i at ed an d p er f o r m ed b y individuals, on their own behalf, to m aintain life, health and well- being.
Self- car e capabilit y is t he abilit y possessed by individuals, it is what m akes t hem perform self-care. This ability is conditioned to internal and external factors, such as age, gender, health state, sociocultural fact or s, life st andar d, r esour ce availabilit y, am ong ot hers( 3).
Therapeutic self- care dem ands include the set of SC act ion s dev eloped ov er a per iod of t im e t o co m p l y w i t h se l f - ca r e r e q u i si t e s, w h i ch a r e : 1 . u n iv er sal; 2 . dev elopm en t al; 3 . h ealt h dev iat ion s. Wh ile u n iv er sal r equ isit es ar e associat ed w it h lif e pr ocesses an d m ain t ain in g t h e in t egr it y of h u m an st r uct ur e and funct ioning, dev elopm ent al r equisit es derive from som e natural condition in the life cycle or are associated with som e event, and health- deviation requisit es are indicat ed in disease condit ions( 3).
The Self- Care Deficit Theory is acknowledged as t h e ex plan at or y descr ipt ion of t h e m ean in g of nursing and what nursing does. Fundam ental concepts of t h is t h eor y in clu d e: self - car e ag en t , self - car e requisit e and self- care deficit( 3).
The self- care deficit is t he focus of nursing activities, as nurses have the knowledge, discernm ent an d ab ilit y t o k n ow w h at ev en t s, con d it ion s an d cir cu m st an ces ch ar act er ize p eop le in h ealt h car e situations, as well as to identify the inabilities hum an beings are subj ect t o( 3). Nurses’ funct ion is t o act in t he offering of nursing care. For t his purpose, t hey adopt help m et hods t hat are direct ed by: act ing or doing for ot hers; guiding ot hers; support ing ot hers; st im ulat ing an envir onm ent t hat pr om ot es per sonal d e v e l o p m e n t i n t e r m s o f b e co m i n g ca p a b l e o f attending to current or future dem ands for action with a v i e w t o h e l p i n g i n d i v i d u a l s t o t a k e ca r e o f t h e m se l v e s, f o cu si n g t h e i r a ct i o n s o n se l f - ca r e requirem ent s or requisit es( 3).
While Nursing System s Theory establishes the st r uct ur e and cont ent s of nur sing pr act ice, nur sing system s represent the orders of nurses’ and patients’ r oles an d su bsequ en t adj u st m en t s in t h ese r oles. Three nursing system s exist, based on self- care needs and on individuals’ capacity to take care of them selves: t h e com p en sat or y sy st em , w h en t h e in d iv id u al is incapable of involving in self- care actions; the partially com pensat ory syst em , when t he individuals’ act ions are lim it ed and, consequent ly, nurses and individuals play the m ain role in care actions; and the educative-d ev elop m en t sy st em , in w h ich t h e in educative-d iv ieducative-d u al can per for m and should lear n how t o per for m self- car e act ions( 3).
Self- care should be one of the goals of nursing care, as it can st im ulat e pat ient s’ act ive part icipat ion in their treatm ent, by sharing responsibilities for care im plem ent at ion and r esult s w it h t he nur se. I n t his respect, we found various nursing studies that applied Or em ’s Sel f - Car e Th eo r y t o ep i l ep sy p at i en t s( 4 ); diabet ic client s( 5); pr egnant adolescent s( 6); pat ient s af t er b on e m ar r ow t r an sp lan t at ion( 7 ). How ev er, a search in t he virt ual healt h library of Birem e, using Lilacs and Medline, did not r ev eal any st udies t hat applied Orem ’s Theory t o HI V/ aids pat ient s.
MATERI AL AND METHOD
We used a conver gent - car e m et hodological r esear ch design, w hich m aint ains a nar r ow r elat ion with the social situation throughout the entire process, in or der t o find solut ions t o pr oblem s, accom plish ch an ges an d in t r odu ce in n ov at ion s in t o t h e social sit uat ion( 8). The st udy w as dev eloped in t he Cear á group of t he Nat ional Net work of People Living wit h HI V/ aids ( RNP) . The study population consisted of HI V/ aids pat ient s w ho par t icipat ed in t he Net w or k . The sam ple was chosen from volunteers, according to the f ollow in g in clu sion cr it er ia: con sciou s adu lt s, w it h u n f i n i sh e d p r i m a r y e d u ca t i o n a s t h e m i n i m u m education level and physical and em otional conditions t o part icipat e in t he st udy. Part icipant s were t hirt een HI V/ aids pat ient s.
Dur ing t he nur sing consult at ions, w e used int er v iew s, par t icipant obser v at ion and infor m at ion r eg ist er s. Th e n u r sin g car e m et h od olog y cov er ed phases of the nursing process, which is a set of actions o n w h i ch p r a ct i ce i s b a se d , i t i s a r e g u l a r a n d cont inuous act ion or series of act ions t hat occur or are carried out in a defined way( 3). Based on the m ain concepts of Orem ’s Self- Care Deficit Theory of Nursing, w e adopt ed t he self- car e nur sing pr ocess m odel in t h e f ollow in g p h ases: d iag n osis an d p r escr ip t ion , regulat ion or t reat m ent and cont rol and assessm ent o p e r a t i o n s. Th e d i a g n o si s o p e r a t i o n co v e r s id en t if icat ion d at a; u n iv er sal, d ev elop m en t al an d h ealt h - d ev iat ion r eq u isit es an d , con seq u en t ly, SC deficit s. This phase precedes t he nursing diagnosis.
The diagnosis phase involves a car eful and direct ed research process, including exam inat ion and d e scr i p t i v e a n a l y si s o f p e r so n s’ d a t a a n d t h e conditions and circum stances of their life, in an attem pt t o explain or underst and t he nat ure of t heir exist ing condit ions( 3). This process was carried out based on t h e NANDA Tax on om y( 9 ) (Nor t h Am er ican Nu r sin g Di ag n o si s Asso ci at i o n) . Reg u l at i o n o r t r eat m en t op er at ion s in v olv e t h e p r od u ct ion of t h e n u r sin g system , the help m ethods elaborated to reach nursing goals and obj ect ives for t he pat ient . We considered literature, knowledge in this area and our professional ex per ience t o elabor at e int er v ent ions. Nur sing car e i s i m p l e m e n t e d b y ca r r y i n g o u t e d u ca t i v e -developm ent nursing act ions.
W h a t t h e d a t a co l l e ct i o n i n st r u m e n t i s concerned, it consist ed of: ident ificat ion, cont aining d em og r ap h ic d at a ( ag e, g en d er, ed u cat ion lev el,
occu p at i on an d f am i l y i n com e) ; op en q u est i on s, t hr ough w hich HI V/ aids pat ient s could r epor t t heir feelings about t he disease and t reat m ent , facing and a l l o w i n g f o r t h e i d e n t i f i ca t i o n o f u n i v e r sa l , developm ent and healt h- deviat ion self- care requisit es an d t h e ex ist en ce of self - car e d ef icit s. Af t er t h e inst r um ent had been elabor at ed, it w as t est ed and som e m odificat ions were m ade.
Before the start of data collection, the proj ect was subm itted to and approved by the Research Ethics Com m it t ee of t he Ceará Federal Universit y Hospit al. I nstrum ents were validated before use and all ethical a n d l e g a l r e q u i r e m e n t s w e r e co m p l i e d w i t h , i n accor dance w it h Resolut ion 196/ 96 by t he Br azilian Nat ional Healt h Council( 10).
RESULTS AND DI SCUSSI ON
System izing nursing care from a self- care perspective
I n t he st udy sam ple, t en par t icipant s w er e m en and three wom en. Nine were between 26 and 40 and four between 41 and 55 years old. Education level data per were ranked as: illiterate, unfinished prim ary educat ion, pr im ar y educat ion, unfinished secondar y education, secondary education and higher education. According to this criterion, we found four participants with unfinished prim ary education; two with unfinished secondary educat ion; five w it h secondary educat ion and only one with higher education. Thus, a m aj ority had either unfinished prim ary or unfinished secondary educat ion. Fam ily incom e ranged bet w een 1 and 2 m inim um w ages ( MW) . Only one par t icipant gained m ore t han 2 MW, but sust ained four ot her persons. Wit h r espect t o occupat ion, m ost par t icipant s w er e r et i r ed or on w el f ar e, al t h ou g h si x of t h em st i l l perform ed inform al act ivit ies.
We adapted the universal self- care requisites, st ar t in g f r om t h e f ollow in g b asic n eed s HI V/ aid s p a t i e n t s h a v e i n co m m o n : f e e d i n g ; h y d r a t i o n ; el i m i n at i on an d ex cr et i on ; ox y g en at i on ; b al an ce between activity and relaxation; m aintaining a balance bet w een lon elin ess an d social in t er act ion ; aspect s relat ed wit h hazards t o life and well- being( 3).
nursing orders. Thus, based on t he self- care deficit s m ent ioned by or observed in t he st udy populat ion, a pr oposal w as for m u lat ed, u sed as a par am et er t o organize nursing diagnoses - NANDA’s Taxonom y I I( 9).
Tab le 1 - Dist r ib u t ion of self - car e r eq u isit es an d nursing diagnoses of HI V/ aids pat ient s, according t o sub- r equisit es of univ er sal self- car e. For t aleza- CE, January - Decem ber 2002
e t i s i u q e r e r a c -f l e
S capSaecflti-yc/aarbelitiy O N s i s o n g a i d g n i s r u N n o it a r d y
H 8 Riskfordeifcientlfuidvolume 1 Deifcientlfuidvolume 1 Impariedoralmucous
e n a r b m e m n o it e r c x e d n a n o it a n i m il
E 6 Diarrhea 2 Consitpaiton g n i d e e
F 10 Imbalancednutiriton:lessthan s t n e m e ri u q e r y d o b n o it a n e g y x
O 2 Riskforatleredrespriatory n o it c n u f n o it a x a l e r d n a y ti v it c
A 7 Disturbedsleeppattern n o it c a r e t n i d n a s s e n il e n o
L 5 Riskforloneilness
Prim ary source
Tab le 1 sh ow s t h e d ist r ib u t ion of d ef icit s according t o t he sub- requisit es of universal SC and their respective nursing diagnoses. As to fluid intake, t en par t icipant s suggest inadequat e lev els, r anging from 1.0 to 1.5 liters per day. One patient presented alt erat ions in t he oral m ucosa, due t o forget fulness, lack of will to consum e fluids and m edication therapy. Most par t icipan t s m en t ion ed dif f icu lt ies t o assess t heir fluid int ake and t he urine volum e t hey elim inate daily. We accepted patients’ estim ation about a daily consum pt ion of 1 lit er, 1.5 lit ers and 2 lit ers, while ot hers indicat ed “ lit t le fluid int ake”.
The risk for deficient fluid volum e diagnosis, related to both reduced oral intake and abnorm al fluid loss, appeared as a result of low fluid int ake levels; diarrhea; use of antihypertensive and diuretic therapy and ant iret rovirals. The one HI V/ aids pat ient in t he sa m p l e w h o p r e se n t e d d r y m u co sa d u r i n g t h e obser v at ion r esu lt ed in t h e def icien t f lu id v olu m e diagnosis. We est ablished increased fluid int ake as a g oal, w it h ou t sig n s or sy m p t om s of d eh y d r at ion . Mo r e o v e r, t h e o b j e ct i v e w a s t h e i n d i v i d u a l ’s v er balizat ion of im pr ov ed t hir st and incr eased fluid ingest ion, besides bet t er skin t urgor. The educat ive-d e v e l o p m e n t n u r si n g sy st e m w a s ch o se n t o i m p l e m e n t t h e p l a n n e d ca r e ; su p p o r t m e t h o d s i n cl u d ed or i en t at i on f or g r eat er f l u i d i n t ak e an d consum pt ion of fluid appet izer s ( sw eet s, ice lollies,
cookies) , suggest ion t o consum e sm all quant it ies of w at er fr equent ly, alt er nat ive fluids ( j uice, m ilk , ice cream ) and hydrat ing fruit s.
Th e ev id en ce of x er ost om ia an d ch an g ed sen se of t ast e, d em on st r at ed b y on e p ar t icip an t , pointed towards the nursing diagnosis of im paired oral m ucous m em brane, relat ed t o t he prolonged use of a n i m m u n o su p p r e ssi v e a g e n t . Ca r e p l a n n i n g indicat ed t he goal of decreasing t he collat eral effect s of drugs, with the obj ectives of achieving the patient’s adherence to the practice and clear interest in seeking opt ions t o m it igat e t he collat eral effect s, as well as SC prom otion with a view to better adherence to aids treatm ent. Educative- developm ent was chosen as the n u r si n g sy st e m a n d , a s t h e su p p o r t m e t h o d , orient at ion for t he use of an oral lubricant , such as KY.
I n t he assessm ent of excr et ion/ elim inat ion, eight HI V/ aids patients showed self- care dem ands that w er e ex clu siv ely r elat ed t o in t est in al an d u r in ar y functions. Alterations inherent to intestinal elim ination w e r e d i a r r h e a a n d co n st i p a t i o n . Si x p a t i e n t s m entioned liquid or soft feces. This led to the nursing diagnosis of diarrhea, relat ed t o t he collat eral effect s o f a n t i r e t r o v i r a l a g e n t s. I n ca r e p l a n n i n g , w e est ab l i sh ed con t r ol l i n g d i ar r h ea as t h e g oal an d avoiding dehydration and electrolyte im balance as the o b j ect i v e. Mo r eo v er, w e sel ect ed t h e ed u cat i v e-d ev el o p m en t n u r si n g sy st em a n e-d o r i en t a t i o n t o in cr ease or al in t ak e as t h e su p p or t m et h od . Tw o p a r t i ci p a n t s i n d i ca t e d h a r d o r d r y f e ce s, w i t h defecat ion t wice or t hree t im es per week, leading t o t he nursing diagnosis of const ipat ion, relat ed t o t he collat eral effect s of diuret ics, inappropriat e diet and i n a d e q u a t e f l u i d i n t a k e . I m p r o v i n g i n t e st i n a l elim inat ion pat t er ns w as est ablished as t he goal in nursing care planning, and orient at ions for sufficient fluid intake, at least 2 liters/ day, and a balanced and fiber- rich diet as t he obj ect ive. This includes: bran, cucum ber, cauliflower, lettuce, cabbage and fresh fruit w it h t he peel. Educat iv e- dev elopm ent w as select ed as the nursing system and orientation as the support m et hod.
fluid intake, these signs indicated the nursing diagnosis risk for deficient fluid volum e. I n care planning, t he goal was t o reduce or elim inat e causal fact ors, and the obj ective to provide orientations for the m onitoring of daily int ake/ excret ion. Educat ive- developm ent was used as t he nursing syst em and t he ident ificat ion of dehydrat ion signs as t he support m et hod.
We a sse sse d f o o d i n t a k e b a se d o n p ar t i ci p an t s’ r ep o r t s ab o u t t h ei r eat i n g r o u t i n es ( breakfast , lunch and dinner) . Ten HI V/ aids pat ient s m en t ion ed in adequ at e in t ak e of n u t r ien t s, m ain ly v it am ins. Repor t s on ir r egular eat ing and hav ing a snack to replace regular m eals, as well as com plaints about lack of appet it e and w eight loss ( 20% below i d e a l w e i g h t ) i n d i ca t e d t h e n u r si n g d i a g n o si s im balanced nut r it ion: less t han body r equir em ent s. Anot her aspect of t his diagnosis is t he lack of care wit h feeding, result ing in insufficient nut rient int ake.
I n care planning, we established the goals of weight control and im proved eating habits, as well as the following obj ectives: increased caloric food intake; verifying the patient’s m edication therapy that causes inability to ingest or digest; patient’s clear interest in dev eloping food r eeducat ion; m odify ing alim ent ar y pat t erns; m aint aining a balanced diet wit h a view t o obt aining nut r ient s t hat sufficient nut r ient s for t he p at i en t ’s m et ab o l i c n eed s. We ch o se ed u cat i v e-dev elopm ent as t he nur sing sy st em , suppor t ed by or ient at ion and t eaching t hr ough infor m al dialogue. Pat i en t s w er e o r i en t ed ab o u t t h e i m p o r t an ce o f adequat e eat ing habit s, received opt ions t o est ablish a b alan ced d iet an d w er e st im u lat ed t o d ed icat e im por t an ce an d t im e t o food, av oidin g calor ies t o subst it ut e for basic m eals.
Based on t wo part icipant s’ com plaint s about t iredness, coughing and sinusit is, w e considered an oxygenat ion deficit and t he consequent diagnosis of risk for alt ered respirat ory funct ion. I n t his case, t he goals were to teach patient to prom ote sinus drainage and to exam ine the cause of tiredness and coughing. Th e o b j ect i v e w as t o i m p r o v e f at i g u e an d n asal obstruction by increasing environm ental hum idity and fluid int ak e and by apply ing local heat . Educat iv e-developm ent was adopted as the nursing system , with o r i e n t a t i o n t o u se w a r m m o i st co m p r e sse s a n d increase fluid int ake as support m et hods.
As t o sport s act ivit ies, only four part icipant s pract iced som e kind of sport , such as weight lift ing and walking. One of them played volley on a not very
frequent base, act ually m ore as a recreat ion act ivit y. Ot her part icipant s affirm ed t hat t hey do not pract ice any sport s, despit e considering t his is necessary for healt h.
Wit h respect t o sleep and rest needs, seven HI V/ aids pat ient s evidenced difficult ies t o conciliat e these and com m only used anxyolitics, while two others com plained that they slept too m uch and felt constant fat igue. This point s t ow ar ds t he nur sing diagnosis dist urbed sleep pat t ern. I n view of t he physical and psychological aspect s of t his deficit , we suggest ed a calm environm ent wit hout light s; having a set t im e for waking up, sleeping and relaxing; avoiding food and dr ink s w it h caffeine befor e going t o sleep and d r in k in g ch am om ile t ea or p assion f r u it j u ice; or reading som et hing pleasant and relaxing.
What t he diagnosis of act ivit y int olerance is concerned, which was identified from patients’ reports about fat igue, showing oxygen t ransport at ion syst em problem s due t o anem ia and m edicat ion, increasing act ivit y t olerance was set as t he goal. The obj ect ive w a s f o r HI V/ a i d s p a t i e n t s t o r e p o r t i m p r o v e d i n t o l e r a n ce a n d i n cr e a se d p a r t i ci p a t i o n i n d a i l y act ivit ies. Educat ive- developm ent was chosen as t he nursing syst em , support ed by orient at ions t o reduce act ivit y int olerance.
Another noticeable aspect related to universal self- care requisit es is t he m aint enance of a balance b e t w e e n l o n e l i n e ss a n d so ci a l i n t e r a ct i o n . Fi v e p ar t icip an t s af f ir m ed t h ey w er e lon ely or d id n ot part icipat e in social act ivit ies.
This evidenced t he nursing diagnosis risk for loneliness r elat ed t o aids. The goal in nur sing car e planning was to identify strategies for the socialization of HI V/ aids patients who feel lonely, and the obj ective w a s t o p r o m o t e so ci a l i n t e r a ct i o n . Ed u ca t i v e -developm ent was adopted as the nursing system , with t he following support m et hods: encouraging pat ient s t o t alk ab ou t t h eir f eelin g s of lon elin ess an d t h e r ea so n s w h y t h ey e x i st , b e si d es d i scu ssi n g t h e im port ance of socializat ion.
Table 2 - Dist ribut ion of sub- requisit e prevent ion of hazards to life and well-being in universal self-care of HIV/ aids patients. Fortaleza-CE, January-December 2002
e ti s i u q e r e r a c -fl e
S capSaeclift-yc/aarbeiilty O N s i s o n g a i d g n i s r u N t n e m t n i o p p a c i g o l o m l a h t h p
O 8 Ineffecitveheatlh e c n a n e t n i a m e r a c e y e c i s a B 7 t n e m t n i o p p a l a t n e D 2 g n i k n ir d d i o v A 7 g n i k o m s d i o v A 6 e s r u o c r e t n i l a u x e s d i o v A s m o d n o c t u o h ti w 4 ,t s a e r b ( s m a x e e v it n e v e r P ) r e c n a c e t a t s o r p d n a n o l o
c 10
n o it a z i n u m m I 1
Prim ary source
According t o Table 2, eight HI V/ aids pat ient s needed opht halm ologic appoint m ent s ( i.e. t hey did not at t end regular follow- up) , including one who had never t aken a sight t est , alleging a lack of access t o opht halm ologic ser v ices.
I n the context of prevention in general, these pat ient s were worried about t heir eyes, m ainly about losing t heir sight . This is because t hey k new ot her p a t i e n t s w i t h a h i st o r y o f b l i n d n e ss ca u se d b y opport unist ic infect ions, as eye infect ions are one of the com plications that result from HI V infection. These ca n l e a d t o b l i n d n e ss a n d so m e t i m e s a p p e a r unexpect edly wit hin t he biological evolut ion st age of t he virus inside t he organism .
As to patients’ oral health, two of them did not get regular dental follow- up. However, prom oting oral healt h is essent ial for different reasons, as t here is great er probabilit y of infect ions t hat produce painful situations and difficult eating. Moreover, these infections can be difficult t o t reat , whet her due t o m ore pot ent m icr oor ganism s or low im m unit y. Anot her r elevant aspect is that cavities caused by caries act as a niche for ot her m icroorganism s t hat facilit at e diseases( 11).
Dr in k in g ( 7 ) an d sm ok in g ( 6 ) h abit s w er e com m on am ong t he part icipant s. When asked about condom use during sexual int ercourse, four pat ient s m entioned they did not use this prevention m easure. Alt hough all par t icipant s ack now ledged t he r isk of drinking, sm oking and m aint aining sexual int ercourse wit hout condom , t his knowledge was not enough for t hem t o adopt healt hy habit s, as each pat ient act s a cco r d i n g t o h i s/ h e r b e l i e f s, d e si r e s a n d f e a r s, alt hough inform at ion and risks are universal.
I n short , we perceived t hat healt h behavior was fragile since, although all participants had received or ien t at ion s, m ost of t h em d id n ot ad op t h ealt h p r om ot ion p r act ices on a r eg u lar b asis, su ch as
ophthalm ologic and dental appointm ents; breast, colon and prost at e prevent ion exam s and im m unizat ion.
What im m unizat ion is concer ned, only one p a r t i ci p a n t m e n t i o n e d a se l f - ca r e d e f i ci t . I t i s r ecom m en dable f or HI V/ aids pat ien t s w it h sev er e clinical and/ or laborat ory im m unodeficiency t o avoid v accines w it h liv e or at t enuat ed biological agent s. Th e r e i s n o co n t r a i n d i ca t i o n a g a i n st n o n - l i v i n g im m unogens, alt hough t he cellular and/ or hum or al im m une response is weaker than what is observed in im m unocom pet ent adult s. Hence, it is im por t ant t o con sid er t h e r isk / b en ef it an d t h e ep id em iolog ical cont ext on all occasions( 12).
Par t i ci p an t s’ m en t i o n s ab o u t t h e l ack o f access t o healt h car e and basic ey e car e ser v ices, alcoh ol an d t obacco abu se an d sex u al in t er cou r se without condom led to the identification of the nursing diagnosis ineffect ive healt h m aint enance, relat ed t o the incapacity to identify, control and/ or seek help to m aint ain healt h. Thus, t he goal of care planning was to decrease the SC deficit in order to obtain the highest possible level of health, and the obj ective was for the HI V/ aids pat ien t t o dem on st r at e k n ow ledge abou t t h r ea t s t o t h ei r h ea l t h a n d sel f - ca r e p r o m o t i n g behavior. Educat ive- developm ent was chosen as t he nursing syst em , wit h t he help of orient at ion, support and t eaching t hrough workshops.
Dev elopm ent al self- car e
D e v e l o p m e n t a l SC r e q u i si t e s a r e r e q u i r e m e n t s t h a t o ccu r d u r i n g ce r t a i n h u m a n developm ent phases, derive from a condit ion or are associat ed w it h an ev ent t hat can hav e a negat iv e effect on t he individual( 3).
I n t h i s st u d y, d e f i ci t i n a d a p t i n g t o m odificat ions result ing from aids appears as a sub-r equisit e of SC, based on quest ions about pat ient s’ feelings when they discovered the disease, lost friends, faced financial problem s, as shown in Table 3.
Table 3 - Dist ribut ion of self- care requirem ent s and nursing diagnoses of HI V/ aids pat ient s, according t o d ev elop m en t al self - car e r eq u isit es. For t aleza- CE, January - Decem ber 2002
e ti s i u q e r e r a c -fl e
S capSaeclift-yc/aarbeiilty O N s i s o n g a i d g n i s r u N o t n o it a t p a d A s n o it a c if i d o m S D I A m o rf g n it l u s e r
8 Fear
1 Disturbedbodyimage 1 Lowstiuaitonalsefl-esteem
1
1 Dysfuncitonalgireving 3
1 Ineffecitvecoping
The first m at t er t hat was discussed was t he dat e of diagnosis, t hat is, bet ween 1992 and 1998, w h e n a i d s w a s a sy n o n y m o f st r a n g e n e ss a n d pr ej u dice. An ot h er aspect com m en t ed on w as t h e con d i t i on t h e d i sease w as d i scov er ed i n , m ai n l y m a r k ed b y t h e a p p ea r a n ce o f sy m p t o m s i n t h e pat ient ’s part ner, or t hat person’s deat h, or also by sym pt om s in pat ient s t hem selves, alt hough t hey did n ot im m ediat ely t ak e a con f ir m at ion t est . I n t h is cont ex t , and in v iew of t he obligat ion t o sust ain a h o u se h o l d , f e m a l e p a r t i ci p a n t s g o t e v e n m o r e frightened of death, due to their concern with the future of t heir children, while t he quest ion about t heir own exist ence rem ained in t he background.
I n general, the discovery of aids is a m arking and traum atizing m om ent in the disease. When asked about their feelings when they discovered the disease, HI V/ aids pat ien t s an sw er ed: sadn ess, depr ession , r ev o l t , an g u i sh an d f ear. Th r ee p ar t i ci p an t s f el t indifference and anot her com m ent ed t hat he t hought t hat aids was a disease like any ot her, t hat it was curable. Yet another patient said that, when he found out he was posit ive, he becam e calm and, from t hat point onwards, he st art ed t o drink. Feelings of loss, on t he ot her hand, w er e char act er ized as sadness, depression and anger.
Tw el v e HI V/ a i d s p a t i en t s f a ced f i n a n ci a l difficult ies, m ost of t hem were ret ired or on welfare, although six of them still perform ed inform al activities. Thus, m ost part icipant s depended on welfare, which is not ev en sufficient t o at t end t o basic needs for su r v iv al.
I n t h i s r esp ect , d ev el o p m en t a l sel f - ca r e seem s t o be int er r elat ed, as t he discov er y of aids leads t o r et ir em ent and, consequent ly, t o financial p r ob lem s. Ar t icle 2 0 3 of t h e Fed er al Con st it u t ion guarant ees t hat aids pat ient s who do not pay social welfare cont ribut ions are ent it led t o healt h insurance benefit s, but not all pat ient s can get access t o t his. The num ber of infected and sick people clearly exceeds governm ent al support . Hence, t he cont inuit y of t his care has not been t ot ally solved, while t he epidem ic is g r ow in g an d in cr easin g ly af f ect in g p oor social g r o u p s. Mo r e o v e r, d u e t o b e i n g a ch r o n i c a n d incurable disease, m any people consider deat h as a const ant in pat ient s’ lives.
The diagnosis of fear in eight pat ient s w as based on the feelings of apprehension they m entioned in relat ion t o t he disease, sight loss and deat h. This feeling appeared when t hey discovered t heir disease,
when people t hey loved were about t o die and when som e acquaint ance ex per ienced v isual loss. I t also r esu lt ed f r om in d iv id u als’ p r oj ect ion s ab ou t t h eir sit uat ion as HI V/ aids pat ient s. I n care planning, we su g g est ed t h e g o al o f u si n g ef f ect i v e r eso l u t i o n m echanism s for anxiet y cont rol, aim ed at increasing psy chological and phy siological suppor t . We chose educat ive- developm ent as t he nursing syst em , w it h t h e h elp of su p p or t an d or ien t at ion b y m ean s of inform al dialogue, wit h a view t o providing calm ness and com fort and allowing individuals t o express t heir anxiet ies. Relaxat ion, m usic and conversat ions w it h friends were suggest ed as resolut ion m echanism s.
Th e d ist u r b ed b od y im ag e d iag n osis w as evidenced by pat ient s’ expression of changes in t heir appearance aft er lipody st r ophy, t hat is, changes in body fat distribution, resulting from the prolonged use of antiretrovirals. The m ain com plaint was weight loss in som e body regions, such as arm s, legs, but t ocks and face, while t he abdom en, back and neck st art ed t o accum ulat e fat and affect ed self- est eem , leading t o t h e addit ion al diagn osis of low sit u at ion al self-est eem . The goal of car e planning w as t o im pr ov e pat ient s’ body im age and, consequent ly, t heir self-esteem . The obj ective was to m inim ize the effects of lipody st r ophy. Educat iv e- dev elopm ent w as select ed as t he nursing syst em , wit h t he help of support and orient at ion t o exercise and m aint ain a healt hy diet .
The report about t he deat h of a fellow aids pat ient , accom panied by sadness about t he loss and ineffective behavior in the attem pt to reinvest in love relations, led to the identification of the dysfunctional grieving diagnosis in 11 participants. The goal was to m it igat e dysfunct ional grieving and t he obj ect ive t o m ak e indiv iduals adj ust t hem selv es t o coping w it h t he deat h of loved ones and m ake t hem underst and the im portance of a stable love relation, reestablishing o b j e ct i v e s, se t t i n g g o a l s i n t h e i r l i v e s a n d d e m o n st r a t i n g se l f ca r e a b i l i t y. Th e e d u ca t i v e -developm ent syst em equips nursing act ions t hrough h e l p , su p p o r t a n d o r i e n t a t i o n . At t h i s m o m e n t , t herapeut ic com m unicat ion and act ive list ening were v er y i m p o r t a n t t o r ea ch t h e p r o p o sed g o a l a n d obj ect iv es.
SC deficit relat ed t o aids, and t he obj ect ive was t o achiev e t he indiv idual’s par t icipat ion in t he desir ed healt h behavior, decrease anxiet y when losses occur and expression of self- care pract ices in aids cont rol. Ther efor e, w e select ed t he educat iv e- dev elopm ent n u r sin g sy st em an d t h e f ollow in g h elp m et h od s: orient at ions about drugs, disease, eye problem s and self- exam of t he eyes, t hus st im ulat ing self- care.
Healt h- dev iat ion self- car e
I n t he healt h- dev iat ion self- car e r equisit e, individuals m ust m odify their concept and/ or self-i m a g e a n d a cce p t t h e m se l v e s w h e n t h e y a r e confr ont ed w it h t he condit ion of a par t icular healt h st at e( 3). I n t he st udy sam ple, som e per sons faced d i f f i cu l t i e s t o a ssu m e a n u m b e r o f se l f - ca r e requirem ent s relat ed wit h healt h problem s, whet her in term s of treatm ent and control, including treatm ent adher ence, or in t er m s of t he pr om ot ion of hum an funct ioning and developm ent , which is relat ed t o t he prevent ion and early det ect ion of healt h problem s.
Personal SC needs will vary according to the stage of the disease, as each patient’s conditions are different at the tim e of diagnosis, treatm ent and after v ar ious t r eat m ent phases. These needs also differ due t o t he clinical syndrom e pat ient s experience, as w e l l a s t h e i r e m o t i o n a l r e a ct i o n s a n d p e r so n a l approach m ethods in response to the infection phase.
Tab le 4 - Dist r ib u t ion of self - car e r eq u isit es an d nursing diagnoses of HI V/ aids pat ient s, according t o healt h- dev iat ion self- car e r equisit es. For t aleza- CE, January - Decem ber 2002
e r a c -fl e S
e ti s i u q e r
e r a c -f l e S
y t il i b a / y t i c a p a c
O N
s i s o n g a i d g n i s r u N
l o rt n o c s d i
A 10 Ineffecitvetherapeuitcregimen t
n e m e g a n a m
8 Disturbedsensorypercepiton:visual 4 Acutepain
3
1 Dpreobifcleiemnstkdnuoewtloedagidesrelatedtoeye
Prim ary source
When looking at people w ho live w it h HI V/ aids, it is im possible n ot t o t h in k abou t t h e h u ge challenges they face every day: the am ount of drugs t hey t ak e, t he w ide r ange of collat er al effect s and in t er act ion s, t h eir an x iet y abou t t h e r egu lar it y of t reat m ent and difficult ies t o get access t o essent ial ex am s af f ect t h eir q u alit y of lif e an d r en ew t h e challenge of living wit h aids each day.
When we analyze t he dist ribut ion of healt h-dev iat ion SC sub- r equisit es in t er m s of m edicat ion t r eat m en t , w e f in d self - car e d em an d s r elat ed t o m edication intake, as six participants m entioned they did n ot t ak e t h eir m edicat ion r egu lar ly, m ain ly at weekends, due t o alcohol consum pt ion. One pat ient never took the drugs because of collateral effects and inadequate m edication tim es, while two others did not t ake any m edicat ion prescribed by a physician.
The com plex it y of t he t her apeut ic r egim en and t he collat eral effect s in t hree HI V/ aids pat ient s; i n co r r e ct m e d i ca t i o n i n t a k e o r r e si st a n ce t o m edicat ion, forget t ing t o t ake m edicat ion, consum ing a l co h o l i n si x p a t i e n t s, n o t a t t e n d i n g m e d i ca l appoint m ent s and not t aking cont rol t est s gave rise t o t h e n u r sin g diagn osis of in effect iv e t h er apeu t ic r egim en m anagem ent .
I n car e p l an n i n g , t h e g o al w as p at i en t s’ a d h er en ce t o t h e t h er a p eu t i c r eg i m en , a n d t h e obj ect ive was for pat ient s t o express t heir int ent ion t o pr act ice h ealt h beh av ior s t h at w er e n eeded t o adhere to the m edication, as well as their acceptance of t he t her apeut ic r egim en; t o t ak e t he pr escr ibed m edicat ion sensibly and t o express t heir int ent ion t o pract ice behaviors t hat were healt hy or desirable for aids cont rol; t o show SC capacity, m ainly in realizing regular m edical follow- up and control tests ( viral load and CD4 count ) .
Educat iv e- dev elopm ent w as chosen as t he nursing syst em , wit h t he help of support , t eaching, or ient at ion and adher ence w or k shops. Or ient at ions w ere aim ed at clarifying pat ient s’ doubt s about t he drugs and their collateral effects, while encouragem ent act i o n s w er e ai m ed at st i m u l at i n g t h e g r o u p t o part icipat e in adherence workshops held at t he RNP/ CE.
Th e d i st u r b ed v i su a l sen so r y p er cep t i o n diagnosis was identified when participants carried out a self- ex am of t heir ey es under t he super v ision of t he nurse researcher, and also during opht halm ologic appointm ents. The goal was to help patients to identify e y e p r o b l e m s a n d m i n i m i ze v i su a l d e f i ci t s; t h e obj ect ive was t o enable part icipant s t o perform t he eye self- exam , ident ify problem s and use correct ive m eans. The select ed nursing syst em was educat ive-dev elopm en t , an d h elp m et h ods w er e or ien t at ion , support and t eaching t hrough inform al dialogue and educat ional w or k shops.
their health problem s. Thus, the goal of nursing is to achieve self- care, considered t o be a care perform ed by persons, for them selves, when they reach a stage o f m a t u r i t y t h a t e n a b l e s t h e m t o a cco m p l i sh a p r em ed it at ed , con sciou s, con t r olled an d ef f ect iv e act ion. Thus, healt h can be seen predom inant ly as a consequence of individuals’ own act ions.
Four pat ient s ex per ienced t he diagnosis of acute pain in the eye region. I n this context, the goals was the m inim ize pain, and the obj ective was for the p a t i e n t t o i n d i ca t e d e cr e a se d p a i n . Ed u ca t i v e -developm ent was chosen as t he nursing syst em and r efer r al t o an opht halm ologist as t he help m et hod. For t his purpose, we looked closer int o t he pat ient s’ e x p e r i e n ce o f e y e p a i n , co n si d e r i n g : i n t e n si t y, f r e q u e n cy, si t u a t i o n s t h a t ca n i n t e r f e r e i n t h e a p p e a r a n ce o r i n cr e a se d i n t e n si t y, so t h a t t h i s in t en sit y ev id en ced in cr eased p ain f u l sen sit iv it y, m a i n l y a t n i g h t , w h e n p a t i e n t s w e r e r e a d i n g . Par t icipant s m ent ioned t he use of ey e dr ops. This t ends t o m inim ize pain and dr y ness, w hich is v er y unpleasant . However, eye drops should be used wit h care and only when prescribed by an ophthalm ologist. For t h e deficien t k n ow ledge diagn osis, w e consider ed t he follow ing indicat or s: expr essing lack of k now ledge about ey e pr oblem s due t o aids and difficult ies t o per for m t he ey e self- ex am . The goal w as t o decr ease t h e k n ow ledge def icit an d or ien t pat ien t on h ow t o cor r ect ly per for m t h e ey e self-e x a m ; t o a ch i self-e v self-e t h self-e o b j self-e ct i v self-e , w self-e su g g self-e st self-e d including the eye self- exam in self- care routine. Thus, ed u cat i v e- d ev el o p m en t w as i m p l em en t ed as t h e n u r si n g sy st e m , su p p o r t e d b y o r i e n t a t i o n s a n d t eaching t hrough educat ional workshops, wit h a view to stim ulating participants to perceive the im portance of eye care, t o ident ify problem s, look for solut ions, est ablish lear ning plans, discuss t heir feelings and progressively participate in eye self- exam techniques. I t is t h e f u n ct ion of h ealt h p r of ession als, especially nurses, t o work t owards t he developm ent of strategies that are able to m obilize HI V/ aids patients t o a d o p t a n d m a i n t a i n a h e a l t h y SC b e h a v i o r. Adherence t o t he eye self- exam requires t olerance, efficient com m unicat ion and br oader dissem inat ion. I t is a long- term task, as this is the only way to achieve
sat isf act or y r esu lt s, t h at is, a r edu ced k n ow ledge deficit about eye alt erat ions due t o aids and great er clarificat ions about t he risks of inadequat e behavior. The application of the Nursing Theory allowed u s t o id en t if y self - car e d ef icit s, t ot alin g n in et een n u r si n g d i a g n o se s. Th e e d u ca t i v e - d e v e l o p m e n t sy st em gu ided act ion s in t h e sear ch f or pat ien t s’ aut onom y t o part icipat e act ively in t heir t reat m ent , although som e factors lim ited their adherence to self-care, such as: instability of the disease; low education level; resistance to behavioral changes, such as giving up drinking; and non incorporat ion of t he eye self-exam int o rout ine act ivit ies.
FI NAL CONSI DERATI ONS
I n this study, self- care practice was perceived without ignoring respect for individual choices. Wanting se l f - ca r e i s so m e t h i n g v e r y p a r t i cu l a r. Ev e n participants who were well inform ed about their health state continue adopting lifestyles that affect treatm ent efficiency and efficacy, which are considered relevant point s as self- care deficit s. Therapeut ic dem ands are alm ost alw ay s associat ed w it h b iolog ical asp ect s, alt hough we observed from part icipant s’ t est im onies t hat lifest yle- relat ed issues need t o be syst em at ically addressed in groups of people living wit h HI V.
On t h e w h o l e , w e i d e n t i f i e d 1 9 n u r si n g diagnoses am ong t he par t icipant s: t en in univ er sal SC r equisit es, fiv e in dev elopm ent al SC r equisit es and four in healt h- deviat ion self- care requisit es.
Applying t he Self- Care Theory requires t im e t o display result s, it t akes dedicat ion and pat ience, w h ich ar e essen t ial com p on en t s in t h e f ollow - u p established in Orem ’s Theory, which is the educative-dev elopm ent sy st em .
Ho w e v e r, w e e m p h a si ze t h e n e e d t o im p lem en t sy st em ized n u r sin g car e f or HI V/ aid s p a t i e n t s. I t i s i m p o r t a n t t o u se t h e t h e o r e t i ca l f r am ew o r k o f Or em ’s Sel f - Car e Th eo r y, al l o w i n g individuals to perceive their organic, psycho- affective, social, cu lt u r al an d spir it u al aspect s, an d m ak in g nurses ident ify and invest in t he capabilit y for self-car e.
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