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  Original Article Analysisofthetransitionprocessamongfamilycaregiversinahospitalinthe region of Catalonia in Spain Gerard Mora-López  a, ⁎ , Carme Ferré-Grau, phD, RN  b,1 , Pilar Montesó-Curto, phD, RN  c,2 a  Joan XXIII University Hospital of Tarragona, Department of Nursing, Rovira i Virgili University, 13 – 15, Remolins Avenue, Tortosa, 43500, Tarragona, Spain b Department of Nursing, University Rovira i Virgili (Tarragona), 34 Catalunya Avenue, Tarragona, 43002, Tarragona, Spain c Department of Nursing, University Rovira i Virgili (Tarragona), 13 – 15, Remolins Avenue, Tortosa 43500, Tarragona, Spain a b s t r a c ta r t i c l e i n f o  Article history: Received 1 July 2014Revised 5 June 2015Accepted 8 June 2015Available online xxxx Keywords: CaregiverChronic diseaseHospital administrationQualitative researchNursing care Purpose: Theaimofthisstudyistoexploreandunderstandtheexperienceoftheadaptationprocessamongfam-ily caregivers in hospitals, who have an active presence in hospital and are essential in ensuring proper patientcare. Methods: Aqualitativephenomenologicalapproach wasusedtogainadeeperunderstanding ofcaregivers'livedexperiences. Data were collectedusingin-depth interviews to exploresix caregivers'experiencesof hospitaliza-tion. Results:  The caregivers' accounts highlight the different determining factors in the transition process of a chron-ically ill patient's family caregiver during the patient's time in hospital. The most important themes emergingfromtheanalysisweretheimportanceofculturalbeliefsandattitudes,meaningofthesituation,caregiver'strain-ing and knowledge, socio-economic status and the hospital as a community. These categories can be analyzedusing transitions theory. Conclusions:  The most important conclusion is that the hospital in this study was not designed to accommodatecaregivers,andthemechanismsusedtomeetcaregivers'needsendangertheirprivacy,health,andcoexistenceinthe hospital's rooms. Transitions theory provides a holistic understanding of the experience of the familycaregiver.© 2015 Elsevier Inc. All rights reserved. 1. Introduction ThestudywascarriedoutinCatalonia(Spain),wheretheincreaseinlife expectancy at birth and the decline of the birth rate have led to anageing population and increased prevalence of chronic diseases. In thisregion, most care required by dependent individuals is the responsibil-ity of the main caregiver, who is usually a relative of the person receiv-ing care, and whose pro 󿬁 le is characterized by a lack of any speci 󿬁 ctraining for the tasks of caring, no  󿬁 nancial remuneration for thiswork,ahighlevelofcommitmenttowardsthework,andtheiremotion-al involvement and provision of care 24 hours a day, 365 days a year.Care for the person who has a chronic disease is administered athome. However, when the patient's situation changes, families oftenask their referral hospital to admit the patient. The patient is accompa-niedbyamaincaregiver/familymember,whospends24hoursadayinthe hospital (Ferre-Grau, Rodero Sanchez, Vives Relats, & Cid Buera,2008).Hospital admission is the gateway into a world of conventions andsymbols,colors,uniforms,andlinguisticcodesthatareoftennotunder-stood by patients or their caregivers. Both feel disoriented, as well asexperiencing a situation of dependence and inferiority. Hospitals inSpainhaveneverbeendesignedtoaccommodatefamilycaregivers.De-spite the need for them when accompanying patients, they are a sec-ondary concern and suffer from low levels of visibility.ThisresearchstudyreceivedtheINVESTIFawardfromtheTarragonaOf  󿬁 cial College of Nursing, and the Cinca y Pique prize from Rovira iVirgili University. 2. Literature review  In the literature review, we found many references to family care-givers in the home environment, (Crespo López, 2007; Zarit & Bach-Peterson, 1980) but very few referring to hospitals, although interest-ingly, research in this  󿬁 eld has increased considerably in recent years(Bastani, Golaghaie, Farahani, & Rafeie, 2013; Lowson et al., 2013; Rob-inson, Gott, & Ingleton, 2014). One of the studies carried out in Spain(CelmaVicente,2001)highlightsthelackofcareprovidedforcaregiversin hospitals. This study described the various pro 󿬁 les of hospital com-panionsandsuggestedamodelforcontinuoustrainingforprofessionalsaimed atde 󿬁 ninga conceptualframeworkand aworkingmethodology Applied Nursing Research 29 (2016) 242 – 247 ⁎  Corresponding author. Tel.: +34 646433434. E-mail addresses: (G. Mora-López), Ferré-Grau), (P. Montesó-Curto). 1 Tel.: +34 977 29 94 41. 2 Tel.: +34 977 464 030.© 2015 Elsevier Inc. All rights reserved. Contents lists available at ScienceDirect Applied Nursing Research  journal homepage:  for nursing to facilitate comprehensive care for patients and theirfamilies.Toascertainthequalityoflifeofcompanionsofpatientshospitalizedon a medium- and long-term basis, Flores et al. (2002) conducted aqualitative study using semi-structured interviews of   󿬁 fty-six familycaregivers. The study showed that the companions were not comfort-able in the hospitaldue to limited space, lack of privacy, and poor qual-ity of sleep. In psychosocial terms, most caregivers presented anxiety,fatigue, and strong feelings of loneliness or insecurity (Bektas, Cebeci,Karazeybek, Sucu, & Gursoy, 2012; Chiu et al., 2014; Nakagami et al.,1999).According to Flores et al. (2002), the most important social variablewas economic impact, since some of the family caregivers had had togive up their jobs due to the patient's hospitalization. The researchersnotedalackofprotocolsrecognizingtheroleofthecaregiver.Notewor-thy recent researchincludes a study by Quero Rufían(2003,2007). Themain conclusions of this study were that family caregivers have an ac-tivepresenceinhospitalandareessentialtoensureproperpatientcare.A transition is the passage between two stable periods of time(Meleis, 2010). During this period, the individual moves from onephase, situation or life condition to another. Therefore, transitions areprocesses that occur over time and involve reorganization, with a newsense of purpose. Conditions are the circumstances that in 󿬂 uence howanindividualmovestowardsatransition.Thesemayfacilitateorhinderprogressinachievingahealthytransition.Theseconditionsincludeper-sonal,community,andsocialfactors.Personalfactorsencompasscultur-al signi 󿬁 cance, beliefs and attitudes, socio-economic status, educationand knowledge, while community conditions refer to community re-sources, and social factors to social relationships.Afaf Ibrahim Meleis' transitions theory (Meleis, 2010; ZagonelSanson, 1999) was the framework of reference used in the study toidentify factors that can facilitate or hinder the transition process of afamily caregiver of a chronically ill patient in the hospitalenvironment. 3. Objectives Thisarticleaimstoanalyzethefeelings,activities,andperceptionsof familycaregiversofdependentsinahospitalandtodescribethefactorsin 󿬂 uencingtheadaptationprocessamongfamilycaregiversinhospitals,according to Meleis' transitions theory (Meleis, 2010).Understanding the experience of caregivers in the hospital environ-ment is an important factor in improving aspects relating to the com-prehensive care of dependent patients and their families. 4. Methods 4.1. Research design In accordance with the objectives of the study, a qualitative phe-nomenological approach was used, as this is considered highlyappropriate for examining the qualities of human experience(Wimpenny, 2000).Giorgi (2006) argues that the participant is the expert on the phe-nomenonunderinvestigation;theresearchermayknowabouttheoriesand the literature, but does not know the relevant dimensions of thespeci 󿬁 c experience being reported by a participant. Indeed, phenome-nological research enables the researcher to enter the participant's lifeworld to gain a deeper understanding of his or her experience(Balls, 2009).Symbolic interaction is a hermeneutic process — dialectic since thetimeofinterpretationandcomparison.Bycontrast,phenomenologyde-scribes the experience as it occurs, devoid of interpretations. In thisstudy, phenomenology is used to capture and understand symbols andmeanings of family caregivers in a hospital in the cultural environmentof Catalonia, Spain. 4.2. Participants This study included a sample of six family caregivers.The pro 󿬁 lesof thecaregiverswereobtainedthroughinterviewswithprofessionals,su-pervisors, and nurses in the inpatient hospital units at the Hospital deTortosaVerge dela Cinta (Tortosa), and from aliterature search. Partic-ipants were recruited between November 2011 and May 2012 in thehospital's internal medicine, surgery, and urology units. The criteriafor inclusion were: family caregivers over 18 years old of dependents,with at least 1 year's evolution of dependence. Based on these criteria, 󿬁 ve female participants and one male were selected, who had the fol-lowing characteristics: ã  A 78-year-old woman, retired, who has cared for her sister with ahistory of chronic obstructive pulmonary disease (COPD) for thelast10years,admittedforpneumoniaandwhohadbeenhospital-ized for 3 days. (C1) ã  A 48-year-old woman on leave of absence from work to care forher mother suffering from Alzheimer's disease and leukemia, ad-mitted 20 days ago due to general malaise. (C2) ã  An 83-year-old man, retired, who cares for his wife with a historyof osteoarthritis, admitted to hospital 25 days ago with a fractureof the femur. (C3) ã  A77-year-oldwoman,retired,whocaresforherhusbandwhosuf-fers from COPD, who was admitted to hospital 3½ months ago forseptic shock and undergoing a process of rehabilitation. (C4) ã  A 63-year-old woman, housewife, accompanying her husbandwith a history of Parkinson's disease and heart failure, admittedto hospital 19 days ago due to hematuria. (C5) ã  A 73-year-old woman, retired, who cares for her husband with ahistory of Alzheimer's disease who was admitted to hospital8 days ago for a surgical procedure. (C6)We stopped the interview process followingthe principle of satura-tion of information. We are aware that carer types are very homoge-neous and that future studies should involve carers with differentfeatures. 5. Data collection We used an in-depth semi-structured interview with each partici-pant lasting approximately 1 hour. Table 1 contains sample questionsused in thesemi-structured interview. Theseinterviews were audiore-cordedandtranscribedinfullbytheauthorsofthisarticle.Dataanalysiswas undertaken by means of in-depth reading of the interviews. Thedata analysis was carried out manually, line by line, sentence by sen-tence, using Glaser and Strauss' constant comparative method as pro-posed by Medina Moya (2005).Toprovidereliabledataandtriangulatetheinformation,resultshavebeenreviewedbythreeexpertinvestigatorsinqualitativemethodologyand nursing models.  Table 1 Sample questions.Illness and hospital admissionCan you explain to me the illness of your family member?How did you feel when you came to the hospital?Life in hospitalWhat tasks do you do to take care of your family member?How do you feel about the staff?For those who prefer to be served?Do you know who the nurse is and who is the nurse assistant?Where do you eat in the hospital?BeliefsDo you believe in God? Do you think that God helps you?243 G. Mora-López et al. / Applied Nursing Research 29 (2016) 242 –  247   5.1. Ethical considerations The ethical aspects of voluntariness, anonymity, and con 󿬁 dentialitywere taken into account. Participants' informed consent was requestedin writing, and the study was approved by the Scienti 󿬁 c Of  󿬁 ce of theCatalan Health Institute in the Terres de l'Ebre Region and the MedicalOf  󿬁 ce of Verge de la Cinta Hospital, Tortosa. 6. Results Most of the participants were female, with a low socio-economicand educational level, caring for close relatives during their hospitaladmission.The interviews were translated literally from Catalan (the srcinallanguageofsomeaccounts)inordertofacilitateunderstanding.Catego-riesthat emerged fromthe analysis were: culturalbeliefsand attitudes,religious beliefs, meaning of   ‘ take care ’ , training and knowledge, socio-economic status, community and society.The caregivers' accounts highlight the different determining factorsin the transition process of a chronically ill patient's family caregiverduring the patient's time in hospital. 6.1. Cultural beliefs and attitudes Among the chronically ill, the onset of the disease and its exacerba-tionor deteriorationaffectsnotonlytheindividualbut alsotheirfamilyunit, and thefamily caregiverinparticular, whoserelationshipwiththesickpersonmeansthattheywillexperienceatransitionbetweenhealthand sickness. The way this impacts on the primary caregiver is a strongdeterminant of the transition: “  Look,I've  󿬁  gureditoutalready,I   󿬁  gureditoutonthe  󿬁 rstday,becauseI saw what the situation was, I didn't need to them to tell me. What thesituationwas,IsaidtrustinGod,letitbewhatGodwants,andletusget out of this.   [(C4)]Some of the accounts emphasize the family caregiver's fear of badnews, such as death: “  Talkingtothedoctor.(Crying)Ican'tdoit,Ican't,it'sbeyondme.WhenIseehim,Idon'tknow,Ihavetobebrave,Ihavetobestrong,becauseof whatthey might say to me, and ofcourseI knowwhat theyhave to sayto me isn't good and  …  I'm very cowardly in that respect, I can't do it. ”  [(C2)] 6.2. Religious beliefs Inthestudy,religiousbeliefsareasourceofhope andthecaregiversprayfortheirhospitalizedrelatives.TheybelievethatGodhelpsthemtoovercome situations and, as such, they act as facilitators of thetransition: IamaChurchperson,Idon'tgomuchbutmyreligionisinsideme.Our God, there is a God, for me there is a God, I pray to him and ask him for my husband.   [(C4)] 6.3. Meaning of   ‘  take care ’  InSpain,caringforone'sparentsisseenasamoralobligationand,assuch,itisadutyinherenttobeingadaughter.Theculturalessenceofthetaskofcaringispredominantlyfemaleand,thus,formspartofwomen'scollective unconscious: “  I do it all myself, being a mother, it comes naturally and I do it all as if  you were at home, I don't know, everything is important for me …  Be-causethat'sthewayIam,andIlikeit,whenI'mwiththemIlikeit,help-ing, so that they don't suffer.   [(C2)]The caregivers' accounts show that family is atthe heart of care, be-cause when they are asked who will provide care, no one answers thatthehospitalwill.AccordingtoQueroRufían(2007),hospitalisnowper-ceivedasbeingpartof  ‘ thehealingsphere ’ andnot ‘ thecaringsphere ’ .Itis necessary to plan and manage  ‘ care ’  in the hospital environment sothat nurses lead and manage the entire care process. As mentionedabove, care is relegated to the family. 6.4. Training and knowledge Family caregivers know about the illness of the person they are car-ing for. They consider themselves an integral part of their care and areaware of this situation: “  Welivetogether athome,weareontwo  󿬂 oors, oneon topoftheother and I'm always there with them (the children). But the thing is, she has Alzheimer's and that means that I've had to keep a closer eye on her. ”  [(C2)]The relative's hospitalization entails a change in the daily routine of the caregiver, who has to adapt.At 󿬁 rst,thefamilycaregiverbeginstheprocessofaccompanyingthepatientalone,anddecidestoaskforhelplater,asaresultoffatigue. Itisimportantthatnursesareabletoidentifythesignsandsymptomsoffa-tigue in the caregiver at their onset, and can facilitate their request forhelp to prevent discomfort and reduce their suffering. 6.5. Socio-economic status Some caregivers have to give up their job in order to be able to carefor their relative, and hospitalization is the trigger for this decision: “   At   󿬁 rstI hadtogiveupwork,IaskedforaleaveofabsenceandIhadto give it up, because I think she comes  󿬁 rst now. I don't know if I did theright thing or not, the way things are, I don't know. But   󿬁 rst I left my job and now I am one hundred percent here just for her. ”  [(C1)]It is necessary to be aware of the economic effort made by familycaregivers since, as mentioned above, some people of working agehavetogiveuptheirjobsasaresultofthehospitalizationprocess,lead-ing to substantial changes in household incomes. We also observed agroup of pensioners receiving minimum pensions, who had to coverthe costs of caring. Caregivers' 󿬁 nancial problems can be a determiningfactor in transitions. 6.6. Community In this study, the hospital is considered as the community wherefamily caregivers of the patients admitted spend most of their time, re-lating and living with other caregivers and interacting with healthcareprofessionals.As the presence of family caregivers duringthehospitali-zation process is permanent, they often go unnoticed.Relationship with professionals: According to the study by QueroRufían(2007),therelationshipbetweenfamilycaregiversandthemed-icalinstitutionisbased ontherelationshipwiththeindividualstherein,andtherelationshipwithprofessionalsisadeterminantfactorinthisre-spect. In the present study, the concept of   ‘ a good relationship ’  is basedon aspects such as closeness, emotional care and the speed with whichdemands are met: 244  G. Mora-López et al. / Applied Nursing Research 29 (2016) 242 –  247   “  When I called, they all came at once. They are all very caring. ”  [(C6).]The length of time spent in hospital is a signi 󿬁 cant factor in the es-tablishment of relationships between caregivers and professionals: “  Obviously, they know you better after two or three days. ”  [(C3).] “  Onthe  󿬁 rstdaytheyweremoredistant,butnowtheyknowyoubetter,they are wonderful. ”  [(C4).]Another aspect worthy of mention is that the characteristics of theunittowhichthepatientisadmitteddeterminewhetherthecaregiversperceive the level of care as good or bad. The relatives highlight differ-ences between units in terms of treatment: “  The other nurses, the ones upstairs, are sillier. ”  [(C5)]And this difference is passed on to other caregivers: “…  I told another caregiver - you'll be taken care of very well here - you've been put onto a good ward. ”  [(C6)]Anin-depthanalysisoftheaccountsshowsnoclearsystemforiden-tifying the professional role in the hospital studied, as caregivers wereunable to distinguish between the various healthcare professionalsworking there. Therefore, they attributed responsibility for more tech-nical tasks to the nurse and activities relatedto basicneedsto thenurs-ing assistant: “  Well, I don't know which ones are assistants, they come here andthey're very good. ”  [(C1)] “   As faras I can see, the one that prepares the medication or working onthe computer is the registered nurse on the ward, and the ones that come to the rooms, give things out or clean are the other ones. ”  [(C5)]The accountsshow thata lack of information, corporatism, and hos-pital rules isolates the family caregivers and often makes them feel re-moved from caring for their relative: “  When the doctors come in you're not allowed to stay, and if you're not careful the doctor leaves and you don't know what's happening.   [(C3)] “  Every doctor tells you something different. One says:  ‘  today we'll dothis ’  andtheotheronesays: ‘  hehastobecuredproperlytodoit  ’  sotheyshould at least agree. ”  [(C5)]Verystronglinksareestablishedbetweendifferentcaregiversinthehospital, and they are a great source of support: “  Yesterday a new woman came and I took her to the cafeteria, and wewere there for a while and the lady told me about her life, and I gaveher some support and some friendship. ”  [(C5)]Family caregivers spend long hours in the hospital with their lovedones, and have to meet their own needs in an environment that hasnot been designed to accommodate them: “  I had a shower in the room for three days, but we were alone, weweren't sharing it with anybody. Butyoutell me howyou manage withmen here, there's no latch or anything. ”  [(C4)] “  I gotothe toiletsinthe corridor, I close the door,I take off my clothes, I  get changed and that's it. ”  [(C2)]Finally, the tasks performed by caregivers are important in terms of both quantity and quality, and imagining the hospital without them isinconceivable: “  Ibringhimhisluncheveryday,becausehedoesn'twanttheonehere,I bring him up some milk, I made him some broth yesterday. ”  [(C4)] “  If she asks for the commode pan I sort it out for her. ”  [(C3)]While the nurses go from room to room, family caregivers, almostexclusively, stay with their relative, perform permanent observationand provide constant companionship. In hospitals in Spain, the needsof the chronically ill with regard to comfort cannot be adequately ad-dressed without the role of the caregiver. However, and paradoxically,caregivers are invisible to most health professionals. 6.7. Society Society is de 󿬁 ned in this studyasthe caregivers'social environmentoutsidethehospital,thetowninwhichtheylive,thesocialrelationshipstheyhaveestablishedthere,andtheinstitutionalandsocialsupportthatcaregivers receive.The  󿬁 rst measure in nursing therapy, from the standpoint of transi-tions theory, is to create an individual pro 󿬁 le for the preparation of theindividual,therebyenablingresearcherstoidentifydifferentpatternsof experience of the transition. Using this knowledge, after the interviewswere analyzed, the following illustration was created to provide an un-derstandingofhowtransitionconditionsaffecttheprimarycaregiverinhospitals.AlthougheachconditionshowninFig.1hasalreadybeendiscussed,it should be noted that these can facilitate or hinder the familycaregiver's healthy transition, with adaptation to the situation and therearrangement of their roles, beliefs, and rede 󿬁 nition of newrelationships.The nurse's role is to assess the individual and identify their condi-tions in order to be able to support and educate the family caregiverandcreateoptimalconditionsinthepreparationforthetransition.Con-ditions in transitions do not follow a linear pattern.Rather, they are, i.e., they may in 󿬂 uence each other, as Fig. 1 shows. 7. Discussion No international study of family caregivers in hospital was found.Regardingnational studies(in Spain), there are few. Only 13referenceswerefound.Allagreethatfamilycaregiversinthehospitalenvironmentare essential to maintain patients' daily life activities. They perform ac-tivities such as monitoring, support, nutrition, and hygiene.Hospitalswereconceivedtocareforthesick,butduringtheirdevel-opment and modernization, they have not been designed to considerand care for people as biopsychosocial individuals who are membersof a family system. Caregivers are seen as alien to patients' care. Celma(2001) observed a lack of care for caregivers in hospitals. Flores et al.(2002) described the discomfort among caregivers in hospitals due to 245 G. Mora-López et al. / Applied Nursing Research 29 (2016) 242 –  247 
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