Exploring the caregiver experience: caring for a deinstitutionalised individual with schizophrenia in the Western Cape, South Africa

Rall, Divan (2017-04)

Thesis (MA)--Stellenbosch University, 2016.

Thesis

ENGLISH ABSTRACT: Schizophrenia is a chronic and debilitating mental disorder characterised by a diverse range of symptoms that may take their toll on a person’s biological, psychological, and social areas of functioning. Today, it is undeniable that knowledge about schizophrenia, and its repercussions on the person diagnosed with it, has evolved immensely since the Kraepelinian era (Davidson, 2003). However, the effects of the disorder on others, who do not have the diagnosis, may not have been as vastly explored. We need to know more about the impact of the disorder on a range of people, be they healthcare clinicians, family members, or friends who have daily encounters with the person with schizophrenia. This qualitative study investigated the subjective experiences of caregivers of deinstitutionalised individuals with schizophrenia. It aimed at exploring participants’ experiences of burden and coping while caring for a loved one with schizophrenia. Thirteen caregivers participated in individual semi-structured interviews and Thematic Analysis of their narratives produced 29 themes that describe caregivers’ experiences. Caregivers experienced burdens in the following domains: 1) day-to-day circumstantial challenges, 2) new experiences witnessed, 3) the effect on the caregiver's social environment, 4) emotional impact on caregiver, 5) patient dependency, 6) living with a sense of obligation to care, 7) new physical activities, 8) physical strain, 9) disruption, and 10) difficulties at healthcare services. Caregivers utilised the following coping strategies: 1) having a life partner, 2) investing in their own needs, 3) religion, 4) making sense of schizophrenia, 5) fostering the positives, 6) interactional tactics, 7) being prepared, 8) cognitive-emotional processes, 9) professional healthcare services, 10) lay-care services, 11) police services, 12) financial support, and 13) social support. Additionally, this study reports caregivers’ perception of the patient at home. The findings are discussed by drawing on local and international literature in the schizophrenia-caregiving domain. Caregives’ reports of caregiver burden are discussed in three domains – 1) contextual challenges (e.g., age and gender), 2) experiences of objective burden (e.g., dependency and disruption), and 3) experiences of subjective burden (e.g., emotional impact on caregiver). Caregivers’ coping strategies are further discussed in three domains – 1) qualities of the caregiver (e.g., religion), 2) emotional-focused coping strategies (e.g., positive thinking), and 3) problem-focused coping strategies (e.g., being vigilant, living in the moment and anticipating patient’s needs in advance). Lastly, the strengths and limitations of this study, and recommendations for future research are discussed.

AFRIKAANS OPSOMMING: Skisofrenie is ‘n kroniese en verlammende geestesversteuring wat gekenmerk word deur ‘n verskeidenheid van simptome, wat hul tol kan eis op ‘n persoon se biologiese, sielkundige en sosiale funksionering. Vandag is dit onbetwisbaar, dat kennis oor skisofrenie en die gevolge daarvan op die persoon wat daarmee gediagnoseer is, geweldig uitgebrei het sedert die Kraepeliese era (Davidson, 2003). Tog, is die effek van die siekte op ander, wat nie die diagnose het nie, nie so wyd bestudeer nie. Daar is ‘n behoefte na kennis oor die impak wat die geestesversteuring op ander mense wat daaglikse ontmoetings met die pasient het, sou kon hê; mag hulle kliniese gesondheids werkers, familie lede, of vriende van die persoon met skisofrenie wees. Die kwalitatiewe studie het die subjektiewe ervarings van versorgers van buite-pasiente met skisofrenie ondersoek. Die doel van die studie was om deelnemers se ervarings van las en die hantering van hulle omstandighede tydens die versorging van ‘n geliefde met skisofrenie te ondersoek. Dertien versorgers het aan individuele semigestruktureerde onderhoude deelgeneem, en Tematiese Analiese van hul stories het 29 temas gelewer wat hul ervarings as versorgers beskryf. Versorgers het las in die volgende areas ervaar: 1) daaglikse omstandigheids struikelblokke, 2) die ervaring nuwe ervarings, 3) die effek op die versorger se sosiale omtrek, 4) emosionele impak op die versorger, 5) pasiënt afhanklikheid, 6) die leef met die gevoel van verpligtheid om te sorg, 7) nuwe fisiese aktiwiteite, 8) fisiese spanning, 9) ontwrigting, 10) struikelblokke by gesondheidsdienste. Versorgers het gebruik gemaak van die volgende hanterings meganismes: 1) om ‘n lewensmaat te hê, 2) deur in hul eie behoeftes te belê, 3) geloof, 4) sin maak van skisofrenie, 5) die positiewe te koester, 6) interaksie taktiek, 7) wees voorbereid, 8) kognitieweemosionele prosesse, 9) professionele gesondheidsdienste, 10) leke-versorgers, 11) polisiedienste, 12) finansiële ondersteuning, en 13) sosiale ondersteuning. Verder het hierdie studie versorgers se persepsie van die pasiënt wat by die huis woon gerapporteer. Die bevindinge word bespreek deur gebruik te maak van plaaslike en internasionale literatuur in die skisofrenie-versorgings arena. Versorgers se getuies van versorgerlas word bespreek in drie domeine – 1) omstandigheids struikelblokke (bv. ouderdom en geslag), 2) ervarings van objektiewe las (bv. afhanklikheid en ontwrigting), en 3) ervarings van subjektiewe las (bv. emosionele impak op versorger). Versorgers se hanteringsmeganismes word verder bespreek in drie domeine – 1) eienskappe van die versorger (bv. geloof), 2) emosie-gefokusde hanteringsmeganismes (bv. positiewe denke), en 3) problem-gefokusde hanteringsmeganismes (bv. waaksaamheid, leef in die oomblik en om die pasient se behoeftes vooraf te verwag). Laastens word die voordele en beperkings van die studie, asook aanbevelings vir toekomstige navorsing bespreek.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/101301
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