Rakasta, kärsi ja kirjoita. Tutkimus dementoitunutta puolisoaan hoitaneiden naisten ja miesten hoitokokemuksesta

Dementiapotilaiden puolisohoivaa käsittelevän tutkimuksen kohteena ovat Tampereen yliopiston terveystieteen laitoksella vuosina 1993 ja 1999 kerättyhin omaishoitaja-aineistoihin sisältyvät 155 puolisohoitajan kertomusta ja haastattelua. Tutkimuksessa puolisoiden kertomia hoitokokemuksia on analysoitu laadullisia tutkimusmenetelmiä käyttäen. Tutkimustulokset monimuotoistavat aiempien omaishoitotutkimusten tuottamaa kuvaa dementiapotilaiden hoitamisesta omaisten kokemana hoitotaakkana. Vaikka useimmat puolisoista raportoivat hoidon fyysisestä ja psyykkisestä kuormittavuudesta, toi tutkimus esiin myös hoidon myönteisiä puolia sekä hoitamiselle annettujen merkitysten sukupuolisidonnaisen ja tilannekohtaisen luonteen. Hoitaminen naisille tuttuna toimintakäytäntönä ja toisaalta dementiapotilaan hoidon eritysvaateet virittivät vaimojen kerronnassa risitiriitaisen ja emotionaalisesti latautuneen jännitekentän. Naiskertojille tyypillisiä negatiivisia tuntemuksia tuottivat dementiapotilaan hoidon heikko palkitsevuus sekä oman toiminnan vertaaminen hyvän hoidon normeihin. Miehille joutuminen dementoituvan puolison hoitajaksi merkitsi astumista uudelle elämänalueelle. Miesten kerronnassa korostuivat neuvottelut perinteisen miesidentiteetin ja uuden hoitoroolin välillä. Kahtena eri ajankohtana kerättyssä tutkimusaineistossa piirtyi esiin myös dementiapotilaiden hoidon kentällä viime vuosina tapahtunut muutos. Dementiapotilaiden professionaalisen hoidon kehittyminen ja kunnallinen omaishoidon tuki ovat tuoneet helpotusta monien omaishoitajien tilanteeseen. Potilaan omaisten kannalta kehitys ei ole kulkenut kuitenkaan vain myönteiseen suuntaan. Laitoshoitopaikkojen vähentäminen sekä palvelujärjestelmän monimutkaistuminen aiheuttavat ikääntyneiden puolisohoitajien keskuudessa hämmennystä ja epävarmuutta. Samanaikaisesti hoidon tukipalveluiden alueellisten ja kuntakohtaisten erojen kasvu on asettanut omaishoitajat aiempaa eriarvoisempaan asemaan. Tutkimuksen tuottamaa tieto palvelee omaishoidon kentän eri toimijatahoja. Tietoa voidaan hyödyntää kehitettäessä omaishoitajille tarkoitettuja palveluita sekä arvioitaessa hoidon kokemisessa ja julkisessa palvelujärjestelmässä tapahtuvia muutoksia.The ageing of population enhances the number of both healthy and ill elderly people. The lengthening of life-expectancy increases particularly the number of those people who come down with dementing illnesses in their later years. The recent policies of cutting down the supply and costs of institutional care has widened the gap between the need and supply of publicly provided elderly care. The efforts to solve this unbalanced equation, has turned the glance of public policy makers and social and health care authorities to the informal resources of the patients' family members. The task of this dissertation study is to add to the knowledge and understanding of the care experiences of wives and husbands who have given care to their demented spouses. The focus of analysis is on the persons' own ways to experience the care. How women and men assign meaning to and make sense of their position and action as caregivers of their demented companions have been analysed in the five sub-studies of the research project. The data of the study were drawn from free-form narratives and in-depth interviews of family caregivers collected by the Tampere School of Public Health in the beginning and in the end on 1990. The narratives and interviews of wives and husbands, dating from different periods of data collection, were analysed separately. The study was based on a social constructionistic view of intersubjective constructions of meanings in human communication. Qualitative approaches and research methods were used in the analyses. The interpretation of men's narratives drew mostly on discourse analytic methods. The analyses of the narratives and interview speech of women made use also of semiotic and narrative frames of interpretation. The discourse analytic interpretation of husbands' narratives revealed four cultural modes of speech through which men made sense of the ambiguousness and contradictories of their experiences linked to being and performing as primary caregivers. For most men becoming a caregiver meant entering a new and strange domain of life. In the early phases of the spouse's disease, taking on the task of caregiving might be felt as a challenge. Many of the husbands who had moved to later phases of the caring process, were faced with the situation of negotiating with their marital duties, the hardening demands of care and their traditional masculine identities. The meanings given to caregiverhood were shaped by the way of narration. The men who described their experiences of care to lay interviewers, portrayed themselves as more active caregivers than those men who sent written accounts to the requester of their story; a male medical expert of dementia. Caring as a familiar activity to most women, on the one hand, and the specific demands as well as the unrewarding nature of caring for a demented patient, on the other hand, generated a contradictory and emotionally laden field of tension in the narration of wives. The internalised duty and volition to give the best possible care, experienced by many female narrators, often collided with the limits of personal capacity and competence to give ideal care, which, as a consequence, provided the wives with experiences of insufficiency and unsuccessfulness as caregivers. At the same time the narrative interpretation of the stories of wives being in different phases of the caring process, revealed the temporal variation of meanings assigned to careiving. Those wives who had gone through the entire process of caring found their personal resources of care more sufficient and told more positive stories of their experiences of care than the wives who were currently doing the job of caregiving. The case analysis of wives' interview talk further detailed the picture of the variation of ways of how wives commit themselves and assign meaning to their position and action as caregivers of their demented husbands. Especially in the narration of wives who had cared for their husbands during the 1990's, the talk about family caregiving turned out to be talk about a new way of providing domestic care, the talk framed by a cultural mode of speech within which the caregivers' social identities seem to be under reconstruction. Caring for a demented relative at home turns to family caregiving when domestic caregiving becomes intervened and organised by the public health care system. Family caregivers do not only exert their duty as the patient's spouses (or other family members), but they are, in relation to the public health care system, also providers of a service called the domestic care. In the light of my research data, financial support and social empowerment are effective means for alleviating physical, psychological and social burden experienced especially by female caregivers. At the same time, supporting only a part of caregivers who feel to need assistance, low allowances, high taxation and the differences in access to services and support between caregivers residing in different municipalities, is becoming a new source of problems and negative experiences of care among family caregivers