Työstää, tarinoida, selviytyä. Vanhemman psyykkinen sairaus lapsuudenkokemuksena

Abstract

Psyykkisesti sairastuneiden omaisista lapsia on tutkittu enemmän kuin mitään muuta omaisryhmää. Valtaosa tutkimuksista on ollut psykiatris-tilastollisia tutkimuksia, joissa on pyritty kartoittamaan niitä riskejä, jotka vanhemman psyykkinen sairaus muodostaa lapsen kehitykselle. Näissä tutkimuksissa on etsitty myös selviytymiseen johtavia, suojaavia tekijöitä. Tässä tutkimuksessa kiinnostuksen kohteena on puolestaan se, mitä nyt jo aikuistuneet lapset itse ajattelevat perheestään, lapsuudestaan, omasta elämästään ja selviytymisestään. Tutkimusta varten haastateltiin aikuisia, joiden äiti tai isä oli aikanaan sairastunut psyykkisesti. Haastateltavat kertovat lapsuudestaan ja pohtivat vanhemman psyykkisen sairauden merkitystä elämänsä osana. Tutkimuksen tulososassa esitetään kymmenen haastattelun tarinalliset analyysit. Tutkijan ja aineiston välisen vuoropuhelun kautta etsittiin erilaisia tarinallisia malleja, joiden avulla haastateltavien oli mahdollista kertoa vanhemman psyykkiseen sairauteen liittyvistä kokemuksista. Tarinallinen lähestymistapa kiinnitti huomion myös siihen, mikä kokemuksissa ei ollut tarinamuotoista.

Haastateltavat puhuvat myös lapsuuden kokemuksista puhumisesta ja tuon puhumisen vaikeudesta. Lapsuudesta kertominen on kokemusten koskettamista kielellisesti. Millaisia ovat kokemukset, joista kertominen vaatii vuosien työstämisen ja joista kertominen synnyttää pelkoja hallitsemattomasta itkusta? Haastateltavat kuvaavat suhdettaan lapsuuden kokemuksiin ruumiillisena prosessina. Kokemukset ovat olleet 'pinnan alla', 'peitossa', sisällä 'mustana möykkynä', joka 'sulaa hitaasti'. Kertomalla kokemukset alkavat saada merkityksiä, ne tarinoituvat. Kielellistämällä kokemukset ikään kuin autetaan ulos ruumiista, jolloin niihin saadaan etäisyyttä. Osa haastateltavista kuvaa psyykkisesti sairastunutta äitiään tai suhdettaan äitiin tavoilla, jotka ovat kulttuurisesti harvinaisia, ehkä jopa kiellettyjä. Äiti voi olla tuhoava, pelottava tai vieras. Äiti voi jäädä tuntemattomaksi, kuin kuolleeksi. Kuvaukset äidistä voivat olla totaalisen kielteisiä tai sitten niihin on kutoutunut myös rakkautta, myötätuntoa tai sääliä. Kertomuksissa kysymys vanhemman psyykkisen sairauden merkityksestä ja kysymys selviytymisestä kietoutuvat toisiinsa: elämästä voi tulla selviytymisen projekti, johon pakottaa pelko omasta sairastumisesta. Ne jotka kokevat selviytyneensä, eivät enää pelkää sairastuvansa. Suuri osa tarinoista on kasvun, kehityksen ja eheytymisen tarinoita, mutta on myös toisenlaisia tapoja kertoa. Yksi haastateltava on ollut 'selviytyjäluonne' jo lapsesta. Toinen näkee elämänsä isän psyykkisen sairauden määräämänä, mutta käyttää tätä tulkintaa resurssina oman elämänsä ymmärtämiseksi ja hyväksymiseksi.

Neljässä haastattelussa huolenpitäjinä toimivat tyttäret pohtivat suhdettaan vanhenevaan äitiin. He ovat kantaneet vastuuta äidistään lapsesta alkaen. Tulokset viittaavat siihen, että on olemassa vahvoja kulttuurisia malleja vastuunkannon velvoittavuudesta. Tyttäret elävät eräänlaisessa emotionaalisessa loukussa, etäisyyden ottaminen herättää syyllisyydentunteita, läheisyys ahdistaa. Haastatteluissa vastuunkannon rajoja etsitään ja asetetaan moraalisen ja psykologisen pohdinnan kautta. Tutkimusta on mahdollista hyödyntää sosiaali- ja terveydenhuollossa ja omaisjärjestön työssä, kun psyykkisestä sairaudesta kärsivien perheiden lapsille tai psyykkisesti sairastavista vanhemmastaan huoltapitäville aikuisille lapsille suunnitellaan tukitoimia.

To work through, to narrate, to survive. Parental mental illness as a childhood experience

This study is concerned with the experiences of adult children of parental mental illness. Children are conceptualized as one group of family members of those suffering from mental illness, alongside parents, spouses and siblings. The central question in research on family members is: how does the mental illness of one family member affect the lives of the other family members? The study begins by analyzing (1) social and cultural meanings assigned to mental illness, (2) manifestations of mental illness in social processes, mainly in the family, and (3) the course of mental illness as a temporal process, to which the experiences of family members are attached. Drawing on this scheme, studies addressing family members' experiences in general are reviewed first, after which the focus of attention is directed to the experiences of the children. The selection mainly covers qualitative studies. This has mainly to do with the way in which experience is defined in this study: what is essential about experience is the way in which people themselves define it. A qualitative approach can provide informants a chance to draw up definitions of their own.

Children of mentally ill parents have received more attention in research than any other group of family members. The vast majority of studies have been psychiatric and statistical in nature and sought to explore the risks that a parent's mental illness presents to the development of a child. These studies have also tried to find protective factors, which lead to survival. Although statistical studies and measurement-oriented methods have succeeded in capturing many survival related factors, they tend to produce unconnected facts without a 'plot'. They fail to capture the personal voices of children or adult children or what they themselves think about their families and lives. This study set out to do this. The concept of experience, often referred to as an authentic, individual and unique occurrence, is central to the study. Viewed from the perspective of social constructionism, experience is not untouched by the concepts and patterns of thought that are available to us in our culture. The cultural dimensions of experience are a special focus of interest in this study. The concept of cultural models of narrative is used as a methodological tool through which the cultural nature of experience is tackled.

The study had three research questions: 1) What kinds of experiences are associated with a parent's mental illness from a child's perspective? 2) What kinds of meanings can be assigned to a parent's mental illness and what kinds of meanings can it get in the lives of children? 3) Does the issue of survival emerge from the data, and if so, what kinds of meanings are attached to it in the context of parental mental illness? Thirteen adults whose mother or father had suffered from mental disorder were interviewed for the study. One interview involved two sisters, which raises the number of interviews to 12. The final case analyses were conducted on the basis of 10 interviews. Interviewees took different routes to the study, but most of them were recruited through a newspaper announcement. The sample had 12 women and one man. The age range of the interviewees was 24-50 years. The parent who had developed a mental illness was the mother in all the cases, and in one case also the father was ill. As reported by interviewees, ten parents suffered from schizophrenia, while the rest had an unspecified psychosis or depression. Interviewees talked about their childhood and contemplated the significance of parental illness as part of their lives. It is not possible to situate the researcher's interpretations of the interviewees' experiences clearly in the world of the interviewee or the researcher; rather, they represent the point of contact between these two worlds. In this sense the researcher herself is an important research tool: her narrative imagination and the feelings that arose while listening to the narratives. This method was used to identify cultural patterns of narratives endorsed and rejected by both interviewees and researcher. The dialogue between the researcher and the data gave the opportunity to focus on things that did not take the form of a narrative.

The interviewees generated plenty of spontaneous metatalk, talk about talk. They talked about talking about childhood and about how difficult it was. Talking about one's childhood meant touching one's experiences through the medium of language. What is the nature of these experiences, if it takes years of hard work before one can even begin to talk about them and if talking raises fears of uncontrollable crying? The painfulness of talking conveys something essential about the childhood. Interviewees described their relation to their childhood experiences as a bodily process. The experiences have been 'under the surface', 'under cover', as a 'black lump', which 'melts slowly'. In the process of telling, stories start to acquire meanings and take the form of a narrative. Giving the experiences linguistic form helps the narrator expel the experiences from the body, which allows distancing. Some interviewees describe the mentally ill mother or the relationship to her in ways that are culturally rare, perhaps even forbidden. Mother may be destructive, frightening or alien. She may remain a stranger, like a dead person. She manipulates, calls you a whore, tries to kill you. Living with her can be like a nightmare, at worst comparable to a concentration camp. Descriptions of her may be totally negative or interlaced with love, compassion or pity. In the narrative, the issue of the significance of parental mental illness and that of survival become intertwined: life may turn into a survival project, compelled by fear of developing a mental disorder themselves. The ones who think they have survived no longer have this fear. Most stories are stories about growth, development and becoming whole, but there are other ways of telling. One of the interviewees projects herself as a 'survivor' since childhood. Another views her life as determined by the father's illness, but draws on this interpretation as a resource to understand and accept her own life.

In four interviews the caregiver-daughters reflect upon their relationship to the ageing mother. They have been responsible for the mother since childhood. The findings imply that there are powerful cultural models that obligate one to take responsibility. Daughters find themselves in an emotional trap where distancing raises feelings of guilt and closeness brings about distress. The boundaries of obligation are sought in the interview and drawn through moral and psychological reflection. On the whole, talking about the experiences of parental mental illness may be difficult, because existing narrative models may impede or limit narration or serve as a context, which undermines or complicates narration. Children of mentally ill parents and other groups of family members are joined especially by their caregiver position and by clashes with the health care system. In the current stage of research on family members where increasing numbers of children and siblings of mentally ill persons are joining the organizations for family members, it is appropriate to ask what kind of perspective on mental illness would be justifiable from the viewpoint of all groups of family members.