Journey of Hope and Despair. The Short-term Outcome in Schizophrenia and the Experiences of Caregivers of People with Severe Mental Disorder

Abstract

Psykiatrinen hoitojärjestelmä on muuttunut viimeisten kahden vuosikymmenen aikana huomattavasti. Psykiatrisia sairaalapaikkoja on voimakkaasti vähennetty ja potilaat hoidetaan pääosin avohoidossa. Avohoidon mahdollisuudet vastata näin syntyneisiin uusiin haasteisiin ovat kuitenkin monin paikoin olleet riittämättömät ja omaisten vastuu sairastuneen läheisen arkipäivän selviytymisestä on selvästi kasvanut.

Väitöskirja koostuu viidestä erillisestä tutkimuksesta. Tutkimuksissa selvitettiin uusien skitsofreniapotilaiden sairauden kulkua kahden vuoden seurannassa sekä omaisten tilannetta ja tuen tarvetta. Lisäksi tutkittiin omaisille tarkoitettujen koulutusryhmien vaikuttavuutta. Tutkimuksiin osallistui yhteensä 227 skitsofreniapotilaasta ja 1 224 omaista. Tutkimusmenetelminä käytettiin kyselylomakkeita, strukturoituja haastatteluja sekä hoitokertomustietoja.

Skitsofreniaan sairastuneiden miesten työ- ja toimintakyky osoittautui heikommaksi kuin naisten. Hoitosuunnitelmissa miehillä suunniteltiin kuntoutusta erityisesti sosiaalisten taitojen ja työkyvyn kohentamiseksi, kun taas naisille suositeltiin miehiä useammin psykoterapiaa. Lähes 60% omaisista koki psyykkistä kuormittuneisuutta. Noin 15-25% omaisista huolenpito sairastuneesta läheisestä oli siinä määrin kuormittavaa, että heidän oma hyvinvointinsa oli vaarantunut. Noin viidennes omaisista oli tyytymätön tilanteeseen ja kolmannes oli tyytymätön psykiatriseen hoitojärjestelmään. Omaisille tarjottujen koulutusryhmien todettiin lisäävän omaisten tietoja skitsofreniasta ja vähentävän koettua kuormittuneisuutta.

Omaisten tulisi olla mukana potilaan hoidossa ja kuntoutuksessa sen alusta asti. Läheisestään huolta pitävät omaiset tarvitsevat tietoa mielenterveyden häiriöistä ja niiden hoidosta, ohjausta käytännön ongelmatilanteissa sekä emotionaalista ja taloudellista tukea. Omaisten tiedon ja tuen tarpeet tulisi arvioida osana potilaan hoitoa ja kuntoutusta ja tarvittavat tukitoimet käynnistää. Koulutuksellisten tukimuotojen saatavuutta tulisi Suomessa lisätä. Tutkimustuloksia voidaan hyödyntää mielenterveyspalvelujen kehittämisessä ja ennalta ehkäisevässä mielenterveystyössä sekä omaisjärjestöjen toiminnassa.

Background and aims of the study

Over the past two decades, the deinstitutionalization movement has shifted the primary locus of care from psychiatric hospitals to community care in Finland as well as in most other Western countries. Many patients living in the community need a lot of practical help and emotional support in order to manage their everyday lives. Given the limited resources of community care, this support is often provided by the family members of the person with mental illness. As a result of the caregiving consequences, family members have experienced burden and distress and expressed a need for informational and emotional support. The purpose of the present study was to examine the short-term outcome in schizophrenia and to contribute to the understanding of the situation and needs of family members of people with severe mental illness.

Subjects and methods

Study I consists of 15-44 ­year-olds in six mental health districts who during a 1-year period between 1983 and 1984 contacted public psychiatric services for the first time in their life in order to receive treatment for schizophrenia. Schizophrenia was defined by DSM-III criteria; the disorders included were schizophrenic, schizophreniform and schizo-affective psychoses. During the study period a total of 227 patients meeting these criteria contacted public psychiatric services and were included in the study. All patients underwent an extensive basic examination at entry, and individual treatment plans were drawn up for each patient. In addition, follow-up investigations were carried out 12 and 24 months after the initial contact.

Studies II-V comprise a large amount of data on caregivers of people with severe mental disorder. The caregivers were contacted through family organizations, psychiatric hospitals and mental health care centers. Altogether 1,224 caregivers participated in these studies. Most of the participants were women with an average age of 55-56 years. Over half of the caregivers were parents of persons with mental illness. The caregivers were related to 1,174 persons with severe mental disorder, most often schizophrenia or major affective disorder. Over half of the ill family members were male. The average age of ill family members was between 37 and 41 years and the duration of illness was 11-13 years on average.

The data were collected by questionnaires in Studies II, IV, and V. All questionnaires included questions devised for each study as well as internationally used measures. In Studies I and III the data was drawn from national projects designed to study the treatment and the life situation of patients with schizophrenia in Finland. Data were collected from psychiatric case records and the patients (Studies I and III) and their caregivers (Study III) were interviewed separately by psychiatric teams.

Results

The purpose of Study I was to examine the gender differences of new schizophrenia patients in the premorbid stage and during the early stage of treatment. Men showed a poorer premorbid sexual development and they also tended to be more withdrawn than women. Following the onset of the illness, men still failed to establish satisfactory heterosexual relationships, they suffered more often from negative symptoms, and they displayed poorer working capacity and functional ability than women. At the beginning of the follow-up men had a more pessimistic view of the development of their life situation over the next 2 years, a prediction which turned out to be correct. The predictions made by the psychiatric teams were very similar. In their plans for treatment the psychiatric teams recommended primarily psychotherapeutic methods for female patients ­ and women actually went to psychotherapy more often than men ­ whereas it was felt that the rehabilitation of men should concentrate on working capacity and basic social skills.

Study II aimed to describe the well-being and need for information and support of caregivers according to living arrangements and kinship. Nearly 60% of the caregivers reported psychological distress and half of the caregivers had experienced objective burden in their lives. Most often the caregivers found general supervision of the patient tiring, but the social relationships of the caregivers had also quite often become difficult. The caregivers living with the patient expressed more psychological distress and objective burden and lower satisfaction with life than caregivers living apart from the patient. The most distressed group of the caregivers were spouses living together with their mentally ill husband or wife.

Study III was intended to identify the factors associated with whether caregivers of patients with schizophrenia were satisfied with their situation in general and with the psychiatric services in particular. One fifth of the caregivers were dissatisfied with the situation in general and about one third with the psychiatric services. Three main factors were associated with caregiver dissatisfaction with the situation in general: patients poor psychosocial functioning; patients insufficient use of medication and rehabilitative services; and living with the patient. The patients and caregivers backgrounds and the patients social relationships and satisfaction with their care had negligible roles in explaining the caregivers dissatisfaction. Caregiver dissatisfaction with the services the patient received was associated with a set of factors different from those associated with their dissatisfaction with the situation in general. Caregivers were dissatisfied with the services if the patients had severe psychotic symptoms or poor maintenance of grip on life and if they were given less psychiatric care, rehabilitation, and physical examination and treatment. The patients use of social services and the patients own dissatisfaction with community care and with their medication were also associated with caregiver dissatisfaction.

The aim of Study IV was to identify different types of caregivers of mentally ill people and examine the differences between these types. Five types of caregivers were identified according to the caregiving dimensions: supervising; anxious; coping; resigned; and activating caregivers. About two fifth of the caregivers managed the situation well and reported low levels of burden and overload. Activating and resigned caregivers were also coping quite well, even though their well-being was somewhat lower and they expressed a need for information and support. However, supervising and anxious types, who comprised about 15 % of the caregivers, were the most burdened types. The mental health of patients of supervising and anxious types of caregivers was reportedly poorer and the social disability was higher compared with other types. These caregivers also reported poorer physical and mental health, more psychological distress and more overload than other caregivers.

Supervising caregivers used problem-solving, reappraisal and stress reduction more frequently that the other types of caregivers. The coping caregivers had least need for information, whereas the anxious and supervising caregivers had most need for information. Resigned caregivers expressed the need to learn more about the basic facts of mental illness. The coping caregivers reported the least need for support while the anxious type of caregivers expressed the need for most types of support. Supervising caregivers expressed need for respite care and vacation and resigned and activating caregivers felt that they needed psychoeducation.

Study V was undertaken to examine the efficacy of a multifamily educational intervention. The educational intervention produced gains in knowledge about schizophrenia. Before the intervention a quarter of the relatives had high expressed emotion (EE). The EE status or the overinvolvement scores of the participants did not change after the intervention. However, there was a slight decrease in the criticism scores towards the mentally ill family member in the video groups, but not in the oral presentation groups. The psychological well-being of the participants also increased after the intervention, but there was no change in the objective burden felt by the participants. The intervention had a high acceptability among the relatives. The participants in video education found the information presented more often useful in practice than the participants in the oral presentations.

Conclusions

A majority of caregivers of people with severe mental illness experience some burden as a consequence of their caregiving task, but for 15-25% of caregivers the caregiving situation is clearly a risk for their well-being. Research methods and clinical practices should be developed in order to identify these caregivers early enough to prevent and reduce their physical and psychiatric morbidity.

Family members should be involved in the care and rehabilitation of the person with severe mental illness. Families who provide care and support for the ill family member need adequate information, practical advice, financial and emotional support to successfully carry out this role. These needs of should be acknowledged and assessed as a part of the routine clinical practice in psychiatric hospitals and mental health care centers. Psychoeducational family interventions should also be made more readily available in Finland.

Service provides and policy makers should be sensitive to the needs of families and involve caregivers in the service planning decisions. Health and social services should work in close collaboration with voluntary mental health organizations in planning and providing services and peer support for the people with severe mental illness and their families.