A large number of people function as caregivers for their somatically ill close ones. Researchers generally agree that this role can impose a significant burden on the family. However, such studies are frequently performed on small, selected samples. National investigations and large, population based studies comparing the effect of several somatic conditions on different caregiver roles are rare to date. Further, there is a need to perform longitudinal studies in order to investigate the potential change in distress level experienced by caregivers whose family members change health status.
The aim of this project was to study the level of distress and subjective well-being among family members of individuals with a variety of somatic conditions, compared to the mental health of a control group without such burden. The research questions were; Are there any associations between one partners somatic diagnose (measured by cancer, stroke, myocardial infarction, angina pectoris or physical disability) and their spouse’s level of mental health? Is change in health status of one partner in an 11 year follow-up period related to changed mental health status of the spouse? Are adolescents whose parents have impaired hearing subject to increased level of psychological distress compared to adolescents with normal hearing parents?
To address these questions data from the Norwegian Nord-Trøndelag Health Study (HUNT) were used. HUNT I was conducted between 1984 and 1986 (N=77,212), while the second wave, HUNT II, took place between 1995 and 1997 (N=66,140). A total of 8,984 adolescents participated in Young-HUNT I, which was an integrated part of the HUNT II study. As the HUNT II also incorporated a Hearing Loss Study (the NTHLS, N=51,975), data on both objective and subjective parental hearing loss were available. Regression- and analyses of variance were utilized.
Spouses of persons who at some point had been diagnosed with at least one of the aforementioned conditions had significantly worse mental health than spouses of healthy partners controlled for age, education, spouses’ own somatic health status and the affected partners’ mental health, when investigated cross-sectionally. Likewise, longitudinal analyses showed that spouses whose partners had been diagnosed with one of these conditions in the follow-up period (minus cancer, which was not an item in HUNT I) had significantly worse mental health than the controls. In both papers it was found that physical disability was the condition that had the largest effects on caregivers, and that the affected (ill) partner’s level of distress in some cases mediated the effect of somatic illness. The effect sizes were, however, smaller than in many previous studies and this may be related to the difference between clinical samples and population based studies, and to possible limitations in our data.
In regard to parental hearing loss, our study shows that adolescent children of mothers who either claim to be severely disabled by hearing disability or who have a severely disabling hearing impairment when screened with pure tone audiometry, experience significantly more distress than children of normal hearing mothers. The effect sizes were moderate to large, despite small groups. No corresponding effect was found for the fathers’ audiometrically measured hearing loss, only a weaker effect of moderate, self-report hearing loss. As far as we know, this is the first time such associations in the adolescent-parent relation have been explored in a large population sample with audiometric data. The findings confirm results from small-scale studies and qualitative studies in the field.
The current findings indicate that a variety of somatic conditions may be associated with increased psychological distress in caregivers, that different caregiver roles experience increased distress, and that the affected person’s distress level also seems to affect the mental health of family members.