Family Caregivers' Needs When Caring for Adolescent with a Mental Illness in Taiwan

Abstract

Families caring for an adolescent with a mental illness are often unprepared and unsupported for this demanding role. Although there have been calls to investigate the experiences and needs of family caregivers of adolescents with a mental illness, to date there is little research in this area. This is particularly the case for family caregivers of an adolescent with mental illness in a Chinese society. The present study explored the experiences and needs of family caregivers living in Taiwan when caring for an adolescent diagnosed with schizophrenia or a mood disorder. This study adopted a sequential mixed method design with a qualitative phase followed by a quantitative phase. Phase one explored the experiences and needs of Taiwanese family caregivers using focus group interviews. Six focus group interviews with 2-3 family caregivers (n = 14 in total) were conducted. A thematic content analysis revealed three themes: being in the dark, being isolated, and being uncertain. The findings from this phase were used to identify key issues and inform the selection of instruments to examine family caregivers’ needs with a larger sample. The second phase of the study used a cross-sectional design to collect data from caregivers using a set of standardised questionnaires that included: the Educational Needs Questionnaire (ENQ), Caregiver Burden Inventory (CBI), and Depression, Anxiety, and Stress Scale (DASS). Data were gathered from 261 caregivers recruited from eight different sites including six hospitals, two mental rehabilitation associations, and an internet website. There were 170 caregivers of an adolescent diagnosed with schizophrenia; and 91 caregivers providing care to an adolescent with a mood disorder. Family caregivers reported significant information needs which were unmet. Family caregivers with a higher family income or higher educational level were more likely to report unmet educational needs. Moreover, family caregivers who were members of mental rehabilitation associations or who used information resources on a website consistently had high unmet educational needs scores. The results also revealed the importance of assessing the specific educational needs of families in regards to the type of mental illness. The educational needs of caregivers differed according to diagnostic group especially in regards to aetiology, symptoms, and coping strategies. Family caregivers reported serious emotional challenges when providing care and support to their adolescent relative. Around a third (38.7%) of family caregivers were experiencing mild to severe depression, one half (49.8%) of caregivers reported mild to severe anxiety, and 28.7 percent reported mild to severe stress. Emotional wellbeing was higher when the adolescent’s condition was more stable. Moreover, family caregivers’ emotional well-being was correlated with their household income and may reflect the benefits of socio-economic status when coping with adverse life circumstances. Family caregivers of an adolescent with schizophrenia reported higher caregiver burden than participants who provided care to an adolescent with a mood disorder. This was indicated on subscales related to time-dependence burden, social burden, and emotional burden. The outcomes of this study provide mental health professionals with an understanding of family caregivers’ experiences and needs. A greater awareness of caregivers’ needs may also enable and encourage mental health professionals to develop more cooperative and ongoing relationships with family caregivers. These findings indicate the need to improve (1) the availability, quality and content of information on different mental illnesses; (2) access to resources; and, (3) social and emotional support given to family caregivers who care for an adolescent relative with a mental illness.