Siblings' coping strategies and mental health services: a national study of siblings of persons with schizophrenia.

OBJECTIVE: This study examined the helpfulness of coping strategies and the relative importance of mental health services in coping with schizophrenia from the perspective of siblings. METHODS: This article presents selected survey data from a national study of 746 respondents that investigated the impact of schizophrenia on siblings' lives. The authors developed the Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS), a closed-ended questionnaire that included questions about coping strategies and mental health services. RESULTS: Respondents identified services for the ill sibling, including symptom control, adequate housing, and long-term planning, as more important than direct services for themselves. The top-ranked coping strategies were education about schizophrenia, a supportive family, and seeing the ill sibling suffer less because symptoms were controlled. Understanding that families were not to blame for schizophrenia was the most helpful coping strategy for nearly three-fourths of siblings. Siblings had little contact with providers in the past; yet the majority of siblings wanted providers to be available to answer questions and clarify their role in future care. At the time of the study, respondents provided social support and helped with crises, but few coordinated the total care. CONCLUSIONS: Siblings identified multiple ways that providers can support and assist them in coping with the impact of schizophrenia. Education and support for siblings without schizophrenia and services for their ill siblings will become increasingly important for the well-being of siblings as they are faced with the responsibility of being the primary caregivers in the future.

"No one else sees the difference: "family members' perceptions of changes in persons with preclinical Huntington disease.

Manifestations of Huntington disease (HD) prior to clinical diagnosis are not well understood. This study documents adult family members' perceptions of changes and their attempts to manage these changes in persons who had received a positive predictive molecular HD test prior to clinical diagnosis. Data were obtained from 19 adult family members in six focus groups in the US and Canada and one individual interview in the US. Changes reported by family members included problems in cognition and behavior, which are consistent with prior reports. In addition, family members observed changes in motor functioning, the ability to complete usual activities at work or at home, and interpersonal relationships with family and friends. Family members attempted to manage these changes by taking on new responsibilities and preparing for future caregiving. Lack of information about preclinical HD, difficulty in understanding changes that may represent early stages of HD, and efforts to maintain secrecy of the preclinical HD situation contribute to compromising the abilities of family members to respond to changes in the person with preclinical HD. Findings provide insights into alterations in cognition, behavior, and functioning observed by the family members prior to clinical diagnosis. Findings further support the need for a more comprehensive assessment and management of early HD symptoms as well as support for family members.

The Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS): Part I--instrument construction.

Siblings of persons with schizophrenia may provide primary or secondary care for their sibling and support to parents who are primary care givers. These siblings experience stress and the accompanying sequelae of decreased quality of life, grief, chronic illness, and symptoms of depression and anxiety. Comprehensive measures of sibling stress have not been published. Before interventions to help siblings can be created, health professionals need such an assessment. The Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS) has been developed to meet the needs of both health workers and siblings. The instrument has a strong conceptual basis adapted from Pearlin's model of stress in caregiving and was preceded by pilot work that evaluated both quantitative and qualitative data. In this article, (Part I), the development of the instrument and its relationships to the conceptual model are described. Health professionals can use the instrument for collecting information that will increase their ability to identify sources of stress faced by siblings of persons with schizophrenia, and from this assessment they may develop interventions for this underserved population.

The Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS): Part II--reliability and validity assessment.

Siblings of persons with schizophrenia who provide primary or secondary care for their sibling and support to parents may experience stress, decreased quality of life, grief, chronic illness, depression, and anxiety. The effects on siblings have not been widely studied and there have not been appropriate instruments to measure the types and degree of stress and associated mental, emotional, and physical distress. The Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS) is a comprehensive instrument based on extensive research and work with siblings of persons with schizophrenia. Construction of the FLIISS and its relationship to a conceptual model of stress is presented in an article (Part I) elsewhere in this issue. In this article (Part II), reliability results and construct validity are reported for the FLIISS. The FLIISS demonstrates appropriate usefulness and content, acceptable internal consistency, and strong construct validity. Health professionals can use the instrument for collecting information that will increase their ability to identify sources of stress faced by siblings of persons with schizophrenia and develop interventions to help these siblings.