Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers

Significant demands are being placed on the informal caregivers of chronically ill patients, including those suffering from cancer. Health care professionals need to be aware of these demands, and they need effective tools to assess the impact these demands place on the caregivers. Over the past 25 years, researchers have developed self-report instruments to assess informal caregivers. These instruments assess various aspects of the caregiving experience, including caregiver burden, needs, and quality of life. The purpose of this review was to identify and critically evaluate these instruments. MEDLINE and PUBMED were searched from 1966 to 2002. After an extensive literature search and review, and utilizing specific inclusion criteria, 28 instruments were identified and evaluated in terms of their development, content, and psychometric properties. In addition, a history of the construct and measurement development in the areas of caregiver burden, needs, and quality of life are discussed. Although some further development and refinement of instruments could benefit the field, depending on the questions researchers or clinicians seek to pursue, there are many proven tools available for their use. Future research needs to use these instruments to assess the effectiveness of interventions aimed at improving the care of the caregivers.     

白血病患儿照顾者选择PICC家庭护理原因的质性研究

目的：探讨白血病患儿照顾者化疗间歇期选择PICC家庭护理的真实原因与感受。方法采用质性研究中的现象学研究方法,对16例白血病患儿照顾者进行深度的半结构式访谈,运用Colaizzi现象学研究法对资料进行分析。结果通过分析、整理和提炼主题,得出医疗条件制约、对感染原因认识不足、患儿存在医疗恐惧的心理反应、维护方便、经济与医疗保障状况欠佳5个主题。结论白血病患儿照顾者选择PICC家庭护理有其自身特点,建议加强儿科PICC导管维护培训,增加患儿维护医院的可及性。同时,医务人员应强化导管相关性感染知识的宣传,缓解白血病患儿的医疗恐惧,正确引导照顾者选择专业护理人员进行导管维护。     

Instrument development of the Confidence in Home Care Services Questionnaire for use with elders and caregivers of Mexican descent

Mexican American elders use home care services less than non-Hispanic white elders, and a larger study is testing whether lack of confidence in home care services, measured by the Community Service Attitude Inventory, is a factor. In order to further develop the questionnaire for use with Mexican American elders and caregivers, qualitative interviews were conducted with Mexican American elders (n = 5), Mexican American caregivers (n = 5), and home care providers (n = 5). Content analysis of interviews supported 2 dimensions: confidence and fear/worry. The research team developed 29 items from the dimensions. Testing of the items (n = 15) suggested content validity and two additional items. The revised questionnaire was translated and tested for language equivalence in Spanish and English, assisted by a local community advisory council (n = 9). Through collaboration, bicultural/bilingual teams and community partners refined 1 instrument that can be used to measure one of many barriers to equity in health care services with vulnerable populations. Thematic findings may be incorporated into nurses' interventions as they offer home care services to families.     

Teaching families to be caregivers for the elderly

Abstract The number of elderly citizens in Samoa is increasing and caregivers are needed to meet the challenge of home care. Nurses provided a low-cost and effective workshop for family caregivers of the elderly. The purposes of the study were to determine a relatively inexpensive method to educate many caregivers; to determine the impact of the workshops on the individual caregivers; to assess the impact on the care given to the elderly as a result of the workshops and to determine potential policy issues related to the elderly for Samoa. The results of this qualitative study indicate information sessions were effective, a support network for the caregivers developed, the quality of care of the elderly improved, community awareness about the needs of the elderly increased, and an interdisciplinary group met to formulate a policy for government action to provide needed services for the elderly.     

Respite--a coping strategy for family caregivers

The caregiver respite experience is seen as one way to moderate the negative consequences of caregiving. From an interpretivist research orientation, this study explored how 10 family caregivers of persons with dementia experienced respite. From a coping theoretical perspective, the caregiver respite experience is discussed as a process of "getting out" of the caregiver world, and is linked to avoidance strategies of emotion-focused coping. The following three phases within the coping dimension of the respite experience were found: caregivers recognizing their need to get out of the caregiver world, giving themselves permission to actually get out from it temporarily, and having the appropriate social support resources available to facilitate the getting out. The critical practice and research implications linked to caregivers' ability to acknowledge their need for respite are described.