BACKGROUND: Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.METHOD: We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.RESULTS: The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.CONCLUSIONS: Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
Objectives: In the post-surgical setting, active involvement of family caregivers has the potential to improve patient outcomes by prevention of surgical complications that are sensitive to fundamental care. This paper describes the development of a theoretically grounded program to enhance the active involvement of family caregivers in fundamental care for post-surgical patients. Methods: We used a quality improvement project following a multi-phase design. In Phase 1, an iterative method was used to combine evidence from a narrative review and professionals’ preferences. In Phase 2, the logic model underlying the program was developed guided by four steps: (1) confirm situation, intervention aim, and target population; (2) documented expected outcomes, and outputs of the intervention; (3) identify and describe assumptions, external factors and inputs; and (4) confirm intervention components. Results: Phase 1 identified a minimum set of family involvement activities that were both supported by staff and the narrative review. In Phase 2, the logic model was developed and includes (1) the inputs (e.g. educational- and environmental support), (2) the ultimate outcomes (e.g. reduction of postoperative complications), (3) the intermediate outcomes (e.g. behavioural changes), and (4) immediate outcomes (e.g. improved knowledge, skills and attitude). Conclusions: We demonstrated how we aimed to change our practice to an environment in which family caregivers were stimulated to be actively involved in postoperative care on surgical wards, and how we took different factors into account. The description of this program may provide a solid basis for professionals to implement the family involvement program in their own setting.
This paper highlights key opportunities for technology design for informal caregivers who provide long-term in-home care. For this purpose, a study with informal caregivers was conducted, including interviews (N=4) and online questionnaires (N=34) based on holistic analysis of supportive technologies. These investigations provide a deeper understanding of the key opportunities in the design of technologies to support the caregiver, namely (1) making caregivers better informed and more aware of existing solutions (2) increasing awareness of the caregivers' own wellness; (3) cherishing the valuable, positive moments of caregiving (e.g. by capturing precious moments) and (4) encouraging meaningful social interactions among caregivers for strengthening social ties.
