Rationale: In order to target rehabilitation needs of survivors of critical illness and their relatives timely and adequately, a thorough needs assessment is recommended when hospital discharge planning is initiated. In light of existing evidence on physical and psychological consequences of critical illness for both patient and family, it is as yet unclear if current hospital discharge procedures suffice to meet the needs of this group. Objectives: To explore hospital discharge experience and to identify perceived barriers and enablers for a positive transition experience from hospital to home or rehabilitation facility as perceived by survivors of critical illness and their families. Methods: We performed a grounded theory study with semi-structured interviews among a group of survivors of critical illness and their relatives (N=35) discharged from 16 hospitals across the Netherlands. Interviews were audio recorded and transcribed verbatim. Using constant comparative methods, initial and focused coding was applied to the data, which were further labeled into major and subcategories, ultimately leading to the identification of key concepts. Triangulation was applied through several reflexivity meetings at different stages of the study. Results: Twenty-two former ICU patients and 13 relatives were interviewed. The mean age was 53 (SD ± 11.2) and 60% were female. Median ICU and hospital length of stay were 14 days (IQR 9.75-24.5) and 35 days (IQR 21.75-57.25) respectively. Thematic analyses led to identification of seven key concepts, representing barriers and enablers to a positive transition experience. 'Existing in a fragmented reality', 'being overlooked' and 'feeling disqualified', were identified barriers and 'feeling empowered', 'encountering empathic and expert professionals', 'managing recovery expectations' and 'family engagement' were identified as enablers for a positive perceived transition experience. Conclusions: Findings of this study suggest that current hospital discharge practice for survivors of critical illness is driven by speed and efficiency, rather than by individual needs assessments, despite advocacies for patient- and family centered care. Discharge strategies should be customized to facilitate adequate and comprehensive assessment of aftercare needs, conducted at the right time and within the right context, encouraging empowerment and a positive perceived transition from hospital to home.
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Background The sense of home of nursing home residents is a multifactorial phenomenon which is important for the quality of living. This purpose of this study is to investigate the factors influencing the sense of home of older adults residing in the nursing home from the perspective of residents, relatives and care professionals. Methods A total of 78 participants (n = 24 residents, n = 18 relatives and n = 26 care professionals) from 4 nursing homes in the Netherlands engaged in a qualitative study, in which photography was as a supportive tool for subsequent interviews and focus groups. The data were analyzed based on open ended coding, axial coding and selective coding. Results The sense of home of nursing home residents is influenced by a number of jointly identified factors, including the building and interior design; eating and drinking; autonomy and control; involvement of relatives; engagement with others and activities; quality of care are shared themes. Residents and relatives stressed the importance of having a connection with nature and the outdoors, as well as coping strategies. Relatives and care professionals emphasized the role the organization of facilitation of care played, as well as making residents feel like they still matter. Conclusions The sense of home of nursing home residents is influenced by a multitude of factors related to the psychology of the residents, and the social and built environmental contexts. A holistic understanding of which factors influence the sense of home of residents can lead to strategies to optimize this sense of home. This study also indicated that the nursing home has a dual nature as a place of residence and a place where people are supported through numerous care strategies.
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Background There is an increasing amount of research that investigates the needs and wishes of people with aphasia and their relatives with regards to improving the accessibility of communication with healthcare professionals (HCP). An important way to improve this is by training HCP to use supportive conversation techniques and tools. Objectives This study aimed to inform the development of such a training, by adding to previous findings in the literature regarding the experiences, needs and wishes of people with aphasia and their relatives. We were interested in their experiences with the accessibility of communication and support from HCP and how they believed this can be improved. Methods An exploratory qualitative research design was chosen. Data was collected through qualitative semi-structured interviews with 20 people with aphasia and 12 relatives. The time post stroke ranged from 3 months to 41 years. Results Four themes described the data. According to people with aphasia and relatives (1) information transfer in healthcare settings and (2) the use of supported conversation techniques by HCP are inadequate, (3) there is a lack of shared decision-making in healthcare settings, and (4) support, guidance, counseling and education is mainly targeted at the person with aphasia. Conclusions People with aphasia and relatives reported a variety of positive and negative experiences in all themes. Even though guidelines and interventions have been developed to improve healthcare for people with aphasia and their relatives, we found that people still encounter substantial challenges in access to- and provision of information, shared decision-making, support and communication with HCP. The findings in this study provide some important recommendations for improvement, including the improvement of transfer of information, shared decision-making and individual support for the relatives.
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