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Early-onset dementia, also referred to as young-onset dementia, affects people younger than 65 years of age. A diagnosis of dementia is often not considered when patients with symptoms of cognitive decline are < 65 years old, often resulting in a delayed diagnosis. Therefore, family caregiving for persons with early-onset dementia may differ from caregiving for persons with other dementias.
To explain the caregiving trajectory for new family caregivers of persons with early-onset dementia before and after diagnosis of the disease.
This qualitative study was conducted from a grounded theory perspective.
Family caregivers of persons recently diagnosed with early-onset dementia were recruited from two medical centres in northern Taiwan by a combination of purposive and theoretical sampling to inform the theory explaining the caregiving trajectory. Data were collected with face-to-face semi-structured interviews. Interview data were analysed with constant comparative analysis; data collection and analysis ceased when theoretical saturation was reached. A total of 15 family caregivers were interviewed.
The core theme describing the trajectory of the caregiving process for new family caregivers of persons recently diagnosed with early-onset dementia was maintaining a dynamic balance, which involved three interacting elements: (1) emotional reactions, (2) multitasking and facing conflicts, and (3) continual adjustments. A diagnosis helped caregivers find a temporary balance, but when disease progression increased, new adjustments were required.
Maintaining dynamic balance allowed caregivers to cope with their emotions, juggle the responsibilities associated with their new role, and adjust to the progression of dementia.
The findings describe the process of maintaining a dynamic balance for family caregivers of a spouse or parent with early-onset dementia. The elements used to achieve caregiving balance could help mental healthcare nurses educate family caregivers on how to adjust communication and provide them with information on when more practical support is needed.
No Patient or public contribution.
COREQ (COnsolidated criteria for REporting Qualitative research).
In Australia, aligned to safety and quality standards, the health system implements standardised practices that include patient involvement in nursing bedside handover. Despite this mandate, it remains unclear whether patients are genuinely participating in nursing bedside handovers and whether their perspectives are being considered.
To explore patient perceptions of their involvement in nursing bedside handovers.
A cross-sectional survey study was conducted in two acute metropolitan hospitals in Western Australia from July 2021 to March 2022. The survey administered to patients, comprised three sections: demographic information; involvement in bedside handover; and perceptions of bedside handovers; utilising close-ended and Likert scale questions. Open-ended questions further explored participation in bedside handovers. Descriptive statistics and comparative analyses were performed and responses to open-ended questions underwent summative deductive content analysis.
Of the 390 participants, over half reported five or more bedside handovers (n = 197, 50.7%). Most perceived the importance of (n = 334, 79.0%), and expressed their satisfaction with (n = 327, 89.6%), involvement in bedside handover. Perceptions of handover were mostly positive. There were a few significant differences throughout based on type of hospital, gender and age-group. Open ended responses shared perceptions on the perceived benefits, challenges and barriers and ways to enhance involvement in bedside handover. Patients expressed several challenges, including lack of awareness of their right to participate, the approach of nurses and the timing of handovers as hindering their participation in bedside handovers.
Patients perceived the importance of, were mostly satisfied with, and had positive perceptions of bedside handover. However, several challenges hindered effective patient participation. Further research is needed into bedside handover as it is essential to enhance patient-centred quality care that aligns with national safety and quality healthcare standards.
Understanding the significance of patient involvement in bedside handovers motivates patients to actively share information about their care, leading to increased patient satisfaction and the promotion of patient-centred care. Addressing challenges through targeted strategies can enhance patient participation, communication, increased patient satisfaction and foster a more patient-centred approach to care.
The conduct of this study was supported by the consumer advisory group in the participating hospitals who also reviewed the survey questionnaires and conducted face validity of the survey.
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