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Background: This study aimed to explore the experiences of carers of people living with dementia who participated in videoconferencing support groups during the COVID-19 pandemic to investigate their preferences and experiences with online, hybrid, and face-to-face support. Methods: This convergent mixed methods design study utilised an online questionnaire and semi-structured interviews. Interviews took place over videoconferencing software and were analysed through thematic analysis. Participants were recruited from support groups based in the UK and Ireland. Results: 39 carers of people living with dementia completed the questionnaire and 16 carers participated in interviews. Participants found videoconferencing support groups more convenient, but face-to-face groups more enjoyable. Participants who had found it difficult to access face-to-face groups prior to COVID-19 expressed more positive perceptions of videoconference-based groups. Many felt that hybrid groups would make it easier for more people to attend. However, some carers described lacking the resources and technological skills to participate in online support groups effectively. Some suggested making IT training available may improve the capacity of carers to access support online. Conclusion: Videoconferencing support groups can be an appropriate way of supporting carers of people with dementia, especially for those who do not have access to face-to-face support groups. However, face-to-face support remains important to carers and should be made available when it can be implemented safely. Hybrid support groups could allow for increased accessibility while still providing the option of face-to-face contact for those who prefer it or are not adept with technology. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to explore the incidence, use, and scope of patient diaries in paediatric intensive care units (PICUs) in the United Kingdom and Ireland. Design: This was an electronic survey sent to 30 PICUs in the United Kingdom and Ireland. Results: All PICUs (n = 30) responded, and 43% (n = 13) offered diaries. For those units that did not supply diaries, the reasons given were concerns around the legal and professional implication of using diaries. Parental/carer consent to use a diary was obtained informally (79%, n = 11), and once there was agreement to provide a diary to parents, diaries were usually started immediately (72%, n = 12). Parents were the main contributors to the diaries (94%, n = 17), and the diaries were populated with photographs (94%, n = 15), drawings (100%, n = 16), and stickers (94%, n = 15). The reasons for offering diaries were to fill gaps in memories, to engage with families, and to explain what has happened in lay language. The owner of the diary was reported to be the family (82%, n = 14) and the child (12%, n = 2). Conclusions: The use of patient diaries is an evolving intervention in paediatric intensive care settings in the United Kingdom and Ireland. This national survey has provided a clearer picture of how this intervention is used in the United Kingdom and Ireland. PICU patient diaries are used in a significant number of units, and how these are used is relatively standardized, although in some different ways from general ICUs. Relevance to clinical practice: This survey provides a baseline for future exploration, understanding, and promotion of patient diaries, as a well evaluated tool for the critically ill child and his or her family. [ABSTRACT FROM AUTHOR]

Background: Clinicians face considerable challenges in identifying patients with advanced heart failure who experience significant symptom burden at the end of life. Often, these patients are cared for in the community by a loved one who has limited access to support from specialist services, including palliative care. Aim: The aims of this study were to explore caregivers' experience when caring for a loved one with advanced heart failure at the end of life and to identify any unmet psychosocial needs. Methods: This article reports findings of a qualitative study, using semistructured, one-to-one interviews with current and bereaved caregivers, who participated in a larger mixed-methods study. Interviews were conducted by a trained researcher, digitally recorded, transcribed verbatim, and imported to NVivo 11 for data management and coding. Data were analyzed using thematic analysis and an inductive approach. Results: The 30 interviews included 20 current caregivers and 10 bereaved caregivers. The central feature of the caregivers' experience was identified as being "a physical and emotional rollercoaster." There were 3 main themes identified: poor communication, living with uncertainty, and lack of service provision. These themes were supported by 6 subthemes: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported. Conclusions: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement. [ABSTRACT FROM AUTHOR]

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients (n = 112) and their caregivers (n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers (n = 20) were purposively recruited from phase 1, and bereaved caregivers (n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients' depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden. [ABSTRACT FROM AUTHOR]