Needs of persons with dementia and their family caregivers in dementia cafés.

BACKGROUND AND AIMS: Several studies have shown the effectiveness and diversity of dementia cafés, whereas there are few published articles in academic research focusing on what persons with dementia and their family caregivers need and whether the services provided satisfy their needs. This study aimed to identify the needs of persons with dementia and their family caregivers participating in dementia cafés in Japan. METHODS: Interviews and participant observations were conducted in nine dementia cafés. Study participants were persons with dementia, their caregivers, and the staff in dementia cafés. Data were analysed using qualitative content analysis. RESULTS AND DISCUSSION: A total of 24 participants were recruited. Needs for persons with dementia were subdivided into five categories: to express their feelings about their current condition; to be accommodated through consideration of their physical and cognitive status; for changes in their health conditions to be noticed; to enjoy entertainment; and to keep in touch with others inside and outside of the dementia café. Needs for family caregivers were subdivided into four subcategories: to express their feelings such as anxiety and guilt and complaints regarding caregiving; to consult about difficulties in daily life; to listen to other family caregivers' experiences; and to keep in touch with others inside and outside of the dementia café. The needs of persons with dementia and family caregivers differ partly. CONCLUSIONS: Dementia cafés should create programmes and comfortable environments answering to the differences of their needs.

The Experience of Persons With Hematological Malignancy When Communicating With Health Care Professionals.

This study aimed to elucidate the experiences of Japanese persons with hematological malignancy (PHMs) in communicating with health care professionals (HCPs), from diagnosis to the end of life, as recalled by their families. We interviewed 14 bereaved families and analyzed the data using the basic techniques of grounded theory. We found that PHMs lived to the fullest possible when they experienced ownership of their illness process despite their disease. The ownership was made possible by active communication from HCPs: first, acknowledging the PHM's way of life, including reaching out from the HCPs and appreciating sincerely PHMs' hopes and will; and second, paving the way ahead, including giving prospects and offering choices. The study underlines that rather than just providing information about the disease, HCPs need to actively ask about and show respect for the PHM's way of life. Only after achieving this can HCPs communicate possible future pathways with PHMs.

Healthcare professionals roles in pancreatic cancer care: patient and family views and preferences.

OBJECTIVES: This study explored the information needs and requirements of patients with pancreatic cancer (PPCs) and their families through patients' and families' views and preferences (PVPs) collected by healthcare professionals (HCPs) and to identify differences in PVPs by profession. METHODS: We conducted an anonymous web-based survey of HCPs in cancer care hospitals in Japan, posing specific questions from patients or families regarding pancreatic cancer within the past year. We qualitatively analysed the data and classified them into several categories according to their content. We also compared the percentage of PVPs in each category in the medical profession. RESULTS: We collected 893 PVPs from 353 HCPs and classified them into 15 topics within 5 categories: (1) treatment and care, (2) characteristics of the disease, (3) daily life, (4) feelings of patients or families and (5) communication with HCPs/peer support information. Physicians, nurses and pharmacists received mainly PVPs in categories 1 and 2. Characteristically, cancer counsellors received PVPs in all categories, with higher frequencies for categories 3-5. CONCLUSIONS: PPCs and families have diverse PVPs, and appear to select different HCPs for consultation based on their specific concerns. Each HCP should recognise that their individual experience may be insufficient in understanding the full spectrum of PVPs; however, cancer counsellors tend to have a broader awareness of them. To support PPCs and families, HCPs should appropriately collaborate with each other, considering that HCPs like cancer counsellors who do not provide direct treatment still play an important role in providing holistic support.