Article
Multidisciplinary Sciences
A. Bosco, C. Di Lorito, M. Dunlop, A. Booth, D. Alexander, S. Jones, B. R. Underwood, C. Todd, A. Burns
Summary: This study explores the views of hospice dementia care for bereaved carers of people with dementia and hospice clinicians. The results indicate that rapid response teams delivering hospice home care could be a better option, and may require joined-up care with other community services.
Article
Critical Care Medicine
Yu Fu, Anne Mason, Alison C. Boland, Gordon Linklater, Vania Dimitrova, Ascension Donate-Martinez, Michael Bennett
Summary: A multicentre qualitative study in the UK found that patients with severe COPD and their caregivers commonly experienced uncertainty and fear, requiring reassurance, rapid medical access, home care, and finance advice. Health professionals stressed the importance of timely palliative care, but identified variations in the integration of palliative care services across regions.
Article
Medicine, General & Internal
Sarah Mitchell, Stephanie Harding, Mohini Samani, Anne-Marie Slowther, Jane Coad, Jeremy Dale
Summary: The study found that poor experiences of general practice make children and families feel isolated, while they value support from general practice. Building a good relationship with general practice can provide important aspects of care for children with life-limiting and life-threatening conditions.
Article
Health Care Sciences & Services
Maarten Vermorgen, Isabel Vandenbogaerde, Chantal Van Audenhove, Peter Hudson, Luc Deliens, Joachim Cohen, Aline De Vleminck
Summary: This study investigated how family carers of people with a life-limiting chronic illness perceive collaboration with healthcare professionals in the last phase of life. Results revealed that family carers experience many possibilities, but also perceive missed opportunities for effective collaboration in palliative care.
PALLIATIVE MEDICINE
(2021)
Article
Psychology, Multidisciplinary
Hadis Ashrafizadeh, Mahin Gheibizadeh, Maryam Rassouli, Fatemeh Hajibabaee, Shahnaz Rostami
Summary: The study conducted in Iran aimed to explore the perception of formal and informal caregivers on the unmet needs of Alzheimer's patients. Through in-depth interviews, it was found that a comprehensive needs management approach is essential to improve the quality of life for patients, with the care provided by caregivers playing a crucial role in meeting these needs.
FRONTIERS IN PSYCHOLOGY
(2021)
Article
Health Care Sciences & Services
Lesley Dunleavy, Nancy Preston, Catherine Walshe
Summary: This study explores how clinicians recruit participants for palliative care trials and the reasons behind their recruitment strategies. The results indicate that the recruitment process is influenced not only by the social marketing mix framework, but also by wider contextual issues such as emotional labor, power relationships, and hierarchies. Therefore, trial planners need to ensure that recruiters receive training and support to address the emotional labor involved in the recruitment process.
PALLIATIVE MEDICINE
(2023)
Article
Oncology
Maria Norinder, Lena Axelsson, Kristofer Arestedt, Gunn Grande, Gail Ewing, Anette Alvariza
Summary: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) aims to help family caregivers identify and express their support needs in discussions with healthcare professionals. Using CSNAT-I can enhance caregivers' involvement and sense of security.
EUROPEAN JOURNAL OF ONCOLOGY NURSING
(2023)
Article
Health Care Sciences & Services
P. Galen DiDomizio, Morgan M. Millar, Lenora Olson, Nancy Murphy, Dominic Moore
Summary: This study investigates the relationship between complex care and palliative care pediatric teams, and explores the potential benefits of collaboration or additional training to address challenges in caring for children with medical complexity (CMC). The results show that complex care teams face various challenges in caring for CMC, and palliative care involvement can benefit both the complex care teams and patients.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
(2023)
Article
Medicine, General & Internal
Shuqin Zhu, Hanfei Zhu, Xintong Zhang, Kouying Liu, Zumei Chen, Xiaowen Yang, Changxian Sun, Weiping Xie, Qin Xu, Weiying Li, Dong Pang, Yan Cui, Hong Wang
Summary: The study aimed to investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China. A total of 18 articles were included, identifying that patients need a comfortable experience and family caregivers need to care for patients and themselves.
Article
Medicine, General & Internal
Stina Nyblom, Inger Benkel, Linnea Carling, Elisabet Lofdahl, Ulla Molander, Joakim Ohlen
Summary: This study investigates the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening diseases and their family carers. The findings suggest that the significance of the pandemic varied for patients and carers, ranging from minimal impact to living in isolation with constant fear of infection. The limitations on social contact due to the pandemic were particularly noticeable for this group of patients, as it deprived them of valuable time. However, most patients and carers still had access to specialized palliative home care, which was crucial for their sense of security.
Article
Education & Educational Research
Arja Suikkala, Anniina Tohmola, Eeva K. Rahko, Minna Hokka
Summary: The main competence needs within palliative care for the coming decade include palliative care competence at all levels within healthcare and social welfare services, individualized palliative care competence, person-centered encounters competence, and systematic competence development within palliative care. This highlights the importance of education and professional development in supporting physicians and registered nurses in meeting future palliative care competences. Recommendations for seamless cooperation between palliative care services and educational institutions to continuously assess competence requirements within the field of palliative care are provided, with the use of online multi-professional simulations as a potential tool for enhancing future competencies.
BMC MEDICAL EDUCATION
(2021)
Review
Health Care Sciences & Services
Karen Neoh, Andrew Page, Nicolas Chin-Yee, Carolyn Doree, Michael Bennett
Summary: This study aims to provide a pragmatic overview of the approaches to investigate and manage anaemia in palliative care patients. Evidence supports patient-centred investigation of anaemia, with a more restrictive approach to blood transfusion and avoidance of routine use of oral iron and erythropoetin stimulating agents (ESAs). Further research is needed to evaluate the efficacy of IV iron in these patients.
PALLIATIVE MEDICINE
(2022)
Article
Public, Environmental & Occupational Health
Kristin Bindley, Joanne Lewis, Joanne Travaglia, Michelle DiGiacomo
Summary: This study explores the impact of social welfare policies on bereaved carers in Western Sydney, including economic difficulties, housing issues, and job instability. The findings suggest that personal, interpersonal, and structural factors shape the experiences of these carers in navigating welfare needs, while transactional organizational cultures and siloed institutions contribute to their burdens.
HEALTH & SOCIAL CARE IN THE COMMUNITY
(2021)
Article
Medicine, General & Internal
Rhiannon Jane Barker, Patricia Wilson, Claire Butler
Summary: This paper examines the experiences of older patients and their carers regarding end-of-life care in England. It suggests that while medical care received by patients is generally praised, the provision of relational care, particularly in terms of adult social care at home, is fragmented and of varying quality. The study highlights the importance of attending to the patient voice and using their experiences to improve care outcomes.
Article
Oncology
Jafar H. Al-Mondhiry, Aaron D. Burkenroad, Eric Zhang, Christopher J. Pietras, Ambereen K. Mehta
Summary: The study found that PC education in hematology/oncology fellowship programs in the U.S. commonly includes didactic lectures, required rotations, and simulation/role-playing. Program leadership expressed overall satisfaction with the PC education, although there are disparities in the importance placed on specific PC domains.
SUPPORTIVE CARE IN CANCER
(2021)
Article
Health Care Sciences & Services
Gunn Grande, Christine Rowland, Bernard van den Berg, Barbara Hanratty
PALLIATIVE MEDICINE
(2018)
Article
Health Care Sciences & Services
Alice M. Firth, Suzanne M. O'Brien, Ping Guo, Jane Seymour, Heather Richardson, Christopher Bridges, Mevhibe B. Hocaoglu, Gunn Grande, Mendwas Dzingina, Irene J. Higginson, Fliss E. M. Murtagh
PALLIATIVE MEDICINE
(2019)
Article
Health Care Sciences & Services
Alex Hall, Gail Ewing, Christine Rowland, Gunn Grande
PALLIATIVE MEDICINE
(2020)
Article
Health Care Sciences & Services
Sean Urwin, Bernard van den Berg, Yiu-Shing Lau, Christine Rowland, Barbara Hanratty, Gunn Grande
Summary: This study assessed the feasibility and monetary value of end-of-life caregiving in a cancer setting, finding that social and emotional support, as well as symptom management tasks, represent the largest proportion of the monetary valuation. The research provides insights into subgroup variation and offers a valid method to inform economic evaluation and policy.
PALLIATIVE MEDICINE
(2021)
Article
Medicine, General & Internal
Emma Patchwood, Kate Woodward-Nutt, Sarah A. Rhodes, Evridiki Batistatou, Elizabeth Camacho, Sarah Knowles, Sarah Darley, Gunn Grande, Gail Ewing, Audrey Bowen
Summary: This study investigated the clinical effectiveness and cost-effectiveness of a person-centred intervention for informal carers/caregivers of stroke survivors. The results showed that the intervention did not achieve the expected benefits and was not cost-effective compared to usual care.
Article
Public, Environmental & Occupational Health
Sean Urwin, Yiu-Shing Lau, Gunn Grande, Matt Sutton
Summary: Research shows that there are discrepancies between reports from recipients of informal care and providers of care. As the restrictions on activities for recipients increase, the agreement between providers and recipients also increases. Additionally, when both parties report caregiving, providers tend to report significantly more hours of care compared to recipients.
SOCIAL SCIENCE & MEDICINE
(2021)
Editorial Material
Health Care Sciences & Services
Sheila Payne, Peter Hudson, Gunn Grande
PALLIATIVE MEDICINE
(2022)
Article
Medicine, General & Internal
Gunn Grande, Christine Rowland, Sarah Cotterill, Evridiki Batistatou, Barbara Hanratty
Summary: The study found that patients' psychological symptoms and functioning, caregiving hours, female gender, and seeking formal help were associated with worse mental health in caregivers. General practitioner and social care input, as well as relaxation, were related to better mental health. Factors such as patients' psychological symptoms, caregiving hours, female gender, and older age, employment, and relaxation were associated with either worse or better general health in caregivers. Improvements in caregivers' health overall may be achieved by focusing on the potential impacts of patients' psychological symptoms, facilitating respite and relaxation, and paying particular attention to factors affecting female caregivers.
Article
Economics
Sean Urwin, Yiu-Shing Lau, Gunn Grande, Matt Sutton
Summary: This study analyzes the agreement level and predictors between two main methods used to identify informal carers. The results show low levels of agreement between the methods, suggesting that future research and data collection methods should pay more attention to the identification method.
Article
Economics
Sean Urwin, Yiu-Shing Lau, Gunn Grande, Matt Sutton
Summary: Informal carers report lower evaluative wellbeing than non-carers, but their experienced wellbeing is slightly higher. Decomposition analysis reveals that the increase in experienced wellbeing for carers is mainly driven by factors such as sleep, time stress, and alternative characteristics of time use, while leisure and non-market activities dampen this increase.
Article
Nursing
Maria Norinder, Lena Axelsson, Kristofer Arestedt, Gunn Grande, Gail Ewing, Anette Alvariza
Summary: In this study, nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention were explored. The findings showed that nurses' everyday clinical practice changed and they experienced professional and personal growth. The use of the intervention facilitated more proactive and trusting conversations with family caregivers.
JOURNAL OF CLINICAL NURSING
(2023)
Article
Oncology
Maria Norinder, Lena Axelsson, Kristofer Arestedt, Gunn Grande, Gail Ewing, Anette Alvariza
Summary: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) aims to help family caregivers identify and express their support needs in discussions with healthcare professionals. Using CSNAT-I can enhance caregivers' involvement and sense of security.
EUROPEAN JOURNAL OF ONCOLOGY NURSING
(2023)
Article
Medicine, General & Internal
Sarah Darley, Sarah Knowles, Kate Woodward-Nutt, Claire Mitchell, Gunn Grande, Gail Ewing, Sarah Rhodes, Audrey Bowen, Emma Patchwood
Summary: The study examined the implementation of an intervention to support informal caregivers and provided insights into the findings of the OSCARSS cRCT. Using a mixed methods longitudinal process evaluation informed by the normalisation process theory, the study found that both individual and organizational factors influenced the implementation of the CSNAT-Stroke intervention and its reception by caregivers.
Article
Primary Health Care
Amy Mathieson, Karen Luker, Gunn Grande
PRIMARY HEALTH CARE RESEARCH AND DEVELOPMENT
(2020)
Review
Medicine, General & Internal
Sabrina Bajwah, Adejoke O. Oluyase, Deokhee Yi, Wei Gao, Catherine J. Evans, Gunn Grande, Chris Todd, Massimo Costantini, Fliss E. Murtagh, Irene J. Higginson
COCHRANE DATABASE OF SYSTEMATIC REVIEWS
(2020)