A comparison of four dementia palliative care services using the RE-AIM framework.

BACKGROUND: Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned. METHODS: A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services. RESULTS: The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place. CONCLUSIONS: An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.

A scoping review protocol: Mapping the range of policy-related evidence influencing maternal health outcomes in a fragile, low-income country.

AIM: The aim of this scoping review is to map the range of policy-related evidence influencing maternal health outcomes and determine the cultural and contextual factors influencing maternal health in Myanmar, a low-income, fragile setting. DESIGN: Eligible studies identified will include maternal health-related policies, policy documents and research. All types of health-related policies aimed at targeting population health and well-being influencing maternal mortality and morbidity will be considered. METHODS: This scoping review has been developed using the Joanna Briggs Institute recommendations. The database search will include MEDLINE, CINAHL, Web of Science, Cochrane Library and the grey literature. Documents published in English and Burmese in the past 10 years will be included. Numerical data will be extracted and summarized in diagrammatic form, and a descriptive format will be used to present narrative accounts. Funding approval was granted by the Economic and Social Research Council in January 2020. This protocol was registered with OSF registries (Open-ended Registration) on 30 March 2021. DISCUSSION: Little is known about which strategies work best as there is less evidence related to health policy and contextual factors in which maternal health care is delivered in fragile, low-income settings. Understanding the context of maternal health is key to the planning and implementation of effective maternal health services designed to address women's needs. IMPACT: This review will map the range of policy-related evidence influencing maternal health outcomes in Myanmar and will underpin future large-scale research in other low-income and fragile settings. The results of this scoping review will provide recommendations for developing and improving practice and education for nurses and midwives working in resource-restricted contexts.

The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study.

AIM: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. BACKGROUND: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. DESIGN: Descriptive qualitative study. METHODS: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. RESULTS: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. CONCLUSION: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

BACKGROUND: Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. AIM: (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. DESIGN: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. SETTING/PARTICIPANTS: A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. RESULTS: People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. CONCLUSION: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

"Running Water Won't Freeze": How people with advanced Parkinson's disease experience occupation.

OBJECTIVE: Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care. METHOD: Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK. RESULTS: The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss. SIGNIFICANCE OF RESULTS: Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

A Web-based survey of midwives' perceptions of women using the Internet in pregnancy: a global phenomenon.

OBJECTIVES: to ascertain the views of midwives on Internet use in midwifery practice, to elicit the extent and nature of pregnant women's use of the Internet from a midwifery perspective, and to explore midwives' perceptions of pregnant women using the Internet as an information source. SETTING: 12 online midwifery discussion fora. DESIGN: a cross-sectional exploratory descriptive Web-based survey. METHODOLOGY: midwives from midwifery e-discussion groups who had direct contact with pregnant women were invited to share their experiences of working with women who presented them with information gleaned from the Internet. PARTICIPANTS: an international sample of 303 midwives accessed and completed a Web-based questionnaire. RESULTS: the vast majority of midwives who responded (89%, n=271) perceived an increase in Internet use among pregnant women. Midwives reported that women used the Internet to obtain information on a broad range of pregnancy-related topics. Most (86%, n=260) had experience of a pregnant woman discussing information from the Internet with them in the past year. A concerned minority (19%, n=49) regarded the information retrieved by the women to be either 'not very' or 'not at all' accurate. Two-thirds (67%, n=174) considered that the information had an effect on how the woman thought her pregnancy should be managed. KEY CONCLUSIONS: this study provides evidence of pregnant women accessing the Internet to obtain information related to their pregnancy. Midwives recognise that pregnant women are increasingly using the Internet as an accessible resource for information to inform decision-making in pregnancy. This presents a number of challenges for midwives. IMPLICATIONS FOR PRACTICE: midwives need to keep up-to-date with the latest knowledge. Midwives' skills in Internet use need to be developed so that they can be effective and competent partners in supporting post-modern women.

Community-based interventions to reduce falls among older adults in Taiwan - long time follow-up randomised controlled study.

AIMS: The aim of the study was to examine the effects of different interventions that are used to prevent falls. These were education, Tai Chi Chuan and education plus Tai Chi Chuan; the study involved a five-month implantation period and a one-year follow-up period. BACKGROUND: With advancing years, a fall can be very serious and an increased number of falls/re-falls among older adults has been noted. Hence, both education about risk factors and balance exercise programs such as Tai Chi Chuan may help to prevent falls. DESIGN: This study adopted a randomised case-controlled design with a two-by-two factorial approach. It included three intervention groups and one control group in a community-based program. METHODS: Cluster-randomised sampling was used and four villages in Taiwan City were selected. Three interventions groups and one control group were involved over five-months from late July 2000-January 2001 and each participant was followed up one year later (n = 163). RESULTS: The intervention involving education plus Tai Chi Chuan resulted in a statistically significant reduction in falls and the risk factors of falls over the five-month intervention. After one-year follow-up, participants receiving any one of the interventions showed a reduction in falls compared with the control group. CONCLUSIONS: Tai Chi Chuan was able to improve gait balance significantly. Education may also help participants to prevent falls-by eliminating related risk factors present in their environment. However, it was found that at the one-year follow-up, any one of the three interventions had reduced falls significantly. RELEVANCE TO CLINICAL PRACTICE: The prevention of falls among older adults seems to needs multiple interventions. Education plus Tai Chi Chuan has both an immediately and a long-term effect and it is possible that a shorter intervention period using this approach would also be successful.

An evidence base for a palliative care chaplaincy service in Northern Ireland.

Palliative care encompasses spiritual as well as physical, social and psychological aspects. Spiritual care has been identified as a key concern of dying patients. During an audit of the Northern Ireland Hospice chaplaincy service against the national Standards for Hospice and Palliative Care Chaplaincy (2003), 62 patients' spiritual needs along with their interactions with the hospice chaplains were assessed by using a questionnaire survey and reviewing data recorded on their pastoral care notes. Findings suggest that the Standards were useful for assessing and addressing spiritual needs. Access to the chaplaincy service (Standard 1) was partially met and Standard 2's spiritual criteria were fully met. The participants, of whom 92% had a faith in God or a Higher Being, highlighted their top six spiritual needs as: to have the time to think; to have hope; to deal with unresolved issues; to prepare for death; to express true feelings without being judged; to speak of important relationships. The majority of the participants (82%) felt their spiritual needs had been addressed and viewed their interaction with the chaplaincy service positively. Recommendations were made relating to improve communication of chaplaincy services.