RESUMEN
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.
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Demencia , Cuidado Terminal , Humanos , Cuidados Paliativos/métodos , Demencia/epidemiología , Demencia/terapia , Cuidadores , Cuidado Terminal/métodos , InglaterraRESUMEN
BACKGROUND: While Therapeutic Recreation (TR) camp programmes have been extensively analysed, less is known about hospital outreach programmes (HOPs). This study examined parent, volunteer and health care provider (HCP) perceived core features and outcomes of a hospital-based TR programme for children with serious illness. METHODS: Participants were either 1) a HCP within a hospital setting, 2) a volunteer with HOP, or 3) the parent of a child with serious illness. Semi-structured interviews were completed remotely and analysed using a reflexive thematic approach. RESULTS: Nineteen participants (5 parents, 5 HCPs, 9 volunteers) were interviewed. Core features of the HOP included the importance of playas an anchor to the present moment and as a vehicle to challenge and grow, creation of a safe space allowing child and family needs to be met, and meeting families where they are. Perceived outcomes of attending the HOP included changing the focus from being sick to being a child, and developing a sense of solidarity amongst peers for both children and parents. CONCLUSIONS: These results highlight the important contribution of the HOP in supporting children regain a sense of self that is greater than illness, allowing them to reconnect with their values and express themselves, while supporting growth and self-esteem.
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Familia , Padres , Niño , Humanos , Personal de Salud , Recreación , Hospitales , Investigación CualitativaRESUMEN
AIM: To explore the mobilization of nurses/midwives in a designated hospital group in Ireland during a global pandemic. BACKGROUND: The recent global pandemic has resulted in the large-scale worldwide mobilization of registered nurses and midwives working in the acute care sector. There is a dearth of literature reporting the mobilization of this professional workforce. METHOD: Mixed-methods design using an electronic survey and facilitated discussion across one Irish hospital group. RESULTS: Eight of 11 hospitals responded to the survey. There was a 2% vacancy rate prior to the pandemic. Mobilization included reconfiguration of clinical areas and redeployment of 9% of the nursing/midwifery workforce within 2 weeks of the pandemic. A total of 11% (n = 343) of nurses/midwives were redeployed in 3 months. Nurses/midwives required re-skilling in infection prevention control, enhancement of critical care skills and documentation. CONCLUSIONS: Three key areas were identified to enable the nursing workforce readiness. These are referred to as the three 'R's': Reconfiguration of specific resources, Redeployment of nurses to dedicated specialist areas and Re-skilling of nurses to safely care for the patients during the pandemic. IMPLICATIONS FOR NURSING MANAGEMENT: A centralized approach to reconfiguration of clinical areas. Redeployment is enabled by closing non-essential departments. Hands-on re-skilling and reorientating staff are essential.
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Partería , Femenino , Hospitales , Humanos , Irlanda , Pandemias/prevención & control , Embarazo , Recursos HumanosRESUMEN
BACKGROUND: The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
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Servicios de Salud del Niño/organización & administración , Prestación Integrada de Atención de Salud , Discapacidades del Desarrollo/terapia , Cuidados Paliativos/organización & administración , Actitud del Personal de Salud , Preescolar , Técnica Delphi , Familia , Investigación sobre Servicios de Salud , Humanos , Encuestas y CuestionariosRESUMEN
Background: Out-of-hospital cardiac arrest (OHCA) is a major cause of premature mortality. Survival is possible when timely cardiopulmonary resuscitation and defibrillation are available in the community. GPs are well placed to provide early OHCA care and significantly increased rates of survival are achieved when GPs participate in resuscitation. A novel project alerts volunteer GP first responders to nearby OHCAs in Ireland.Objectives: To explore the reasons why GPs volunteer to be OHCA first responders and their experience of participation.Methods: A qualitative study involving in-depth, semi-structured interviews followed by thematic analysis was undertaken in 2017/18. Fourteen GPs from differing geographical areas in Ireland, who volunteered as OHCA first-responders were recruited to participate by purposive methods.Results: GP participation in OHCA voluntary first response was understood as a function of GPs relationship to the community, their ability to manage competing demands in their personal and professional lives and also specific participatory gains. GPs expressed both altruistic motivations and a sense of obligation. GPs described a complex, multifaceted role in providing OHCA first response; they derived an inherent sense of satisfaction in delivering potentially life-saving interventions but also in the provision of holistic, compassionate end-of-life care for patients and their families. Participation was not without psychosocial risk for GPs.Conclusion: GPs volunteer to provide early OHCA emergency care because of their relationship to the community. Care provided is complex and includes both resuscitation and end-of-life care.
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Socorristas , Médicos Generales , Motivación , Paro Cardíaco Extrahospitalario/terapia , Voluntarios , Actitud del Personal de Salud , Reanimación Cardiopulmonar , Desfibriladores , Cardioversión Eléctrica , Sistemas de Comunicación entre Servicios de Urgencia , Servicios Médicos de Urgencia , Femenino , Humanos , Irlanda , Masculino , Investigación Cualitativa , Envío de Mensajes de TextoRESUMEN
OBJECTIVES: To assess the impact of a multi-tiered oral health education programme on care staff caring for people with intellectual disability (ID). METHODS: Postal questionnaires were sent to all care staff of a community-based residential care service for adults, randomly assigned to control and intervention groups. A specifically developed training programme was delivered to residential staff nominees, who then trained all staff within the intervention group. The control group received no training. Post-test questionnaires were sent to both groups. Paired-samples t-test was used to compare oral health-related knowledge (K) and behaviour, attitude and self-efficacy (BAS) scores. RESULTS: Of the initial 219 respondents, 154 (response rate between 40% and 35.8%, with attrition rate of 29.7% from baseline to repeat) returned completed questionnaires at post-test (M=8.5 months, range=6.5-11 months). Control and intervention groups were comparable for general training, employment and demographic variables. In the intervention group, mean Knowledge Index score rose from K=7.2 to K=7.9 (P<0.001) and mean BAS scale score rose from BAS=4.7 to BAS=5.4 (P<0.001). There was no statistically significant increase in mean scores from test (K=7.0, BAS=4.7) to post-test (K=7.2, BAS=4.9) for the control group. CONCLUSIONS: Mean scores regarding knowledge, attitude, self-efficacy and reported behaviour increased significantly at 8.5 months in staff where training was provided. The results indicate that a multi-tiered training programme improved knowledge, attitude, self-efficacy and reported behaviour amongst staff caring for people with ID.