From the ground up: stakeholders' representations of the Irish longitudinal study on ageing (TILDA).

Healthy ageing, which is the target of life' s later developmental stage, can be achieved through building a wise perspective towards life and existence. However, it may not be achievable for older people when the societal sources are limited. The TILDA project aimed to evaluate the associated factors with healthy ageing and to transfer that knowledge into practice. Hence, determining the perspectives of older people support and advocacy organisations on the enablers and facilitators of the healthy ageing strategies of TILDA is essential to gain a better understanding of the project and plan future strategies. This study aimed to investigate how the TILDA project has influenced or impacted upon these organisations from education, policy, or practice perspectives. The participants (n = 15) included in the study's sample were reached through representative organisations acting to support older people in the Republic of Ireland. Semi-structured interviews were conducted online via Zoom. A systematic thematic data analysis procedure was followed, and three themes emerged from the qualitative data, revealing the perceptions of participants about the TILDA project: (1) Limitations of TILDA, (2) Contributions of TILDA, and (3) Future recommendations for TILDA. In conclusion, among the disadvantages of TILDA, the most significant is not being representative and visible enough; it is evident that it is pivotal to develop a more inclusive culture of TILDA with close cooperation and effective marketing strategies. It is also apparent that TILDA has several advantages that include providing insights into ageing and rich data to plan future support for older people.

Interprofessional supervision among allied health professionals: a systematic scoping review.

Clinical supervision typically occurs between clinicians who are trained in the same discipline, and this assumption is present across much of the relevant literature. However, the use of interprofessional supervision (IPS), wherein clinicians do not share the same discipline, has increased in recent years. As IPS increases in usage, it is key that the implications of this approach are explored. In order to map the existing evidence, a scoping review was conducted to explore what is known about the use of IPS across five allied health professions (psychology, speech and language therapy, occupational therapy, physiotherapy and social work). A systematic literature search of four electronic databases was conducted, with 27 articles meeting the inclusion criteria. The data were analyzed using thematic synthesis. Six key themes were identified relating to factors impacting the appropriateness of IPS, necessary steps in the IPS process, and impacts of IPS for clinicians. Limited application of standardized tools and theoretical frameworks within the existing research was highlighted. The findings identified within this review present a broad overview of the existing research relating to IPS, which can be used to inform future research in this area.

Adapting Complicated Grief Therapy for Use With People With Intellectual Disabilities: An Action Research Study.

BACKGROUND: There is established evidence of complicated grief among people with an intellectual disability. This paper describes the process of adapting complicated grief therapy (CGT) for this population. METHOD: Action research documented the adaptation of CGT. Qualitative methods included analysing meeting notes, reflective interviews with two members of the team involved in adapting the materials, and interviews with six professionals working in disability settings who reviewed the adapted materials. RESULTS: Key processes included adapting the standardised tools that form part of CGT and developing adapted approaches to abstract concepts related to death, dying and bereavement. Key therapeutic components such as imaginal revisiting and the role of significant others required adaptation for implementation with people with intellectual disabilities. CONCLUSION: The importance of adapting evidence-based therapies for people with intellectual disabilities is emphasised. This research provides an adapted form of an established therapy for piloting with this population.

Exploring Funeral Directors' Experience and Perceived Impact of Providing Funeral Services During COVID-19 Restrictions.

The importance of ritual/ceremony following bereavement is well documented, however restrictions during the COVID-19 pandemic impacted the freedom to bury loved ones according to beliefs/traditions. This study explores the experiences of staff providing funeral services during COVID-19 and considers the implications for supporting bereaved families. Fifty-eight staff (male, 72.4%; n = 42) from 17 counties in Ireland, completed a self-report survey assessing perceived impact of COVID-19, confidence providing services, and challenges and supports for practice during this time. Quantitative findings suggest moderate confidence in service provision and low perception of negative impact from COVID-19, while qualitative results highlight a contrast between a feeling of under-recognition at a policy level and a sense of being appreciated by the public. This study highlights the evolving role of the funeral sector in Ireland in supporting the bereaved, and the potential to capitalise on a genuine interest in contributing more to support beyond the funeral.

The Oral Symptom Assessment Scale (OSAS): criterion validation with the EORTC QLQ-OH15 and reliability testing.

PURPOSE: The aim of this study was to investigate the criterion validity and reliability of the Oral Symptom Assessment Scale (OSAS) in patients with advanced cancer receiving specialist palliative care. METHODS: To examine criterion validity, participants completed the OSAS, EORTC QLQ-C30 and EORTC QLQ-OH15. Twenty-four hours later participants repeated the OSAS to investigate test-retest reliability. RESULTS: 54 participants were recruited (median age 70; range: 35- 93 years). 51 complete datasets were obtained. Cohen's kappa test was used to evaluate the agreement for the presence / absence of symptoms on the OSAS on the first and second days (test-retest reliability). This analysis showed values of moderate and higher for agreement for all symptoms. All kappa values were statistically significant. The test-retest reliability for symptom severity, frequency and distress was assessed using Intraclass Correlation Coefficient. Spearman's rank correlation coefficients were used to evaluate agreement between similar questions on the OSAS from day one and the EORTC QLQ-OH15 also on day one to examine criterion validity. CONCLUSION: This study supports the validity of the OSAS, and provides evidence for the reliability of this novel oral symptom assessment tool, in patients with advanced cancer. Further research is needed to corroborate the findings of this study. TRIAL REGISTRATION: CancerTrials.gov registry registration no.: PM202166.

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.

The perceived effects of COVID-19 while living with a chronic illness.

INTRODUCTION: A diagnosis of chronic illness posed a serious threat to people during the recent COVID-19 pandemic. People with chronic illnesses were faced with increased mortality and reduced access to healthcare. Self-care is the process of maintaining health and managing a chronic illness. Nurses working in specialist services provide healthcare education to people with chronic illnesses. Access to these nurses was decreased during periods of the COVID-19 virus escalation due to the reconfiguration of services and redeployment of nurses. The purpose of the research was to learn from the experiences of people with a chronic illnesses in self-care behaviors and accessing altered healthcare services to inform future practices. DESIGN: A population survey design. METHODS: A mixed methods survey was designed, combining validated questionnaires and scales with open-ended questions. A convenience sample was utilized via using social media platforms. Data analysis included descriptive and inferential statistics. Content analysis was used to analyze open-ended responses. RESULTS: There were 147 responses, with approximately half reporting no changes in face-to-face healthcare contact, 41% reporting decreased contacts and 12% increased contacts. Non-face-to-face contacts were reduced by almost 9%, did not change by almost 60%, while 33% indicated an increase. Participants reported mixed perceptions in contact with healthcare providers during restrictions. In the Patient Assessment of Chronic Illness Care and the Self-Care of Chronic Illness scales, participants scored statistically lower scores than in previous studies. Participants indicated that public health restrictions negatively impacted their confidence, created challenges with re-engaging and that access to care was more difficult. CONCLUSION: This research highlights the importance of providing continued support to people with chronic illness irrespective of other challenges to healthcare services. A structured approach to virtual self-care education is required. CLINICAL RELEVANCE: This research concluded that the experience of access to one healthcare professional as opposed to diverse multidisciplinary input was similar for a number of chronic illnesses groups of people during the COVID-19 pandemic. There was an altered dynamic of virtual contacts with healthcare providers and a lack of confidence interpreting what monitoring was required by people with a chronic illnesses due to a lack of preparedness for virtual healthcare delivery.

Supporting Social Inclusion in Neighbourhoods of Adults with Intellectual Disabilities: Service Providers' Practice Experiences.

Deinstitutionalisation has increased the likelihood of adults with intellectual disabilities residing in neighbourhoods either in staff-supported accommodation or in their family home. However, it raises the question of whether national policies on disability have translated into practice actions by service providers that result in positive social inclusion outcomes for individuals. This study examined the practice initiatives supporting social inclusion in neighbourhoods in specialist state-funded service providers for adults with intellectual disabilities. Using a mixed methods design, CEOs/service leaders of 40 organisations completed an online survey. Follow-up interviews were completed with a randomised sample. Shifting towards new service models and strategic links with mainstream organisations were most often mentioned as furthering social inclusion goals. A wide range of service initiatives were reported, with positive outcomes alongside a range of challenges. Service providers play an important role in providing individualised supports that foster local engagement. However, the service context is complex and service leaders have reported many challenges that may impede progress on social inclusion.

Palliative care for older people with dementia-we need a paradigm shift in our approach.

Older people with dementia have multiple palliative care needs, with pain, agitation, dyspnoea, aspiration and pressure ulcers being common and persistent in advanced dementia. Anticipating the person's possible symptoms requires knowledge of the whole person, including the type of dementia, which is problematic when the dementia type is often not documented. A palliative care approach to dementia should look at symptoms across the four pillars of palliative care, but in reality, we tend to over-focus on physical and psychological symptoms, while spiritual and emotional needs can be overlooked, especially around the time of diagnosis, where such needs may be significant. Advance care planning (ACP) is a central tenet of good dementia palliative care, as the person may lose their ability to communicate and make complex decisions over time. Despite this, care planning is often approached too late, and with the person's family rather than with the person; much of the literature on ACP in dementia is based on proxy decision-making for people in residential care. Thus, we need a paradigm shift in how we approach dementia, beginning with timely diagnosis that includes the dementia type, and with services able to assess and meet emotional and spiritual needs especially around the time of diagnosis, and with timely ACP as an integral part of our overall approach.

A scoping review of the evidence for community-based dementia palliative care services and their related service activities.

BACKGROUND: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. METHODS: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. RESULTS: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. CONCLUSIONS: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home.

How blogs support the transfer of knowledge into practice in the field of dementia palliative care: a survey of facilitators and barriers.

BACKGROUND: Blogging can help to maximise the impact of one's work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders' views of blogs as a means to translate research findings. METHODS: A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis. RESULTS: Complete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs "sometimes" (39.1%), with < 19% reading them "often" or "very often". Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. CONCLUSIONS: Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.

Family-centred care in early intervention: A systematic review of the processes and outcomes of family-centred care and impacting factors.

Family-centred care (FCC) has been established as a best practice model for child disability services internationally. However, further empirical support is required to explore the operationalization and efficacy of FCC, in the absence of a universal practice model. This review aimed to identify the key processes and outcomes of FCC in early intervention (EI) settings and the factors that impact FCC. A systemic review was conducted exploring the processes and outcomes of FCC delivered to children predominantly aged 0-6 years with disabilities/suspected disabilities and families as part of EI or early services. The search procedure was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Moher et al., 2009). Narrative analysis of data was guided by Braun and Clarke (2006, 2014). Data were presented as per the standards for reporting qualitative research (SRQR; O'Brien et al., 2014). Forty-two studies were included. The majority (90.5%) outlined the processes of FCC, with 59.5% of studies detailing outcomes. Processes were largely reported as qualitative data and/or subscales of the Measure of Processes of Care (MPOC; King et al., 1995), which were subsequently collated. Findings indicated eight key operational processes and corresponding outcomes. Variables that hinder or facilitate FCC included family/professional characteristics, family/service resources, and parent attitudes, engagement and agency. FCC was largely conceptualized as the application of services to children and their families. Critical perspectives on FCC are discussed. It is hoped this research will contribute to the development of a framework of FCC in EI to inform services provided to young children with complex needs and their families and future research.

Complicated grief knowledge, attitudes, skills, and training among mental health professionals: A qualitative exploration.

The knowledge, attitudes, skills, and training of professionals regarding complicated grief influence their practice. We conducted 30 semi-structured interviews with psychiatrists, psychologists, and counselor/psychotherapists; the preliminary findings were contextualized via interviews with three experts in complicated grief research/practice. Findings suggest that professionals did not substantially rely on research evidence, favoring instead personal and professional knowledge. They expressed concern regarding the possible pathologization of normal grief that might arise from having a diagnosis of complicated grief. Deficits in professional training were evident. A need for an improved culture of collaboration between researchers and practitioners was identified.

Nursing and midwifery workforce readiness during a global pandemic: A survey of the experience of one hospital group in the Republic of Ireland.

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.

Unscheduled healthcare for children with intellectual disabilities: A systematic scoping review.

BACKGROUND: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. METHOD: A five-stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion. RESULTS: A total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence. CONCLUSION: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities.

Camp Draws You Back Into Life Again: Exploring the Impact of a Therapeutic Recreation-Based Bereavement Camp for Families Who Have Lost a Child to Serious Illness.

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had participated in a three-camp cycle of the program over 12-month period, including a subgroup who had also attended a reunion camp. Interviews were also conducted with program staff. Thematic analysis generated key themes relating to the perceived impact which suggest that those engaged in this program perceived positive contributions associated with participation, including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning. This study highlights the areas of impact associated with engagement in a therapeutic recreation-based bereavement intervention, and the potential contribution of wider access to these programs for families whose child has died from serious illness.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

A qualitative study of the needs of older adults with intellectual disabilities.

BACKGROUND: Research indicates that adults with intellectual disabilities are living longer. However, there is limited research on how this affects health and care needs. OBJECTIVE: The present study aimed to examine the health and social care needs of older adults with intellectual disabilities in Ireland using multiple informants. METHODS: Data were gathered from a sample of 20 adults aged 50 years or older (Mean = 59.1, SD = 5.9, range = 50-72; 11 female). The sample included individuals with mild (n = 7), moderate (n = 10) and severe/profound (n = 3) intellectual disabilities. Additional data from keyworkers (n = 19) and family carers (n = 15) provided a more complete understanding of needs. RESULTS: Results revealed some areas of agreement and difference between adults with intellectual disability and their carers regarding the social care, employment, retirement, physical and mental health needs of this population. CONCLUSIONS: The findings of this study have potential implications for the provision of high-quality services for older adults with intellectual disabilities.

Staff and Parent Perspectives on a Therapeutic Recreation-Based Bereavement Camp for Families Whose Child Has Died From Serious Illness.

This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reunion camp. Thirteen parents completed open-ended surveys before and after each camp and six of these also completed interviews after the final camp. Six additional parents completed interviews after the reunion camp. Six staff working with families during the camps were also interviewed. Content analysis of surveys and thematic analysis of interviews revealed the aims, structure, and content of the camp. The findings suggest a model whereby shared experience allows for normalization and offers a nonjudgmental place to share stories, discuss difficulties come together as a family, and create a support network. These findings highlight the value of therapeutic recreation-based bereavement interventions for families whose child has died from serious illness.

Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study.

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.