Abstract Background Women with intellectual disability (ID) are surviving to the age group at greatest risk of developing breast cancer (50–69 years). These women are more likely to experience a greater number of risk factors placing them at an advanced threat of developing breast cancer. However, as a result of cognitive deficits and communication difficulties these women are dependent upon staff to support them to attend the breast screening clinics. Aim The aim of this paper was to examine how community nurses and residential staff support women with ID to access breast screening services. Methodology Six focus groups were held with community nurses and residential staff who work in the field of ID in one region of the UK. The focus groups were tape recorded and the transcriptions were subjected to a thematic content analysis. Findings Although many of the participants recognised the risk factors and signs/symptoms of breast cancer, there was still a deficit of knowledge. Both positive and negative experiences of women with ID attending for breast screening were reported; however, greater discussion focused on the latter. The participants identified ‘ a lack of health educational material’ and also negative ‘emotions, attitudes and physical barriers’ as inhibiting factors for attendance. Discussion This paper highlights the need for developing a health promotion programme for women with ID focusing on breast awareness and information on screening, and also healthier lifestyles. Breast awareness via visual checks was identified for women with ID who refused to attend the breast clinics; however, issues of informed ‘consent’ and ‘vulnerability’ were raised for staff and also family carers having to undertake these checks. Development of user‐friendly health educational literature using ‘pictures, symbols, signs’ and simplified words should be accessible to all ID staff, healthcare staff, and also women with ID.
Background: A key aspect to the provision of palliative care is maintaining the dignity of the individual being cared for. Nurses working in the community setting need knowledge and skills to meet the needs of individuals who need palliative care and their families. Dignity Care Intervention Ireland is a community-based pilot project designed to implement a dignity care intervention for individuals with a life-limiting condition living in their own home. As part of the overall intervention, an education programme was developed for nurses working in the community. Method: Completion of a locally-designed questionnaire pre- and post-education. Results: Nurses working in the community setting welcomed and highly valued the Dignity Care Intervention Ireland education programme. There was an overall improvement in the understanding of palliative care for both groups and improved understanding of the principles of palliative care, with self-evaluated competence to apply these principles in daily clinical practice. Conclusion: The importance of education about palliative care to support the delivery of dignity-preserving care cannot be underestimated. Ensuring nurses have the requisite knowledge will enhance future practice development and subsequently improve care for patients with life-limiting conditions and their families.
Objectives: To synthesize evidence regarding Chinese diasporas’ understanding, experience, and factors influencing engagement with advance care planning. Methods: A systematic integrative review using content analysis. Seven electronic databases (Embase, CINAHL, SCOPUS, Web of Science, Medline (OVID), PsycINFo, and The Cochrane Library) and gray resources were searched for studies from January 1990 to March 2022. Study quality appraisal was undertaken. Results: 27 articles were identified and rated as moderate to good. Two overarching and interrelated themes were identified, “Awareness and knowledge” and “Engagement with advance care planning.” There are low levels of awareness, knowledge and engagement with advance care planning for Chinese diaspora. Findings highlight that this is influenced by two key factors. First, the geographic context and legal, cultural, and social systems within which the Chinese diasporas are living act as a potential catalyst to enhance awareness and engagement with advance care planning. Second, aspects of Chinese diasporas’ original culture, such as filial piety and a taboo surrounding death, were reported to negatively affect the promotion and engagement of advance care planning. Significance of Results: Chinese diasporas are intermediaries between two divergent cultures that intertwine to strongly influence engagement with advance care planning. Hence, a bespoke culturally tailored approach should be accommodated in future research and practice for Chinese communities in multicultural countries to further advance palliative and end-of-life care awareness among this group.
Given the increase in the number of deaths within long-term care facilities (LTCFs), the need for palliative and end-of-life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development.To synthesise the current literature on palliative and EOL care educational interventions for staff working in LTCFs and identify barriers to, and facilitators of, intervention implementation.The study used an integrative review framework wherein indexed databases, namely, CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, Cochrane Library and Japan Medical Abstract Society, were systematically searched for studies published in English and Japanese between 2007 and 2019. Search terms that are related to palliative care, LTCF, and education were combined to increase search sensitivity. The quality of the papers was assessed using Joanna Briggs Institute Critical Appraisal Tools and the Mixed-Methods Appraisal Tool.A total of 52 studies were included in the review. Our results suggested that although studies in this area and setting have been evolving, suboptimal developmental research and educational practices, global variability and unstandardised approaches to education and lacking viewpoints from service users have remained. Barriers to intervention implementation were also reported due to the specific characteristics of LTCFs, which include high staff turnover and considerable variation in professional skills and experience.Given the different LTCF types, systems and policies across each country or region, further research on standardised educational interventions with contextual considerations using large-scale studies with robust methodology is needed to meet the increasing demand for palliative and EOL care among the global ageing population.Palliative and EOL care educational intervention for LTCF staff need to include more consideration of context, organisational culture and the user involvement throughout the process of education and research to enhance the quality of care in this complex setting.
Background: Evidence underpinning palliative rehabilitation is needed. APRIL was a sixweek home based intervention comprising physical activity (walking and musclestrengthening) and nutritional advice supported by weekly phone review and personalisedgoal setting. This intervention aimed to enhance quality of life, promote and maintainphysical function and relieve dietary symptoms.Aim: To develop and explore a novel rehabilitation intervention of physical activity andnutritional guidance for people with advanced inoperable non-small cell lung cancer(NSCLC) receiving palliative systemic therapy.Methods: The MRC Framework for Developing and Evaluating Complex Interventions wasused to design this multiphase mixed methods cohort study. APRIL was developed based onconsensus agreement. EORTC QLQ-C15-PAL, MFI-20, PGSGA and functional outcomemeasurements (6MWT, STS60) were undertaken at baseline, intervention end and six weekspost completion. Semi structured interviews with patients and healthcare professionals(HCPs) explored experiences of APRIL; these were thematically analysed.Results: Forty nine patients receiving palliative systemic therapy for NSCLC were screenedFebruary to December 2013. Of the 19 eligible patients, seven declined and one becameineligible pre consent. Two patients withdrew before week six and one before week 12leaving a final cohort of eight. Qualitative findings are presented under the themes ‘Livingwith and beyond an advanced cancer diagnosis: experiences of the APRIL Programme’ forpatient participants and ‘Palliative Rehabilitation: exploring the concept’ for HCPs.Conclusion: The palliative rehabilitation approach of APRIL was valued by participantsinvolved in this feasibility cohort study and HCP attitudes to palliative rehabilitation altered.Robust evaluation studies within this population are compromised by the ability to recruitsufficient numbers and with issues arising from missing data, response shift and attrition.
Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. Design: Scoping review Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
'%3e%3cpath fill='%23012169' d='M0 0v30h60V0z'/%3e%3cpath stroke='%23fff' stroke-width='6' d='m0 0 60 30m0-30L0 30'/%3e%3cpath stroke='%23C8102E' stroke-width='4' d='m0 0 60 30m0-30L0 30' clip-path='url(%23b)'/%3e%3cpath stroke='%23fff' stroke-width='10' d='M30 0v30M0 15h60'/%3e%3cpath stroke='%23C8102E' stroke-width='6' d='M30 0v30M0 15h60'/%3e%3c/g%3e%3c/svg%3e)
