Nursing - Research Publications
Permanent URI for this collection
Search Results
1 - 10 of 27
-
ItemNo Preview AvailableSupport from healthcare professionals in empowering family carers to discuss advance care planning: A population-based survey(SAGE PUBLICATIONS LTD, 2023-05)BACKGROUND: Family carers have a prominent role in end-of-life care for seriously ill persons. However, most of the advance care planning literature is focused on the role of healthcare professionals. AIMS: To investigate (1) what proportion of family carers discussed advance care planning with their relative and associated socio-demographic and clinical characteristics (2) what proportion received support from healthcare professionals for these conversations, (3) what type of support they received and (4) to what extent the type of support received was considered sufficient. DESIGN/PARTICIPANTS: Population-based cross-sectional survey in Belgium of bereaved family carers of persons with a serious chronic illness (N = 3000) who died 2-6 months before the sample was drawn, identified through three sickness funds. The survey explored support from healthcare professionals for family carers during the last 3 months of the patient's life. RESULTS: Response rate was 55%. The proportion of family carers that engaged in an advance care planning conversation with their relative was 46.9%. Of these family carers, 78.1% received support from a healthcare professional, mostly by doing the advance care planning conversation together (53.8%). Of family carers receiving support from a healthcare professional, 57.4% deemed the support sufficient. CONCLUSION: Many family carers engage in advance care planning conversations with their dying relative. Healthcare professionals often support them by performing the advance care planning conversations together. More insight into how family carers can be supported to conduct these advance care planning conversations, both with and without involvement of healthcare professionals, is necessary.
-
ItemSupporting families of patients who die in adult intensive care: A scoping review of interventions(Elsevier, 2023-10)BACKGROUND: Families who perceive themselves as prepared for an impending death experience reduced psychological burden during bereavement. Understanding which interventions promote death preparedness in families during end-of-life care in intensive care will inform future intervention development and may help limit the burden of psychological symptoms associated with bereavement. AIM: To identify and characterise interventions that help prepare families for the possibility of death in intensive care, incorporating barriers to intervention implementation, outcome variables and instruments used. DESIGN: Scoping review using Joanna Briggs methodology, prospectively registered and reported using relevant guidelines. DATA SOURCES: A systematic search of six databases from 2007 to 2023 for randomised controlled trials evaluating interventions that prepared families of intensive care patients for the possibility of death. Citations were screened against the inclusion criteria and extracted by two reviewers independently. RESULTS: Seven trials met eligibility criteria. Interventions were classified: decision support, psychoeducation, information provision. Psychoeducation involving physician-led family conference, emotional support and written information reduced symptoms of anxiety, depression, prolonged grief, and post-traumatic stress in families during bereavement. Anxiety, depression, and post-traumatic stress were assessed most frequently. Barriers and facilitators to intervention implementation were seldom reported. CONCLUSION: This review provides a conceptual framework of interventions to prepare families for death in intensive care, while highlighting a gap in rigorously conducted empirical research in this area. Future research should focus on theoretically informed, family-clinician communication, and explore the benefits of integrating existing multidisciplinary palliative care guidelines to deliver family conference within intensive care. IMPLICATIONS FOR CLINICAL PRACTICE: Intensive care clinicians should consider innovative communication strategies to build family-clinician connectedness in remote pandemic conditions. To prepare families for an impending death, mnemonic guided physician-led family conference and printed information could be implemented to prepare families for death, dying and bereavement. Mnemonic guided emotional support during dying and family conference after death may also assist families seeking closure.
-
ItemSystematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries(SPRINGER, 2022-12)PURPOSE: Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries. METHOD: The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations. RESULTS: The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad's outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts. CONCLUSION: The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users.
-
ItemSinging for People with Advance Chronic Respiratory Diseases: A Qualitative Meta-Synthesis(MDPI, 2022-09)RATIONALE: Although there remains insufficient evidence regarding singing programs as effective strategies for achieving clinically significant health outcomes, this non-pharmacological intervention appears to be subjectively low-risk and well-tolerated by people with advanced chronic respiratory diseases (CRD). OBJECTIVE: This study sought to examine and synthesize the current qualitative evidence regarding the experiences of participating in singing for breathing programs by people with advanced CRD. METHODS: A meta-synthesis of qualitative data was conducted. Electronic databases (Medline, CINAHL, PsycINFO, and EMBASE) were searched for published qualitative studies reporting the effects of singing programs for adults with advanced CRD and their carers. Primary qualitative data were extracted and analysed, which generated descriptive and analytical themes. RESULTS: Themes identified from seven included studies were: anticipation and reluctance to participate; physical and psychological benefits; new sense of purpose and enjoyment; social connection and achievement; and broad views regarding program structure and content. The themes highlighted changing perspectives before, during and after engaging in the singing program, as participants transitioned from initial anxiety to mastery of their chronic condition as the singing program progressed. Participants, however, raised concerns regarding several singing technicalities, the lack of ongoing support after the singing programs' conclusion and the social impacts of transitioning the sessions online during the COVID-19 pandemic. CONCLUSIONS: This meta-synthesis highlights the positive experiences of people with CRD who participate in singing for breathing programs. Further research, including longitudinal qualitative studies, can provide insight into the acceptability and feasibility of singing programs and inform the broader implementation of the intervention.
-
Item
-
ItemEvaluation of an online toolkit for carers of people with a life-limiting illness at the end-of-life: health professionals' perspectives(CSIRO PUBLISHING, 2021)Carers of people with a life-limiting illness report unmet information, practical, and emotional support needs, and are often unaware of services available to help improve preparedness, wellbeing, and reduce strain. CarerHelp is the first e-health toolkit that focuses on the information and support needs of carers of people with a life-limiting illness at the end-of-life, using a pathway approach. This study investigated the usefulness of CarerHelp, from the perspective of health professionals who care for these people. Through a 10-min online survey, health professionals provided feedback about their user experience and perceived usefulness of the website. Their expert opinion was sought to ascertain whether CarerHelp could increase carers' preparedness and confidence to support the person for whom they are caring and thereby improve carers' own psychological wellbeing. Health professionals also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. Health professionals reported that CarerHelp would increase carers' knowledge of services, confidence to care and ability for self-care. Health professionals endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families.
-
ItemFamily carers research: What progress has been made?(SAGE PUBLICATIONS LTD, 2022-03)
-
ItemImplementability of healthcare interventions: an overview of reviews and development of a conceptual framework(BMC, 2022-01-27)BACKGROUND: Implementation research may play an important role in reducing research waste by identifying strategies that support translation of evidence into practice. Implementation of healthcare interventions is influenced by multiple factors including the organisational context, implementation strategies and features of the intervention as perceived by people delivering and receiving the intervention. Recently, concepts relating to perceived features of interventions have been gaining traction in published literature, namely, acceptability, fidelity, feasibility, scalability and sustainability. These concepts may influence uptake of healthcare interventions, yet there seems to be little consensus about their nature and impact. The aim of this paper is to develop a testable conceptual framework of implementability of healthcare interventions that includes these five concepts. METHODS: A multifaceted approach was used to develop and refine a conceptual framework of implementability of healthcare interventions. An overview of reviews identified reviews published between January 2000 and March 2021 that focused on at least one of the five concepts in relation to a healthcare intervention. These findings informed the development of a preliminary framework of implementability of healthcare interventions which was presented to a panel of experts. A nominal group process was used to critique, refine and agree on a final framework. RESULTS: A total of 252 publications were included in the overview of reviews. Of these, 32% were found to be feasible, 4% reported sustainable changes in practice and 9% were scaled up to other populations and/or settings. The expert panel proposed that scalability and sustainability of a healthcare intervention are dependent on its acceptability, fidelity and feasibility. Furthermore, acceptability, fidelity and feasibility require re-evaluation over time and as the intervention is developed and then implemented in different settings or with different populations. The final agreed framework of implementability provides the basis for a chronological, iterative approach to planning for wide-scale, long-term implementation of healthcare interventions. CONCLUSIONS: We recommend that researchers consider the factors acceptability, fidelity and feasibility (proposed to influence sustainability and scalability) during the preliminary phases of intervention development, evaluation and implementation, and iteratively check these factors in different settings and over time.
-
ItemEffectiveness of a nurse-delivered (FOCUS plus ) 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(BMC, 2021-12-28)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.
-
ItemThe experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study(WILEY, 2018-02)AIM: To explore specialist and generalist palliative care provision for people with non-malignant respiratory disease, in rural and urban areas in the North and Republic of Ireland. BACKGROUND: Globally, palliative care is recommended as an appropriate healthcare option for people with advanced non-malignant lung disease. Yet, there is limited evidence regarding the integration of palliative care for this client group. DESIGN: Qualitative study. METHODS: Convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from two rural and two urban sites on the Island of Ireland. Data were collected throughout 2012 and 2013 through semi-structured interviews with carers of patients with Chronic Obstructive Pulmonary Disease (N = 12), interstitial lung disease (N = 4) or bronchiectasis (N = 1) who had died 3-18 months previously; and four focus groups with healthcare professionals. Data were analysed using a thematic analysis framework. RESULTS: Carers' interviews yielded three overarching themes: (1) lack of preparedness for death, due to ambiguity regarding disease trajectory; (2) lack of consistency in palliative care delivery, in relation with the receipt of generalist and specialist palliative care; and (3) role ambiguity, related to their caregiving role. Focus groups identified two overarching themes: (1) barriers to appropriate palliative care; and (2) the future direction of palliative care for patient with non-malignant respiratory disease. CONCLUSION: The uncertain disease trajectory was not only experienced by carers but also healthcare professionals. Although referral to specialist palliative care services was perceived as increasing, the availability and coordination of generalist and specialist palliative care services were fragmented and varied dependent on geographical location.