Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals.

BACKGROUND: Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. METHODS: Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields". Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. RESULTS: Three themes emerged - healthcare professionals' discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. CONCLUSION: Healthcare professionals' sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions.

Effectiveness and cost-effectiveness of out-of-hours palliative care: a systematic review.

Background: Out-of-hours palliative care is a priority for patients, caregivers and policymakers. Approximately three quarters of the week occurs outside of typical working hours, and the need for support in care of serious and terminal illness during these times is commonplace. Evidence on relevant interventions is unclear. Aim: To review systematically the evidence on the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and costs and cost-effectiveness. Methods: A systematic review of peer-reviewed and grey literature was conducted. We searched Embase, MEDLINE [Ovid], Cochrane Library, CINAHL, Allied and Complementary Medicine [Ovid], PsycINFO, Web of Science, Scopus, EconLit (Ovid), and grey literature published between 1 January 2000 and 12 th November 2019. Studies that comparatively evaluated the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and on costs and cost-effectiveness were eligible, irrespective of design. Only English-language studies were eligible. Two reviewers independently examined the returned studies at each stage (title and abstract review, full-text review, and quality assessment). Results: We identified one eligible peer-reviewed study, judged as insufficient quality. Other sources returned no eligible material. The systematic review therefore included no studies. Conclusions: The importance of integrated, 24-hour care for people in line with a palliative care approach is not reflected in the literature, which lacks evidence on the effects of interventions provided outside typical working hours. Registration: PROSPERO CRD42018111041.

Nursing in an age of multimorbidity.

BACKGROUND: A changing sociodemographic landscape has seen rising numbers of people with two or more long-term health conditions. Multimorbidity presents numerous challenges for patients and families and those who work in healthcare services. Therefore, the nursing profession needs to understand the issues involved in supporting people with multiple chronic conditions and how to prepare the future workforce to care for them. METHODS: A descriptive, exploratory study was used to examine the future of nursing in an age of multimorbidity. An hour-long Twitter chat was organised and run by the Florence Nightingale Foundation Chairs of Clinical Nursing Practice Research to discuss this important area of practice and identify what needs to be done to adequately upskill and prepare the nursing profession to care for individuals with more than one long-term illness. Questions were formulated in advance to provide some structure to the online discussion. Data were collected and analysed from the social media platform using NVivo and an analytics tool called Keyhole. Descriptive statistics were used to describe participants and thematic analysis aided the identification of key themes. RESULTS: Twenty-four people, from a range of nursing backgrounds and organisations, took part in the social media discussion. Five themes encompassing coping with treatment burden, delivering holistic care, developing an evidence base, stimulating learning and redesigning health services were seen as key to ensuring nurses could care for people with multimorbidity and prevent others from developing chronic health conditions. CONCLUSIONS: Multimorbidity is a pressing health issue in today's society. Changes in nursing research, education and practice are required to help the profession work collaboratively with patients, families and multidisciplinary teams to better manage and prevent chronic illness now and in the future.

Sláintecare - A ten-year plan to achieve universal healthcare in Ireland.

In May 2017, an Irish cross-party parliamentary committee published the 'Houses of the Oireachtas Committee on the Future of Healthcare "Sláintecare" report'. The report, known as 'Sláintecare', is unique and historic as it is the first time there has been a cross-party political consensus on major health reform in Ireland. Sláintecare sets out a high level policy roadmap to deliver whole system reform and universal healthcare, phased over a ten year period and costed. Sláintecare details reform proposals which, if delivered, will establish; a universal, single-tier health service where patients are treated solely on the basis of health need; the reorientation of the health system 'towards integrated primary and community care, consistent with the highest quality of patient safety in as short a time-frame as possible'. Sláintecare has five interrelated components: population health; entitlements and access to healthcare; integrated care; funding; and implementation. In this article, the authors use documents in the public domain (parliamentary reports, public hearings, submissions to the Committee, media coverage, the final report of the Committee, speeches by Committee members) to describe the policy process and the main contents of the proposed Sláintecare reforms. It is too soon tell if the political consensus in the policy formation can hold for its implementation.

Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives.

PURPOSE OF REVIEW: The aim of the review was to explore patient and family caregiver perspectives on key issues for ensuring quality of end-of-life care for people with chronic obstructive pulmonary disease (COPD). The growing evidence on the value of specialist palliative care services demonstrates significant improvements in treatments and provisions; however, much of the literature is generic in nature or centred on people with a cancer diagnosis. In this review, we examine the literature to ascertain the views and needs of patients and carers affected by advanced COPD, a highly debilitating condition that can have a profoundly negative impact on the quality of end-of-life experience. RECENT FINDINGS: A total of 19 papers were included in the review. The main themes in the literature were Holistic Care, Illness Trajectory and Technology. SUMMARY: Areas of unmet need emphasized across physical, psychosocial and spiritual domains were identified, particularly in relation to appropriate and timely conversations. Positive developments in the care and treatment of advanced COPD include the use of the STIOLTO Respimat inhaler, a brief educative and psychosocial intervention based on cognitive-behavioural therapy, and high-intensity exercise training. There is some evidence regarding the use of technology in end-stage COPD.

Evaluating a dignity care intervention for palliative care in the community setting: community nurses' perspectives.

AIMS AND OBJECTIVES: To evaluate a dignity care intervention provided by community nurses seeking to address dignity concerns for people with advanced and life-limiting conditions. BACKGROUND: Evidence would suggest that dying people fear a loss of dignity and a central focus of palliative care is to assist people to die with dignity. Whilst community nurses have a key role to play in the delivery of palliative care, specific interventions for dignity are lacking. DESIGN: A mixed methods study using online survey and focus group interviews and thematic analysis to examine data. METHODS: Twenty four community nurses implemented the dignity care intervention for people with advanced and life-limiting conditions were recruited from four pilot sites across Ireland. Four focus group interviews and on line survey were conducted between March-June 2015. RESULTS: The community nurses found the dignity care intervention useful. It helped the nurses to provide holistic end-of-life care and assisted in the overall assessment of palliative care patients, identifying areas that might not otherwise have been noted. Whilst it was a useful tool for communication, they noted that it stimulated some emotionally sensitive conversations for which they felt unprepared. CONCLUSIONS: Implementing the dignity care intervention in practice was challenging. However, the dignity care intervention facilitated holistic assessment and identified patient dignity-related concerns that may not have been otherwise identified. Further support is required to overcome barriers and enable dignity-conserving care. RELEVANCE TO CLINICAL PRACTICE: Ensuring dignity is a key aspect of palliative and end-of-life care; however, community nurses may not feel equipped to address this aspect of care. Implementing a dignity care intervention can assist in identifying patient dignity-related concerns and provision of holistic care. Community nurses need more training to assist in difficult conversations relating to dignity and end-of-life care.

Dignity-conserving care in palliative care settings: An integrative review.

AIMS AND OBJECTIVES: To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future research. BACKGROUND: Research suggests that dignity is welcomed by those receiving palliative and end of life care. However, as dignity is a subjective term, it is not always explicit how this may be employed by nurses. Given that the preferred place of care for patients with palliative care needs is the home, the issue of dignity may be particularly important for community nurses. Therefore, synthesising evidence of dignity-conserving care for community nurses caring for people with palliative care needs provides clarity in a complex area of palliative care research. DESIGN: Integrative literature review. METHOD: The review involved key bibliographic and review databases CINAHL, MEDLINE, EMBASE, ASSIA and PsycInfo. Medical Subject Headings and free terms were undertaken for articles published from January 2009-September 2014 and retrieved papers were assessed against inclusion criteria. Final included articles were reviewed for reported dignity-conserving care actions, which were classified under nine themes of the Dignity Model. RESULTS: Thirty-one articles were included. Nine Dignity Model themes were used to classify care actions: Level of Independence; Symptom Distress; Dignity-Conserving Perspectives; Dignity-Conserving Practices; Privacy Boundaries; Social Support; Care Tenor; Burden to Others; and Aftermath Concerns. Reported care actions included listening, conveying empathy, communication and involving patients in care. CONCLUSION: Care actions could be classified under most of Dignity Model themes. However, there were less reported care actions related to Level of Independence and Aftermath Concerns, which meant that these had to be formulated independently. Future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care that addresses these specific themes. RELEVANCE TO CLINICAL PRACTICE: Synthesising the available evidence of dignity-conserving care identifies evidence-based care actions and provides guidance to nurses in clinical practice caring for patients with palliative care needs. Future opportunities for research are identified to guide promotion of dignity in palliative care.

Integrating palliative care in lung cancer: an early feasibility study.

AIM: The aim of this preliminary study was to evaluate the feasibility of conducting an effectiveness trial of early access to palliative care services for people with lung cancer through use of an integrated outpatient model. METHODS: Newly diagnosed patients with lung cancer receiving palliative-intent treatment or best supportive care treatment were recruited over a 5-month period from one out-patient clinic in Scotland. Patients were offered a clinical review appointment with a palliative medicine consultant at two time points: baseline and 12 weeks later. Prior to each appointment patients completed three outcome measures addressing symptom severity, wellbeing, and health-care needs. One-to-one interviews were also conducted to explore patients' experiences of being involved in the study. RESULTS: Three patients participated in the study. The main reasons for low recruitment were patients' deteriorating condition and unwillingness to undertake extra hospital visits. However, qualitative data indicated that the participants found this extra layer of supportive care useful in identifying and managing their needs, as well as enabling future planning. CONCLUSION: Further testing is needed to ascertain the feasibility of conducting a trial of integrating early access to palliative care services into routine practice for people with lung cancer.

Evaluation of the Dignity Care Pathway for community nurses caring for people at the end of life.

BACKGROUND: People nearing the end of life fear loss of dignity, and a central tenet of palliative care is to help people die with dignity. The Dignity Care Pathway (DCP) is an intervention based on the Chochinov theoretical model of dignity care. It has four sections: a manual, a Patient Dignity Inventory, reflective questions, and care actions. METHOD: The feasibility and acceptability of the DCP were evaluated using a qualitative design with a purposive sample of community nurses. Data was collected from April to October 2010 using in-depth interviews, reflective diaries, and case studies and then analysed using framework analysis. RESULTS: The DCP was acceptable to the community nurses, helped them identify when patients were at the end of life, identified patients' key concerns, and aided nurses in providing holistic end-of-life care. It requires the nurse to have excellent communication skills. Some of the nurses found it hard to initiate a conversation on dignity-conserving care. CONCLUSION: The DCP helps nurses to deliver individualised care and psychological care, which has previously been identified as a difficult area for community nurses. All of the nurses wished to continue to use the DCP and would recommend it to others.