Palliative home-based technology from a practitioner's perspective: benefits and disadvantages

This critical review paper explores the concept of palliative home-based technology from a practitioner's perspective. The aim of the critical review was to scope information available from published and unpublished research on the current state of palliative home-based technology, practitioner-focused perspectives, patient-focused perspectives, quality of life, and the implications for clinical practice. Published and unpublished studies were included. An example of one UK patient-centered home-based technology is explored as an exemplar. The evidence suggests that despite the challenges, there are numerous examples of good practice in relation to palliative home-based technology. Improvements in technology mean that telehealth has much to offer people being cared for at home with palliative needs. However, some of the evaluative evidence is limited, and further rigor is needed when evaluating future technology-based solutions innovations

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

Exploring psychosocial interventions for people with dementia that enhance personhood and relate to legacy- an integrative review

Background: Epidemiological predictions suggest that dementia will continue to rise and that this will have social and economic ramifications. Effective interventions, beyond pharmacological management are needed. Psychosocial interventions have largely been investigated in relation to carers of people with dementia, or with regards to their ability to manage dementia symptoms, improve cognition, and reduce challenging behaviour. However, since dementia is a life-limiting illness and people with dementia are at risk of having their personhood compromised, psychosocial interventions should seek to enhance personhood, and offer the potential for the person to leave a legacy. Methods: An integrative review was carried out to identify, assess, appraise and synthesise studies featuring interventions, which relate to both personhood and legacy. Search strategies were developed in key databases: MEDLINE; PsycINFO; Embase; Joanna Briggs Institute; CINAHL; Cochrane Database of Systematic Reviews; ASSIA. Grey literature was also identified through free-text searches. Results: Thirty six articles were included in the final review, these were tabulated and were assessed based on how the intervention related to personhood and legacy. Classification resulted in three themes being identified: Offering aspects of legacy; Acknowledging the person behind the patient; Facilitating meaningful engagement. Generally, personhood aspects of interventions were well reported, but further research is required to explore legacy potential of psychosocial interventions for people with dementia. Conclusion: The integrative review provides an overview and exploration of an under-researched area, and provides directions for future research, which will help expand the evidence base and ultimately help improve patient care for people with dementia and their families

Perceptions of palliative nursing

This thesis describes a three-year study which explored the lived experiences of nurses delivering palliative care, and dying patients receiving palliative care. The aim of the study was to examine the perceptions of patients and nurses regarding palliative care, and in particular, how they described a good palliative care nurse. The study generated interesting and significant findings. The lived experience of dying patients was characterised by maintaining their independence, and remaining in control, even in the latter stages of their illness, as well as wanting to feel safe and secure and being supported by their family and the nurses who were looking after them. Patients wanted palliative nurses to be there for them, by spending time with them, provide comfort, by meeting their needs, and for nurses to listen to their fears. The lived experience of palliative nurses was characterised by effective and ineffective interpersonal communication, the building of therapeutic relationships with dying patients, attempting to control pain and distressing symptoms, endeavouring to work as an effective multi-disciplinary team with their colleagues, and developing knowledge and experience in palliative care. The two most important characteristics of a good palliative nurse, as far as both patients, and nurses, were concerned, was to be interpersonally skilled, in particular the ability to be 'willing to listen', as well as, the need for the nurse to possess personal, humane qualities such as kindness, warmth, compassion and genuineness. Nurses, in particular, perceived that a good nurse should have knowledge, experience and keep up to date via professional development, in addition to, being skilled in controlling pain and distressing symptoms

An end-of-life care nurse service for people with COPD and heart failure: stakeholders' experiences

Background: End-of-life care (EOLC) has historically been associated with cancer care. However, demographic changes indicate that future provision must also cater for other long term conditions (LTC). An EOLC-LTC service, delivered by palliative care nurses, is currently being piloted in one area in the East Midlands with patients with cardiac and respiratory disease. In order to inform future commissioning, it is important to gain the views and experiences of those involved with the service. Aims: This study aimed to explore patients, and their partners, views and experiences of the EOLC-LTC service. Methods: Semi-structured interviews were used as part of a case study design, involving six cases. Each case consisted of the patient, their nominated family member/carer and key healthcare professionals involved in their care as identified by the patient. This paper reports on the findings from the interviews conducted with the six patients and their family member/carers. Data were analysed thematically. Results: From the interviews, the following themes were identified: experiences managing a long term cardio-respiratory condition, the nurse service, building a close/therapeutic relationship and fragmentation and integration. Conclusions: This study has shown that the EOLC-LTC service is welcomed and highly regarded by patients and their family members/carers. Further studies are required to explore the views and experiences of other key stakeholders and to evaluate how well the pilot operates within the wider care pathway

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014–2018

Objectives: To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision. Design: A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results. Data sources: Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus. Eligibility criteria: Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018. Participants: Prisoners, prisoners’ families, prison healthcare staff and other prison staff. Data extraction/synthesis: Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions. Quality appraisal: Two researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal. Results: 23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons. Conclusions: The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified

Living in the moment for people approaching the end of life: a concept analysis

Background 'Living in the moment' is an essential part of dignity-conserving practice in end-of-life care settings. Although living in the moment is important for care at the end of life, from the perspective of both the person and their family, there is no clear conceptual understanding of what it represents. Objective To explore the concept of 'living in the moment' in the context of dignity-conserving care at the end of life. Design A concept analysis. Data sources The databases of Medline, CinAHL, PubMed, Web of Science, PsycINFO, SocINDEX and Cochrane were searched for studies published between 1941 and 2019, and searches of dictionaries and grey literature, as well as hand-searching were conducted, to yield qualitative, mixed methods and systematic reviews published in English, related to the term 'living in the moment'. Method The methods of Walker and Avant were used to identify antecedents, attributes and consequences of the concept of 'living in the moment'. Results The literature review generated a total of 37 papers for this concept analysis. The attributes identified were (1) simple pleasure, (2) prioritising relationships, (3) living each day to the fullest, (4) maintaining normality, and (5) not worrying about the future. The antecedents were (1) awareness of dying, (2) living with life-threatening illness, (3) positive individual growth, and (4) living with an uncertain future. The consequences were (1) a good quality of life, (2) preserving dignity, and (3) coping with the uncertainty of life. Conclusions A universal definition and conceptual model of the main concept, including theoretical relationships between its antecedents, attributes and consequences, was developed. The definition and proposed conceptual model can allow instruments to be developed that measure the effects, existence or attributes of the concept, and identify a theoretical model, and can also lead to new perspectives and strategies for implementation by nurses to improve dignified person-centred care at the end of life

Core Patient-Reported Outcomes (PROs) and PRO Measures (PROMs) for polypharmacy Medicines Reviews: A Sequential Mixed-Methods Study

Purpose: Problematic polypharmacy can exaggerate “medicine burden” for the patient. Patient-reported outcomes (PROs) are key indicators of medicine burden, and PRO measures (PROMs) can help patients articulate their perceptions of medicine burden. We aimed to: (a) evaluate what PROMs currently exist that assess medicine burden, and what PROs they target, and (b) understand patients’ experiences with using multiple medicines to establish a core set of most meaningful and relevant PROs for assessment in polypharmacy medicines reviews. Patients and Methods: We conducted a prospective, sequential mixed-methods study in two consecutive work phases. Phase 1 involved a rapid review of PROMs, informed by the published PRISMA and COSMIN initiative guidelines. We integrated all evidence in a thematic narrative synthesis. Phase 2 involved cross-sectional, one-to-one, semi-structured interviews with key stakeholders, including members of the public and healthcare professionals (HCPs). We conducted thematic content analysis to identify and classify emerging PROs. Results: In Phase 1, 13 studies described the development and/or validation of 12 PROMs. The PROMs targeted 14 content domains of adult patients’ experiences with prescribed medicines. PROMs varied widely in terms of length, comprehensiveness and psychometric robustness. In Phase 2, all participants (seven members of the public; eight HCPs) agreed on the clinical relevance of PROMs, providing a rich account of justifications. We identified four core PROs: ‘Knowledge, information and communication about own medicines’; “Perceptions, views and attitudes about (own) medicines”; “Impact on daily living: Side-effects and practicalities”, and “Medicine usage: ‘as planned’, misuse, abuse, no use”. Conclusion: We suggest combining psychometrically robust PROMs or domains across PROMs into a bespoke PROM that addresses comprehensively and succinctly the four core PROs. We recommend a careful implementation process that must involve consultation with all relevant stakeholders, while establishing a clear purpose for collecting a PROM and realistic and ongoing collection at key time-points

Life transitions of adolescents and young adults with life-limiting conditions

A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions. The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and AMED. Methodological quality was assessed using an established tool and the final articles included in the study were rated as moderate to high quality. Articles were then assessed based on the insight that they provided into life transitions for adolescents and young adults. Eighteen studies were included in the final review, with two major life transitions identified as pertinent: ‘illness transition’ and ‘developmental transition’. These concurrent transitions were found to be relevant to adolescents and young adults with life-limiting conditions, generating complex needs. Sub-themes within the transitions were also identified. Furthermore, the illness transition was found to also impact significant others, namely family members, having physical, mental and emotional health implications and requiring them to make adaptations. Future research is needed to focus on adolescent and young adult perspectives to bring further insight into these key transitions, since such perspectives are currently underrepresented. Attention to the impact of the illness on the whole family would be useful to expand findings from this review