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Background: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear. Aim: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting. Design: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale. Setting/Participants: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures. Results: The area under the curve was optimal using a Distress Thermometer cut-off score of ⩾6 for total distress and for anxiety, and a cut-off score of ⩾4 optimal when screening for depression. Conclusions: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of ⩾5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.

Background Befriending is a popular way in which to intervene to combat loneliness and social isolation among older people. However, there is a need to improve our understanding about how these interventions work, for whom and in which contexts, to make the best use of the increasing investment in the provision and delivery of befriending services. Methods A realist evaluation was undertaken as it focuses on uncovering causal processes and interactions between mechanisms and contextual characteristics. Five case studies of befriending programmes in Northern Ireland were studied, reflecting variation in contextual variables, service user and provider characteristics. Data was collected via service documentation and semi-structured interviews (n = 46) with stakeholders involved in the delivery and receipt of befriending interventions. Results Eight initial programme theories were generated, which were ‘tested’ in the case study analysis to uncover context-mechanism-outcome relationships. Mechanisms identified included reciprocity, empathy, autonomy, and privacy which were triggered in different contexts to support the alleviation of loneliness and social isolation. Reciprocity was ‘triggered’ in contexts where service users and befrienders shared characteristics, the befriender was a volunteer and befriending took the form of physical companionship. Contexts characterised in terms of shared experiences between befriender and service user triggered empathy. Autonomy was triggered in contexts where befriending relationships were delivered long-term and did not focus on a pre-defined set of priorities. Privacy was triggered in contexts where service users had a cognitive/sensory impairment and received one-to-one delivery. Conclusion This study improves understanding about how and why befriending interventions work. Findings indicate that services should be tailored to the needs of service users and take into consideration characteristics including mobility, impairments e.g. physical, sensory and/or cognitive, as well as the influence of service characteristics including payment for befrienders, fixed/long-term befriending relationship, one-to-one support and the impact of non-verbal communication via face-to-face delivery.

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

Background Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. Methods A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). Results A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. Conclusions Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies. Electronic supplementary material The online version of this article (10.1186/s12904-019-0436-3) contains supplementary material, which is available to authorized users.

Background: Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the 'long goodbye'). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement.Methods: We use a unique approach toward a definition of empowerment for PWD. Phase 1 - A scoping review of medical/health, social care and social policy-based databases to identify any previous literature that may have defined empowerment exclusively for PWD. Based on this literature, we collected a list of terms relating to empowerment for PWD. Phase 2 – Using empowerment key terms set on cards formulated from Phase 1 across three co-production workshops, academic team members, and nine members of Dementia NI (an organisation founded and led by people with dementia) reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them. Results: Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as “a confidence building process whereby one is respected, has a voice and is listened to is involved in making decisions about their lives and has the opportunity to create change through access to appropriate resources”.Conclusions: The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.

Background Loneliness and social isolation are growing public health concerns in our ageing society. Whilst these experiences occur across the life span, 50% of individuals aged over 60 are at risk of social isolation and one-third will experience some degree of loneliness later in life. The aim of this scoping review was to describe the range of interventions to reduce loneliness and social isolation among older adults that have been evaluated; in terms of intervention conceptualisation, categorisation, and components. Methods Three electronic databases (CINAHL, Embase and Medline) were systematically searched for relevant published reviews of interventions for loneliness and social isolation. Inclusion criteria were: review of any type, published in English, a target population of older people and reported data on the categorisation of loneliness and/or social isolation interventions. Data extracted included: categories of interventions and the reasoning underpinning this categorisation. The methodology framework proposed by Arskey and O’Malley and further developed by Levac, et al. was used to guide the scoping review process. Results A total of 33 reviews met the inclusion criteria, evaluating a range of interventions targeted at older people residing in the community or institutionalised settings. Authors of reviews included in this paper often used the same terms to categorise different intervention components and many did not provide a clear definition of these terms. There were inconsistent meanings attributed to intervention characteristics. Overall, interventions were commonly categorised on the basis of: 1) group or one-to-one delivery mode, 2) the goal of the intervention, and 3) the intervention type. Several authors replicated the categorisation system used in previous reviews. Conclusion Many interventions have been developed to combat loneliness and social isolation among older people. The individuality of the experience of loneliness and isolation may cause difficulty in the delivery of standardised interventions. There is no one-size-fits-all approach to addressing loneliness or social isolation, and hence the need to tailor interventions to suit the needs of individuals, specific groups or the degree of loneliness experienced. Therefore, future research should be aimed at discerning what intervention works for whom, in what particular context and how.

Additional file 2: Table S2. Characteristics of reviews included in the scoping review.

Additional file 1: Table S1. Scoping review search strategies.

Background: The goal of Palliative Day Services is to provide holistic care that contributes to the quality of life of people with life-threatening illness and their families. Quality indicators provide a means by which to describe, monitor and evaluate the quality of Palliative Day Services provision and act as a starting point for quality improvement. However, currently, there are no published quality indicators for Palliative Day Services. Aim: To develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. Design and setting: A modified Delphi technique was used to combine best available research evidence derived from a systematic scoping review with multidisciplinary expert appraisal of the appropriateness and feasibility of candidate indicators. The resulting indicators were compiled into ‘toolkit’ and tested in five UK Palliative Day Service settings. Results: A panel of experts independently reviewed evidence summaries for 182 candidate indicators and provided ratings on appropriateness, followed by a panel discussion and further independent ratings of appropriateness, feasibility and necessity. This exercise resulted in the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators. Conclusion: The indicators fulfil a previously unmet need among Palliative Day Service providers by delivering an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement.

Context Effective pain management is a priority in the palliative care of advanced cancer patients. A body of research is emerging examining the factors that influence the management and experience of pain for such individuals. Identifying such factors should allow for the development of targeted interventions to improve pain management in the home while ultimately reducing unnecessary suffering for the patient. Objectives The objective of this study was to identify relevant patient- and carer-related factors which have an effect on the pain experienced by advanced cancer patients cared for at home. Method This is a systematic review following the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) statement guidelines. Studies were retrieved from the CINAHL, MEDLINE, and Web of Science and assessed independently by two reviewers with discrepancies assessed by a third before quality assessment and data extraction. A narrative synthesis was produced. Results Our search strategy produced 720 hits, of which 10 studies were retained for the final analysis. The factors identified included carer knowledge of cancer pain management, carer burden, carer and patient distress, pain rating disparity, patient well-being, patient depression, patient affective experience, patient body image, and satisfaction with palliative/medical care. All factors identified are supported by only some evidence with many having only been explored in single studies. Conclusions There is a lack of quantitative research in the area of factors influencing the experience of pain for advanced cancer patients cared for at home. Such findings would be useful in developing theories of change that would underpin interventions aimed at improving pain outcomes for this population.

Glaucoma is a slow progressive condition that adversely affects quality of life (QoL). According to the European Glaucoma Society, ‘ the goal of glaucoma treatment is to maintain the patient’s visual function and related quality of life, at a sustainable cost’ .1 Treatment goals are expected to take patients’ QoL into consideration: ‘ Target intraocular pressure (IOP) is the upper limit of the IOP estimated to be compatible with a rate of progression sufficiently slow to maintain vision-related quality of life in the expected lifetime of the patient’ .1 Assessment of QoL of people with glaucoma is, therefore, an important goal for clinicians. At least 20 vision-specific patient-reported outcome measures claim to assess QoL in glaucoma, reflecting the importance of this topic.2–6 These measures are summarised in table 1. Despite the plethora of QoL measures that exist, a recent National Institute for Health and Care Excellence (NICE) guideline on glaucoma7 indicated that there is uncertainty about which QoL instrument should be used to evaluate glaucoma interventions, and proposed the identification or development of an appropriate measure of QoL as a research priority. The widely used EuroQoL 5 Dimension Scale (EQ-5D), which is the standard instrument used by NICE for policy making, has been shown to be inappropriate for some vision disorders (leading to a suggestion of EQ-5D bolt-on items for vision disorders).8 In addition, the sensitivity of existing QoL instruments to detect change is uncertain.9 It is important to investigate these knowledge gaps given that treatment goals are linked to QoL in glaucoma. In particular, there is a need to examine the following aspects of existing QoL measures used in glaucoma: (1) content, (2) response and (3) …

Introduction Older patients may continue to receive potential inappropriate medications (PIMs) at the end of life. Application of consensus-based tools to identify PIMs may result in the identification of candidate medications for deprescribing, with the aim of overcoming the harm of inappropriate medication and improving clinical outcomes. This study aims to describe medication use and deprescribing patterns, and to assess prescribing appropriateness for older people in the last 14 days of life in the hospice setting. Methods Longitudinal, retrospective cohort study of deceased patients (≥65 years) who died between 1 January 2018 and 31 December 2018 in three hospices in a region of the United Kingdom. We identified prescribed and deprescribed medications and assessed medication appropriateness using consensus-based criteria, namely STOPPFrail[1] and criteria developed by Morin et al.[2] Unexpected/sudden deaths were excluded. Statistical analysis was conducted using SPSS statistics 26.0. Preliminary results Data collection is currently ongoing. To date, data from 69 deceased patients have been collected (mean age 76.1 years). Of these decedents, 62.3% were female and the majority (just under 90%) had cancer reported as the cause of death. During the last 14 days of life, each patient was prescribed a mean of 17 ± 5 different medications. The mean number of medications decreased significantly between day 14 and the day of death from 13.2 ± 4.4 to 9.4 ± 3.7 (P < 0.01). Six hundred and thirty-nine medications were discontinued, with just under 70% stopped in the last seven days before death. 34.9% of those discontinued were prescribed for chronic conditions and 22% were proton pump inhibitors. In most decedents, swallowing difficulty was the reason for medication discontinuation. According to the STOPPFrail criteria [1], 42 (60.1%) of decedents received at least one PIM between day 14 and the day of death. There were 59 PIMs in total for these patients; of these 20.3% were hyoscine butyl-bromide and 16.9% were gliclazide. Using the criteria developed by Morin et al [2], 103 medications were assessed as being of questionable (81.6%) or inadequate (18.4%) clinical benefit. Of these, 64.1% were initiated during hospice admission. There was a statistically significant association between medications of questionable clinical benefit and medication number during the last 14 days of life (P < 0.01). Three of the PIMs were vitamins, considered inappropriate by both sets of criteria. Prescribing of PIMs reduced as patients neared death. Conclusion A substantial proportion of older patients with life-limiting diseases receive PIMs during their last days of life. No systematic discontinuation of inappropriate medications was observed thus guidelines and resources are needed to facilitate rationalisation and deprescribing of drug treatments for older patients in the last days of life. The small sample size makes the relationship between most variables insignificant; however, data extraction is still ongoing in hospices. References 1. Lavan H, Gallagher P, Parsons C, Mahony O. STOPPFrail (Screening Tool of Older Persons’ Prescriptions in Frail adults with a limited life expectancy): Consensus validation. Age and ageing. 2017; 46 (4): 600–607. 2. Morin L, Laroche M L, Vetrano D L, Fastbom J, Johnell K. Adequate, questionable, and inadequate drug prescribing for older adults at the end of life: A European expert consensus. European Journal of Clinical Pharmacology. 2018; 74(10): 1333–1342.

The number of people requiring palliative care is increasing sharply (Etkind et al., 2017). Forty per cent more people will need palliative care by 2040. Recommendations are that palliative care should be initiated at diagnosis, even concurrently with curative treatment (Guo et al., 2012). In response, Palliative Care Day Services are designed to support people during assessment and treatment through the provision of regular outpatient attendance at specialist centres to deliver out-patient services so that patients can remain at home. Such interventions have been found to be effective (Stevens, Martin & White, 2011), however the evidence is limited. To inform further development, we undertook retrospective chart reviews at three Marie Curie centres: reviewing the records of people attending for the first time in 2015. We found that services were accessed mainly by older people with a primary diagnosis of cancer; referrals came mostly from: hospitals, other palliative care services or a GP; and people typically attended weekly for 6 or 12 weeks. In 82 cases, we found people had their physical (331), psychological (55), social (46) and spiritual (14) needs addressed. Day Services were provided by nurses, doctors and therapists. Patients had their medication regime reviewed and equipment was ‘prescribed’ as necessary. In a third of cases, support was also offered to a family member. About half of patients were helped to develop an advance care plan and almost 300 referrals were made to other health and social care services. Day Services can provide specialist palliative care outside the inpatient unit to help address specific, pre-identified health and social care needs. The effectiveness of such services requires further investigation and chart reviews can be useful in contributing to such evaluations.

STROBE Statementâ checklist of items that should be included in reports of observational studies. (DOCX 40 kb)

Management of Constipation in Adult Patients Receiving Palliative Care Guidelines Summary. (DOCX 326 kb)

Background: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management. Aim: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting. Design: This is a systematic review. Data sources: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis. Results: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting. Conclusion: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.

Objective This study provides a longitudinal assessment of distress in longer-term oesophageal cancer carers, while examining illness perception schema as a possible determinant of change in distress over time. Methods Oesophageal cancer carers (n = 171), 48 months post-diagnosis, were assessed at baseline and 12 months later with the Illness Perception Questionnaire-Revised, Cancer Coping Questionnaire, Hospital Anxiety and Depression Scale and Concerns About Recurrence Scale. Results Findings report deterioration from normal to probable anxiety in 35.7% of carers and probable depression in 28.7% carers over time. Fear of recurrence remained stable. Changes in control, consequence and cause beliefs were identified as key determinants of a change in psychological morbidity. Conclusions Illness beliefs appear to be valuable targets for psychological intervention to improve wellbeing among carers of people with oesophageal cancer. Copyright © 2015 John Wiley & Sons, Ltd.

ObjectivesTo characterise the use of the parenteral non-steroidal anti-inflammatory drug parecoxib when given by continuous subcutaneous infusion (CSCI) in a hospice population. Clinical experience suggests parecoxib CSCI may be of benefit in this population, but empirical evidence in relation to its safety and efficacy is lacking.MethodsRetrospective chart review of patients with a cancer diagnosis receiving parecoxib CSCI from 2008 to 2013 at the Marie Curie Hospice, Belfast. Data were collected on treatment regime, tolerability and, in patients receiving at least 7 days treatment, baseline opioid dose and changes in pain scores or opioid rescue medication requirements.ResultsParecoxib CSCI was initiated in 80 patients with a mean administration of 17.9 days (median 11, range 1–94). When used for a period of 7 days, there was a statistically significant reduction in pain scores (p=0.002) and in the number of rescue opioid doses required (p=0.001), but no statistically significant opioid-sparing effect (p=0.222). It was generally well tolerated, although gastrointestinal, renal adverse effects and local site irritation were reported.ConclusionsParecoxib may have a valuable place in the management of cancer pain, especially towards the end of life when oral administration is no longer possible and CSCI administration is relied on. Further studies into the efficacy and tolerability of parecoxib CSCI are merited.

PRISMA-P checklist. Checklist including list of recommended items to include in a systematic review protocol. (29.7 Kb)

Proposed conceptual model mapping quality indicators by stage of care. A proposed conceptual model based on the Donabedian framework and a modified version of the framework used in the OECD Health Care Quality Indicators Project. (21.7 Kb)

IntroductionReduced physical function and increased dependency have a significant negative impact on the quality of life of people who are terminally ill. Previous research indicates that participation in physical exercise can reduce distressing symptoms and improve physical functioning and quality of life in palliative care patients with a diagnosis of cancer. We describe the preliminary evaluation of an outpatient rehabilitation and exercise programme implemented in a hospice setting specifically designed for patients with a palliative diagnosis, and aimed at improving and maintaining physical functioning.MethodsEligible patients completed a programme of 10 gym-based exercise sessions including exercises to strengthen arms, legs, and core muscles, and to improve balance and cardiovascular fitness. This was further supported by a home-based exercise programme. Assessments of physical performance, fatigue, and quality of life were completed at baseline and immediately post-completion of the exerci...

Anorexia is a significant problem in patients approaching the end of life, for which corticosteroids are widely prescribed. It is not clear which regimen is the most safe and effective for this indication.The study objective was to identify the evidence for the use of corticosteroids, and the most safe and effective dosing regimen for management of anorexia in palliative care patients.A search of MEDLINE and CINAHL was carried out to identify original studies relevant to this question. These were reviewed against inclusion criteria and articles for inclusion were identified. Data was extracted and a narrative analysis was carried out. Subjects were adult patients with life-limiting diagnoses prescribed corticosteroids for anorexia in any care setting. Quality of studies was assessed using the system used by the Scottish Intercollegiate Guidelines Network for grading evidence.Eight articles were identified that met the inclusion criteria. The corticosteroid drugs and dosing regimens used were wide ranging, and a variety of tools were used to assess appetite within these studies. All studies showed improvement in appetite with the corticosteroid used, although this did not always reach statistical significance. It was not possible to identify the most effective corticosteroid drug, dose, or duration of treatment from the identified studies: the best quality evidence was for an eight-week course of intravenous methylprednisolone; however the studies using this regimen had the highest attrition rates.Corticosteroids are beneficial in treating anorexia in palliative care patients with malignancies; however there is no evidence for their use in anorexia due to end-stage nonmalignant disease. There is insufficient evidence to recommend any particular corticosteroid drug over another, or to recommend a dosing regimen.

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public’s understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice. Aim: To explore public perceptions of palliative care and identify strategies to raise awareness. Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken ( N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed. Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant’s expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies. Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Objective This study aimed to evaluate the extent to which patient-related factors and physicians' country of practice (Northern Ireland [NI] and the Republic of Ireland [RoI]) influenced decision making regarding medication use in patients with end-stage dementia. Methods The study utilised a factorial survey design comprising four vignettes to evaluate initiating/withholding or continuing/discontinuing specific medications in patients with dementia nearing death. Questionnaires and vignettes were mailed to all hospital physicians in geriatric medicine and to all general practitioners (GPs) in NI (November 2010) and RoI (December 2010), with a second copy provided 3 weeks after the first mailing. Logistic regression models were constructed to examine the impact of patient-related factors and physicians' country of practice on decision making. Significance was set a priori at p ≤ 0.05. Free text responses to open questions were analysed qualitatively using content analysis. Results The response rate was 20.6% (N = 662) [21.1% (N = 245) for GPs and 52.1% (N = 38) for hospital physicians in NI, 18.3% (N = 348) for GPs and 36.0% (N = 31) for hospital physicians in RoI]. There was considerable variability in decision making about initiating/withholding antibiotics and continuing/discontinuing the acetylcholinesterase inhibitor and memantine hydrochloride, and less variability in decision making regarding statins and antipsychotics. Patient place of residence and physician's country of practice had the strongest and most consistent effects on decision making although effect sizes were small. Conclusions Further research is required into other factors that may impact upon physicians' prescribing decisions for these vulnerable patients and to clarify how the factors examined in this study influence prescribing decisions. Copyright © 2013 John Wiley & Sons, Ltd.

Background: Staff in palliative care settings perform emotionally demanding roles which may lead to psychological distress including stress and burnout. Therefore, interventions have been designed to address these occupational risks.Aim: To investigate quantitative studies exploring the effectiveness of psychosocial interventions that attempt to improve psychological wellbeing of palliative care staff.Design: A systematic review was conducted according to methodological guidance from UK Centre for Reviews and Dissemination.Data sources: A search strategy was developed based on the initial scans of palliative care studies. Potentially eligible research articles were identified by searching the following databases: CINAHL, MEDLINE (Ovid), PsycINFO and Web of Science. Two reviewers independently screened studies against pre-set eligibility criteria. To assess quality, both researchers separately assessed the remaining studies using the Quality Assessment Tool for Quantitative Studies.Results: A total of 1786 potentially eligible articles were identified – nine remained following screening and quality assessment. Study types included two randomised controlled trials, two non-randomised controlled trial designs, four one-group pre–post evaluations and one process evaluation. Studies took place in the United States and Canada (5), Europe (3) and Hong Kong (1). Interventions comprised a mixture of relaxation, education, support and cognitive training and targeted stress, fatigue, burnout, depression and satisfaction. The randomised controlled trial evaluations did not improve psychological wellbeing of palliative care staff. Only two of the quasi-experimental studies appeared to show improved staff wellbeing although these studies were methodologically weak.Conclusion: There is an urgent need to address the lack of intervention development work and high-quality research in this area.

Objective This study aimed to examine the extent to which illness perceptions and coping strategies among women diagnosed with breast cancer explain psychological distress at diagnosis and at 6 months post diagnosis relative to demographic and illness-related variables. Methods Women were recruited to the study shortly after diagnosis. A total of 90 women completed study materials (Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire and the Hospital Anxiety and Depression Scale) at time 1. The same questionnaires were sent approximately 6 months later to those who had consented at time 1, and completed questionnaires were returned by 72 women. Results Cluster analysis was used to identify groups of respondents who reported a similar profile of illness perception scores. Regression analysis demonstrated that one of these clusters was more likely to experience psychological distress than the other both at diagnosis and at 6 months post diagnosis. Illness perception cluster membership and positive focus type coping were the most important and consistent predictors of lower psychological distress at diagnosis and at 6 months post diagnosis. Conclusions Illness perceptions remained relatively stable over the study period, and therefore we are unable to clarify whether changes in illness cognitions are associated with a corresponding change in psychological symptoms. Future research should evaluate the impact on psychological distress of interventions specifically designed to modify illness cognitions among women with breast cancer. Copyright © 2012 John Wiley & Sons, Ltd.

Leventhal's common sense model has provided a useful framework for explaining psychological distress in several chronic illnesses. The model indicates that a person's perception of their illness and their coping strategies are the key determinants of their experience of psychological distress. The present research examines whether illness perceptions and coping strategies are related to levels of psychological distress among survivors of esophageal cancer. Everyone registered with the Oesophageal Patients' Association in the UK was mailed a questionnaire booklet, which included the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, and the Hospital Anxiety and Depression Scale. Complete responses were received from 484 people. Regression models indicated that the variables measured could explain 51% of the variance in anxiety and 42% of the variance in depression. Perceptions of esophageal cancer explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological distress. The results of this study are consistent with previous research demonstrating that illness perceptions are stronger correlates of adaptive outcomes than coping strategies. The findings suggest that cognition-based interventions could potentially be most effective in minimizing emotional distress among survivors of esophageal cancer.

ObjectiveTo examine the extent to which the illness perceptions of Oesophageal cancer survivors and the illness perceptions of their carers explain the survivors' levels of psychological distress (in terms of anxiety and depression symptoms) relative to demographic and biomedical variables and patients' coping strategies.MethodEveryone registered with the Oesophageal Patients' Association in the UK was mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, and the Hospital Anxiety and Depression Scale. Patients were asked to pass a modified version of the Illness Perception Questionnaire-Revised to someone they identified as a carer. Complete responses were received from 317 dyads.ResultsRegression models indicated that the variables measured could explain 56% of the variance in anxiety and 54% of the variance in depression. Patients' illness perceptions explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological well-being. Some of the carers' illness perceptions made a significant contribution to the explanation of the patients' levels of psychological distress, and in some instances, carer perceptions were found to moderate the relationship between patients' perceptions and psychological distress.ConclusionThe findings suggest that cognition-based interventions could potentially be most effective in minimizing emotional distress among survivors of Oesophageal cancer. This study also shows that these interventions could usefully be delivered at the level of the patient–carer dyad.

Objectives: To determine whether the proposed seven-factor structure of the Illness Perception Questionnaire—Revised (Timeline Acute/Chronic, Timeline Cyclical, Consequences, Personal Control, Treatment Control, Illness Coherence and Emotional Representations) is appropriate among a population of oesophageal cancer survivors. Methods: Everyone registered with the Oesophageal Patients' Association in the UK (n = 2185) was mailed a questionnaire booklet, which included the Illness Perception Questionnaire—Revised. Responses from 587 oesophageal cancer survivors (27%) were subjected to a confirmatory factor analysis. Results: The proposed seven-factor structure provided a reasonable fit of the data. Modification indices suggested that a significantly better fit could be provided if one of the items on the Timeline Acute/Chronic factor loaded on the Treatment Control factor and an error covariance was added between two other items on the Timeline Acute/Chronic factor. Conclusions: The model fit for the seven-factor structure proposed by Moss-Morris et al. (Psychol Health 2002;17:1–16) was found to be adequate in our study. However, the structure of the timeline acute/chronic factor needs to be considered, particularly when the IPQ-R is to be used among older people with a potentially life-threatening illness or those receiving palliative care. Copyright © 2011 John Wiley & Sons, Ltd.

This study aimed to examine whether changes in the illness perceptions of oesophageal cancer survivors explain changes in their levels of psychological distress relative to demographic and biomedical variables and coping strategies. Oesophageal cancer survivors completed the Illness Perception Questionnaire — Revised, the Cancer Coping Questionnaire and the Hospital Anxiety and Depression Scale at two points in time, 12 months apart. Cluster analysis was used to identify groups of respondents who reported a similar profile of change in their illness perception scores over time. Findings suggested that enhancing control cognitions and encouraging a positive focus coping strategy may be important in improving psychological health.

IntroductionConstipation is one of the most common symptoms in patients in specialist palliative care (SPC) settings and can cause considerable physical psychological and social suffering for the patient and their family. Due to the high variability in constipation assessment and management in SPC settings questions exist around how to implement an educational program in practice to address this clinical gap.AimTo develop and test the feasibility and acceptability of a novel educational intervention for HCPs to manage constipation experienced by people in SPC settings.MethodUsing the MRC framework for complex interventions and guided by the consolidated framework for implementation research an online resource was developed considering the content context and processes for implementation.ResultsAssessment prevention and management were identified as the core aspects. Six sessions with theoretical content application to practice and reflection through interacting with colleagues were developed in line with the best available evidence. Incentives including an educational bursary and alignment with revalidation and support from senior management champions and the research team were identified as key elements needed successful implementation. Funding IT infrastructure and attitudes to the content have been flagged as potential barriers to success.ConclusionA six week blended program covering the key concepts for assessment and management of constipation in palliative care has been created. Content evidence from the literature and empirical data on the preferred structure and method of delivery as well as key considerations of the contextual factors have been identified as key factors for implementation.References. Craig P, et al.Developing and evaluating complex interventions: The new medical research council guidance. BMJ Clinical Research Ed2008;337(October):a1655. Available at: http://discovery.ucl.ac.uk/168426/. Damschroder LJ, et al. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science2009;4(50).. Friedrichsen M, Erichsen E. The lived experience of constipation in cancer patients in palliative hospital-based home care. Int J Palliat Nurs [Internet] 2004;10(7):321–5. Available from: http://search.ebscohost.com/login.aspx?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl?=13576321&AN=13991056&h=XKMF4r08srZuhDY0j7C95oLLyYKNHUcvoeEuhyXNnsIM2BI%2BEhmcY1pPP%2BN1pvrMzQ9Bn9b5j45X6WzyBRydEA%3D%3D&crl=c [Accessed: 2017 August 21]. Tvistholm N, Munch L, Danielsen AK. Constipation is casting a shadow over everyday life? A systematic review on older people’s experience of living with constipation [Internet]. Journal of Clinical Nursing2017;26:902–14. Available from: http://doi.wiley.com/10.1111/jocn.13422 [Accessed: 2017 August 21]

Objective The research aimed to determine the extent to which illness cognitions and coping explain psychological distress (fear of cancer recurrence, anxiety and depression symptoms) among family carers of survivors of oesophageal cancer. Methods Carers of patients registered with the Oesophageal Patients' Association in the UK were mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, the Concerns about Recurrence Scale and the Hospital Anxiety and Depression Scale. Results Complete responses were received from 382 family carers (75% male; mean (SD) age=62 (10.91) years). Regression models indicated that the variables measured could explain between 35 and 49% of the variance in psychological distress among carers. Illness cognitions (particularly perceptions of the cause of, consequences of and personal control over oesophageal cancer and the carer's understanding of the condition) explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological distress. Conclusion The results of this study are consistent with previous research demonstrating that illness cognitions are significant correlates of adaptive outcomes, thereby suggesting that cognition-based interventions could potentially be effective in minimizing emotional distress among family carers of oesophageal cancer survivors.

Diabetes mellitus is a chronic illness which affects a significant number of childbearing women. Despite the potential for adverse consequences for both maternal and fetal wellbeing, few women with diabetes plan their pregnancies to ensure that they enter pregnancy in optimal health. Furthermore, while adverse pregnancy outcomes are well documented for women with type I diabetes, it is now apparent that an increasing number of women with type II diabetes are becoming pregnant with similar adverse associated risk. There is an increasing recognition that significant adverse pregnancy outcomes are determined before a woman initiates pregnancy care, many of which could be minimized with the introduction of preconception care. As formalized preconception care clinics remain scant across the UK, there is an urgent need to increase the opportunities for the provision of preconception care and advice to women with diabetes. Midwives are ideally placed to provide preconception advice to women and could provide the missing link in terms of preconception advice for women with diabetes.

One goal of pregnancy is the development of maternal emotional attachment tothe unborn baby, and this attachment has been shown to be related to laterrelationships and development. There are many factors which may hinder thedevelopment of prenatal attachment, including the presence of complications,hospitalisation, and anxiety. However, women’s appraisals of risk may not becongruent with medical assessments of risk. The current study sought to modelthe relationships between risk (maternal perceptions and medical ratings), coping, psychological well-being, and maternal–foetal attachment among 87 women hospitalised for pregnancy-related complications. Analysis indicated that positive appraisal as a coping strategy mediates the relationship between maternal appraisals of risk and maternal–foetal attachment, and that medical ratings of risk were not predictive of maternal–foetal attachment. Awareness of the potential incongruence between patients’ and health professionals’ perceptions of risk is important within the clinical environment. The potential benefits of promoting positive appraisal in high-risk pregnancy merit further research.

Habituation is the decrement in response to repeated stimulation. Fetal habituation performance may reflect the functioning of the central nervous system (CNS) prenatally. However, basic characteristics of the prenatal habituation phenomena remain unclear, such as the relationship with gestational age (GA) and fetal sex. The current study investigated the relationship between habituation performance and both fetal sex and advancing gestational age, by comparing habituation performance at 31 and 35 weeks GA within a sample of 74 singleton pregnancies, all with normal neonatal outcomes. A vibroacoustic stimulus was used to habituate the fetus and motor responses were monitored via ultrasound. The criterion for habituation was defined as no response to five consecutive stimulus presentations. Prenatal habituation performance was found to demonstrate a developmental trend, with an increased proportion of fetuses habituating with advancing gestational age and requiring fewer stimulus presentations to satisfy the habituation criterion. Fetal sex also appears to have a moderating influence on gestational changes in habituation performance. Hence, the ongoing maturation of the fetal CNS does appear to be reflected in fetal habituation performance, indicating the need to consider the composition of fetal samples in terms of both gestational age and sex. Variability in interfetal performance was found to be high and clinical applications remain speculative.

Objective There is a considerable body of research linking elements of Leventhal's Common Sense Model (CSM) to emotional well-being/distress outcomes among people with physical illness. The present study aims to consolidate this literature and examine the evidence for the role of coping strategies within this literature. Methods A systematic review was conducted where the outcomes of interest were: depression, anxiety and quality of life. A total of 1050 articles were identified and 31 articles were considered eligible to be included in the review. Results Across a range of illnesses, perceptions of consequences of the illness and emotional representations were consistently the illness perceptions with the strongest relationship with the outcomes. Coping variables tend to be stronger predictors of outcomes than the illness perception variables. The evidence for the mediating effect of coping was inconsistent. Conclusions Illness perceptions and coping have an important role to play in the explanation of distress outcomes across a range of physical health conditions. However, some clarity about the theoretical position of coping in relation to illness perceptions, and further longitudinal work is needed if we are to apply this information to the design of interventions for the improvement of psychological health among people with physical health conditions.

Introduction Evaluating quality of palliative day services is essential for assessing care across diverse settings, and for monitoring quality improvement approaches. Aim To develop a set of quality indicators for assessment of all aspects (structure, process and outcome) of care in palliative day services. Methods Using a modified version of the RAND/UCLA appropriateness method (Fitch et al., 2001), a multidisciplinary panel of 16 experts independently completed a survey rating the appropriateness of 182 potential quality indicators previously identified during a systematic evidence review. Panel members then attended a one day, face-to-face meeting where indicators were discussed and subsequently re-rated. Panel members were also asked to rate the feasibility and necessity of measuring each indicator. Results 71 indicators classified as inappropriate during the survey were removed based on median appropriateness ratings and level of agreement. Following the panel discussions, a further 60 were removed based on appropriateness and feasibility ratings, level of agreement and assessment of necessity. Themes identified during the panel discussion and findings of the evidence review were used to translate the remaining 51 indicators into a final set of 27. Conclusion The final indicator set included information on rationale and supporting evidence, methods of assessment, risk adjustment, and recommended performance levels. Further implementation work will test the suitability of this ‘toolkit’ for measurement and benchmarking. The final indicator set provides the basis for standardised assessment of quality across services, including care delivered in community and primary care settings. Reference Fitch K, Bernstein SJ, Aguilar MD, et al . The RAND/UCLA Appropriateness Method User’s Manual . Santa Monica, CA: RAND Corporation; 2001. http://www.rand.org/pubs/monograph_reports/MR1269

Objectives: To access the cognitions of adults with type 2 diabetes whilst completing items on the Illness Perceptions Questionnaire – Revised (IPQ-R). To determine whether these cognitions are congruent with the meaning of items and subscales as interpreted by researchers and clinicians using the IPQ-R and to identify the nature and extent of problems that individuals experience when completing the IPQ-R.Design: Participants (n=36) were recruited from a primary care diabetes clinic and a hospital diabetes clinic. They were asked to complete the IPQ-R using a ‘think-aloud’ methodology.Main Outcome Measures: Transcripts were analysed to identify instances where participants expressed problems with item completion, or where there was inconsistency between verbal and written responses.Results: The most problematic subscales were those of ‘personal control’ and ‘consequences’. Conclusion: Generally, participants found the IPQ-R unproblematic. However, participants had problems with the concept of ‘cure’ and ‘symptoms’ in the context of type 2 diabetes, and with the negative phrasing used in some items. These findings have important implications for the interpretation of IPQ-R scores, particularly when the IPQ-R is used as the basis for individualised interventions among people with type 2 diabetes.

This study aimed to evaluate the extent to which patient-related factors and physicians' country of practice (Northern Ireland [NI] and the Republic of Ireland [RoI]) influenced decision making regarding medication use in patients with end-stage dementia.The study utilised a factorial survey design comprising four vignettes to evaluate initiating/withholding or continuing/discontinuing specific medications in patients with dementia nearing death. Questionnaires and vignettes were mailed to all hospital physicians in geriatric medicine and to all general practitioners (GPs) in NI (November 2010) and RoI (December 2010), with a second copy provided 3 weeks after the first mailing. Logistic regression models were constructed to examine the impact of patient-related factors and physicians' country of practice on decision making. Significance was set a priori at p ≤ 0.05. Free text responses to open questions were analysed qualitatively using content analysis.The response rate was 20.6% (N = 662) [21.1% (N = 245) for GPs and 52.1% (N = 38) for hospital physicians in NI, 18.3% (N = 348) for GPs and 36.0% (N = 31) for hospital physicians in RoI]. There was considerable variability in decision making about initiating/withholding antibiotics and continuing/discontinuing the acetylcholinesterase inhibitor and memantine hydrochloride, and less variability in decision making regarding statins and antipsychotics. Patient place of residence and physician's country of practice had the strongest and most consistent effects on decision making although effect sizes were small.Further research is required into other factors that may impact upon physicians' prescribing decisions for these vulnerable patients and to clarify how the factors examined in this study influence prescribing decisions.

Introduction: Seeking preconception care is recognized as an important health behavior for women with preexisting diabetes. Yet many women with diabetes do not seek care or advice until after they are pregnant, and many enter pregnancy with suboptimal glycemic control. This study explored the attitudes about pregnancy and preconception care seeking in a group of nonpregnant women with type 1 diabetes mellitus. Methods: In-depth semistructured interviews were completed with 14 nonpregnant women with type 1 diabetes. Results: Analysis of the interview data revealed 4 main themes: 1) the emotional complexity of childbearing decisions, 2) preferences for information related to pregnancy, 3) the importance of being known by your health professional, and 4) frustrations with the medical model of care. Discussion: These findings raise questions about how preconception care should be provided to women with diabetes and highlight the pivotal importance of supportive, familiar relationships between health professionals and women with diabetes in the provision of individualized care and advice. By improving the quality of relationships and communication between health care providers and patients, we will be better able to provide care and advice that is perceived as relevant to the individual, whatever her stage of family planning.

The study sought to contextualize the physical, social and emotional adjustments that are faced by oesophageal cancer patients following surgery. Semi-structured interviews were conducted with five survivors, guided by the principles of Interpretative Phenomenological Analysis (IPA). Participants’ accounts encompassed descriptions of personal, social and medical relationships, illness and treatment experiences, eating behaviours, and spiritual and religious perspectives, representing myriad challenges to the self-concept. Surviving patients may have a role in addressing patient expectations about eating. The importance of attempts to nurture and maintain a sense of self should be recognized by those providing care.

First exposure to human cadaver dissection has the potential to be an actual stressor which can cause psychological trauma. This study examines the relationship between anatomy students’ experience of this potential stressor and various psychological and personal factors. Questionnaires measuring emotional reactions to cadaver dissection, coping strategies, personality and attitudes to death were administered to anatomy students at two medical schools immediately after their first exposure to human cadaver dissection. Emotional reactions to recalling this experience were as­sessed 4 months later. Data on these variables were obtained from 141 students. Students found the experience mostly challenging and, on average, did not report serious emotional difficulties. How­ever, a minority of students (10/141) experienced serious adverse consequences. It is possible that the typical student who undertakes an anatomy course is already psychologically prepared for such transactions. However, low cost desensitization programs could be made available for the minority of individuals who may experience adverse reactions in this situation. Keywords: Cadaver dissection, stress, coping, personality

Following surgery for esophageal cancer, patients can experience complex physical, social, and emotional changes. Investigation of these challenges, particularly from the perspective of the patient and his or her carer, has been limited. The current study explored the emotional and cognitive experiences of esophageal cancer survivors and those of their carers, using focus groups conducted with members of a patient support group. Analysis of the patients’ data yielded three themes: coping with a death sentence, adjusting to and accepting an altered self, and the unique benefits of peer support. Analysis of the carers’ data also yielded three themes: the carer as buffer, representations of recovery and recurrence, and normalizing experiences through peer support. Esophageal cancer patients and their carers require holistic support in their efforts to adjust to the social, emotional, and physical consequences of esophagectomy. Peers could be an effective channel for the support of patients and carers.

Perceptions of exercise among nonattenders of cardiac rehabilitation (CR) were explored using semi-structured interviews. Analysis indicated that participants did not recognize the cardiovascular benefits of exercise, and perceived keeping active through daily activities as sufficient for health. Health professionals were perceived to downplay the importance of exercise and CR, and medication was viewed as being more important than exercise for promoting health. The content of CR programmes and the benefits of exercise need to be further explained to patients post-MI, and in a manner that communicates to patients that these programmes are valued by significant others, particularly health professionals.

Previous research has demonstrated that students’ cognitions about statistics are related to their performance in statistics assessments. The purpose of this research is to examine the nature of the relationships between undergraduate psychology students’ previous experiences of maths, statistics and computing; their attitudes toward statistics; and assessment on a statistics course. Of the variables examined, the strongest predictor of assessment outcome was students’ attitude about their intellectual knowledge and skills in relation to statistics at the end of the statistics curriculum. This attitude was related to students’ perceptions of their maths ability at the beginning of the statistics curriculum. Interventions could be designed to change such attitudes with the aim of improving students’ learning of statistics.

Background The importance of good end-of-life care for older people in nursing homes is recognised internationally and competence based training has been highlighted to improve palliative care provision in this care setting. Aim This aim of this study was to evaluate a three day competency based, Regional Palliative and End-of-Life Care Learning and Development Programme targeted at nursing staff (n=1330) working within nursing homes (n=266) in Northern Ireland. Methods Both quantitative and qualitative methods were used in two key phases. In Phase 1 participants were asked to complete the Regional Palliative and End-of-Life Care Competency Assessment Tool before and after the training. The content of the programme was mapped to the domains of this tool. In Phase 2, following the programme, seven focus groups with registered nurses (n=29), telephone interviews with managers (n=8) and one focus group, which two managers chose, took place. Results 619 participants completed the programme and 95.3% (n=590) completed the competency tool before and after the training. Descriptive statistics show participants self-reported a significant increase in core palliative care knowledge and skills across all five competency domains after training. Common themes emerging from focus groups and telephone interviews were: ‘Outcomes of attending the programme’, programme delivery and issues of access9, challenges to palliative care in care homes9 and ‘enablers to palliative care in the nursing home setting’. Conclusions This example of training mapped to a competency tool may have relevance given other national and international competency frameworks which exist. Factors relating to attrition have also been identified.