ABSTRACT Introduction There is increasing work towards drawing on theory, implementing co‐production and accounting for complexity within the production of systematic reviews for public health. In this paper, we report on the process of co‐producing a theory; in this case, a graphical articulation of theory in the form of a logic model, which describes how contextual factors influence children's health. Methods We undertook a series of three online co‐production workshops, involving 18–20 participants in each, and worked with an advisory group of experts with professional and lived expertise. An online virtual whiteboard was used to support the identification of factors that contributed to poorer childhood health, explanations for these factors, and connections between different factors. Results Driven by government strategy, we initially focussed our work on childhood obesity. However, co‐production was transformational in switching the focus of the logic model away from a narrow focus on Body Mass Index as a measure of obesity, to a more holistic theory of factors that shape children's health, recognised as the intersection between healthy eating, physical activity and mental well‐being. Theorising with a diverse range of co‐producers helped us to recognise the stigmatising impacts that an exclusive focus on clinical measures of children's health can have, and the way that a narrow clinical focus inhibits theorising the complexity and drivers of poorer health. Conclusion Co‐production led to a switch in theorising away from narratives of children's health that focus closely on personal responsibility, towards narratives that explore structural and contextual drivers of health. Patient or Public Contribution The logic model was entirely driven by the contributions of researchers, those with lived experience (e.g., as parents and/or who have experienced poor health), and those with professional experience (e.g., as teachers) who worked together to co‐produce the model. An advisory group composed of people with a similar range of expertise helped to shape the conduct of co‐production and dissemination (including in the preparation of this manuscript).
OBJECTIVES:This is a protocol for a Cochrane Review (intervention). The objectives are as follows: To determine the benefits and harms of psychological interventions compared to treatment as usual, waiting list, active control, or another psychological intervention to improve emotional well-being in adults with an advanced progressive life-limiting illness.
Introduction People with terminal illnesses may have spiritual and/or religious concerns and often value professional assistance with addressing these. It is again being increasingly recognised that, as Cicely Saunders originally argued, attending to the spiritual and/or religious needs of people approaching the end-of-life benefits their health and wellbeing overall. Aims To explore the detail of spiritual and/or religious interventions for the wellbeing of adults with terminal illnesses in randomised controlled trials (RCTs) included in a 2011–22 Cochrane review. Methods We systematically searched six databases (AMED, CENTRAL, CINAHL, EMBASE, MEDLINE, and PsycINFO) for RCTs of spiritual and/or religious interventions for the wellbeing of adults with terminal illnesses between 2011 and 2022. Our primary outcomes were spiritual wellbeing, psychological wellbeing, quality of life, coping, death distress, and quality of death/dying. Results We identified 2569 citations, retrieved 98 full-texts, and included 40 studies, a much larger number and proportion than the 2012 review (40/2569 vs 5/3868). Studies were conducted globally: in Africa, the Americas, Asia, Australasia, and Europe. Interventions varied. Most involved psychotherapy (14) or life reflection (13). Five were explicitly spiritual or religious, e.g., Islamic prayer, or Buddhist chanting. Five comprised explicit spiritual/religious elements within a palliative care intervention. The remaining three investigated meditation or mindfulness. Studies also varied in their comparators, outcomes assessed, and outcome measures used. This variability between studies restricted and limited inter-study comparisons. Conclusions Increasing numbers of RCTs in this field are being conducted internationally. However, they vary widely in the interventions they investigate, the outcomes they address, and the measures they use. Impact This important, under-researched field is growing, with increasing numbers of RCTs investigating spiritual and/or religious interventions for wellbeing. However, studies are highly diverse, and, while variation is to be expected in a developing field, too much prevents comparisons of study findings. More consistency of design would enable more inter-study comparability. References Candy B, Jones L, Varagunam M, Speck P, Tookman A, King M. Spiritual and religious interventions for well-being of adults in the terminal phase of disease. Cochrane Database of Systematic Reviews 2012;(5). Art. No.: CD007544. DOI: 10.1002/14651858.CD007544.pub2. Clark D. (2018). Cicely Saunders: a life and legacy. Oxford, England: Oxford University Press. Saunders CM. (1981). The founding philosophy. p. 4 in Saunders CM, Summers DH, Teller N (eds.), Hospice: The Living Idea. London: Edward Arnold. Knaul FM, et al, on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health care: the Lancet Commission report. Lancet 2018;391:1391–454. Radbruch L, et al. Redefining palliative care – a new consensus-based definition. Journal of Pain and Symptom Management 2020;60(4):754–64.
Introduction Complementary therapies, such as massage and reflexology, are widely used in palliative care settings. People with advanced disease report a range of physical and psychological benefits, however clinical trials evidence for effectiveness of complementary therapy is inconclusive. Developing a core outcome set (a list of outcomes deemed most important by key stakeholders) can ensure clinical trials consistently evaluate meaningful outcomes. Aims To develop a core outcome set for touch-based complementary therapies in palliative care. Methods Potentially relevant outcomes were identified by screening published randomised control trials of touch-based therapies in clinical populations identified in a systematic review, and qualitative studies of complementary therapies in people with advanced disease. Semi-structured interviews were conducted with patients and complementary therapists to identify additional relevant outcomes. Patients, complementary therapists and academics rated the importance of the identified outcomes in a modified online Delphi survey. Outcomes for which ≥70% of the group agreed were critically important and were discussed and voted on in a consensus meeting. Results 59 unique outcomes were identified from published literature and interviews. Of these, 17 were deemed critically important in the Delphi survey. From voting in the consensus meeting, five outcomes were selected for inclusion. An additional three outcomes were identified as important to patients and were incorporated. The final core outcome set comprises; Anxiety, Sleep quality, Overall mental wellbeing, Pain, Muscle relaxation, Mental resilience, Enjoyment and Patient satisfaction. Conclusions A Core Outcome Set reflecting the priorities of patients, complementary therapists and academics has been developed to be used in palliative care clinical trials. Impact Use of the core outcome set in future trials will standardise outcomes and allow for better data comparison and synthesis. Improving the evidence base will help us bridge the gap between patient experience and trial outcomes and better understand the effect of complementary therapies for patients receiving palliative care.
The physical environment is of critical importance to child development. Understanding how exposure to physical environmental domains such as greenspace, urbanicity, air pollution or noise affects aggressive behaviours in typical and neurodiverse children is of particular importance given the significant long-term impact of those problems. In this narrative review, we investigated the evidence for domains of the physical environment that may ameliorate or contribute to the display of aggressive behaviours. We have considered a broad range of study designs that include typically developing and neurodiverse children and young people aged 0–18 years. We used the GRADE system to appraise the evidence. Searches were performed in eight databases in July 2020 and updated in June 2022. Additional articles were further identified by hand-searching reference lists of included papers. The protocol for the review was preregistered with PROSPERO. Results: We retrieved 7174 studies of which 67 are included in this review. The studies reported on green space, environmental noise and music, air pollution, meteorological effects, spatial density, urban or rural setting, and interior home elements (e.g., damp/sensory aspects/colour). They all used well validated parent and child reported measures of aggressive behaviour. Most of the studies were rated as having low or unclear risk of bias. As expected, noise, air pollution, urbanicity, spatial density, colour and humidity appeared to increase the display of aggressive behaviours. There was a dearth of studies on the role of the physical environment in neurodiverse children. The studies were heterogeneous and measured a range of aggressive behaviours from symptoms to full syndromes. Greenspace exposure was the most common domain studied but certainty of evidence for the association between environmental exposures and aggression problems in the child or young person was low across all domains. We found a large knowledge gap in the literature concerning neurodiverse children, which suggests that future studies should focus on these children, who are also more likely to experience adverse early life experiences including living in more deprived environments as well as being highly vulnerable to the onset of mental ill health. Such research should also aim to dis-aggregate the underlying aetiological mechanisms for environmental influences on aggression, the results of which may point to pathways for public health interventions and policy development to address inequities that can be relevant to ill health in neurodiverse young people.
Background: Complementary therapies are widely used in palliative care settings. Qualitative research found that people with advanced disease report a range of physical and psychological benefits from complementary therapies, however evidence of their effectiveness from clinical trials is inconclusive. This may be because trials are limited by use of inappropriate outcome measures. Aims: To identify tools which capture the impact of massage, reflexology and aromatherapy in people with advanced disease. We (1) identified multi-domain tools used to evaluate these therapies in populations with any chronic health condition and (2) assessed whether tools were valid and psychometrically robust in populations with advanced disease. Design: A two-stage systematic review was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines (PROSPERO: CRD42020161199). Data sources: Six databases were searched (August 2021). Study methodological quality, tool psychometric properties and evidence quality were assessed. A global comparison score was generated. Results: Stage 1: 66 trials using 40 different multi-domain tools were identified. Stage 2: Of these tools, we identified papers for seven tools regarding development or validation in advanced disease populations. The majority of psychometric data were inconsistent or inconclusive. Data were mostly of low quality due to methodological issues. Conclusion: Of the tools identified, 'Functional Assessment of Cancer Therapy - General' appears to be the most suitable alternative tool against COMSIN criteria, for trials of massage, reflexology and aromatherapy in palliative care. Further tool validation is required before firm recommendations can be made. Co-development of a core outcome set could ensure relevant domains are assessed.
Background The development of evidence-based strategies to tackle complex public health issues has been widely recommended. Nevertheless, methodologically robust sources of evidence may not necessarily be perceived as useful to decision-making in local settings. Despite their high regard, the ability to utilise evidence from meta-analyses and systematic reviews is hampered by the lack of explicit connection between the contexts in which interventions were evaluated and the context in which the evidence is to be applied. Here we present the results of work that set out to develop new approaches for exploring and enhancing the generalisability of meta-analysis through additional synthesis. Methods We focused on children's health as a case example and reanalyzed a meta-analysis of school-based interventions to reduce fat intake and a meta-analysis of school-based interventions to improve positive mental health. We assessed how using existing observational data and employing statistical approaches (namely reweighting of effect sizes to reflect the similarity to areas of interest (recalibration), regression analysis, and cluster analysis) in novel ways can help to create an overall measure of effect from meta-analysis that is more applicable to a defined population and/or more interpretable for decision-making. Results Using a recalibration approach we found that, while overall the evidence suggests that the intervention under consideration was not effective in reducing fat intake, this interpretation changes when we place greater emphasis on the similarity of studies to particular settings. Namely, for both a fixed effect and random effects specification, studies that are more similar to Local Authorities of interest show greater effects and consequently contribute more towards the pooled effect size. In turn, the recalibrated effect size generated indicates a larger effect with a narrower confidence interval; in these areas we have greater confidence that school-based interventions will have an impact on reducing fat intake, and while the anticipated effect size remains small it may be substantial at a population level. Similarly, applying regression approaches to a meta-analysis of school-based interventions for children's mental health resulted in a clearer message of the influence of context and population factors to guide decision-making. Discussion The methodological advancements developed here for examining context in meta-analysis provide useful adjunct evidence to decision-makers, alongside existing meta-analytic evidence. This research also highlights the gulf between the deep and nuanced way in which diverse groups of stakeholders understand context, and the sparse treatment of context by researchers within trials and systematic reviews.
Background: Effective clinical escalation on recognition of maternal or fetal deterioration is a crucial component of maintaining safety in intrapartum settings. Objective: To overview systematic reviews on interventions for escalating care around birth. Search strategy: Reviews published 2015 to 2021. Sources searched included eight databases. Selection criteria Reviews involving randomised controlled trials on the clinical impact on mothers and neonates, process outcomes, and/or qualitative evidence on stakeholders’ perspectives on intervention. Where gaps were found other types of review evidence were considered. Data collection and analysis Cochrane approaches applied including in evaluating evidence quality. Results Seven systematic reviews and one scoping review were relevant for in-depth review: six were on clinical impact, and two on perspectives (studies from 16 countries, over 909,027 pregnancies/births of undefined risk). In comparison with no intervention, early warning systems trigger tools and team training in obstetric emergencies were evaluated. Various measures of clinical impact were used, only one on time-to-treat. We found that most evidence was of low to very-low quality because of study limitations and imprecision as outcomes are rare, and overall failed to find a clinical improvement favouring early warning systems trigger tools or training. Qualitative studies captured challenges in implementing trigger tools. Reviews of women’s perspectives or other types of care escalation were searched but not identified. This is not to suggest studies don’t exist. Conclusions Conclusions cannot be made on clinical effect of interventions to escalate care around birth as review evidence is limited. Evaluations need to consider use of proxy outcomes.
Introduction Opioid-induced bowel dysfunction (OIBD) is a major side effect from opioid use in the treatment for pain in cancer and in palliative care. OIBD may be characterised by constipation, incomplete evacuation, bloating, and gastric reflux. This study is a systematic review that is a partial update from a Cochrane review originally published in 2008. This update focuses on people with cancer and people receiving palliative care. Aims A systematic review to assess the effectiveness of mu-opioid antagonists (MOAs) for OIBD in people with cancer and people receiving palliative care. Method CENTRAL, MEDLINE, Embase, CINAHL, and Web of Science were searched up to June 2020. We included trials that assessed the effectiveness of MOAs for OIBD in people with cancer and people at a palliative stage. Our primary outcomes were laxation response, effect on analgesia, and adverse events. Results We identified ten trials. The MOAs evaluated in comparison with placebo included oral naldemedine (2 trials) for people with cancer and subcutaneous methylnaltrexone (2 trials) for people in palliative care where most participants had advanced cancer. The risk of spontaneous laxations in the medium term (two weeks) in the naldemedine arm was two times greater than those in the placebo arm (RR 2.00, 95%CI 1.59, 2.52) and was ten times greater in the methylnaltrexone arm compared to placebo arm (RR 9.98, 95%CI 4.96, 20.09). There was evidence that naldemedine increased the risk of serious adverse events (RR 3.34, 95%CI 0.85, 13.15). Conclusion There was moderate-certainty evidence that people with cancer may have improved bowel function with the use of oral naldemedine and people receiving palliative care may have improved bowel function when using subcutaneous methylnaltrexone. Impact In this review update, findings have been strengthened by the addition of two new trials. There is a need for further trials including additional outcomes, multiple centers and head-to-head MOA comparisons.
BACKGROUND Opioid-induced bowel dysfunction (OIBD) is characterised by constipation, incomplete evacuation, bloating, and gastric reflux. It is one of the major adverse events of treatment for pain in cancer and in palliative care, resulting in increased morbidity and reduced quality of life.This is an update of two Cochrane reviews. One was published in 2011, Issue 1 on laxatives and methylnaltrexone for the management of constipation in people receiving palliative care; this was updated in 2015 and excluded methylnaltrexone. The other was published in 2008, Issue 4 on mu-opioid antagonists (MOA) for OIBD. In this updated review, we only included trials on MOA (including methylnaltrexone) for OIBD in people with cancer and people receiving palliative care. OBJECTIVES To assess the effectiveness and safety of MOA for OIBD in people with cancer and people receiving palliative care. SEARCH METHODS We searched the Cochrane Central Register of Controlled Trials, MEDLINE, Embase, CINAHL, and Web of Science to August 2017. We also searched clinical trial registries and regulatory websites. We contacted manufacturers of MOA to identify further data. SELECTION CRITERIA We included randomised controlled trials (RCTs) that assessed the effectiveness and safety of MOA for OIBD in people with cancer and people at a palliative stage irrespective of the type of terminal disease they experienced. DATA COLLECTION AND ANALYSIS Two review authors assessed risk of bias and extracted data. The appropriateness of combining data from the trials depended upon sufficient homogeneity across the trials. Our primary outcomes were laxation, impact on pain relief, and adverse events. Impact on pain relief was a primary outcome because a possible adverse effect of MOAs is a reduction in pain relief from opioids. We assessed the evidence on these outcomes using GRADE. MAIN RESULTS We identified four new trials for this update, bringing the total number included in this review to eight. In total, 1022 men and women with cancer irrespective of stage or at a palliative care stage of any disease were randomised across the trials. The MOAs evaluated were oral naldemedine and naloxone (alone or in combination with oxycodone), and subcutaneous methylnaltrexone. The trials compared with MOA with a placebo or with the active intervention administered at different doses or in combination with other drugs. The trial of naldemedine and the two of naloxone in combination with oxycodone were in people with cancer irrespective of disease stage. The trial on naloxone alone was in people with advanced cancer. The four trials on methylnaltrexone were undertaken in palliative care where most participants had cancer. All trials were vulnerable to biases; four were at a high risk as they involved a sample of fewer than 50 participants per arm.In the trial of naldemedine compared to placebo in 225 participants, there were more spontaneous laxations over the two-week treatment for the intervention group (risk ratio (RR) 1.93, 95% confidence intervals (CI) 1.36 to 2.74; moderate-quality evidence). In comparison with higher doses, lower doses resulted in fewer spontaneous laxations (0.1 mg versus 0.2 mg: RR 0.73, 95% CI 0.55 to 0.95; 0.1 mg versus 0.4 mg: RR 0.69, 95% CI 0.53 to 0.89; moderate-quality evidence). There was moderate-quality evidence that naldemedine had no effect on opiate withdrawal. There were five serious adverse events. All were in people taking naldemedine (low-quality evidence). There was an increase in the occurrence of other (non-serious) adverse events in the naldemedine groups (RR 1.36, 95% CI 1.04 to 1.79, moderate-quality evidence). The most common adverse event was diarrhoea.The trials on naloxone taken either on its own, or in combination with oxycodone (an opioid) compared to oxycodone only did not evaluate laxation response over the first two weeks of administration. There was very low-quality evidence that naloxone alone, and moderate-quality evidence that oxycodone/naloxone, had no effect on analgesia. There was low-quality evidence that oxycodone/naloxone did not increase the risk of serious adverse events and moderate-quality evidence that it did not increase risk of adverse events.In combined analysis of two trials of 287 participants, we found methylnaltrexone compared to placebo induced more laxations within 24 hours (RR 2.77, 95% CI 1.91 to 4.04. I² = 0%; moderate-quality evidence). In combined analysis, we found methylnaltrexone induced more laxation responses over two weeks (RR 9.98, 95% CI 4.96 to 20.09. I² = 0%; moderate-quality evidence). The proportion of participants who had a rescue-free laxation response within 24 hours of the first dose was 59.1% in the methylnaltrexone arms and 19.1% in the placebo arm. There was moderate-quality evidence that the rate of opioid withdrawal was not affected. Methylnaltrexone did not increase the likelihood of a serious adverse event; there were fewer in the intervention arm (RR 0.59, 95% CI 0.38 to 0.93; I² = 0%; moderate-quality evidence). There was no difference in the proportion of participants experiencing an adverse event (RR 1.17, 95% CI 0.94 to 1.45; I² = 74%; low-quality evidence). Methylnaltrexone increased the likelihood of abdominal pain and flatulence.Two trials compared differing methylnaltrexone schedules of higher doses with lower doses. For early laxation, there was low-quality evidence of no clear difference between doses on analgesia and adverse events. Both trials measured laxation response within 24 hours of first dose (trial one: RR 0.82, 95% CI 0.41 to 1.66; trial two: RR 1.07, 95% CI 0.81 to 1.42). AUTHORS' CONCLUSIONS In this update, the conclusions for naldemedine are new. There is moderate-quality evidence to suggest that, taken orally, naldemedine improves bowel function over two weeks in people with cancer and OIBD but increases the risk of adverse events. The conclusions on naloxone and methylnaltrexone have not changed. The trials on naloxone did not assess laxation at 24 hours or over two weeks. There is moderate-quality evidence that methylnaltrexone improves bowel function in people receiving palliative care in the short term and over two weeks, and low-quality evidence that it does not increase adverse events. There is a need for more trials including more evaluation of adverse events. None of the current trials evaluated effects in children.
INTRODUCTION:The current COVID-19 pandemic has forced hospices to look for more ways to support people remotely, including psychological support. Emotional disclosure-based interventions hold potential as a way of providing support remotely. However, evidence of their efficacy in people with terminal illness is mixed. Reviews have highlighted this may be due to interventions not being tailored to the unique needs of this population. In response to this, we are developing Let It Out (LIO), an online, self-guided emotional disclosure-based intervention tailored for people living with terminal illness.AIMS:The primary objective of the study is to optimise the design of the LIO intervention. Secondary objectives include assessing its acceptability and feasibility; exploring potential impact on well-being; identifying potential adverse effects; and informing choice of outcome measures for potential future evaluation.METHODS AND ANALYSIS:A single arm, mixed-methods, multisite, longitudinal study. Up to 40 people living with a terminal illness under the care of hospices in England and Scotland will receive the online LIO intervention. LIO consists of 3, self-guided expression sessions over 2 weeks. The primary outcome measures are (1) a structured feedback form completed by participants after the final expression session; and (2) semi-structured interviews and focus groups with ≤15 patient participants, ≤30 hospice staff and ≤15 informal carers. These quantitative and qualitative data will be triangulated via process evaluation to inform optimisation of the intervention design. Secondary outcome measures include validated measures of physical and psychological health collected at baseline and after the final expression session (immediately, 1, 4 and 8 weeks after); and data on recruitment, retention and fidelity.ETHICS AND DISSEMINATION:The study is approved by the University College London Research Ethics Committee (reference: 15281/002). The findings will be shared through peer-reviewed scientific journals and conferences, and traditional, online and social media platforms.
Background: The COVID-19 pandemic has accelerated adoption of remote ways of providing hospice care, including psychological support. Emotional disclosure (ED) interventions hold potential as a way of providing such support online. But evidence supporting use of ED interventions for people living with terminal illness is limited. We are testing an online psychological intervention, Let It Out (LIO), consisting of three self-guided expression sessions over two weeks. Aims: The primary aim is to inform the development of LIO. Secondary aims include assessing LIO's acceptability, feasibility of study methods and potential impact on wellbeing. Methods: A mixed-methods, longitudinal study. Adults receiving palliative care were recruited from six UK hospices from September 2020 to January 2021. Participants received the LIO intervention, and completed physical and psychological health-related questionnaires at baseline and immediately, one week, four weeks and eight weeks after the final expression session, with a feedback form after the final session. Two also took part in a semi-structured interview. Focus groups and interviews have also been held with 12 hospice staff and volunteers. Data have been triangulated through process evaluation. Results: Of 13 patients recruited, 8 have completed all three expression sessions. Most people who finish LIO find it helpful (7/8). One person who withdrew found the online platform too complicated to use. Staff felt LIO could be helpful for computer-literate patients, but reported difficulties with recruitment. Conclusion: Preliminary evidence suggests LIO holds potential to support wellbeing for some people living with terminal illness. Adaptions are required to make the online platform more user-friendly. This study demonstrates the value of robust consultation with patients and staff in the development of acceptable online interventions for use in palliative care.
People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.
BACKGROUND The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is increasing. OBJECTIVES To assess the effectiveness and safety of enteral tube feeding for people with severe dementia who develop problems with eating and swallowing or who have reduced food and fluid intake. SEARCH METHODS We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases and two trials registers on 14 April 2021. SELECTION CRITERIA We included randomised controlled trials (RCTs), or controlled non-randomised studies. Our population of interest was adults of any age with a diagnosis of primary degenerative dementia of any cause, with severe cognitive and functional impairment, and poor nutritional intake. Eligible studies evaluated the effectiveness and complications of enteral tube feeding via a nasogastric or gastrostomy tube, or via jejunal post-pyloric feeding, in comparison with standard care or enhanced standard care, such as an intervention to promote oral intake. Our primary outcomes were survival time, quality of life, and pressure ulcers. DATA COLLECTION AND ANALYSIS Three review authors screened citations and two review authors assessed full texts of potentially eligible studies against inclusion criteria. One review author extracted data, which were then checked independently by a second review author. We used the 'Risk Of Bias In Non-randomised Studies of Interventions' (ROBINS-I) tool to assess the risk of bias in the included studies. Risk of confounding was assessed against a pre-agreed list of key potential confounding variables. Our primary outcomes were survival time, quality of life, and pressure ulcers. Results were not suitable for meta-analysis, so we presented them narratively. We presented results separately for studies of percutaneous endoscopic gastrostomy (PEG) feeding, nasogastric tube feeding and studies using mixed or unspecified enteral tube feeding methods. We used GRADE methods to assess the overall certainty of the evidence related to each outcome for each study. MAIN RESULTS We found no eligible RCTs. We included fourteen controlled, non-randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies. Four studies with 36,816 participants assessed the effect of PEG feeding on survival time. None found any evidence of effects on survival time (low-certainty evidence). Three of four studies using mixed or unspecified enteral tube feeding methods in 310 participants (227 enteral tube feeding, 83 no enteral tube feeding) found them to be associated with longer survival time. The fourth study (1386 participants: 135 enteral tube feeding, 1251 no enteral tube feeding) found no evidence of an effect. The certainty of this body of evidence is very low. One study of PEG feeding (4421 participants: 1585 PEG, 2836 no enteral tube feeding) found PEG feeding increased the risk of pressure ulcers (moderate-certainty evidence). Two of three studies reported an increase in the number of pressure ulcers in those receiving mixed or unspecified enteral tube feeding (234 participants: 88 enteral tube feeding, 146 no enteral tube feeding). The third study found no effect (very-low certainty evidence). Two studies of nasogastric tube feeding did not report data on survival time or pressure ulcers. None of the included studies assessed quality of life. Only one study, using mixed methods of enteral tube feeding, reported on pain and comfort, finding no difference between groups. In the same study, a higher proportion of carers reported very heavy burden in the enteral tube feeding group compared to no enteral tube feeding. Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low. There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low-certainty evidence. Five studies reported a variety of harm-related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. AUTHORS' CONCLUSIONS We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here.
CONTEXT Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION Of 69 335 unique citations, 81 studies were included in the review. RESULTS Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
Background: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. Aim: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by: (1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and (2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. Design: A scoping review drawing on Intervention Component Analysis to combine evidence from studies' methods, results, and discussion sections. Data sources: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. Results: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. Conclusions: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions.
Background Providing psychological support to people living with terminal illness is a fundamental part of hospice care. Recent research on delivery of psychological services in hospices in the United Kingdom (UK) on a national level, including inequalities or variation in practice, is limited. A nationwide survey will highlight any differences in provision and in doing so help focus future research and inform best practice both within the UK, and internationally. The specific objectives of this survey are to (1) chart the types of psychological support available to adult patients in hospices in the UK in line with the National Institute for Health and Care Excellence model; (2) explore how services are organised; and (3) gather service perspectives on adequacy of care, and facilitators and barriers to appropriate practice. Methods A cross-sectional online survey emailed to adult hospices in the UK in November–December 2019. One staff member involved in the delivery and/or organisation of psychological support was invited to participate per hospice. Of 193 invited hospices, 116 took part. Results Sixteen percent rated their hospice psychological service as wholly adequate. The majority reported that services can access specialist professionals, but many relied on external referrals. Barriers to best practice included funding and staff capacity; facilitators included clear referral structures, audit and appropriate needs and outcome assessments. Conclusions Access to psychological professionals has improved since the last survey 15 years ago, but the majority of responders felt their overall service was not wholly adequate. Basic emotional support is largely felt to be sufficient, but our results indicate a need for improvements in access to more specialist care. Partnerships with external mental health services may be key. Our findings highlight core facilitators and barriers to providing good psychological care at the end of life that should be considered by services both within the UK and on an international level.