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Many assume the pandemic is behind us, but there's a 'silent pandemic' happening of collective mental health challenges and burnout.
Addressing the Environmental Impact of Pharmaceuticals: A Call to Action
The contribution of health care to environmental and climate crises is significant, under-addressed, and with consequences for human health. This editorial is a call to action. Focusing on pharmaceuticals as a major environmental threat, we examine pharmaceutical impacts across their lifecycle, summarising greenhouse gas emissions, pollution, and biodiversity loss, and outlining challenges and opportunities to reduce this impact. We urge health care decision-makers and providers to urgently consider environmental factors in their decision-making relating to both policy, and practice, promoting actions such as rational prescribing, non-pharmaceutical interventions, and research and advocacy for sustainable production, procurement, and use.
Intervention development and optimisation of a multi-component digital intervention for the monitoring and management of hypertensive pregnancy: the My Pregnancy Care Intervention
Background: Hypertensive disorders of pregnancy affect around 10% of pregnancies and remain a major cause of maternal and foetal morbidity and mortality. Trials have shown that self-monitoring blood pressure during pregnancy is safe, but self-monitoring alone does not improve blood pressure control or pregnancy outcomes. This study aimed to develop and optimise a multicomponent intervention to support blood pressure monitoring, hypertension management and urine testing within current care pathways. Methods: Relevant literature, input from patient and public contributors (PPI) and stakeholder groups, and the researcher’s previous experience were used to develop an initial intervention. Think-aloud interviews and focus groups with women from diverse backgrounds with lived experience of hypertension in pregnancy and healthcare professionals provided feedback on the intervention prototype (n = 29). The MRC Framework for Developing Complex Interventions guided the processes to optimise the intervention’s acceptability and maximise engagement. A detailed tabulation of participants’ views and logic models was produced using the COM-B model of Behaviour Change. Results: The prototype intervention was acceptable and viable to both pregnant women with experience of hypertensive pregnancy and healthcare professionals. Emerging themes centred on how the intervention could be optimised within current National Health Service care pathways and the lives of pregnant women to support behaviour change. Key target behaviours to support the intervention included increasing understanding of blood pressure management, engagement with the intervention, monitoring blood pressure and urine and taking appropriate actions based on those readings. This informed the development of recommendations involving clear action timelines for women and evidence-based guidance to support decision-making by healthcare professionals. The findings were used to produce the multi-component My Pregnancy Care intervention, consisting of a smartphone application and an information leaflet to support blood pressure self-monitoring and proteinuria self-testing, self-management of antihypertensive medication and smartphone application use. Conclusions: This research provided comprehensive insight into the needs of pregnant women with hypertension and their healthcare teams regarding self-monitoring and management of blood pressure. This supported the development of a tailored multi-component digital intervention that addresses barriers to blood pressure self-management by being user-friendly, persuasive and acceptable. It is hoped that the intervention will support the monitoring and management process, collaboration between healthcare professionals and women, clinical action and improved clinical outcomes.
Uncertainty Quantification in Cost-effectiveness Analysis for Stochastic-based Infectious Disease Models: Insights from Surveillance on Lymphatic Filariasis.
Cost-effectiveness analyses (CEA) typically involve comparing effectiveness and costs of one or more interventions compared to standard of care, to determine which intervention should be optimally implemented to maximise population health within the constraints of the healthcare budget. Traditionally, cost-effectiveness evaluations are expressed using incremental cost-effectiveness ratios (ICERs), which are compared with a fixed willingness-to-pay (WTP) threshold. Due to the existing uncertainty in costs for interventions and the overall burden of disease, particularly with regard to diseases in populations that are difficult to study, it becomes important to consider uncertainty quantification whilst estimating ICERs. To tackle the challenges of uncertainty quantification in CEA, we propose an alternative paradigm utilizing the Linear Wasserstein framework combined with Linear Discriminant Analysis (LDA) using a demonstrative example of lymphatic filariasis (LF). This approach uses geometric embeddings of the overall costs for treatment and surveillance, disability-adjusted lifeyears (DALYs) averted for morbidity by quantifying the burden of disease due to the years lived with disability, and probabilities of local elimination over a time-horizon of 20 years to evaluate the cost-effectiveness of lowering the stopping thresholds for post-surveillance determination of LF elimination as a public health problem. Our findings suggest that reducing the stopping threshold from <1% to <0.5% microfilaria (mf) prevalence for adults aged 20 years and above, under various treatment coverages and baseline prevalences, is cost-effective. When validated on 20% of test data, for 65% treatment coverage, a government expenditure of WTP ranging from $500 to $3,000 per 1% increase in local elimination probability justifies the switch to the lower threshold as cost-effective. Stochastic model simulations often lead to parameter and structural uncertainty in CEA. Uncertainty may impact the decisions taken, and this study underscores the necessity of better uncertainty quantification techniques within CEA for making informed decisions.
Patient buy-in to social prescribing through link workers as part of person-centred care: a realist evaluation.
BACKGROUND: Social prescribing link workers have become part of primary health care in recent years. They help patients to recognise non-medical factors affecting their health and identify sources of support, often in the voluntary, community and social enterprise sector. They form part of wider work to strengthen person-centred care, which actively seeks to engage individuals in decision-making about their health, taking into account their medical, social, psychological, financial and spiritual circumstances. OBJECTIVE: To understand how buy-in to social prescribing and the link worker role is established for a patient, and how this relates to person-centred care. DESIGN: A realist evaluation. SETTING: Patients engaging with link workers in seven different parts of England were involved. METHODS: As part of data collection, we observed link workers interacting with 35 patients. We also interviewed 61 patients and re-interviewed 41 of them 9-12 months later. Data were coded and developed into context-mechanism-outcome configurations, which were used to produce a programme theory. RESULTS: Data highlighted how patients might be uncertain about the link worker role but agree to a referral as they sought assistance with their non-medical issues. Patients talked about experiencing a sense of hope through the trust they developed in a link worker. This trust was established through the communication skills and knowledge demonstrated by a link worker, and by their ability to act as an anchor point when required - a reliable, consistent source of support to whom patients could offload. The link worker role also involved connecting patients to external support, which called for sensitivity around how ready someone was to move forward; this was shaped by a patient's motivation but also their capacity to make changes given other demands in their life. Connecting patients to external support could be affected by structural factors outside the link workers' control (e.g. housing options or employment opportunities). LIMITATIONS: We did not interview patients who had rejected the offer of social prescribing, and most had a positive view of meeting with a link worker. CONCLUSIONS: Person-centred care is engendered by link workers through their skills, knowledge and ability to respond to the individual readiness of patients to engage with external support. It can be curtailed by structural factors outside link workers' sphere of control, such as access to housing or caring responsibilities of patients. This can hinder patients' ability to 'connect to', leaving link workers to continue 'connecting with' patients as they act as an anchor point. FUTURE WORK: Exploration is required of factors affecting patients who interact with a link worker but do not access external support. Longitudinal work with a cohort of patients, speaking to them on a regular basis, may provide further understanding in this respect. FUNDING: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR130247.
Using qualitative research and the person-based approach to coproduce an inclusive intervention for postpartum blood pressure self-management
ObjectiveTo coproduce an inclusive intervention for blood pressure (BP) self-management post partum.DesignUsing the person-based approach, an intervention was coproduced in three phases. Phase 1 entailed intervention coproduction with a diverse patient and public involvement panel and stakeholders (clinical, academic, government and third sector-based). Phase 2 involved intervention optimisation through think-aloud interviews with former patients and clinicians. Phase 3 was user-testing followed by semistructured interviews with current patients and their clinicians.SettingPatients and clinicians from primary and secondary care drawn from Southern and Northern England.ParticipantsSeven former patients and 11 clinicians participated in think-aloud interviews to provide their views of intervention prototypes (phase 2). Additionally, 23 patients and 9 of their clinicians participated in semistructured interviews after using the intervention for 2 weeks (phase 3).InterventionAn interactive patient app—My BP Care—and accompanying leaflet to support BP self-monitoring. These were linked to a clinician dashboard with alerts and an emailing system to facilitate appropriate titration of patient medication.ResultsThe intervention was codeveloped following these guiding principles to ensure it was accessible and inclusive: easily comprehensible, motivating, simple and quick to use. Interview findings indicated that patient adherence to the intervention was promoted by the initial patient training conducted by the midwives, the enhanced clinical oversight they felt they received as a result of the intervention, the free BP monitor they received, reassurance they received of the medication safety for them and their baby, the intervention’s simplicity and the motivating reminders they received.ConclusionsThrough coproduction with a diverse group of patients and stakeholders, and optimisation through testing among further diverse patients and clinicians, we developed a multicomponent intervention that is accessible and engaging for diverse patients, compatible with prevailing clinical practice and adaptable to different clinical contexts.
Effects of temporarily suspending low-dose methotrexate treatment for 2 weeks after SARS-CoV-2 vaccine booster on vaccine response in immunosuppressed adults with inflammatory conditions: protocol for a multicentre randomised controlled trial and nested mechanistic substudy (Vaccine Response On/Off Methotrexate (VROOM) study)
This article consists of a citation of a published article describing research funded by the Efficacy and Mechanism Evaluation programme under project number NIHR134607, and is provided as as part of the complete record of research outputs for this project. The original publication is available at: https://doi.org/10.1136/bmjopen-2022-062599 Introduction It is unknown if a temporary break in long-term immune-suppressive treatment after vaccination against COVID-19 improves vaccine response. The objective of this study was to evaluate if a 2-week interruption in low-dose weekly methotrexate treatment after SARS-CoV-2 vaccine boosters enhances the immune response compared with continuing treatment in adults with autoimmune inflammatory conditions. Methods and analysis An open-label, pragmatic, prospective, parallel group, randomised controlled superiority trial with internal feasibility assessment and nested mechanistic substudy will be conducted in rheumatology and dermatology clinics in approximately 25 UK hospitals. The sample size is 560, randomised 1:1 to intervention and usual care arms. The main outcome measure is anti-spike receptor-binding domain (RBD) antibody level, collected at prebooster (baseline), 4 weeks (primary outcome) and 12 weeks (secondary outcome) post booster vaccination. Other secondary outcome measures are patient global assessments of disease activity, disease flares and their treatment, EuroQol 5- dimention 5-level (EQ-5D-5L), self-reported adherence with advice to interrupt or continue methotrexate, neutralising antibody titre against SARS-CoV-2 (mechanistic substudy) and oral methotrexate biochemical adherence (mechanistic substudy). Analysis of B-cell memory and T-cell responses at baseline and weeks 4 and 12 will be investigated subject to obtaining additional funding. The principal analysis will be performed on the groups as randomised (ie, intention to treat). The difference between the study arms in anti-spike RBD antibody level will be estimated using mixed effects model, allowing for repeated measures clustered within participants. The models will be adjusted for randomisation factors and prior SARS-CoV-2 infection status. Ethics and dissemination This study was approved by the Leeds West Research Ethics Committee and Health Research Authority (REC reference: 21/HRA/3483, IRAS 303827). Participants will be required to give written informed consent before taking part in the trial. Dissemination will be via peer review publications, newsletters and conferences. Results will be communicated to policymakers. Trial registration number ISRCTN11442263. Funding This publication was funded by the Efficacy and Mechanism Evaluation programme as a part of award number NIHR134607. This article reports on one component of the research award Vaccine Response On/Off Methotrexate (VROOM): does temporarily suspending methotrexate treatment for two weeks enhance COVID-19 vaccine response? A randomised controlled trial. For more information about this research please view the award page [https://fundingawards.nihr.ac.uk/award/NIHR134607] DOI https://doi.org/10.1136/bmjopen-2022-062599
Effect of a 2-week interruption in methotrexate treatment on COVID-19 vaccine response in people with immune-mediated inflammatory diseases (VROOM study): a randomised, open label, superiority trial
This article consists of a citation of a published article describing research funded by the Efficacy and Mechanism Evaluation programme under project number NIHR134607, and is provided as as part of the complete record of research outputs for this project. The original publication is available at: https://doi.org/10.1016/S2665-9913(23)00298-9 Summary Background Methotrexate is the first-line treatment for immune-mediated inflammatory diseases and reduces vaccine-induced immunity. We evaluated if a 2-week interruption of methotrexate treatment immediately after COVID-19 booster vaccination improved antibody response against the S1 receptor binding domain (S1-RBD) of the SARS-CoV-2 spike protein and live SARS-CoV-2 neutralisation compared with uninterrupted treatment in patients with immune-mediated inflammatory diseases. Method We did a multicentre, open-label, parallel-group, randomised, superiority trial in secondary-care rheumatology and dermatology clinics in 26 hospitals in the UK. Adults (aged ≥18 years) with immune-mediated inflammatory diseases taking methotrexate (≤25 mg per week) for at least 3 months, who had received two primary vaccine doses from the UK COVID-19 vaccination programme were eligible. Participants were randomly assigned (1:1) using a centralised validated computer program, to temporarily suspend methotrexate treatment for 2 weeks immediately after COVID-19 booster vaccination or continue treatment as usual. The primary outcome was S1-RBD antibody titres 4 weeks after COVID-19 booster vaccination and was assessed masked to group assignment. All randomly assigned patients were included in primary and safety analyses. This trial is registered with ISRCTN, ISRCTN11442263; following a pre-planned interim analysis, recruitment was stopped early. Finding Between Sept 30, 2021, and March 7, 2022, we screened 685 individuals, of whom 383 were randomly assigned: to either suspend methotrexate (n=191; mean age 58·8 years [SD 12·5], 118 [62%] women and 73 [38%] men) or to continue methotrexate (n=192; mean age 59·3 years [11·9], 117 [61%] women and 75 [39%] men). At 4 weeks, the geometric mean S1-RBD antibody titre was 25 413 U/mL (95% CI 22 227-29 056) in the suspend methotrexate group and 12 326 U/mL (10 538-14 418) in the continue methotrexate group with a geometric mean ratio (GMR) of 2·08 (95% CI 1·59-2·70; p<0·0001). No intervention-related serious adverse events occurred. Interpretation 2-week interruption of methotrexate treatment in people with immune-mediated inflammatory diseases enhanced antibody responses after COVID-19 booster vaccination that were sustained at 12 weeks and 26 weeks. There was a temporary increase in inflammatory disease flares, mostly self-managed. The choice to suspend methotrexate should be individualised based on disease status and vulnerability to severe outcomes from COVID-19. Funding National Institute for Health and Care Research. Funding This publication was funded by the Efficacy and Mechanism Evaluation programme as a part of award number NIHR134607. This article reports on one component of the research award Vaccine Response On/Off Methotrexate (VROOM): does temporarily suspending methotrexate treatment for two weeks enhance COVID-19 vaccine response? A randomised controlled trial. For more information about this research please view the award page [https://fundingawards.nihr.ac.uk/award/NIHR134607] DOI https://doi.org/10.1016/S2665-9913(23)00298-9
A systematic review of the association between early comprehensive geriatric assessment and outcomes in hip fracture care for older people
Aims Performance indicators are increasingly used to improve the quality of healthcare provided to hip fracture patients. Joint care, under orthopaedic surgeons and physicians with an interest in older patients, is one of the more common indicators of high-quality care. In this systematic review, we investigated the association between ‘comprehensive geriatric assessment’ and patient outcomes following hip fracture injury. Methods In total, 12 electronic databases and other sources were searched for evidence, and the methodological quality of studies meeting the inclusion criteria was assessed.The protocol for this suite of related systematic reviews was registered with PROSPERO (ID: CRD42023417515). Results A total of 24,591 articles were reviewed, and 39 studies met the inclusion criteria for the review, involving a total of 25,363 patients aged over 60 years with a hip fracture. There were five randomized clinical trials, three quasi-experimental studies, two non-randomized parallel group control trials, 22 pre-/post-intervention studies, and seven retrospective cohort studies, conducted between January 1992 and December 2021. The timing and content of a comprehensive geriatric assessment was ill-defined in many studies and care pathways were heterogeneous, which precluded meta-analysis of the data. Early comprehensive geriatric assessment was associated with improved outcomes in 31 of the 36 (86%) patient-reported outcomes, including improved mobility (acute/ long-term), functional status, and better quality of life. In total, 155 out of 219 (70.78%) clinical outcomes derived from hospital records showed a positive association with early comprehensive geriatric review, including reduced preoperative time and length of hospital stay, reduced incidence of postoperative complications, fewer hospital readmissions, and lower mortality. Conclusion Early comprehensive geriatric assessments after hip fracture in older people is associated with improved patient-reported outcomes and better clinical outcomes such as reduced incidence of complications, length of hospital stay, preoperative waiting time, and mortality. Standardization of the definitions of ‘early’ and ‘comprehensive’ geriatric assessments and consistent reporting of care pathway models would improve future evidence synthesis.
Developing a set of key principles for care planning within older adult care homes: Study protocol for a modified Delphi survey
Background Older adult care homes in England are required to develop care plans on behalf of each of their residents and to make these documents available to those who provide care. However, there is a lack of formal agreement around the key principles that should inform the development of care plans in care homes for older adults. Using a modified Delphi survey, we intend to generate consensus on a set of key principles that should inform the care planning process. Methods and analysis A two-stage modified Delphi survey will be used to try to reach a consensus on a set of key principles to inform care planning within older adult care homes in England. An interdisciplinary panel of approximately 50 people with experience in care planning will be convened and invited to provide feedback on a set of key principles. We will use an iterative, quasi-anonymous, multistage approach with controlled feedback. In the first round, panellists will be asked to provide feedback on a draft document whose contents have been informed by a systematic scoping review and consultations with care home staff. The first round will be administered and subsequently analysed. The results from the first round will be fed back to the panel members and panellists will be asked to complete a second survey. In each round, panel members will use a 5-point unipolar scale to rate their agreement with the item. Consensus will be considered if ≥75% of participants rate an item as 4-5. Ethics and dissemination This study to which this protocol relates has been granted ethical approval by the University of Kent's Division for the Study of Law, Society and Social Justice Research Committee Ethics Panel (reference: 1006) on 9 April 2024. The results of this project will be disseminated through conferences and one or more peer-reviewed journals. In a subsequent research phase, the research team plans to share the key principles document developed through this modified Delphi survey with care home residents and their families and friends. We plan to invite their feedback through a series of focus groups with a view to developing a related document for the family and friends of care home residents.
Investigating Person-Centred Care Planning in Care Homes Across England: An Exploratory Study of Practices and Contextual Factors
Aims: To report how person-centred care principles are applied to care planning and to explore the contextual factors affecting their implementation in older adult care homes in England. Design: A combined framework analysis and quantitative content analysis study. Methods: Using a semi-structured questionnaire, we interviewed 22 care home managers in England, exploring topics around care planning processes. Audio recordings were transcribed verbatim. Transcripts were analysed through a combined framework approach and content analysis. Results: Most care home managers discussed person-centred care planning in terms of understanding residents' values and preferences and their engagement in decision-making. Factors facilitating person-centred planning implementation included accessible planning tools, supportive care home leadership, effective communication and collaborative partnerships. Inhibiting factors included regulatory and care practice misalignment, time constraints and adverse staffing conditions. Conclusion: Differences between care home practitioners' understanding and practice of person-centred care planning require further examination to improve understanding of the sector's complexity and to develop suitable care planning instruments. Implications for the Profession: Findings demonstrate a need for improved staff access to specialised person-centred care training and an opportunity for care home nursing practitioners to lead the co-development of digital person-centred care planning tools that reflect the reality of long-term care settings. Impact: Identifying factors influencing the implementation of holistic approaches to care planning makes clear the need for modernising long-term care policy and practice to adapt to the contemporary challenges of the care home sector. Reporting Method: Study reporting was guided by the Standards for Reporting Qualitative Research. Patient or Public Contribution: Two public involvement advisors with lived experience of caring for a relative living in a care home contributed to the development of the interview guide, advised on care home engagement, guided the interpretation of the findings and commented on the drafted manuscript.
Care in the Time of COVID, 2020
The Care in the Time of COVID project aimed to understand the mental health and lived experiences of adults with care experience during the UK’s first COVID-19 lockdown. Data were collected during the first UK lockdown, between 20 May and 19 June 2020, through an online Qualtrics survey. Participants were asked to self-identify as care-experienced by confirming they had spent some time in the care of a local authority (foster care, kinship care, residential or group home) before 18. They were asked about their: level of education, occupation (current and, prior to, 16 March 2020), access to outdoor space, whether they had been identified by the NHS as vulnerable to COVID-19, and whether they had suspected or confirmed COVID-19. The survey also included three validated measures: the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder assessment (GAD-7), and the Oslo Social Support Scale (OSSS). Participants were also asked to submit a diary in response to one of four prompts. Two of the prompts remained the same throughout the project, and two prompts were changed weekly and were selected by the research team to encourage participants to reflect on a wide range of experiences. The survey was completed by 204 people. Most participants completed the survey once (n=178), a small number took part twice (n = 22) and four people completed the survey three times. At least one diary entry was provided by 140 people. Some people submitted more than one diary entry. Diaries also include pictures of participants' artwork, photographs and other materials.
The Perceived Impact of the COVID-19 Pandemic on the Mental Health and Well-being of Care-Experienced People
The impact of the coronavirus disease 2019 (COVID-19) pandemic on care-experienced people has been the subject of research, but important gaps remain in our understanding of how care-experienced people felt their mental health and well-being were affected by the pandemic. Care-experienced adults from across the UK were invited to complete a survey and submit a diary during the first lockdown. Responses were received from 140 people, aged eighteen to sixty-nine years. Most respondents reported that their mental health deteriorated due to the pandemic and lockdown. However, a substantial minority thought that either there had been no change or the lockdown had helped them make positive improvements. Improvements were attributed to stable housing and employment, support from services and transferable skills they had learnt in care. A minority of respondents referred to their care status in their diaries. Most diarists presented their experiences as being common to other, non-care-experienced, people. This article showcases the resilience of many care-experienced people, including some who made explicit reference to the benefits of coping strategies developed while in care. The findings of this study reveal that when provided with the right support, the care system can assist people to develop important life skills.
Implementation of RESTORE2 in Care Homes in England: A Mixed-Methods Evaluation
Context: Older adults are more susceptible to acute deterioration. Delayed recognition or response is linked to poor health outcomes and adverse events. Identification and management of deterioration is more difficult in this population due to increasingly complex healthcare needs and limited/no healthcare knowledge of some staff. Enhancing ability of care home staff to recognise and communicate concerns could reduce avoidable harm for residents at risk of or experiencing physical deterioration. Objective: To evaluate the implementation of RESTORE2, a physical deterioration and escalation tool, in care homes. Methods: A mixed-methods approach, comprising individual semi-structured interviews and online survey, was used. A total of 35 care home staff from 34 care homes took part in this evaluation. Findings: Implementation of the full RESTORE2 tool was low. Several challenges that impeded successful implementation including complexity, uncertainty over carers’ role in carrying out clinical observations, inadequate training and buy-in from health-service providers, need to be addressed. Nevertheless, some benefits including improved staff knowledge/confidence to identify deterioration, escalate and communicate concerns, as well as potential to reduce unnecessary healthcare utilisation particularly 999 calls and hospital admissions were reported. Limitations: This study was limited by the small sample size of the quantitative phase. The Covid-19 pandemic affected recruitment and engagement with care homes. Implications: RESTORE2 has a long way to go to become a common language in social care. Collaboration between health professionals and care staff is important for RESTORE2 to become embedded into practice. Further quantitative and qualitative research is required to strengthen the evidence base.
Care Planning Interventions for Care Home Residents: A Scoping Review
Context: Previous reviews of care planning (CP) interventions in care homes focus on higher quality research methodologies and exclusively consider advanced care planning (ACP), thereby excluding many intervention-based studies that could inform current practice. CP is concerned with residents’ current circumstances while ACP focuses on expressing preferences which relate to future care decisions. Objectives: To identify, map and summarise studies reporting CP interventions for older people in care homes. Methods: Seven electronic databases were searched from 1 January 2012 until 1 January 2022. Studies of CP interventions, targeted at older people (>60 years), whose primary place of residence was a care home, were eligible for inclusion. Two reviewers independently screened the titles and abstracts of 3778 articles. Following a full-text review of 404 articles, data from 112 eligible articles were extracted using a predefined data extraction form. Findings: Studies were conducted in 25 countries and the majority of studies took place in the United States, Australia and the UK. Most interventions occurred within nursing homes (61%, 68/112). More than 90% of interventions (93%, 104/112) targeted staff, and training was the most common focus (80%, 83/104), although only one included training for ancillary staff (such as cleaners and caterers). Only a third of the studies (35%, 39/112) involved family and friends, and 62% (69/112) described interventions to improve CP practices through multiple means. Limitations: Only papers written in English were included, so potentially relevant studies may have been omitted. Implications: Two groups of people – ancillary workers and family and friends – who could play a valuable role in CP were often not included in CP interventions. These oversights should be addressed in future research.