Pain assessment and management in care homes: understanding the context through a scoping review.

BACKGROUND: Internationally, 2-5% of people live in residential or nursing homes, many with multi-morbidities, including severe cognitive impairment. Pain is frequently considered an expected part of old age and morbidity, and may often be either under-reported by care home residents, or go unrecognized by care staff. We conducted a systematic scoping review to explore the complexity of pain recognition, assessment and treatment for residents living in care homes, and to understand the contexts that might influence its management. METHODS: Scoping review using the methodological framework of Levac and colleagues. Articles were included if they examined pain assessment and/or management, for care or nursing home residents. We searched Medline, CINAHL, ASSIA, PsycINFO, EMBASE, Cochrane Library, and Google Scholar; reference lists were also screened, and website searches carried out of key organisations. Conversations with 16 local care home managers were included to gain an understanding of their perspective. RESULTS: Inclusion criteria were met by 109 studies. Three overarching themes were identified: Staff factors and beliefs - in relation to pain assessment and management (e.g. experience, qualifications) and beliefs and perceptions relating to pain. Pain assessment - including use of pain assessment tools and assessment/management for residents with cognitive impairment. Interventions - including efficacy/effects (pharmaceutical/non pharmaceutical), and pain training interventions and their outcomes. Overall findings from the review indicated a lack of training and staff confidence in relation to pain assessment and management. This was particularly the case for residents with dementia. CONCLUSIONS: Further training and detailed guidelines for the appropriate assessment and treatment of pain are required by care home staff. Professionals external to the care home environment need to be aware of the issues facing care homes staff and residents in order to target their input in the most appropriate way.

Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals.

BACKGROUND: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group's perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time. METHODS: This qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach. RESULTS: Life transitions of YA and significant others are complex; they experience multiple and multi-dimensional transitions across several domains. The findings challenge the notion that all life transitions are triggered by health transitions of YAs, and has highlighted environmental factors (attitudinal and systemic) that can be changed to facilitate smoother transitions in various aspects of their lives. CONCLUSIONS: This study makes a unique and significant contribution to literature. It provides evidence and rich narratives for policy makers and service providers to change policies and practices that are in line with the needs of YAs with life-limiting conditions as they transition to adulthood. Families and professionals have specific training needs that have not yet been met fully.

Developing a taxonomy to characterise trusted adult support in the lives of adolescents.

INTRODUCTION: A systematic review of trusted adult interventions for adolescents revealed that there was no common terminology, agreed explicit definition, or detail, regarding the personal qualities, functions and roles fulfilled by trusted adults that was used consistently across the papers. To provide clarity, we therefore aimed to produce a taxonomy of trusted adult input, using evidence drawn from our review. METHODS: Data from the review findings were used to compile the taxonomy, moving from the general to the more specific, in a four stage process. This involved: (1) compilation of elements described in individual papers, (2) grouping of elements derived from stage 1 into categories, (3) examination of context and nature of the relationship, (4) development of a categorisation of trusted adult input. FINDINGS: The resulting taxonomy encapsulates core essential qualities provided by people acting in trusted adult or mentoring roles, and gives details relating to what a young person might expect from individuals they put their trust in. The taxonomy consists of six categories relating to: delivery context, roles of trusted adults, nature of support, personal qualities, actions/functions, and impact. CONCLUSIONS: The taxonomy describes key elements that define the trusted adult role, and has the potential to inform the development of policies and guidelines relating to support provision. It may be used as a framework for the reporting of trusted adult interventions within research, and act as a helpful guide if a young person is in doubt about the behaviour or qualities displayed by an adult in their environment.

Antenatal care trial interventions: a systematic scoping review and taxonomy development of care models.

BACKGROUND: Antenatal care models vary widely around the world, reflecting local contexts, drivers and resources. Randomised controlled trials (RCTs) have tested the impact of multi-component antenatal care interventions on service delivery and outcomes in many countries since the 1980s. Some have applied entirely new schemes, while others have modified existing care delivery approaches. Systematic reviews (SRs) indicate that some specific antenatal interventions are more effective than others; however the causal mechanisms leading to better outcomes are poorly understood, limiting implementation and future research. As a first step in identifying what might be making the difference we conducted a scoping review of interventions tested in RCTs in order to establish a taxonomy of antenatal care models. METHODS: A protocol-driven systematic search was undertaken of databases for RCTs and SRs reporting antenatal care interventions. Results were unrestricted by time or locality, but limited to English language. Key characteristics of both experimental and control interventions in the included trials were mapped using SPIO (Study design; Population; Intervention; Outcomes) criteria and the intervention and principal outcome measures were described. Commonalities and differences between the components that were being tested in each study were identified by consensus, resulting in a comprehensive description of emergent models for antenatal care interventions. RESULTS: Of 13,050 articles retrieved, we identified 153 eligible articles including 130 RCTs in 34 countries. The interventions tested in these trials varied from the number of visits to the location of care provision, and from the content of care to the professional/lay group providing that care. In most studies neither intervention nor control arm was well described. Our analysis of the identified trials of antenatal care interventions produced the following taxonomy: Universal provision model (for all women irrespective of health state or complications); Restricted 'lower-risk'-based provision model (midwifery-led or reduced/flexible visit approach for healthy women); Augmented provision model (antenatal care as in Universal provision above but augmented by clinical, educational or behavioural intervention); Targeted 'higher-risk'-based provision model (for woman with defined clinical or socio-demographic risk factors). The first category was most commonly tested in low-income countries (i.e. resource-poor settings), particularly in Asia. The other categories were tested around the world. The trials included a range of care providers, including midwives, nurses, doctors, and lay workers. CONCLUSIONS: Interventions can be defined and described in many ways. The intended antenatal care population group proved the simplest and most clinically relevant way of distinguishing trials which might otherwise be categorised together. Since our review excluded non-trial interventions, the taxonomy does not represent antenatal care provision worldwide. It offers a stable and reproducible approach to describing the purpose and content of models of antenatal care which have been tested in a trial. It highlights a lack of reported detail of trial interventions and usual care processes. It provides a baseline for future work to examine and test the salient characteristics of the most effective models, and could also help decision-makers and service planners in planning implementation.

Midwifery-led antenatal care models: mapping a systematic review to an evidence-based quality framework to identify key components and characteristics of care.

BACKGROUND: Implementing effective antenatal care models is a key global policy goal. However, the mechanisms of action of these multi-faceted models that would allow widespread implementation are seldom examined and poorly understood. In existing care model analyses there is little distinction between what is done, how it is done, and who does it. A new evidence-informed quality maternal and newborn care (QMNC) framework identifies key characteristics of quality care. This offers the opportunity to identify systematically the characteristics of care delivery that may be generalizable across contexts, thereby enhancing implementation. Our objective was to map the characteristics of antenatal care models tested in Randomised Controlled Trials (RCTs) to a new evidence-based framework for quality maternal and newborn care; thus facilitating the identification of characteristics of effective care. METHODS: A systematic review of RCTs of midwifery-led antenatal care models. Mapping and evaluation of these models' characteristics to the QMNC framework using data extraction and scoring forms derived from the five framework components. Paired team members independently extracted data and conducted quality assessment using the QMNC framework and standard RCT criteria. RESULTS: From 13,050 citations initially retrieved we identified 17 RCTs of midwifery-led antenatal care models from Australia (7), the UK (4), China (2), and Sweden, Ireland, Mexico and Canada (1 each). QMNC framework scores ranged from 9 to 25 (possible range 0-32), with most models reporting fewer than half the characteristics associated with quality maternity care. Description of care model characteristics was lacking in many studies, but was better reported for the intervention arms. Organisation of care was the best-described component. Underlying values and philosophy of care were poorly reported. CONCLUSIONS: The QMNC framework facilitates assessment of the characteristics of antenatal care models. It is vital to understand all the characteristics of multi-faceted interventions such as care models; not only what is done but why it is done, by whom, and how this differed from the standard care package. By applying the QMNC framework we have established a foundation for future reports of intervention studies so that the characteristics of individual models can be evaluated, and the impact of any differences appraised.

Operationalizing reflexivity to improve the rigor of palliative care research.

Reflective practice involves deliberate consideration of actions, attitudes and behaviors. Reflexivity in research is considered important for ensuring that research is ethically and rigorously conducted. This paper details the challenges of conducting research involving patients with palliative care needs within the acute hospital environment. It discusses the contribution of reflexivity to a pilot study using the Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" as a brief intervention to foster a more person-centered climate. Challenges that emerged are discussed from the perspectives of the researchers, the participants, and the setting; they relate to: timing and recruitment, the nature of palliative care illness, attitudes to research, and the research environment. Awareness of such issues can prompt researchers to devise appropriate strategies and approaches that may inform and assist the rigor and conduct of future research.

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

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

Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review.

BACKGROUND: A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. AIM: To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting. DESIGN: A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers. DATA SOURCES: MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000-1 April 2014. ELIGIBILITY CRITERIA: Adult palliative care, acute care setting, dignity or person-centred care. RESULTS: In all, 33 papers met the inclusion criteria for the review. Papers highlighted the many and varied potential threats to dignity for people with palliative care needs in acute settings, including symptom control and existential distress, approaches and models in care provision and healthcare settings and design. CONCLUSION: Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement.

The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting.

BACKGROUND: Providing person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" was designed from empirical research on patients' perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person. METHODS: This mixed method pilot study was designed to inform a larger multisite study in the future. It tests the hypothesis that the PDQ intervention could be used to enhance a more person-centred climate for people with palliative care needs in the acute hospital setting, and provide evidence regarding its acceptability. Outcome measures pre and post intervention Person-centred Climate Questionnaire--patient version (PCQ-P), and the Consultation and Relational Empathy (CARE) measure; PDQ feedback questionnaires were used for all participants post intervention, in addition to qualitative interviews. RESULTS: 30 patients, 17 HCPs, and 4 family members participated. Results showed a positive correlation between higher PCQ-P scores and higher CARE scores, indicating that the PDQ can make improvements to a person-centred environment and levels of empathy perceived by patients. Individual results from the PCQ-P and the CARE indicated overall improvements in the majority of fields. The PDQ supported disclosure of information previously unknown to HCPs, has implications for improving person-centred care. Positive results from PDQ feedback questionnaires were received from all participants. Qualitative findings indicated patients' appreciation of staff (Attributes and attitudes), that patients wanted staff to have awareness of them (Know me as a person), take the time to talk, and work flexibly, to allow for patient individuality (Time and place). CONCLUSION: The PDQ has potential to improve patients' perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care. Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.

The person behind the patient: a feasibility study using the Patient Dignity Question for patients with palliative care needs in hospital.

OBJECTIVE: The purpose of this study was to assess the feasibility and acceptability of the Patient Dignity Question (PDQ) 'what do I need to know about you as a person to take the best care of you that I can?', as a person-centred intervention for patients with palliative needs in the acute hospital setting in Scotland, UK. METHOD: To test the feasibility of the research design, a purposive sample of nine patients and five health-care professionals (HCPs) were recruited from acute wards in the east of Scotland. Responses to the PDQ were assessed using a PDQ feedback questionnaire to gauge participant reaction to its use. A person-centred climate questionnaire (PCQ-P) was used to assess responses to the environment in relation to the person-centred approach. RESULTS: The results from responses to the PDQ feedback questionnaire indicate that it is feasible to carry out this type of study for people with palliative care needs in the acute care setting, and that participants found the PDQ acceptable. The PCQ-P was effective in determining the person-centred nature of the hospital climate. However, it was not possible to determine if the PDQ had a direct influence on this, without pre- and post-intervention data. CONCLUSIONS: The PDQ was feasible and acceptable for this group of participants as a means by which HCPs may enhance person-centred care for people with palliative needs in an acute hospital. Testing the implementation of the PDQ in a before-and-after study would be beneficial.

Identifying which septic patients have increased mortality risk using severity scores: a cohort study.

BACKGROUND: Early aggressive therapy can reduce the mortality associated with severe sepsis but this relies on prompt recognition, which is hindered by variation among published severity criteria. Our aim was to test the performance of different severity scores in predicting mortality among a cohort of hospital inpatients with sepsis. METHODS: We anonymously linked routine outcome data to a cohort of prospectively identified adult hospital inpatients with sepsis, and used logistic regression to identify associations between mortality and demographic variables, clinical factors including blood culture results, and six sets of severity criteria. We calculated performance characteristics, including area under receiver operating characteristic curves (AUROC), of each set of severity criteria in predicting mortality. RESULTS: Overall mortality was 19.4% (124/640) at 30 days after sepsis onset. In adjusted analysis, older age (odds ratio 5.79 (95% CI 2.87-11.70) for ≥80y versus <60y), having been admitted as an emergency (OR 3.91 (1.31-11.70) versus electively), and longer inpatient stay prior to sepsis onset (OR 2.90 (1.41-5.94) for >21d versus <4d), were associated with increased 30 day mortality. Being in a surgical or orthopaedic, versus medical, ward was associated with lower mortality (OR 0.47 (0.27-0.81) and 0.26 (0.11-0.63), respectively). Blood culture results (positive vs. negative) were not significantly association with mortality. All severity scores predicted mortality but performance varied. The CURB65 community-acquired pneumonia severity score had the best performance characteristics (sensitivity 81%, specificity 52%, positive predictive value 29%, negative predictive value 92%, for 30 day mortality), including having the largest AUROC curve (0.72, 95% CI 0.67-0.77). CONCLUSIONS: The CURB65 pneumonia severity score outperformed five other severity scores in predicting risk of death among a cohort of hospital inpatients with sepsis. The utility of the CURB65 score for risk-stratifying patients with sepsis in clinical practice will depend on replicating these findings in a validation cohort including patients with sepsis on admission to hospital.

Phenomenological approaches: challenges and choices.

Phenomenology is a recognised approach for investigating experiences in health research. Difficulties regarding the approach, however, have been documented with even the definitions and terminology sometimes being unclear. In addition to this, there have been claims that many nurse researchers have failed to report how the gap between philosophically related theory and research practice is managed. While legitimacy can be increased by claims regarding theoretical location, there have also been suggestions that engaging too intensely in methodological awareness can hinder the practice and progress of a research project. A balance is therefore required. This article concentrates on the dilemmas and challenges facing a researcher looking for an appropriate method and approach for a study investigating the experiences of stroke survivors. The challenges of using phenomenology as a research method and the approach of interpretative phenomenological analysis are further considered.

Interpretative phenomenological analysis: a discussion and critique.

AIM: The aim of this article is to examine the approach of interpretative phenomenological analysis (IPA) and to add to discussions regarding the contribution that the approach can make to healthcare research. BACKGROUND: Interpretative phenomenological analysis is an approach to qualitative, experiential research that has been gaining in momentum and popularity over the past 10-15 years. The approach has its roots in psychology and recognises the central role of the analyst in understanding the experiences of participants. IPA involves a two-stage interpretation process whereby the researcher attempts to interpret how the participants make sense of their experience. DATA SOURCES: Interpretative phenomenological analysis is discussed and critiqued in relation to other phenomenological approaches; benefits, potential limitations and rigour of studies using the method are explored. REVIEW METHODS: This is a methodology discussion that compares and contrasts IPA with other phenomenological approaches. CONCLUSION: Interpretative phenomenological analysis offers an adaptable and accessible approach to phenomenological research intended to give a complete and in-depth account that privileges the individual. It enables nurses to reach, hear and understand the experiences of participants. Findings from IPA studies can influence and contribute to theory. IMPLICATIONS FOR RESEARCH AND PRACTICE: Achieving a greater understanding of experiences in health care and illness can improve service provision. It is only by understanding meanings that nurses can influence health behaviour and lifestyles.

Mind mapping in qualitative research.

BACKGROUND: We tested a theory that mind mapping could be used as a tool in qualitative research to transcribe and analyse an interview. METHOD: We compared results derived from mind mapping with those from interpretive phenomenological analysis by examining patients' and carers' perceptions of a new nurse-led service. RESULTS: Mind mapping could be used to rapidly analyse simple qualitative audio-recorded interviews. CONCLUSION: More research is needed to establish the extent to which mind mapping can assist qualitative researchers.

Stroke survivors with aphasia: personal experiences of coming home.

Although communication difficulties affect a significant number of stroke survivors, specialist stroke follow-up in the community may not always be available. It is therefore vital that community nurses have the skills and confidence not only to engage well with stroke patients with communication difficulties in their daily work, but also to encourage their inclusion in research and other projects. This article reports on the experiences of a small sample of stroke survivors and their carers during the first month at home following discharge from hospital. Their journey involved discovering and adapting to new situations and abilities. The article also details how participants with virtually no speech can be included in research studies.

Rural access to MAT in Pennsylvania (RAMP): a hybrid implementation study protocol for medication assisted treatment adoption among rural primary care providers.

BACKGROUND: The continued escalation of opioid use disorder (OUD) calls for heightened vigilance to implement evidence-based care across the US. Rural care providers and patients have limited resources, and a number of barriers exist that can impede necessary OUD treatment services. This paper reports the design and protocol of an implementation study seeking to advance availability of medication assisted treatment (MAT) for OUD in rural Pennsylvania counties for patients insured by Medicaid in primary care settings. METHODS: This project was a hybrid implementation study. Within a chronic care model paradigm, we employed the Framework for Systems Transformation to implement the American Society for Addiction Medicine care model for the use of medications in the treatment of OUD. In partnership with state leadership, Medicaid managed care organizations, local care management professionals, the Universities of Pittsburgh and Utah, primary care providers (PCP), and patients; the project team worked within 23 rural Pennsylvania counties to engage, recruit, train, and collaborate to implement the OUD service model in PCP practices from 2016 to 2019. Formative measures included practice-level metrics to monitor project implementation, and outcome measures involved employing Medicaid claims and encounter data to assess changes in provider/patient-level OUD-related metrics, such as MAT provider supply, prevalence of OUD, and MAT utilization. Descriptive statistics and repeated measures regression analyses were used to assess changes across the study period. DISCUSSION: There is an urgent need in the US to expand access to high quality, evidence-based OUD treatment-particularly in rural areas where capacity is limited for service delivery in order to improve patient health and protect lives. Importantly, this project leverages multiple partners to implement a theory- and practice-driven model of care for OUD. Results of this study will provide needed evidence in the field for appropriate methods for implementing MAT among a large number of rural primary care providers.

A review of the early discharge experiences of stroke survivors and their carers.

AIMS AND OBJECTIVES: Understanding the experiences of stroke patients and their carers during the early days following discharge from hospital is an important aspect of providing appropriate care during this crucial time. BACKGROUND: Due to the diverse changes that can result from a stroke, adjustment to returning home may raise many issues for those involved. A review of research was undertaken with the aim of identifying what is already known about experiences at this time. DESIGN: Systematic review. METHOD: Search of electronic databases. RESULTS: The review revealed that recognition of the impact of stroke on patients and carers is improving, with many studies focussing on the longer-term aspects of stroke recovery. Research into the early discharge experiences of stroke patients and/or their carers is often limited to retrospective, longitudinal studies. With the continuing shift towards care in the community, patients and carers can increasingly expect more recovery to be taking place at home at an even earlier stage. Earlier discharge may have important implications for those involved. The review also highlighted that patients with aphasia have frequently been excluded from stroke research and that social roles are important aspects in stroke recovery. CONCLUSIONS: To prepare patients and carers better for the impact of returning home, further research is needed into their experiences at this significant time, particularly in the UK. There is also a need to facilitate the inclusion of those with aphasia in stroke research. RELEVANCE TO CLINICAL PRACTICE: An improved understanding of the issues facing stroke patients and carers during their early days at home should facilitate the preparation for discharge in the hospital setting and allow more focussed follow-up services in the community.

Adolescents and health-related behaviour: using a framework to develop interventions to support positive behaviours.

BACKGROUND: Experimentation is a natural part of adolescent maturation. In conjunction with increased exposure to behaviours such as alcohol or substance use, and the potentially intensified influence of peer groups, unhealthy behaviour patterns may develop as part of this experimentation. However, the adolescent years also provide considerable opportunity for behaviour to be shaped in positive ways that may improve immediate and longer term health outcomes. A systematic review carried out by the authors concluded that physiological changes during adolescence need to be considered when designing or implementing interventions, due to their influence on health behaviours. The aim of the study is to demonstrate how the six steps in quality intervention development (6SQuID) framework can be used, in conjunction with research or review findings, to inform the development of pilot or feasibility studies. Using the synthesised findings from our adolescent systematic review, we sought to illustrate how adolescent interventions might be designed to target specific health behaviours and augment positive adolescent health outcomes. METHODS: We applied the 6SQuID framework to the findings from a review of adolescent physiological influences on health behaviour. This involved following the process defined within 6SQuID and applying the sequential steps to build a proposed pilot study, based on the pre-defined findings of our systematic review. We used the Social Learning Theory to assist in identifying how and why change can be influenced, with and for adolescents. RESULTS: We devised a pilot study example, targeting teaching assistants, to illustrate how the detailed steps within the 6SQuID framework can assist the development and subsequent implementation of adolescent interventions that are likely to be effective. CONCLUSIONS: This paper gives details of how the 6SQuID framework can be used for intervention development, using specific research findings, across a variety of adolescent health behaviours. This example provides details of how to operationalise 6SQuID in practical terms that are transferrable to other populations and situations. In this respect, we anticipate that this illustrative case may be of use in the design, development, and implementation of a wide variety of interventions.