Exploring Whether and How People Experiencing High Deprivation Access Diagnostic Services: A Qualitative Systematic Review.

INTRODUCTION: To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. METHODS: A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. RESULTS: Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub-themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. CONCLUSION: Decision-making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. PATIENT OR PUBLIC CONTRIBUTION: Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review.

The Delphi of ORACLE: An Expert Consensus Survey for the Development of the Observational Risk Assessment of Contractures (Longitudinal Evaluation).

OBJECTIVE: Despite rising prevalence rates, no standard tool is available to identify individuals at risk of developing contractures. This study aimed to gain expert consensus on items for the development of the Observational Risk Assessment Tool for Contractures: Longitudinal Evaluation (ORACLE) for care home residents. DESIGN: A two-round, online modified Delphi study. PARTICIPANTS: Panellists were qualified healthcare professionals with a background in physiotherapy, occupational therapy, nursing, and rehabilitation medicine. MAIN OUTCOME MEASURES: In the first round, the experts were asked to rate the predesigned list of items on a Likert scale while in the second round, consensus was sought in the areas of disagreement identified in the previous round. RESULTS: The two rounds of the Delphi survey included 30 and 25 panellists, respectively. The average clinical and academic experience of the panellists was 22.2 years and 10.5 years, respectively. The panel demonstrated a high level of consensus regarding the clinical factors (10 out of 15 items); preventive care approaches (9 out of 10 items), and contextual factors (12 out of 13 items) ranging from 70% to 100%. CONCLUSION: This Delphi study determined expert consensus on items to be included in a contracture risk assessment tool (ORACLE). The items were related to factors associated with joint contractures, appropriate preventive care interventions, and potentially relevant contextual factors associated with care home settings. The promise of a risk assessment tool that includes these items has the capacity to reduce the risk of contracture development or progression and to trigger timely and appropriate referrals to help prevent further loss of function and independence.

Understanding advance care planning in care homes throughout the COVID-19 pandemic: A critical realist review and synthesis.

BACKGROUND: The COVID-19 pandemic has disrupted advance care planning discussions in care homes, particularly discussions involving relatives and surrogate decision makers. There is a need to collate and examine current evidence to assess the extent of the problem. AIM: To examine the processes and experiences involved in advance care planning in care homes throughout the COVID-19 pandemic. DESIGN: A critical realist review and synthesis. DATA SOURCES: MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and May 2022. RESULTS: Eleven studies were included. Communication difficulties associated with remote technologies meant that care home staff's concerns about engaging effectively with relatives further exacerbated the emotional toll of dealing with high death rates in circumstances where staff shortages stretched the capacity of those remaining to provide timely advance care planning discussions. The threat of the pandemic tended to encourage earlier and more frequent advance care planning discussions, though this tendency was partially countervailed by the difficulties that some residents and relatives had in engaging with remote communication modes. There was evidence that education and training in advance care planning increased staff's confidence and readiness to engage in care planning during pandemic conditions. CONCLUSION: Results highlight part of the new context facing staff, relatives and residents in care homes, thus providing valuable insight for future intervention development required to maintain and improve the effectiveness of advance care planning in care homes during and beyond the pandemic.

Using a generic definition of cachexia in patients with kidney disease receiving haemodialysis: a longitudinal (pilot) study.

BACKGROUND: Research indicates that cachexia is common among persons with chronic illnesses and is associated with increased morbidity and mortality. However, there continues to be an absence of a uniformed disease-specific definition for cachexia in chronic kidney disease (CKD) patient populations. OBJECTIVE: The primary objective was to identify cachexia in patients receiving haemodialysis (HD) using a generic definition and then follow up on these patients for 12 months. METHOD: This was a longitudinal study of adult chronic HD patients attending two hospital HD units in the UK. Multiple measures relevant to cachexia, including body mass index (BMI), muscle mass [mid-upper arm muscle circumference (MUAMC)], handgrip strength (HGS), fatigue [Functional Assessment of Chronic Illness Therapy (FACIT)], appetite [Functional Assessment of Anorexia/Cachexia Therapy (FAACT)] and biomarkers [C-reactive protein (CRP), serum albumin, haemoglobin and erythropoietin resistance index (ERI)] were recorded. Baseline analysis included group differences analysed using an independent t-test, dichotomized values using the χ2 test and prevalence were reported using the Statistical Package for the Social Sciences 24 (IBM, Armonk, NY, USA). Longitudinal analysis was conducted using repeated measures analysis. RESULTS: A total of 106 patients (30 females and 76 males) were recruited with a mean age of 67.6 years [standard deviation (SD) 13.18] and dialysis vintage of 4.92 years (SD 6.12). At baseline, 17 patients were identified as cachectic, having had reported weight loss (e.g. >5% for >6 months) or BMI <20 kg/m2 and three or more clinical characteristics of cachexia. Seventy patients were available for analysis at 12 months (11 cachectic versus 59 not cachectic). FAACT and urea reduction ratio statistically distinguished cachectic patients (P = 0.001). However, measures of weight, BMI, MUAMC, HGS, CRP, ERI and FACIT tended to worsen in cachectic patients. CONCLUSION: Globally, cachexia is a severe but frequently underrecognized problem. This is the first study to apply the defined characteristics of cachexia to a representative sample of patients receiving HD. Further, more extensive studies are required to establish a phenotype of cachexia in advanced CKD.

Impact of the COVID-19 pandemic on end of life care delivery in care homes: A mixed method systematic review.

BACKGROUND: Current evidence suggests that COVID-19 is having a negative impact on the delivery of end of life care in care homes around the world. There is a need to collate current evidence to provide a comprehensive overview to assess extent of the problem. AIM: To describe and evaluate the impact of the COVID-19 pandemic on end of life care delivery in care homes. DESIGN: Systematic review and narrative synthesis of studies reporting qualitative and quantitative data. DATA SOURCES: The databases MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and March 2021. RESULTS: Nine studies were included. For care home staff, challenges included significant increases in responsibility and exposure to death, both of which have taken an emotional toll. Results indicate that staff tended not to be offered adequate emotional support or afforded the time to grieve. For those receiving end of life care, results indicate that the end of life care that they tended to receive, especially in the form of advance planning, was disrupted by the pandemic. CONCLUSION: The effect of the pandemic has been to exacerbate existing problems in the provision of end of life care in care homes for both service providers and users, making that which was previously opaque starkly visible. Future research is needed to explore the effects of the pandemic and its management on those receiving end of life care in care homes and their significant others.

A critical realist evaluation of advance care planning in care homes.

AIMS: To evaluate care planning in advance of end-of-life care in care homes. DESIGN: A qualitative study. METHODS: Qualitative data were collected from January 2018-July 2019 (using focus groups and semi-structured interviews) from three care homes in the South West of England. The data were analysed using thematic analysis followed by Critical Realist Evaluation. RESULTS: Participants comprised of registered nurses (N = 4), care assistants (N = 8), bereaved relatives (N = 7), and domiciliary staff (N = 3). Although the importance of advance care planning was well recognized, the emotional labour of frequently engaging in discussions about death and dying was highlighted as a problem by some care home staff. It was evident that in some cases care home staff's unmet emotional needs led them to rushing and avoiding discussions about death and dying with residents and relatives. A sparsity of mechanisms to support care home staff's emotional needs was noted across all three care homes. Furthermore, a lack of training and knowledge appeared to inhibit care home staff's ability to engage in meaningful care planning conversations with specific groups of residents such as those living with dementia. The lack of training was principally evident amongst non-registered care home staff and those with non-formal caring roles such as housekeeping. CONCLUSION: There is a need for more focused education to support registered and non-registered care home staff to effectively engage in sensitive discussions about death and dying with residents. Furthermore, greater emotional support is necessary to help build workforce resilience and sustain change. IMPACT: Knowledge generated from this study can be used to inform the design and development of future advance care planning interventions capable of supporting the delivery of high-quality end-of-life care in care homes.

Enabling sustained communication with patients for safe and effective management of oral chemotherapy: A longitudinal ethnography.

AIMS: To examine how patients received, understood, and acted on healthcare professional communication about their oral chemotherapeutic regimen throughout their treatment. DESIGN: A longitudinal ethnographic study. METHODS: Over 60 hr of observational data were recorded, in the form of field notes and audio-recordings from interactions among nine oncology doctors, six oncology nurses, eight patients, and 11 family members over a period of 6 months in outpatient departments in one hospital in Northern Ireland. Sixteen semi-structured interviews with patients and three focus groups with healthcare professionals were also carried out. This study took place from October 2013-June 2016. Data were thematically analysed. RESULTS: Three themes where identified from the data. These were initiating concordance through first communication about oral chemotherapy; which focused on initial communication during oncology consultations about oral chemotherapy, sustained communication of managing chemotherapy side effects; which was about how communication processes supported timely and effective side effect management and un-sustained communication of oral chemotherapy medication-taking practice; when patients and healthcare professionals failed to communicate effectively about chemotherapy medication-taking. CONCLUSION: The two most important factors in ensuring the optimal management of oral chemotherapeutic medicines are early recognition and appropriate response to side effects and the maintenance of safe and effective medication administration. This study found that oncology doctors and nurses engaged in sustained communication about the side effects of chemotherapy but did not focus their communication on safe administration after the first consultation. IMPACT: Based on this evidence, we recommend that healthcare professionals who provide oral chemotherapy for home administration should review their processes and procedures. Healthcare professionals need to ensure that they embed frequent communication for the duration of treatment between themselves and patients, including open discussion and advice, about side effects and medication administration.

Estimating the Prevalence of Muscle Wasting, Weakness, and Sarcopenia in Hemodialysis Patients.

OBJECTIVES: Haemodialysis (HD) patients suffer from nutritional problems, which include muscle wasting, weakness, and cachexia, and are associated with poor clinical outcomes. The European Working Group for Sarcopenia in Older People (EWGSOP) and Foundations for the National Institute of Health (FNIH) have developed criteria for the assessment of sarcopenia, including the use of non-invasive techniques such as bioelectrical impedance assessment (BIA), anthropometry, and hand grip strength (HGS) dynamometry. This study investigated the prevalence of muscle wasting, weakness, and sarcopenia using the EWGSOP and FNIH criteria. METHODS: BIA was performed in 24 females (f) and 63 males (m) in the post-dialysis period. Total skeletal muscle mass and appendicular skeletal muscle mass were estimated and index values (i.e., muscle mass divided by height2 [kg/m2]) were calculated (Total Skeletal Muscle Index (TSMI) and Appendicular Skeletal Muscle Index (ASMI)). Mid-arm circumference and triceps skin-fold thickness were measured and mid-upper arm muscle circumference (MUAMC) calculated. HGS was measured using a standard protocol and Jamar dynamometer. Suggested cut-points for low muscle mass and grip strength were utilized using the EWGSOP and FNIH criteria with prevalence estimated, including sarcopenia. RESULTS: The prevalence varied depending on methodology: low TSMI (moderate and severe sarcopenia combined) was 55% for whole group: 21% (f) and 68% (m). Low ASMI was 32% for whole group: 25% (f) and 35% (m). Low MUAMC was 25% for whole group: 0% (f) and 30% (m). ASMI highly correlated with Body Mass Index (r = 0.78, P < .001) and MUAMC (r = 0.68, P < .001). Muscle weakness was high regardless of cut-points used (50-71% (f); 60-79% (m)). CONCLUSIONS: Internationally, this is the first study comparing measures of muscle mass (TSMM and ASMM by BIA and MUAMC) and muscle strength (HGS) using this specific methodology in a hemodialysis population. Future work is required to confirm findings.

Systematic critical realist review of interventions designed to improve end-of-life care in care homes.

The demand for high-quality end-of-life care is rising. Frequently evidenced concerns about the provision of end-of-life in care homes relate to inter-disciplinary communication and engagement in advance care planning. A number of interventions employing different mechanisms have been designed to address these issues. Therefore, the aim of this systematic critical realist review was to describe and explain the effectiveness of interventions designed to improve end-of-life care in care homes. Electronic searches were conducted in ScienceDirect, MEDLINE, PubMed, PsychINFO, and CINAHL from January 2000 to August 2018. Forty one studies were included in the review. While most of the evidence identified in this review was not strong, there was evidence to suggest that education and inter-professional collaboration can be effective intervention mechanisms for improving end-of-life care in care homes. High staff turnover was a significant contextual mechanism impacting on the sustainability of interventions. In terms of human agency, it is important to note a consistent finding related to the dedication and enthusiasm of care home staff who deliver end-of-life care.

From telling to sharing to silence: A longitudinal ethnography of professional-patient communication about oral chemotherapy for colorectal cancer.

BACKGROUND: Healthcare professionals are encouraged to promote concordance, a shared agreement about prescription and administration of medications, in their communication with patients. However, there is a paucity of research regarding the impact of communication about self-administered oral chemotherapy. The aim of this study was to examine the changing dynamics of communication through the patient journey from diagnosis of colorectal cancer to posttreatment of chemotherapy. METHODS: Over 60 hours of observational data were digitally recorded from interactions between 15 healthcare professionals, eight patients with colorectal cancer prescribed capecitabine, and 11 family members over a 6-month period in outpatient departments within one hospital in the United Kingdom. Sixteen semi-structured interviews were conducted with patients during and after their treatment. Three focus groups were carried out with healthcare professionals. These data were analysed using thematic analysis. RESULTS: The patient journey followed a path of four distinct phases: autocracy, physiological concordance, holistic concordance, and silence. Initially, communication was medicalised with patients occupying a passive role. As patients continued their journey, they took a more active role in their treatment discussion by leading consultations and sharing their priorities of care. At the end of treatment, patients felt isolated and unsupported when they were discharged from their oncology team. CONCLUSIONS: Communication about oral chemotherapy is not a static process; it evolves to take account of changing clinical requirements and growing patient confidence in dealing with their cancer. Different stages in the treatment journey indicate the need for different approaches to communication.

Investigating the psychological impact of active surveillance or active treatment in newly diagnosed favorable-risk prostate cancer patients: A 9-month longitudinal study.

OBJECTIVE: This study aimed to explore the psychological impact of favorable-risk prostate cancer (PCa) and associated treatment (active surveillance [AS] or active treatment [AT]), comparing prevalence and temporal variability of generalized anxiety, PCa-specific anxiety, and depression symptoms. METHODS: PCa patients were recruited at diagnosis prior to treatment decision-making and completed questionnaires assessing anxiety (State-Trait Anxiety Inventory short form [STAI-6] and Memorial Anxiety Scale for Prostate Cancer [MAX-PC]) and depression symptoms (Centre for Epidemiologic Studies Depression Scale [CES-D]) at four timepoints for 9 months. Non-cancer controls were recruited via university staff lists and community groups. Results were analyzed using analysis of variance. RESULTS: Fifty-four PCa (AS n = 11, AT n = 43) and 53 non-cancer participants were recruited. The main effect of time or treatment group were not statistically significant for CES-D scores (P > .05). The main effect of treatment on STAI-6 scores was significant (F2,73 = 4.678, .012) with AS patients reporting highest STAI-6 scores (T1 M = 36.56; T2 M = 36.89, T3 M = 38.46; T4 M = 38.89). There was a significant main effect for time since diagnosis on MAX-PC (F3,123 = 3.68, .01); AS patient scored higher than AT at all timepoints (T1 M = 10.33 vs 10.78; T2 M = 11.11 vs 11.30; T3 M = 13.44 vs 10.55; T4 M = 11.33 vs 8.88); however, both groups declined overall with time. CONCLUSIONS: Men undergoing AS had significantly higher anxiety symptoms than AT and non-cancer participants, contradicting previous literature. This may be due to perceived inactivity of AS relative to traditional narratives of cancer treatment. Participant experiences appear to be less favorable relative to other international centers. Recommendations for future research and clinical practice include the need to improve diagnosis and treatment information provision particularly for lower risk patients.

Why nurses should be Marxists.

The argument that nurses should be Marxists is made by looking at the primary areas of nursing activity in turn, giving an example of how capitalist economic relations negatively impact upon that activity, and providing a Marxist explanation of the reasons why it has that impact. In relation to the nursing activity of health promotion, it is argued that capitalism's generation of social inequality undermines the health of the population. In relation to curative activities, the focus is on how capitalism's reckless pursuit of profit has subverted the sustainability of bactericidal interventions. The argument in relation to comforting and assistive care is that the ownership and control of health services by capitalist corporations undermines therapeutic relationships. Finally, in relation to supportive care, it is contended that capitalism's requirement for a disciplined workforce can compromise healthcare professionals' support of employees. It is concluded that if nurses aspire to have some control over their activities, then it is a good idea for them to avail of Marxism's capacity to identify the socio-economic mechanisms by which capitalism affects nursing care.

The redundancy of positivism as a paradigm for nursing research.

New nursing researchers are faced with a smorgasbord of competing methodologies. Sometimes, they are encouraged to adopt the research paradigms beloved of their senior colleagues. This is a problem if those paradigms are no longer of contemporary methodological relevance. The aim of this paper was to provide clarity about current research paradigms. It seeks to interrogate the continuing viability of positivism as a guiding paradigm for nursing research. It does this by critically analysing the methodological literature. Five major paradigms are addressed: the positivist; the interpretivist/constructivist; the transformative; the realist; and the postpositivist. Acceptance of interpretivist, transformative or realist approaches necessarily entails wholesale rejection of positivism, while acceptance of postpositivism involves its partial rejection. Postpositivism has superseded positivism as the guiding paradigm of the scientific method. The incorporation in randomized controlled trials of postpositivist assumptions indicates that even on the methodological territory that it once claimed as its own, positivism has been rendered redundant as an appropriate paradigm for contemporary nursing research.

A randomised controlled pilot and feasibility study of music therapy for improving the quality of life of hospice inpatients.

BACKGROUND: Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. METHODS: This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only. RESULTS: Fifty one participants were recruited over 12 months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants. CONCLUSIONS: A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02791048 . Registered 6 June 2016.

Gender and Publishing in Nursing: a secondary analysis of h-index ranking tables.

AIMS: To analyse published ranking tables on academics' h-index scores to establish whether male nursing academics are disproportionately represented in these tables compared with their representation across the whole profession. BACKGROUND: Previous studies have identified a disproportionate representation of UK male nursing academics in publishing in comparison to their US counterparts. DESIGN: Secondary statistical analysis, which involved comparative correlation of proportions. METHODS: Four papers from the UK, Canada and Australia containing h-index ranking tables and published between 2010-2017, were re-analysed in June 2017 to identify authors' sex. Pearson's chi-squared test was applied to ascertain whether the number of men included in the tables was statistically proportionate to the number of men on the pertinent national professional register. FINDINGS: There was a disproportionate number of men with high h-index scores in the UK and Canadian data sets, compared with the proportion of men on the pertinent national registers. The number of men in the Australian data set was proportionate with the number of men on the nursing register. There was a disproportionate number of male professors in UK universities. CONCLUSION: The influence of men over nursing publishing in the UK and Canada outweighs their representation across the whole profession. Similarly, in the UK, men's representation in the professoriate is disproportionately great. However, the Australian results suggest that gender inequality is not inevitable and that it is possible to create more egalitarian nursing cultures. This article is protected by copyright. All rights reserved.

The experience of palliative care service provision for people with non-malignant respiratory disease and their family carers: An all-Ireland qualitative study.

AIM: To explore specialist and generalist palliative care provision for people with non-malignant respiratory disease, in rural and urban areas in the North and Republic of Ireland. BACKGROUND: Globally, palliative care is recommended as an appropriate healthcare option for people with advanced non-malignant lung disease. Yet, there is limited evidence regarding the integration of palliative care for this client group. DESIGN: Qualitative study. METHODS: Convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from two rural and two urban sites on the Island of Ireland. Data were collected throughout 2012 and 2013 through semi-structured interviews with carers of patients with Chronic Obstructive Pulmonary Disease (N = 12), interstitial lung disease (N = 4) or bronchiectasis (N = 1) who had died 3-18 months previously; and four focus groups with healthcare professionals. Data were analysed using a thematic analysis framework. RESULTS: Carers' interviews yielded three overarching themes: (1) lack of preparedness for death, due to ambiguity regarding disease trajectory; (2) lack of consistency in palliative care delivery, in relation with the receipt of generalist and specialist palliative care; and (3) role ambiguity, related to their caregiving role. Focus groups identified two overarching themes: (1) barriers to appropriate palliative care; and (2) the future direction of palliative care for patient with non-malignant respiratory disease. CONCLUSION: The uncertain disease trajectory was not only experienced by carers but also healthcare professionals. Although referral to specialist palliative care services was perceived as increasing, the availability and coordination of generalist and specialist palliative care services were fragmented and varied dependent on geographical location.

Music therapy for children and adolescents with behavioural and emotional problems: a randomised controlled trial.

BACKGROUND: Although music therapy (MT) is considered an effective intervention for young people with mental health needs, its efficacy in clinical settings is unclear. We therefore examined the efficacy of MT in clinical practice. METHODS: Two hundred and fifty-one child (8-16 years, with social, emotional, behavioural and developmental difficulties) and parent dyads from six Child and Adolescent Mental Health Service community care facilities in Northern Ireland were randomised to 12 weekly sessions of MT plus usual care [n = 123; 76 in final analyses] or usual care alone [n = 128; 105 in final analyses]. Follow-up occurred at 13 weeks and 26 weeks postrandomisation. Primary outcome was improvement in communication (Social Skills Improvement System Rating Scales) (SSIS) at 13 weeks. Secondary outcomes included social functioning, self-esteem, depression and family functioning. RESULTS: There was no significant difference for the child SSIS at week 13 (adjusted difference in mean 2.4; 95% CI -1.2 to 6.1; p = .19) or for the guardian SSIS (0.5; 95% CI -2.9 to 3.8; p = .78). However, for participants aged 13 and over in the intervention group, the child SSIS communication was significantly improved (6.1, 95% CI 1.6 to 10.5; p = .007) but not the guardian SSIS (1.1; 95% CI -2.9 to 5.2; p = .59). Overall, self-esteem was significantly improved and depression scores were significantly lower at week 13. There was no significant difference in family or social functioning at week 13. CONCLUSIONS: While the findings provide some evidence for the integration of music therapy into clinical practice, differences relating to subgroups and secondary outcomes indicate the need for further study. ISRCTN Register; ISRCTN96352204.

Active surveillance for favorable-risk prostate cancer: Is there a greater psychological impact than previously thought? A systematic, mixed studies literature review.

OBJECTIVE: Active surveillance (AS) allows men with favorable-risk prostate cancer to avoid or postpone active treatment and hence spares potential adverse effects for a significant proportion of these patients. Active surveillance may create an additional emotional burden for these patients. The aim of the review was to determine the psychological impact of AS to inform future study in this area and to provide recommendations for clinical practice. METHODS: Studies were identified through database searching from inception to September 2015. Quantitative or qualitative noninterventional studies published in English that assessed the psychological impact of AS were included. The Mixed Methods Appraisal Tool was used to assess methodological quality. RESULTS: Twenty-three papers were included (20 quantitative and 3 qualitative). Quantitatively, the majority of patients do not report psychological difficulties; however, when appropriateness of study design is considered, the conclusion that AS has minimal impact on well-being may not be accurate. This is due to small sample sizes, inappropriately timed baseline, and inappropriate/lack of comparison groups. In addition, a mismatch in outcome was noted between the outcome of quantitative and qualitative studies in uncertainty, with qualitative studies indicating a greater psychological impact. CONCLUSIONS: Because of methodological concerns, many quantitative studies may not provide a true account of the burden of AS. Further mixed-methods studies are necessary to address the limitations highlighted and to provide clarity on the impact of AS. Practitioners should be aware that despite findings of previous reviews, patients may require additional emotional support.

The experience of providing end of life care at a children's hospice: a qualitative study.

BACKGROUND: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children's hospice. METHODS: Qualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children's hospice offering palliative and specialist care to life-limited children and young people. RESULTS: The hospice setting provides a model of excellence in supporting staff and mitigating challenging aspects of their role, which includes peer/organisational support, and regular ongoing training in key aspects of children's palliative care. Key recommendations for improving their experience included advanced communication training and knowledge sharing with other children's palliative care specialists within the acute setting. CONCLUSIONS: Service and policy initiatives should encourage open, informal peer/organisational support among the wider children's palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children's hospices and hospital settings.

The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study.

BACKGROUND: Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. METHODS: Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. RESULTS: Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. CONCLUSION: This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.