The Faculty of Health and Social Care has a long history at University of Chester, being established in the early 1990s as the School of Nursing and Midwifery. A wide variety of programmes are delivered by the Faculty including foundation degrees, undergraduate degrees and postgraduate degrees. All branches (adult, mental health, learning disability and child) of pre-registration nursing can be undertaken, as well as pre-qualification courses in Midwifery and Social Work. Social Work programmes are available at both undergraduate and masters levels. The Faculty also offers a wide ranging and exciting portfolio of post-qualifying programmes with an inter-professional focus. Within the Faculty, research is viewed as integral to the working life of staff, in partnership with local and regional providers of care. The Faculty has a research office which coordinates the activity of the Faculty. The strategic focus is on further development in community/primary care, users and carers support and inter-professional learning. There are opportunities to register for a PhD, with supervision from recognised experts in their field. Individual Professors, Readers and Teaching Fellows lead their own research developments in subjects closely related to practice-based care. These include clinical interventions in eating disorders, supporting individuals with learning disabilities in the penal system, interventions in forensic mental health, supporting carers and users of services, safety factors for single practitioners in the community and pedagogical research.

Recent Submissions

  • Doctors and their families

    Benbow, Susan M. (SAGE Publications, 2023-01-18)
    Objective This article reflects on the relationship between doctors and their families and how it influences a doctor’s health, well-being and practice and the health and well-being of other family members. It uses an established model for conceptualising this recursive relationship, drawing on systemic and communications theory, coordinated management of meaning. The article invites doctors to reflect on relational influences between them and their families across the course of their career and following retirement. Conclusion Families are important to, and influence, the well-being of their doctor-members. Likewise, doctors are important to, and influence, the health and well-being of their families.
  • Collaborative Autoethnography and Social Work

    Gant, Valerie; University of Chester (Whiting and Birch, 2022-12-07)
    Like autoethnography, (AE), collaborative autoethnography (CAE) results in highly personalised narrative accounts of the researcher’s engagement with specific sociocultural contexts. CAE adds a collective interpretation to that engagement. While CAE has thus far been little used in social work practice and education, it is an emerging methodological approach that offers new and different insights and opportunities. This paper discusses CAE and its relationship with social work practice and education, in it I discuss how CAE allows for a collective exploration of an individual experience and how these explorations, and the process of obtaining them, have many benefits for social work practitioners and social work students alike. The similarities between CAE and social work are highlighted, by focussing on some of the very core skills and values that lie at the heart of social work, such as listening, collaborating and showing empathy CAE would seem a natural progression for inquiry within social work. This contribution to the special issue has implications for both social work practice and social work education.
  • Crisis Resolution Home Treatment Team Clinicians’ perceptions of using a Recovery Approach with people with a diagnosis of Borderline Personality Disorder

    Taylor, Tracy; Stockton, Stephanie; Bowen, Matt; University of Chester (Wiley, 2022-12-29)
    Introduction: People with a diagnosis of borderline personality disorder (BPD) are often in contact with mental health services at a point of crisis and in the UK this includes Crisis Resolution Home Treatment teams (CRHTT). There is a drive for services to be recovery orientated, however, there is little evidence about the degree to which community services achieve this for people with a diagnosis of BPD when in crisis. Research aim: To understand the perceptions held by CRHTT clinicians about their provision of recovery-orientated acute care, for people with a diagnosis of BPD. Method: From a purposive sample of a single CRHTT, seven registered mental health nurses were interviewed and Braun and Clarke’s thematic analysis framework was used to interpret the data. Results: Five themes emerged: person-centred care; the timing is wrong; inconsistent staffing; the risks are too great; and BPD as a label. Discussion: The results demonstrate tensions between a drive to deliver person-centred care and a range of challenges that inhibit this, with the possibility of re-framing a recovery approach as ‘recovery-ready’. Implications for practice: A whole-systems approach is required to enable a consistent recovery-oriented approach, but research is also needed for brief interventions specific to this context.
  • Humanistic burden of problem joints for children and adults with haemophilia

    Burke, Tom; Rodriguez‐Santana, Idaira; Chowdary, Pratima; Curtis, Randall; Khair, Kate; Laffan, Michael; McLaughlin, Paul; Noone, Declan; O'Mahony, Brian; Pasi, John; et al. (2022-12-27)
    Introduction: The “problem joint” (PJ) concept was developed to address patient‐centric needs for a more holistic assessment of joint morbidity for people with haemophilia (PwH). Aim: To quantify the humanistic burden of PJs in PwH to further support validation of the PJ outcome measure. Methods: Multivariable regression models evaluated the relationship between PJs and health‐related quality of life (HRQoL, EQ‐5D‐5L) and overall work productivity loss (WPL) using data from the ‘Cost of HaEmophilia: a Socioeconomic Survey’ population studies (adults: CHESS II, CHESS US+; children/adolescents: CHESS‐Paeds). Covariates included were haemophilia severity, age, comorbidities and education. Results: The CHESS II sample included 292 and 134 PwH for HRQoL and WPL analyses, mean age 38.6 years (39% ≥1 PJ, 61% none). CHESS US+ included 345 and 239 PwH for HRQoL and WPL, mean age 35 years (43% ≥1 PJ, 57% none). CHESS‐Paeds included 198 PwH aged 4–17 (HRQoL only), mean age 11.5 years (19% ≥1 PJ, 81% none). In CHESS II and CHESS US+, presence of PJs was associated with worse HRQoL (Both p < .001). Few CHESS‐Paeds participants had PJs, with no significant correlation with HRQoL. In CHESS II, upper body PJs were significantly correlated to WPL (p < .05). In CHESS US+, having ≥1 PJ or upper and lower body PJs were significantly correlated to WPL (vs. none; both p < .05). Conclusion: This study has shown a meaningful burden of PJs on PwH, which should be considered in clinical and health policy assessments of joint health.
  • Too many calories, Refined carbohydrates, and saturated fat Consumption endow to Nonalcoholic Fatty Liver Disease in Pakistani Adults

    Afnan, Badder H.; Shaikh, Sabhita S.; Rahim, Anila; Ahmed, Waqas; Soomro, Sahar; Khan, Areesha; Majeed, Ammara A.; Ellahi, Basma; Dow University Hospital; Dow University of Health Sciences; Dow University OJHA Campus; University of Chester
    Nonalcoholic Fatty Liver Disease (NAFLD) is one of the leading causes of liver disease worldwide. A healthy diet plays a significant role in the prevention of NAFLD. Few studies have been done in Pakistan to evaluate the dietary intake of patients suffering from NAFLD. This study aimed to look into the dietary intake of NAFLD patients being treated at a tertiary care hospital in Karachi, Pakistan Objective: To determine the nutritional status of NAFLD patients. Method: 118 NAFLD patients, aged 18 to 60, male and female, were enrolled. Patients with advanced liver or kidney failure, decompensated liver disease, hepatocellular carcinoma, acute flare, and chronic liver disease were excluded. This cross-sectional study used an interview-administered questionnaire to collect data on sociodemographic characteristics, anthropometric measurements, nutrition-related biochemical measurements, and dietary intake (24-hour diet recall and validated food frequency questionnaire). Data were analyzed using SPSS (VERSION) Statistics v26 RESULTS: Out of 118 subjects; 69% were female, Anthropometric data revealed that 41% were morbidly obese (BMI 29 >kg/m2). The average daily calorie and protein intakes were 2135 kcal and 64.2 gm, respectively. Dietary recall indicates a high consumption of saturated fat foods including paratha (34%), cake (16.9%), pizza (17.8%), banaspati ghee (11%), and consumption of high glycemic fruits like Mango (42%) and dates (32.2%). Practical implication: this study will benefit that healthy diet plays a significant role prevention of NAFLD,and can reduce the burden of obesity and its complication in later life. Low carbohydrate intake, limiting saturated fat and increased physical activity play a vital role in management of NAFLD CONCLUSION: Participants with NAFLD had insufficient dietary patterns. This may be associated with lower consumption of fruits and vegetables, and increased intake of high saturated fat and glycemic index foods; behavioral strategies should be implemented to change this patient's overall dietary intake.
  • Nutrition knowledge and influence on diet in the carer-client relationship in residential care settings for people with intellectual disabilities

    Ellahi, Basma; Özdemir, Aslıhan; Hall, Rebecca; Lovell, Andrew; Hacettepe University; University of Chester; University of Salford (Wiley, 2023-01-17)
    People with intellectual disabilities generally have poorer health outcomes compared to those who do not, including outcomes related to nutrition-related non-communicable diseases. Carers support people with intellectual disabilities in many aspects including habitual shopping and preparation of food, but their own nutrition knowledge and the influence this may have on dietary intakes of clients is unknown. We explored the nutrition knowledge of carers of people with intellectual disabilities in residential care settings, their dietary habits and their influence on clients’ food shopping and preparation and therefore the diet consumed by their clients. Ninety-seven carers belonging to a large independent care sector organisation specialising in the care of people with an intellectual disability completed a validated general nutrition knowledge and behaviour questionnaire. Seventeen carers from the residential care settings were interviewed to contextualise practice. Knowledge about key dietary recommendations scored highly. Carers who had more work experience were found to be have higher scores in ‘making everyday food choices’ (p=0.034). Daily consumption of fruit and vegetables (at least one portion per day) was observed (for fruit by 39% of the carers and for vegetables by 44% of the carers), whilst most carers reported avoiding consuming full fat dairy products, sugary foods and fried foods. Concept of a healthy diet; typical dietary habits of clients; role in food acquisition; and training in nutrition emerged as themes from the interviews. Carers discussed various topics including importance of a balanced diet, cooking fresh foods and control of food portion sizes for clients relative to the care philosophy of a client-centred approach, which encapsulates client autonomy. Gaps in knowledge around specific nutrients, making healthy choices and cooking skills remain. Carers have an influence on client’s dietary choices; they are able to provide healthy meals and share good dietary habits with clients. Further training in nutrition is recommended for impact on clients’ health.
  • A scoping review of clinical skill development of preregistration registered nurses in Australia and five other English‐speaking countries

    Currie, Jane; Thompson, Cristina; Grootemaat, Pam; Andersen, Patrea; Finnegan, Alan; Carter, Michael; Halcomb, Elizabeth (Wiley, 2022-02-10)
  • Intimate Partner Violence in Same-Sex Relationships: Are We Aware of the Implications?

    Kar, Anindya; Das, Nabagata; Broadway-Horner, Matthew; Kumar, Praveen (SAGE Publications, 2022-11-30)
    Intimate partner violence (IPV) has been a significant public health problem in same-sex relationships. However, health policies across the globe do not address IPV causing a massive gap in health and economic burden. In the last decade, crucial missing links have been established, and researchers tried to connect the dots of this severe health disparity. This intersectionality has found the impact of race, gender, class, physical ability, and legal framework of IPV in lesbian, gay, and bisexual (LGB) relationships. However, preventive strategies, training programs, and dialogues in the clinical field about IPV are from heteronormative lenses. This particular bias can perpetuate the issue and will remain one of the leading causes of health burden in the LGB population. This article reviews the lacunae in health policies regarding same-sex IPV, highlights its impact on minority mental health, and calls for attention to train health-care professionals regarding the same.
  • Experiences of ethnic minority personnel in the armed forces: A systematic review

    Salem, Kate; Randles, Rebecca; Sapre, Bhairavi; Finnegan, Alan; University of Chester; Cheshire and Wirral NHS Foundation Trust
    Introduction: Ethnic minority personnel experience greater levels of harassment and discrimination than their non- minority counterparts. This review demonstrates the impact of these experiences on ethnic minority personnel in the armed forces. Methods: A literature search was conducted in PubMed, PsycInfo, PsycArticles, EBSCO, and Web of Science. Sixteen articles that discussed Black, Asian, and ethnic minority armed forces personnel were analyzed. Results: Much of what is known about ethnic minority experiences of serving in the armed forces is based on ethnic minorities in the U.S. Armed Forces. The available literature shows that ethnic minority serving personnel and Veterans experience greater disadvantage than their native counterparts, both during and after service. Ethnic minority personnel reported poorer health than white personnel and fear of criticism from their ethnic minority community on disclosure of traumatic experiences. Ethnic minority personnel were also more likely to access formal mental health services yet less likely to engage in treatment, particularly women. Three themes were identified: cultural identity, health status and health utilisation, and trauma and discrimination. Discussion: Research reports often do not highlight individ­ ual ethnic minority groups, thus making it difficult to draw conclusions about them. Future research should consider evaluating the psychosocial context influencing functioning among different ethnic minority groups and should also explore the benefits of serving in the armed forces.
  • Prevalence, Risk Factors and Self-awareness for Hypertension and Diabetes: Rural-Urban and Male-Female Dimensions from a cross-sectional study in Ghana

    Ellahi, Basma; Dikmen, Derya; Faith, Agbozo; Francis, Zotor; Amanda, Aitken; Bilge, Seyhan-Erdoğan; Omer, Faruk Karabulut; University of Chester; Hacettepe University Turkey; University of Health and Allied Sciences (Springer, 2022-11-29)
    Background: Hypertension and diabetes remain the primary cause of non-communicable disease (NCD) related morbidity and mortality globally. Rural-urban transitions in developing countries might aggravate the risk factors and prevalence of these conditions. The study aims to determine prevalence, demographic, anthropometric and diet-related predisposing factors for hypertension and diabetes among urban and rural dwellers and assess participants’ self-awareness of their hypertension and diabetes status. Methods: This cross-sectional survey involved 850 adult males and females age ≥18 years residing in urban and rural areas in the Hohoe Municipality of Ghana, randomly sampled using probability proportional to size. Data included demographic, anthropometric, physiologic (blood pressure, fasting blood glucose) and dietary information. Nutrient quantities were analysed using the Research to Improve Infant Nutrition and Growth (RIING Nutrient Database Software. All other data was analysed in SPSS (v25). Risk factors for hypertension were estimated through ordinal logistic regression and the odds ratio (OR) with the corresponding 95% confidence level (CI) documented. Results: More females participated than males (58.4% vs 41.6%), similarly rural compared to urban inhabitants (53.5% vs 47.5%, p=0.002) with a mean age of 47.3±16.1 years. Females generally had higher adiposity, rural dwellers had higher BMI whereas urban dwellers had higher waist and hip circumferences. Overall, 4.4% and 18.5% were diabetics and pre-diabetics; while 20.4% and 12.1% were overweight and obese respectively. Of the 36.8% hypertensives, only 18.2% were aware of their status, with significant male (40.3%) female (59.7%); and urban (43.5%) rural (56.6%) differences. Males had higher intakes of energy and nutrients of public health importance to hypertension, similar as rural inhabitants except for cholesterol. Advancing age (95% CI: 0.02.03-0.05), being male (OR: 1.56 95% CI:0.12-0.81) and increased BMI (95% CI: 0.01-0.11) were independently associated with hypertension. Conclusions: A third of the population were hypertensives but were unaware. Findings challenge the assumption of lower predisposition among rural inhabitants as we observe lifestyle habits consistent with increasing urbanisation. Efforts to mitigate rising NCD trend requires intensified community-based screening, awareness creation, and lifestyle interventions to improve diet, physical activity and health seeking.
  • Economic Burden of Huntington's Disease in Europe and the USA: Results from the Huntington's Disease Burden of Illness Study (HDBOI)

    Rodríguez‐Santana, Idaira; Mestre, Tiago; Squitieri, Ferdinando; Willock, Rosa; Arnesen, Astri; Clarke, Alison; D’Alessio, Barbara; Fisher, Alex; Fuller, Rebecca; Hamilton, Jamie L.; et al. (Wiley, 2022-11-24)
  • The potential impact of gene therapy on health-related quality of life (HRQoL) domains in haemophilia

    Bullinger, Monika; Gardner, Diandra L.; Lewis, Hannah B.; Miesbach, Wolfgang; Nolte, Sandra; O’Hara, Jamie; O’Mahony, Brian; Pollard, Debra; Skinner, Mark; Quinn, Jennifer; et al. (Haemnet, 2021-05-30)
    Introduction Haemophilia is an inherited bleeding disorder characterised by spontaneous bleeding, often leading to impaired health-related quality of life (HRQoL). Commonly used treatments include episodic and prophylactic treatment regimens. Gene therapies could soon become available, potentially creating a paradigm shift in patient management. Aim This paper proposes hypotheses about the potential impact of gene therapy on HRQoL domains in haemophilia, and how these impacts might differ compared with existing treatments. Methods An expert working group with 10 individuals experienced in haemophilia and HRQoL research was established to discuss potential impacts of gene therapy on HRQoL in general and for specific domains in haemophilia. As part of a one-day workshop, domains of three widely used patient-reported outcome (PRO) instruments were explored: the Haemo-QoL-A, the Patient Reported Outcomes, Burden and Experiences (PROBE), and the Haemophilia Activities List (HAL). Results The group expected a greater improvement in HRQoL from gene therapy compared with existing treatments for the following domains: physical/role functioning, worry, and consequences of bleeding (Haemo-QoL-A); haemophilia-related health and EQ-5D-5L (part of the PROBE); leg and arm function, and leisure activities (HAL). In contrast, the experts suggested that no change or potential deterioration might be observed for the emotional impact (HAL) and treatment concerns (Haemo-QoL-A) domains. Conclusions Current PRO instruments in haemophilia have limitations when applied in the context of gene therapy, and no single instrument fully captures the relevant HRQoL domains. However, the PROBE and Haemo-QoL-A were considered as the most suitable existing instruments. As haemophilia treatments evolve, further research should examine the potential effectiveness of existing PRO instruments as compared to the development of novel PRO measures.
  • Self Harm in Secure Settings: Exploring the Lived Experiences of People who Self Harm in Secure Hospitals

    Dake, Andy; Murphy, Neil; McAndrew, Sue; University of Chester; University of Salford (Wiley, 2022-11-07)
    Globally, an increasing number of people who Self Harm (SH) are being treated in mental health hospitals. Incidences of SH are common in secure hospitals, with those using the behaviour being highly dependent on staff for care and support but impacting on often limited resources. Whilst literature related to the lived experiences of people who SH exists, this is in its infancy in African countries. The aim of this study was to explore the lived experiences of people who SH in two secure mental health hospitals in Ghana. Interpretive Phenomenological Analysis (IPA) was used to explore the experiences of people who SH in two secure mental hospitals in Ghana. A convenience sample of nine participants were recruited and face to face in-depth semi structured interviews were used to collect data. With the permission of each participant all interviews were audio recorded and notes were made by the researcher (first author). Each interview was transcribed and analysed using the IPA seven- step approach, with three superordinate and 11 subordinate themes being identified. The superordinate themes were: Being let down; Living with the negative self; Forces of the supernatural and religion. Findings demonstrate that there is a need to develop a collaborative health care package if appropriate care and support is to be offered to people in secure settings who use high-risk behaviours, such as SH. To ensure care is holistic, culturally, and temporally relevant research is needed, particularly in Sub-Saharan Africa.
  • Ageing well. Activity for healthy ageing, a review of interventions to improve health and wellbeing in older people.

    Chapman, Hazel M.; University Of Chester (Active Cheshire, 2022-09-21)
    In the right setting, with the right support and the right opportunities, older people gain health, wellbeing, enjoyment and social engagement from physical activity. Social inclusion and physical activity are essential for ageing well. This report has reviewed 53 research papers (49 of them primary research) from the last five years that have studied the relationship between physical activity and its effectiveness in improving the health and wellbeing of older people. Not all of the positive outcomes can be measured as they are feelings of happiness, friendship, belonging and satisfaction with personal achievement; others can be measured in terms of cardiovascular fitness, body mass index (BMI), functional fitness and walking speed, balance and muscle strength. They are all important. It is essential to address the biopsychosocial aspects of our lives to promote ageing well for all. To be effective in supporting older people, the whole community must be engaged in supporting each other. Qualified instructors are essential, but employing the leadership and networking skills of older people themselves and offering a wide variety of group activities at central hubs and using outdoor, open-access facilities will provide more opportunities for engagement and support. Promoting social interaction as part of the offerings is essential, while promoting inclusivity and involving stakeholders in feedback, decisions and organisation is vital to success in promoting health, wellbeing and successful ageing through physical activity. Please see the recommendations at the end of the report for a summary of how the evidence can be applied.
  • Association of factor expression levels with annual bleeding rate in people with haemophilia B

    Burke, Tom; Shaikh, Anum; Ali, Talaha M.; Li, Nanxin; Konkle, Barbara A.; Noone, Declan; O'Mahony, Brian; Pipe, Steven; O'Hara, Jamie (2022-11-04)
    Introduction: Gene therapy clinical trials measure steady‐state clotting factor expression levels (FELs) to evaluate the modulation of the bleeding phenotype, aiming to offer consistent protection against breakthrough bleeding events. The link between FELs and bleeding risk in people with haemophilia B (PwHB) is not well understood. Aim: We evaluated the association between FEL and ABR in PwHB. Methods: This cross‐sectional study extended the CHESS burden of illness studies in Europe and the United States. Recruitment of additional adult males with haemophilia B supplemented the existing CHESS sample size of PwHB and FELs. PwHB receiving prophylaxis were excluded, as fluctuating FELs may have confounded the analysis. Demographic and clinical characteristics were reported descriptively. Any recorded baseline FEL was reported by the haemophilia‐treating physicians according to the medical records. Generalised linear models with log link explored the association between changes in FEL and ABR. Results: The study included 407 PwHB and no inhibitors receiving on‐demand treatment. Mean age was 36.7 years; 56% from the EU, 44% from the United States. Mean baseline FEL was 9.95 IU/dl (SD, 10.47); mean ABR was 2.4 bleeds/year (SD, 2.64). After adjusting for covariates, the model showed that for every 1% increase in FEL the average ABR decreased by .08 (p < .001). Predicted number of bleeding events according to FEL showed a significant non‐linear relationship between FEL and ABR (p < .05). Conclusion: This analysis showed a significant relationship between FEL and ABR, where increases in FEL were associated with decreases in ABR among men with HB in Europe and the US.
  • Determinants of Homelessness (SODH) in North West England in 2020

    Mabhala, M (Oxford University Press (OUP), 2022-10-25)
    Background Poverty creates social conditions that increase the likelihood of homelessness. These include exposure to traumatic life experiences; social disadvantages such as poor educational experiences; being raised in a broken family, care homes or foster care; physical, emotional, and sexual abuse; and neglect at an early age. These conditions reduce people's ability to negotiate through life challenges. Methods This cross-sectional study documents the clustering and frequency of adverse social conditions among 152 homeless people from four cities in North West England between January and August 2020. Results Two-step cluster analysis showed that having parents with a criminal record, care history, and child neglect/abuse history was predictive of homelessness. The cluster of indicator variables among homeless people included sexual abuse (χ2 (N = 152) = 220.684, p &amp;lt; 0.001, Cramer's V = 0.7), inappropriate sexual behaviour (χ2 (N = 152) = 207.737, p &amp;lt; 0.001, Cramer's V = 0.7), emotional neglect (χ2 (N = 152) = 181.671, p &amp;lt; 0.001, Cramer's V = 0.7), physical abuse by step-parent (χ2 (N = 152) = 195.882, p &amp;lt; 0.001, Cramer's V = 0.8), and physical neglect (χ2 (N = 152) = 205.632, p &amp;lt; 0.001, Cramer's V = 0.8). Conclusions Poverty and homelessness are intertwined because of the high prevalence of poverty among the homeless. Poverty sets up a chain of interactions between social conditions that increase the likelihood of unfavourable outcomes: homelessness is at the end of the interaction chain. Interventions supporting families to rise out of poverty may also reduce entry into homelessness. Key messages
  • The Impact of Pharmacokinetic-Guided Prophylaxis on Clinical Outcomes and Healthcare Resource Utilization in Hemophilia A Patients: Real-World Evidence from the CHESS II Study.

    Ferri Grazzi, Enrico; Sun, Shawn X.; Burke, Tom; O'Hara, Jamie (2022-09-19)
    Background: Using a pharmacokinetic (PK)-guided approach to personalize the dose and frequency of prophylactic treatment can help achieve and maintain targeted factor VIII (FVIII) trough levels in patients with hemophilia A. Objective: Investigate clinical and healthcare resource use outcomes in patients with hemophilia A treated with or without PK-guided prophylaxis using data from the Cost of Haemophilia in Europe: A Socioeconomic Survey (CHESS) II database. Methods: CHESS II was a cross-sectional, retrospective, burden-of-illness study incorporating data from eight European countries. Patients were eligible for this analysis if they were male, ≥18 years of age, and diagnosed with congenital hemophilia A of any severity. The clinical endpoints included annualized bleeding rate (ABR), presence and number of problem/target joints, and occurrence of joint surgeries. Healthcare resource utilization endpoints included the number of hematologist consultations and bleed-related hospitalizations or emergency department admissions. Data from November 2018 to October 2020 were included and were stratified according to treatment regimen and use of PK-guided dosing. Results: Altogether, 281 patients on prophylaxis had available FVIII trough level data. Mean (SD) age was 35.7 (13.8) years. A specific FVIII trough level was targeted in 120 (42.7%) patients and 47 (39.2%) received PK-guided dosing. Patients receiving PK-guided dosing had a mean (SD) ABR of 2.8 (2.1) and target joint number of 0.5 (0.7), compared with 3.9 (2.7) and 0.9 (1.4), respectively, for patients receiving non-PK-guided treatment. The mean (SD) number of hematologist consultations was 7.1 (5.3) for patients receiving PK-guided dosing versus 10.7 (5.7) for those who were not. A higher proportion of patients in the non-PK-guided group required hospitalization during their lifetime compared with the PK-guided group.<h4>Conclusion</h4>This analysis of real-world data suggests that PK-guided dosing for prophylaxis has a beneficial impact on clinical and healthcare resource utilization outcomes in patients with hemophilia A.
  • Promoting practitioner research through a social work teaching partnership

    Buck, Gillian; Whiteside, Nicola; Newman, Andrea; Jones, Helen; Stanley, Selwyn; Feather, Julie; Millard, Wayne; University of Chester; Cheshire and Merseyside Social Work Teaching Partnership; Liverpool John Moores University; Warrington Borough Council; Edge Hill University (Taylor and Francis, 2022-09-29)
    Research is critical for effective and innovative social work practice, yet social workers do not always have time to engage with research and there are limited accounts of how practitioners can undertake research in practical and meaningful terms (Mitchell, Lunt, and Shaw 2010). Using a reflective, storytelling methodology (Beresford 2016), which centres experiential knowledge, we describe how one regional social work teaching partnership nurtured practitioner research over a three-year period. We introduce a regionally administrated ‘hub’, that connected social workers and academics and supported the development of seventeen research teams. The studies that resulted, focused on a range of important issues including child protection, young people in transition to adult services, adults in community and residential settings, lived experience-led provision, and social work education. In terms of limitations, our reflections are descriptive and illuminative, rather than critical, our findings are also not representative but rather reflect a snapshot of practice. Despite limitations, this commentary reveals the feasibility and value of proactively nurturing practitioner research and offers a blueprint for cultivating similar initiatives in other regions.
  • Understanding the contribution of intellectual disability nurses: Scoping research - Volume 1 of 3: Scoping literature review report

    Mafuba, Kay; Forster, Marc; Chapman, Hazel M.; Kiernan, Joann; Kupara, Dorothy; Chester, Rebecca; Kudita, Chiedza; University of West London; University of Chester; Edge Hill University; Berkshire Healthcare NHS Foundation Trust
    Introduction This scoping review of literature is the first part of a 3-phase project. The RCN Foundation commissioned the University of West London and their collaborators to undertake scoping research on understanding the contribution of nurses to improving the health and well-being of children, adults and older people with intellectual disabilities, now and for the future. The overall aim of the research is to identify nursing-led and / or nursing centred interventions that are in place to address the challenging and changing needs of people with intellectual disabilities. The research sought to identify interventions, that can be implemented by nurses working in multi-disciplinary teams. The research identifies areas of good care delivery, any innovative practices, and possible gaps in the provision of care for individuals with intellectual disabilities. Objective The overall objective of this review is to summarise evidence on the contribution of intellectual disability nurses to improve the health and well-being of children, adults and older people with intellectual disabilities, now and for the future. Methods We searched the Joanna Briggs Institute (JBI) Reports, Medline, Embase, PsycINFO, CINAHL, Academic Search Elite, ProQuest Dissertations and Theses (Global) also known as Index to Theses, ETHOS, UK Government publications, and professional organisations’ publications. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (for Scoping Reviews) (PRISMA-ScR) process and Joanna Briggs Institute (JBI) guidance was used to select the literature for review and to present the literature review report (Tricco et al., 2018; Peters et al., 2017). A mixed methods approach to the review and synthesis was used due to the heterogeneous nature of the evidence. JBI tools were used to rate studies for quality. Thematic synthesis was used to generate analytical themes. Results We retrieved 121 publications. Of these we excluded 35 after initial appraisal. We appraised 86 publications and excluded 33 after appraisal and we included 53 publications in this review. We identified a wide range of interventions (154) performed by intellectual disability nurses in a variety of settings across the lifespan. We categorised the intellectual disability nursing interventions into three themes; effectuating nursing procedures, enhancing impact of services, and enhancing quality of life. The majority of publications reported cross-sectional studies (77%), 6% of publications were literature reviews, and 17% were opinion papers. Only two of the primary studies investigated the effectiveness of intellectual disability nurse interventions. The majority of the publications focused on interventions related to adults (31). Not all publications focussed on a particular age group. One publication referred to maternity, five focussed on interventions relevant to children, ten identified interventions relevant to all age groups, five focussed on older adults, five focussed on end of life interventions and one publication was not clear. Conclusions We identified 154 interventions performed by intellectual disability nurses in a variety of settings. We categorised the interventions into three themes; Effectuating nursing procedures (52 interventions), Enhancing impact of services (73 interventions), and Enhancing quality of life (41 interventions). Publications identifying the interventions performed by intellectual disability nurses in relation to maternity, children, older adults and end of life care were limited. Publications did not demonstrate the impact and effectiveness of interventions. This advocates for high quality research being essential in determining the impact and effectiveness of intellectual disability nursing interventions across the lifespan. We recommend that a searchable online compendium of intellectual disability nurse interventions be established and regularly reviewed.
  • Understanding the contribution of intellectual disability nurses: Scoping research. Volume 3 of 3 – Compendium of intellectual disability nursing interventions.

    Mafuba, Kay; Chapman, Hazel M.; Kiernan, Joann; Kupara, Dorothy; Chester, Rebecca; Kudita, Chiedza; City University, London; University of Chester; Edge Hill University; Berkshire Healthcare NHS Foundation Trust
    Introduction The RCN Foundation commissioned the University of West London and their collaborators to undertake scoping research on understanding the contribution of nurses to improve the health and well-being of children, adults and older people with intellectual disabilities (ID), now and for the future. The overall aim of the research was to identify nursing led and or nursing centred interventions that address the challenging and changing needs of people with ID. This, the ‘Compendium of ID nursing interventions’ provides a catalogue of these interventions. The research project report is in three volumes; Volume 1/3: Scoping literature review report; Volume 2/3: Scoping survey research report; and Volume 3/3: Compendium of intellectual disabilities nursing interventions (this volume). Methods In phase 1 of the project, we undertook a scoping literature review using the Joanna Briggs Institute’s (JBI) scoping review protocols. We used the PRISMA-ScR process and JBI guidance to select the literature for review and to present the literature review report (Trico, et al., 2018; Peters, et al., 2017). A mixed methods approach to the review and synthesis was used due to the heterogeneous nature of the evidence. JBI tools were used to pool findings and rate them for quality. Thematic synthesis was used to generate analytical themes. Empirical (quantitative, qualitative, mixed methods) studies, synthesised evidence (literature reviews) and opinion papers, (n = 52) were included in the review (see volume 1 of the report). In phase 2 of the project, we undertook an online survey to collect quantitative and qualitative data. There were 230 participants from 7 countries. We used thematic, and content analyses to analyse qualitative data. We undertook descriptive and inferential analyses of quantitative data (see volume 2 of the report) Emerging ID nursing interventions In total we identified 925 interventions. In phase 1 we identified 154 ID nursing interventions, and in phase 2 we identified 878 interventions. The discrepancy in the total numbers is that interventions which appeared in both phases are only recorded once. In phase 2, these interventions were undertaken in a wide range of settings and across the lifespan. We categorised the interventions into five themes; effectuating nursing procedures, enhancing impact of ID services, enhancing impact of mainstream services, enhancing quality of life, and enhancing ID nursing practice. We have merged the interventions we identified in the literature review and from the table below. We have removed duplicates and merged the evidence sources where appropriate.

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