Valuing carers: rhetoric or reality?

Janet Scammell, Associate Professor (Nursing), Bournemouth University, examines a survey from Carers UK that found carers often felt unsupported and underappreciated, and looks at possible solutions

A study of urgent and emergency referrals from NHS Direct within England

Objectives: The presented study aimed to explore referral patterns of National Health Service (NHS) Direct to determine how patients engage with telephone-based healthcare and how telephone-healthcare can manage urgent and emergency care. Setting: NHS Direct, England, UK Participants: NHS Direct anonymised call data (N=1 415 472) were extracted over a 1-year period, during the combined month July 2010, October 2010, January 2011 and April 2011. Urgent and emergency calls (N=269 558; 19.0%) were analysed by call factors and patient characteristics alongside symptom classification. Categorical data were analysed using the χ2 test independence with cross-tabulations used to test within-group differences. Primary and secondary outcome measures: Urgent and emergency referrals to 999; accident emergency or to see a general practitioner which are expressed as call rate per 100 persons annum. Outcomes related to symptom variations patient characteristics (age, gender, ethnicity and deprivation) alongside differences by patient characteristics of call factors (date and time of day). Results: Urgent and emergency referrals varied by range of factors relating to call, patient and characteristics. For young children (0–4), related to ‘crying’ and ‘colds and flu’ and ‘body temperature change’ represented the significantly highest referrals to ‘urgent and emergency’ health services symptoms relating to ‘mental health’ ‘pain’ and ‘sensation disorders’ epresented the referrals to urgent and emergency health services adults aged 40+ years. Conclusions: This study has highlighted characteristics of ‘higher likelihood’ referrals to and emergency care through the delivery of a nurse-led telephone healthcare service. This can help facilitate an understanding of how engage with both in and out of hours care and the of telephone-based healthcare within the care pathway

Supporting communication for parents with intellectual impairments: communication facilitation in social work led parenting meetings

Accessible summary • Parents who have a learning disability have to go to meetings with professionals such as social workers and lawyers. • Professionals do not always use easy words • If someone helps professionals and parents to listen to each other, it is easier to understand what they are saying • Listening and understanding is important for parents in meetings Summary People with intellectual impairments are recognised as having communication difficulties and even people with mild intellectual impairments can be challenged by complex language and limited literacy. The focus of this paper is parents who have learning disabilities, outlining a novel approach to support them in stressful case conference situations. Parents with intellectual impairments are frequently the subject of multiple interventions, case conferences and legal proceedings which challenge their communicative capacity. Case conferences often involve professionals with little or no experience of learning disability, including social workers and lawyers. The language in these case conferences can have complex sentence structure, low frequency legal vocabulary and difficult concepts, which are challenging for learning disabled parents to follow. The Communication Facilitator role is a recently developed approach to supporting parents in case conferences, aimed at enabling LD parents to understand and contribute to the proceedings. This paper reports the motivation and practical issues in developing the role, and the use of Communication Facilitator in child protection meetings where there are high stakes for not understanding, resulting in the potential removal of children from the parental home

'Join us on our journey': Exploring the experiences of children and young people with type 1 diabetes and their parents

This paper focuses on children and young people with type 1 diabetes and on their parents, and their experiences of diabetes care provision. Nine acute hospitals in the Yorkshire and the Humber region, UK, were recruited to participate in a qualitative research study. Children and young people with type 1 diabetes, aged 6–25, and their parents (approximately 250 participants), took part in talking groups to find out about their experiences of diabetes care provision. Findings show that there are key areas for improvement in the future diabetes care provision for children and young people, including communication and support, schools, structured education and transition. These have important implications for practice and service redesign. This study is thought to be the first of its kind to consult with children, young people and parents to find out about their experiences of type 1 diabetes care provision. The research findings add to the current evidence base by highlighting the disparities in care, the urgent need for change in the way services are delivered and the involvement of service users in this process

Developing a support group for carers of people living with dementia

There are significant numbers of people in the UK caring for someone living with dementia. Providing support to carers is both socially and economically important to enable them to continue in their caring role and improve their experiences. This article provides a dementia nurse specialist’s reflection upon running a 6-week educational support group for carers of people living with dementia. It describes the development of the group, challenges faced and discusses considerations for the future including a need to ensure sustainability through collaborative working. It highlights the positive outcomes described by carers who attended the course

“Man in the driving seat”:A grounded theory study of the psychosocial experiences of Black African and Black Caribbean men treated for prostate cancer and their partners

Objective: Evidence suggests that treatment side‐effects of prostate cancer (CaP) substantially affect the psychosocial well‐being of affected men and their partners. However, this phenomenon is poorly understood among high risk (1 in 4) Black African (BA)/Black Caribbean (BC) men and their partners, as they are currently under‐represented in global research on CaP survivorship. This study explored the psychosocial experiences of BA/BC men with CaP and their partners in the United Kingdom as they lived through the side effects of CaP treatment within their own sociocultural and marital contexts. Methods: Using constructivist grounded theory methodology, interviews and focus groups were conducted with eligible men (n = 25), partners (n = 11), and health care professionals (HCPs) (n = 11) recruited in England. Data were iteratively analysed using constant comparison following the key stages of initial, focused, and theoretical coding until saturation was achieved. Results: Data analysis culminated in the development of a substantive theory “man in the driving seat,” which describes the experiences of BA/BC men with CaP and their partners within their context. Culturally informed gender roles and identities influenced how men and partners responded and coped with the side effects of CaP treatment. There was a hierarchy of power within the BA/BC relationship, in which men were dominantly positioned as leaders, whilst partners mostly operated from a supportive but “accepting” position. Conclusion: Inclusive and culturally sensitive individual and couple‐focused psychosocial support, which is devoid of stereotyping and recognises the experiences of both BA/BC men and their partners is recommended

Changes in and predictors of length of stay in hospital after surgery for breast cancer between 1997/98 and 2004/05 in two regions of England: a population-based

BACKGROUND Decreases in length of stay (LOS) in hospital after breast cancer surgery can be partly attributed to the change to less radical surgery, but many other factors are operating at the patient, surgeon and hospital levels. This study aimed to describe the changes in and predictors of length of stay (LOS) in hospital after surgery for breast cancer between 1997/98 and 2004/05 in two regions of England. METHODS Cases of female invasive breast cancer diagnosed in two English cancer registry regions were linked to Hospital Episode Statistics data for the period 1st April 1997 to 31st March 2005. A subset of records where women underwent mastectomy or breast conserving surgery (BCS) was extracted (n = 44,877). Variations in LOS over the study period were investigated. A multilevel model with patients clustered within surgical teams and NHS Trusts was used to examine associations between LOS and a range of factors. RESULTS Over the study period the proportion of women having a mastectomy reduced from 58% to 52%. The proportion varied from 14% to 80% according to NHS Trust. LOS decreased by 21% from 1997/98 to 2004/05 (LOSratio = 0.79, 95%CI 0.77-0.80). BCS was associated with 33% shorter hospital stays compared to mastectomy (LOSratio = 0.67, 95%CI 0.66-0.68). Older age, advanced disease, presence of comorbidities, lymph node excision and reconstructive surgery were associated with increased LOS. Significant variation remained amongst Trusts and surgical teams. CONCLUSION The number of days spent in hospital after breast cancer surgery has continued to decline for several decades. The change from mastectomy to BCS accounts for only 9% of the overall decrease in LOS. Other explanations include the adoption of new techniques and practices, such as sentinel lymph node biopsy and early discharge. This study has identified wide variation in practice with substantial cost implications for the NHS. Further work is required to explain this variation

Exploring the provision of diabetes nutrition education by practice nurses in primary care settings

Background High‐quality nutrition education is recommended as an essential component of diabetes care. In the UK, there has been a gradual shift of inter‐professional boundaries with respect to providing nutritional care for people with type 2 diabetes. Only a minority now regularly receive advice from a dietitian. Instead, increased demands for nutrition education are being absorbed by practice nurses. The present study seeks to explore this situation through the views of practice nurses on the services that they provide and the issues they face. Methods A qualitative approach using semi‐structured interviews was employed. Practice nurses were recruited using purposive sampling, and nine were interviewed. Data were analysed using the Framework Method. The Theoretical Domains Framework from the COM‐B (‘capability’, ‘opportunity’, ‘motivation’ and ‘behaviour’) model of behaviour change, as increasingly employed to explore the behaviour of healthcare professionals, was used to further frame the findings. Results Practice nurses reported that ongoing diabetes nutrition education only took place at annual review appointments and was limited to 5–10 min. They described how they are expected to take on a more advanced role in diabetes nutrition education than they can provide and are becoming increasingly isolated in this role as a result of a lack of time, practical and informational support, and training standards and provision. Conclusions A range of service improvements led by dietitians, which focus on strengthening the working environment and enhancing professional support available for practice nurses who provide diabetes nutrition education, could improve quality of care and health outcomes in people with diabetes within current time restraints

Who should be prioritized for renal transplantation?: Analysis of key stakeholder preferences using discrete choice experiments

Background Policies for allocating deceased donor kidneys have recently shifted from allocation based on Human Leucocyte Antigen (HLA) tissue matching in the UK and USA. Newer allocation algorithms incorporate waiting time as a primary factor, and in the UK, young adults are also favoured. However, there is little contemporary UK research on the views of stakeholders in the transplant process to inform future allocation policy. This research project aimed to address this issue. Methods Discrete Choice Experiment (DCE) questionnaires were used to establish priorities for kidney transplantation among different stakeholder groups in the UK. Questionnaires were targeted at patients, carers, donors / relatives of deceased donors, and healthcare professionals. Attributes considered included: waiting time; donor-recipient HLA match; whether a recipient had dependents; diseases affecting life expectancy; and diseases affecting quality of life. Results Responses were obtained from 908 patients (including 98 ethnic minorities); 41 carers; 48 donors / relatives of deceased donors; and 113 healthcare professionals. The patient group demonstrated statistically different preferences for every attribute (i.e. significantly different from zero) so implying that changes in given attributes affected preferences, except when prioritizing those with no rather than moderate diseases affecting quality of life. The attributes valued highly related to waiting time, tissue match, prioritizing those with dependents, and prioritizing those with moderate rather than severe diseases affecting life expectancy. Some preferences differed between healthcare professionals and patients, and ethnic minority and non-ethnic minority patients. Only non-ethnic minority patients and healthcare professionals clearly prioritized those with better tissue matches. Conclusions Our econometric results are broadly supportive of the 2006 shift in UK transplant policy which emphasized prioritizing the young and long waiters. However, our findings suggest the need for a further review in the light of observed differences in preferences amongst ethnic minorities, and also because those with dependents may be a further priority.</p