bluuebunny/crossref_metadata_2025 huggingface dataset:
Understanding patients’ lived experience following photodynamic therapy for the treatment of advanced cancer
Authors: Walker Gail , Andrew Jane
Published: May 2014

Aim: To gain an understanding of patients’ lived experience following photodynamic therapy (PDT) for the treatment of advanced cancer. Background: Existing literature on PDT tends to be predominantly grounded in basic science and mainly associated with the effect of PDT on the cancer rather than the individual’s experience. An appreciation of the impact on patients’ day-to-day life may enhance the support and advice offered to patients undergoing this treatment. Method: A Heideggerian hermeneutic phenomenological approach was used as the philosophical framework. Semi-structured interviews were conducted with a purposive sample of six participants. Thematic content analysis was adopted to analyse the data, which yielded six themes. Findings: Analysis of the data yielded six themes: the impact on day-to-day life; existential meaning; the physical effects of treatment; kaleidoscope of emotions; information gap; and family burden. Conclusion: PDT offers palliation of symptoms for some participants while offering hope of enhanced quality of life. Patients and their families have to be willing and well-informed of the need to comply with the guidance provided by healthcare professionals and information leaflets to avoid any photosensitive reaction. There is a need for education for healthcare professionals as PDT is not well recognized or understood as a treatment for advanced cancer.
Understanding the management of lymphoedema for patients with advanced disease
Authors: Honnor Amanda
Published: May 2014

The problems associated with lymphoedema can be devastating, particularly for patients with lymphoedema and advanced disease. All lymphoedema treatment is palliative in nature as the underlying condition is incurable; however, much can be done to relieve the symptoms associated with the oedema. It is important to remember that the burden of treatment on the patient should not exceed the benefit gained and, therefore, treatment may have to be adapted and modified to suit patients’ individual needs. This article describes the classification, aetiology and nursing management of lymphoedema with an emphasis on the management of lymphoedema in the patient with advanced disease.
Problems arising when caring for a dying patient with cancer: reflection on a critical incident
Authors: Charalambous Andreas , Papastavrou Evridiki
Published: May 2014

Within health care, a critical incident is an event or circumstance involving a patient, their family or nurse, which has an important effect on the final outcome. Critical incidents can therefore only be identified retrospectively. The incident may have a positive effect or, conversely, it may be something that causes harm or suffering. While reflection and analysis of critical incidents is widely regarded as a valuable learning tool for nurses, its use in palliative care has not received such extensive acceptance. This paper uses the critical incident technique as a means of structured reflection to discuss the problems facing student nurses in the healthcare system of Cyprus when caring for a dying patient. It draws upon the relevant literature to examine specific problems faced by student nurses when dealing with patients with cancer.
Survey of educators’ end-of-life care learning needs in a Canadian baccalaureate nursing programme
Authors: Brajtman Susan , Fothergill-Bourbonnais Frances , Fiset Valerie , Alain Diane
Published: May 2014

Aim: To examine the potential need for faculty development in end-of-life care (EOLC) of theory and clinical educators in a collaborative bilingual undergraduate nursing programme in a Canadian university. Method: A purposive sample of 53 Anglophone and Francophone theory and clinical educators completed the Palliative Care Quiz for Nursing, the Frommelt Attitude Toward Care of the Dying Scale and an adapted Educators Educational Needs Questionnaire (Patterson et al, 1997). Results: Results indicated that educators held positive attitudes towards caring for dying patients and had modest knowledge levels. Participants identified personal educational needs, preferred learning formats, support and barriers to teaching EOLC and to their participation in continuing educational programmes. Strategies to enhance the teaching and learning of EOLC content in the theory and clinical context were suggested. Conclusion: Nurse educators require time, opportunities and relevant resources to develop the competencies required to support the theoretical and experiential learning of students in EOLC. Recommendations include a variety of approaches for faculty development initiatives, including face to face and virtual, which allow nurse educators to share expertise.
Issues of power, control and choice in children’s hospice respite care services: a qualitative study
Authors: Grinyer Anne , Payne Sheila , Barbarachild Zephyrine
Published: May 2014

The changes within children’s palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children’s hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families.
Boosting the knowledge of genetics-related issues in palliative care
Authors: Smyth Dion
Published: May 2014

Hospice and palliative care nurses are often called upon to care for patients who have developed their presenting condition as a result of an inherited predisposition. The psychosocial concerns and needs of this population, and their families, are multifarious, but may include issues such as guilt that they may have passed their condition—or at least a risk of developing it—to their children; however, the findings of a recent UK study by Metcalfe, et al (2009) revealed that hospice nurses lack the confidence necessary to discuss the genetics-related issues. The next few editions of Web Words will look at internet materials that will help inform this increasingly important and common feature of end-of-life care
Patient and public involvement in health research: what is it, and why is it so important?
Authors: Ardron David , Kendall Marilyn
Published: May 2014

The following quotes represent goals that most palliative nurses and researchers aspire to:
A case history of chronic heart failure and the benefits of palliative care: a local experience
Authors: Chester Tim J
Published: May 2014

This short case study will illustrate how collaborative working by cardiologists and specialist palliative care services can bring about positive and beneficial changes for those patients suffering from chronic heart failure. It will also demonstrate that earlier referral to palliative care will ensure that matters such as preferred place of care, can be discussed and put into place for the appropriate time.

The case study will reveal that patients and their carers accept referral to palliative care services and see the benefit of earlier referral.

It is further acknowledged that all referrals to specialist palliative care are a learning experience for both disciplines.
Dementia deaths in hospice: a retrospective case note audit
Authors: de Vries Kay , Nowell Allyson
Published: May 2014

Dementia is now recognized as a progressive terminal illness and it is established that people with dementia have significant palliative care needs as they approach the end of life. However, population prevalence studies suggest that very few people with dementia access hospice services in the UK. The literature further suggests that hospice staff may be inadequately prepared to care for people with dementia. A retrospective internal case note audit covering a 3-month period of referrals was undertaken in one hospice in the south of England as part of work to establish staff education requirements arising from patient make-up. Only patients over the age of 65 were included. Of the 288 case notes audited, 9% of the patients had either been diagnosed with dementia or suffered with dementia as a comorbidity. The results of the audit suggest that the number of people with dementia referred to hospice services may have increased in the last decade. This is in keeping with expectations and future predictions resulting from increased disease surveillance and an increasingly ageing population.
Use of dependency and prioritization tools by clinical nurse specialists in palliative care: an exploratory study
Authors: Bracken Mairéad , McLoughlin Kathleen , McGilloway Sinéad , McMahon Edith
Published: May 2014

Aims:

The principal aim was to assess the utility of three needs assessment/dependency tools for use in community-based palliative care services. Specific objectives were to assess a sample of patients receiving specialist palliative care community nursing using these tools, to assess the predictive ability of each tool, and to explore the utility of prioritizing and measuring patient dependency from a clinical nurse specialist (CNS) perspective.

Method:

In phase 1, 22 community-based CNSs completed the Vale prioritization tool for all patients visited during a 3-month period (n=162). They also completed either the Graves and Payne (2007) or the Birch et al (1997) dependency tool after each visit. In phase 2 a focus group (n=8) and two one-to-one interviews with CNS participants explored the perceived utility of all three tools.

Results:

The Vale prioritization tool appeared to be the most useful for prioritizing patient need and managing workload. Statistical analysis highlighted minimal differences between the two dependency tools, neither of which predicted length of visit. Three themes were identified from phase 2: difficulties with routine administration, points of divergence between the two dependency tools, and workload concerns.

Conclusion:

While the Vale prioritization tool emerged as the most useful, the findings raise questions about the overall utility and practical application of these kinds of tools with community-based palliative care patients. Further research is needed to identify/develop, adapt, and evaluate appropriate, setting-specific dependency tools for use with this population.
Compassionate extubation in children at hospice and home
Authors: Simpson Emma C , Penrose Catherine V
Published: May 2014

Objectives: At Leeds Paediatric Intensive Care Unit (PICU), whenever possible, patients are offered the opportunity to have mechanical ventilation withdrawn at a children's hospice or in the home. The aims of this study were to examine the views of the PICU staff regarding this choice, to understand their emotional and practical considerations, and to gain insight into the perceived effect on parents. Design: An anonymous open-ended questionnaire and a focus group session invited comments from the multidisciplinary staff on the palliative care service, the options for the child to die outside the PICU, and the practical and emotional effects on themselves and the parents. Results: Several major themes were identified: providing an appropriate environment for death in the PICU itself, parental choice, practical issues of transferring a dying child, emotional issues, service organization, and feedback from families. Overall, the staff thought that parents benefit from the choices offered. Conclusions: The PICU seems to ft neither the ‘consultative model’ nor the ‘integrative model’ of previous literature, but rather a ‘facilitative model’ not previously described.
Nurses’ views on using the Liverpool Care Pathway in an acute hospital setting
Authors: O’Hara Tina
Published: May 2014

The Liverpool Care Pathway (LCP) is one of three major recent UK initiatives to improve the care of people dying with malignant and non-malignant disease. This focus group research aimed to explore nurses’ perceptions of using the LCP in an acute hospital setting, their perceptions of its impact on patient care, and their confidence in care at the end of life, as well as to generate new ideas among peers. Six themes were identified: use of the LCP as a care tool; improved confidence, training, and support; the nursing–medical relationship; dying in hospital; and end-of-life issues. The nurses reported that the LCP has increased their confidence and resulted in improved patient care. Exploring the effect of the LCP on patient care may provide valuable data that may inform how the LCP is integrated into practice in the future.
Anticipating emotion: a qualitative study of advance care planning in the community setting
Authors: Minto Fiona , Strickland Karen
Published: May 2014

Advance care planning at the end of life is high on the political agenda across the UK. The aim is to deliver patient-centred care for all patients, whenever possible in their preferred place of care. It is widely acknowledged that discussions about the end of life are sensitive and often difficult for health professionals, particularly those in the community setting. The aim of this qualitative study was to determine the factors that assist or hinder the primary care health professionals having these discussions. The sample included one GP and one district nurse (DN) from each of three GP practices. Semi-structured interviews were conducted with the participants, and the data was analysed using a thematic approach. The findings clearly depict two of the challenges faced by the GPs and DNs in the community: emotional labour, and balancing patients’ and families’ expectations about care provision in the community with the limited resources available. This study contributes to the knowledge base of advance care planning by providing insight into the experiences of the GPs and DNs who care for patients at the end of life. Further research is required to more fully understand the emotional impact on the health professionals having these sensitive discussions.
Development and Evaluation of the Pain Assessment in the Communicatively Impaired (PACI) tool: part I
Authors: Kaasalainen Sharon , Stewart Norma , Middleton Joan , Knezacek Sandy , Hartley Terry , Ife Christie , Robinson Lara
Published: May 2014

Pain is a common symptom for long-term care residents, particularly those in need of palliative care. However, pain assessment in residents who have communication limitations is challenging. A study was conducted with the aim of developing a pain assessment tool that could feasibly be used by direct care providers in long-term care with minimal training yet demonstrating strong psychometric properties. The study used both qualitative and quantitative methods to develop and test the Pain Assessment in the Communicatively Impaired (PACI) tool. Part I of this paper reports on the development phase; a forthcoming second part will report on the testing phase. The overall results of this study support the psychometric properties and feasibility of the PACI tool, offering preliminary support for its use in clinical practice.
Barriers to cancer pain management: Jordanian nurses' perspectives
Authors: Al Khalaileh Murad , Al Qadire Mohammad
Published: May 2014

Background:

Adequate management of cancer pain is a human right. However, cancer pain is still not well medicated, and some of the barriers to achieving relief are related to nursing. Identifying these barriers would help the development of interventions to improve pain management.

Aim:

To explore barriers to cancer pain management among Jordanian nurses.

Method:

A convenience sample of 96 nurses from 3 hospitals participated in a cross-sectional survey using an Arabic translation of Ward and colleagues’ barriers questionnaire II.

Results:

The nurses expressed high levels of barriers on the questionnaire, with a mean score of 2.5 for the questionnaire as a whole (standard deviation (SD) 0.8). The harmful and physiological effects of medications subscales received the highest mean scores: 2.7 (SD 1.1) and 2.6 (SD 0.9) respectively.

Conclusions:

Many nursing-related barriers to cancer pain management were found. These barriers need to be addressed and eliminated, for example through education and training.
Hospital nurses’ views of the signs and symptoms that herald the onset of the dying phase in oncology patients
Authors: van der Werff Gertruud FM , Paans Wolter , Nieweg Roos MB
Published: May 2014

Determining the onset of the dying phase is important, because care aims and interventions change once this phase begins. In the dying phase, maximising comfort is paramount, even if doing so causes a deterioration of cognitive functions. In this delicate context, it is necessary to give special attention to the patient's personal wishes, spiritual guidance, and rituals, and to the emotional support of relatives. To initiate a care plan for the dying, health professionals must recognise and acknowledge when a patient enters the dying phase. This article describes hospital nurses’ perspectives on the signs and symptoms that herald the onset of the dying phase in oncology patients, obtained via three focus group discussions. A broad range of signs and symptoms were reported and are presented here as a conceptual model. Further research is needed to determine whether the signs and symptoms that mark the onset of the dying phase in oncology patients may be tumour-specific.
Retaining older staff members in care homes and hospices in England and Australia: the impact of environment
Authors: Rigby Janet , O'Connor Margaret
Published: May 2014

Aim:

To explore the views of older Australian and English care home and inpatient hospice staff on the physical environment of their workplace.

Method:

The paper reports on an issue that was highlighted during a larger ethnographic study of the inpatient environments in which older people receive end-of-life care. During visits to sixteen care homes and inpatient hospices—seven in England and nine in Australia—informal discussions were held with staff in which they described the challenges posed by the physical environment of their workplace.

Results:

Several of the staff, who were predominantly older female nurses, described the difficulties of working in a care environment that was not always fit for current purpose. For example, they found it tiring to have to walk long distances between tasks, and experienced difficulty with manoeuvring heavy equipment on unsuitable floor surfaces.

Conclusions:

In order to promote the health of older, experienced care home and hospice staff and encourage them to remain in employment, it is important that the physical environment of the care setting is designed in a way that meets their needs. Older staff should be included in decisions about the refurbishment and rebuilding of care environments.
External mirroring of inner chaos: blogging as experienced by the relatives of people with cancer
Authors: Andersson Maria , Gustafsson Elisabeth , Hansson Kristina , Karlsson Margareta
Published: May 2014

Background: Relatives of a person suffering from cancer risk being affected both physically and psychologically. Blogging has become increasingly popular as a forum for communicating experiences, but few studies have focused on what blogging about a relative’s cancer journey means to the author. Aim: To illuminate relatives’ experiences of blogging when a family member is in the end-of-life phase of cancer. Method: Telephone interviews were conducted with 12 people about their experiences of blogging during and after their family member’s illness. The data was analysed using qualitative content analysis. Findings: Blogging facilitated everyday life, introduced the relatives to new friends with similar experiences, helped them in their grief process, and helped them to preserve memories. The negative aspects were being misunderstood and publicly criticised as well as the feeling of providing readers with ‘reality show’ entertainment. Conclusion: Blogging was seen as a complement to professional care that contributed to the prevention of ill health.
General nurses' experiences of end-of-life care in the acute hospital setting: a literature review
Authors: McCourt Roisin , Power John James , Glackin Marie
Published: May 2014

Approximately 90% of the UK population spend some time in hospital in their final year of life, and more than half of the population die in hospital. This review aims to explore the experiences of general nurses when providing end-of-life care to patients in the acute hospital setting. Nine studies were identified through a literature search, and each was then analysed and evaluated until themes emerged. Six themes were drawn from the literature: lack of education and knowledge, lack of time with patients, barriers arising in the culture of the health-care setting, communication barriers, symptom management, and nurses’ personal issues. The themes cause concern about the quality of end-of-life care being provided in the acute care setting. The literature appears to be consistent in the view that terminally ill patients are best cared for in specialised care settings, such as palliative care units and hospices. However, increasing demands on health services will result in greater numbers of dying patients being admitted to the acute hospital setting. It is therefore paramount that general nurses’ educational needs are met to ensure they develop clinical competence to provide high-quality holistic end-of-life care.
How do nurses in specialist palliative care assess and manage breakthrough cancer pain? A multicentre study
Authors: Soden Katie , Ali Simone , Alloway Lara , Barclay David , Barker Stephanie , Bird Lydia , Hall Lesley , Perkins Paul
Published: May 2014

Objective: To gain a better understanding of how registered nurses working in specialist palliative care assess and manage breakthrough cancer pain.

Methods: A mixed-methodology study was undertaken in two stages—this paper reports findings from stage two. Anonymous postal questionnaires, designed based on themes identified in interviews undertaken during stage one, were sent to trained nurses working in ten specialist palliative care services in England.

Results: A total of 104 questionnaires were returned. Respondents were experienced nurses mainly working in inpatient settings. Some 82% of the nurses wanted more training on the assessment of breakthrough cancer pain. Although there were inconsistencies around the use of terminology, pain management appeared to be good.

Conclusion: The use of terminology in the field of breakthrough cancer pain remains variable. However, this does not appear to have a negative impact on patient management, which was broadly in line with recently published consensus recommendations. There is a desire for more education within this area of practice.
The development of a 7-day community specialist palliative care service
Authors: Gallagher Jennifer
Published: May 2014

The author worked as a clinical nurse specialist (CNS) in community palliative care in the Central Lancashire area of England when the CNS service was extended to a 9am-to-5pm 7-day service. A project group was set up to canvas some of the key stakeholders for their views on the extension of the service. The group undertook a literature search, a telephone survey of services in other areas that were providing this level of service, and interviews to ascertain the views of district nurses in the locality of the proposed service extension. The extension of service has long been advocated and was one of the key recommendations in the UK Department of Health's peer-review process. Such an extension was implemented following the research phase and was then evaluated by the project lead and the community services manager. The extension was found to be effective in the ongoing monitoring and support of patients. Anecdotally, the CNS team also felt it had been proactive in preventing unnecessary hospital admissions, although this specific aspect is difficult to quantify. This article looks at how the service was developed, how it has evolved over time, and how it works today. Consideration is also given to benefits and limitations.
Cancer pain in Jordan: prevalence and adequacy of treatment
Authors: Qadire Mohammad Al , Tubaishat Ahmad , Aljezawi Ma’en M
Published: May 2014

Background: Despite the introduction of numerous guidelines and pharmacological interventions to manage cancer pain, poor assessment and under-medication remain common. Aim: To estimate the prevalence of cancer pain and the adequacy of its management in Jordan. Method: A convenience sample of 162 cancer patients from two hospitals participated in a cross-sectional survey using an Arabic version of the Brief Pain Inventory-short form (BPI). Results: 73.3% of the patients had pain severe enough to merit rating on the BPI. The mean of the worst pain scores in the past 24 hours was high at 7.5 out of 10 (standard deviation (SD) 2.7). 31% of patients with pain had not been treated for their pain, and the mean Pain Management Index score was −1.20 (SD 1.0). Conclusion: These cancer patients were experiencing high levels of pain, which was undertreated. Providing adequate pain management is a priority, hence more education, training, and resources are needed in Jordan to reduce cancer patients’ suffering.
An evaluation of the activity of a 7-day, nurse-led specialist palliative care service in an acute district general hospital
Authors: Hall Sally , Thompson Jo , Davies Andrew
Published: May 2014

Introduction: This report describes the activity of a new 7-day-per-week, nurse-led palliative care service in an acute district general hospital in the UK. Methods: The service is based in a hospital with an integral cancer centre. On the weekends, one clinical nurse specialist (CNS) is present within the hospital, with a consultant providing telephone support. The data for this report was obtained by reviewing the team’s clinical database and the patients’ individual clinical assessments. Results: During the first year, the CNSs undertook 651 face-to-face weekend consultations. Overall, 25% of the total consultations and 18% of new patient consultations were undertaken on the weekends. The primary reasons for reviewing patients on the weekends were pain (46%), other symptoms (27.5%), and patient on the Liverpool Care Pathway (17%). Overall, 23% of new patients died over the weekend or in the early hours of the Monday morning. Conclusions: This service evaluation provides evidence of the value of having a 7-day-per-week palliative care service in an acute district general hospital.
End-of-life care in neurodegenerative conditions: outcomes of a specialist palliative neurology service
Authors: Hussain Jamilla , Adams Debi , Campbell Colin
Published: May 2014

Background

People with advanced neurological conditions (ANCs) face complex problems and needs that are often unrecognised and undertreated. Their last year of life may be characterised by unplanned hospital admissions and an unexpected death. A National End-of-Life Care Programme (NEoLCP) 2010 framework made recommendations to aid timely and appropriate end-of-life care for people with ANCs.

Objectives

Assessment of key outcomes of a UK nurse-led palliative neurology service against the NEoLCP standards.

Method

A retrospective study of clinical records of patients who died from an ANC under the care of the service from December 2006 to April 2012.

Results

All 62 patients had multidisciplinary care coordinated by a key worker—a clinical nurse specialist (CNS) in palliative neurology. Mental capacity was assessed in 95% of cases, of which 95% had a documented advance care plan or best interest decision. The CNS had specific input regarding carer distress in 77% of cases. Mean hospital admissions were 0.9 per patient in the last year of life, compared with 3.5 nationally across all diagnoses. The service demonstrated better outcomes in other key areas, including place of death, with more patients dying at home or in the hospice compared with national figures.

Conclusion

This service model fulfils key NEoLCP recommendations, as well as resulting in low hospital admissions and deaths.
Missed opportunities: a case study of barriers to the delivery of palliative care on neonatal intensive care units
Authors: Martin Melissa
Published: May 2014

Despite clear guidance from the Royal College of Paediatrics and Child Heath and Together for Short Lives, among others, the delivery of palliative care remains inconsistent on neonatal intensive care units, with many infants receiving full intensive care measures until the final moments of their lives. This case study identifies barriers faced by members of the neonatal team: fear of respiratory depression surrounding opiate use at the end of life, conflict among members of the care team leading to moral distress, and inadequate training and support for staff, which can inhibit the full transition to a palliative care framework at the end of life. Recommendations from the literature are collated to address these barriers. Training programmes for staff covering the tenets of palliative care, including symptom management, analgesic use, and communication skills, as well as regular multidisciplinary forums and debriefings are necessary to improve the care provided to infants and their families where there is a palliative care need.
The media critique of the Liverpool Care Pathway: some implications for nursing education
Authors: Watts Tessa
Published: May 2014

End-of-life care pathways are championed around the globe as tools that might be used to enhance the quality of care at the very end of a person's life. This paper examines recent negative media discourse in the UK about the Liverpool Care Pathway for the Dying Patient (LCP). This media coverage may have had damaging effects, but it has also served to highlight inappropriate and even suboptimal end-of-life care. While recognising the pervading influence of organisational structures and cultures, some implications for initial and ongoing education of nurses are identified.
Managing complex palliative wounds: an interactive educational approach for district nurses
Authors: Willis Shirley , Sutton Joanne
Published: May 2014

Complex palliative wounds, although uncommon, are extremely distressing for patients because of their associated symptoms. Managing these symptoms presents significant challenges to clinicians. As the majority of these patients will be managed at home, district nurses will be the main providers of care. The quality of the literature in this field is limited due to the small number of patients presenting with these wounds and the difficulties associated with researching issues within palliative care. However, the literature available identifies that community nurses would value greater education in managing these wounds because the accepted wound healing theories and management strategies do not apply. This underpins the rationale for developing an educational resource to provide district nurses with current, evidence-based information to support their wound-management decisions in caring for this patient group. This paper reports the development, through an action research work-based project, of such an interactive educational package.
Breakthrough cancer pain: the role of the nurse
Authors: Buchanan Alison , Davies Andrew , Geerling Jenske
Published: May 2014

Breakthrough pain is common in patients with cancer and is a significant cause of morbidity in this group of patients. Breakthrough pain is a heterogeneous condition, and so its management needs to be individualised. This paper describes the management of breakthrough pain and, specifically, the recently published guidelines of the European Oncology Nursing Society.
Perinatal palliative care: a developing specialty
Authors: Kiman Rut , Doumic Lara
Published: May 2014

Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on perinatal palliative care and its impact on babies and families along their journey. End-of-life decision-making for babies with an adverse prognosis also remains ethically challenging. This paper provides an overview of perinatal palliative care and its development, and then considers some of the issues affecting this field by looking at single national, institutional, and patient case studies.
Sharing the care: the key-working experiences of professionals and the parents of life-limited children
Authors: Rodriguez Alison , King Nigel
Published: May 2014

Aims:

To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC).

Method:

Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs.

Findings:

Parents' expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts.

Conclusions:

The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family ‘team’ arrangements.
Preoperative education: empowering patients with confidence
Authors: Spalding Nicola J
Published: May 2014

Preoperative education is widely used by health-care professionals all over the world to help patients to prepare for their impending surgery and postoperative needs. The focus of this research was a multidisciplinary preoperative education programme provided in one UK NHS trust for patients awaiting a total hip replacement. The purpose of this research was to gain an understanding of how the preoperative education process achieves beneficial health and wellbeing outcomes proven in previous research. This article reports on one of the themes which arose from the data; namely the beneficial outcome of empowering patients.

A case study enabled the researcher and the health-care professionals who provided preoperative education to understand the role of the educational process in empowering patients. It appeared that the educational product and processes enabled patients to gain confidence, which empowered them to prepare for a total hip replacement.
Rehabilitation goals identified by inpatients with cancer using the COPM
Authors: Watterson Julie , Lowrie Daniel , Vockins Helen , Ewer-Smith Charlie , Cooper Jill
Published: May 2014

The purpose of this study was to investigate the rehabilitation goals of inpatients with cancer. The Canadian Occupational Performance Measure (COPM) was used with 90 inpatients in a cancer rehabilitation centre to identify rehabilitation goals and their level of importance. These goals were divided into the occupational performance categories of self-care, productivity and leisure.

Results showed that 65% of goals were related to self-care, 20% to leisure and 15% to productivity. Self-care, leisure and productivity goals were attributed similar importance ratings by the study subjects, with average scores being 8.66, 8.21 and 8.81 respectively (on a scale of 1–10, with 10 being of highest importance).

The authors conclude that these findings have important implications for therapists and managers working in cancer rehabilitation who are responsible for the provision of a holistic, client-led service.
The social and technological history of wheelchairs
Authors: Woods Brian , Watson Nick
Published: May 2014

This article presents some early findings from research commissioned by the UK Economic and Social Research Council on the social history and technological development of wheelchairs during the 20th century. The goal here is not to provide a definitive history of wheelchairs, but rather to further an understanding of wheelchair innovation through historical analysis. In providing an insight into the history of wheelchair developments, the article aims to draw attention to the idea that innovation is not simply a technical matter, but that technological artefacts are closely entwined with the social, political and historical conditions of their making.
Occupational therapy for people with osteoarthritis: Scope of practice and evidence base
Authors: Grant Mary
Published: May 2014

Literature linking osteoarthritis and occupational therapy is limited and largely descriptive in nature. Existing research studies tend to focus on splinting the arthritic hand, rehabilitation following joint replacement and the provision of assistive devices.

The purpose of this study was to explore the scope of occupational therapy practice for people who have osteoarthritis and the nature and source of evidence for its effectiveness. A small-scale exploratory study, using qualitative interviews as a method of data collection, was carried out with ten occupational therapists working in rheumatology, orthopaedics, hand therapy, primary care and social services settings. Interviews were transcribed verbatim and content analysis performed on the data generated.

Findings indicated a broader, more holistic scope of practice than the existing literature suggests and a limited evidence base to support effectiveness. Specific ideas for future research in the area evolved from the data, which provide a springboard for much needed evaluation research in this field.
Effect of two seating positions on upper limb function in normal subjects
Authors: Gandavadi Amar , Ramsay Jill
Published: May 2014

Many upper limb functions are performed in a sitting position. However, if seating is inadequate and poorly designed, back pain and reduced upper limb control may result. This study investigates pelvic posture and performance in an upper limb task.

In total, 15 normal healthy volunteers (aged 18–30 years) were seated in posterior and anterior pelvic tilt positions and performed a simple upper limb task. The parameters measured were electromyography of the lumbar paravertebral muscles, time taken to complete the task and the task error rate. The data were analysed by repeated measures analysis of variance (ANOVA) and post-hoc t tests. The results indicate that, when seated in an anterior pelvic tilt position, the error rate decreased (P=0.013) and the electrical activity increased (P=0.008). The time taken to complete the task was not significantly different.

Since the error rate decreased when seated in the anterior pelvic tilt position, it might be concluded that this posture facilitated task skill. It is suggested that the increase in electrical activity is related to the increased load on the lumbar muscles in maintaining the posture. This study's generalizability is limited, with small subject numbers and the use of a non-functional task. It is, however, a beginning in addressing the interrelationship between the seated posture and skilled upper limb performance.
Assistant practitioners: Issues of accountability, delegation and competence
Authors: Mackey Hazel , Nancarrow Susan
Published: May 2014

The NHS Modernisation Agenda, alongside workforce shortages in health-care professions, has led to increasing interest in the role of assistant practitioners in the delivery of health and social care. This article describes the introduction and evaluation of assistant practitioners in occupational therapy who were empowered to work independently in a limited number of interventions and services within an NHS trust. The evaluation involved focus groups with four groups of key stakeholders: the assistant practitioners, their supervisors, managers and service users. Key themes included ambiguity about who takes responsibility for the outcomes of care and uncertainty about challenging the role of the ‘professional’ staff. There was a lack of clarity about how work is ‘delegated’ to the assistant practitioners and it was difficult to determine levels of competence in the new workers, because the existing staff did not recognize their qualifications. These issues need to be addressed in order to optimize the relationships between staff, clarify the roles of team members and ensure that service users receive the most appropriate care from the most appropriate practitioner.

The evaluation involved focus groups with four groups of key stakeholders: the assistant practitioners, their supervisors, managers and service users. Key themes included ambiguity about who takes responsibility for the outcomes of care and uncertainty about challenging the role of the ‘professional’ staff. There was a lack of clarity about how work is ‘delegated’ to the assistant practitioners and it was difficult to determine levels of competence in the new workers, because the existing staff did not recognize their qualifications.

These issues need to be addressed in order to optimize the relationships between staff, clarify the roles of team members and ensure that service users receive the most appropriate care from the most appropriate practitioner
Health professionals' views on services for patients with cancer-related palliative care needs
Authors: Thomson Margaret , Hourston Paula , Ladley Jo , Findlay Leigh , Kelly Aileen
Published: May 2014

The purpose of this article is to describe the work undertaken by a multiprofessional palliative care research team. The team explored the views of allied health professionals (AHPs) on issues, barriers, good practice and options in achieving quality, equity and appropriate access to AHP services for patients with cancer-related palliative care needs. Three workshops were carried out in the west of Scotland to ascertain views of AHPs. These were followed by a postal questionnaire to validate the analysis of the workshops content.

To improve the quality, equity and access to AHP services for patients with cancer-related palliative care needs, participants suggested that perceived barriers in awareness, communication, resources, education and service delivery need to be addressed. AHPs currently are working on developing practice and guidelines; however, a review of levels of staffing is perceived as essential to allow AHPs to achieve strategic goals.
A review of Days Healthcare wheelchair seating products and their application
Authors: Turner Christine
Published: May 2014

This article aims to help readers to make the right choices when prescribing seating products. While it is possible to learn about the evaluation process from a theoretical perspective, there is never a substitute for hands-on experience. When evaluating the suitability of a product for a client, detailed assessment should consider his or her postural management needs as well as the risk of tissue breakdown.

There are many risk factors and while some people suffer tissue trauma principally as a result of pressure, others may suffer as a consequence of shear or moisture-induced maceration. Therefore, there is no one cushion that is likely to be appropriate for all high-risk situations and it is very challenging to successfully categorize seating products as ‘high risk, medium risk or low risk’. The assessment of postural management needs is also very complex and a user's functional independence can be significantly affected by his or her ergonomic position in relation to the wheelchair.

Days Healthcare offers a range of pressure-relieving wheelchair cushions for people at risk of developing pressure sores. The products also improve postural positioning, thus providing for enhanced comfort and ergonomic functioning.
Preventing 'burnout'
Authors: Hong Chia Swee
Published: May 2014

I was recently asked, as an occupational therapist working with people who have disabilities, if I got ‘burnt out’. My spontaneous reply was: ‘Of course, not. We are professionals and we know when and how to help handicapped people.’
Therapeutic standing for people with multiple sclerosis:
Authors: Baker Karen , Cassidy Elizabeth , Rone-Adams Shari
Published: May 2014

The purpose of this pilot study was to assess the feasibility and efficacy of a daily standing programme in the community for subjects with multiple sclerosis (MS).

A single blind randomized crossover design was used. There were two interventions; daily standing in a standing frame for 30 minutes and a daily exercise programme. Interventions were sequential and crossed after 3 weeks. The primary outcome measures were the Ashworth scale, spasm frequency scale and range of movement. Subjects consisted of six individuals with a diagnosis of secondary progressive MS.

Statistically significant improvements were demonstrated in hip and ankle range of movement with standing when compared to the exercise phase for both groups. No significant differences in spasticity or spasm were found although a downward trend was seen.

All subjects achieved 30 minutes of therapeutic standing. Three subjects achieved 30 minutes standing after building up tolerance over the 3-week intervention period.

In conclusion therapeutic standing increased range of movement in wheelchair dependent subjects. Further examination of the immediate and long-term effects of standing on spasm and spasticity is warranted.
Developing clinical expertise for healthcare professionals through masters courses
Authors: Rushton Alison , Lindsay Geoff
Published: May 2014

This paper identifies a gap in the existing literature surrounding the role of masters postgraduate courses in developing clinical expertise, and through use of survey methodology describes the characteristics of existing courses.

Quantitative and qualitative data were combined through the use of a questionnaire to a total population sample (n=171) of course tutors of masters courses in healthcare. A very good response rate (n=148, 86.5%) found 89% (n=132) of courses aiming to develop clinical expertise. As a means of developing expertise, greatest emphasis was placed on the theoretical components of a course (90%, n=120), with a similar emphasis on clinical placement (38.6%, n=51) and mentorship (46.2%, n=61). Approaches were similar across professions except for the use of placements where a significant difference existed (x2 [132,2] = 25.173, P<0.05) with more allied health professional courses using placements compared to nursing or interprofessional courses.

Saturation of the qualitative data was achieved highlighting themes reflective of the different means of developing expertise. The study had good external validity and can therefore be used as the basis for future work.
Suitable moving and handling equipment: A guide
Authors: Fernandes Tanya
Published: May 2014

Carers and nursing staff involved in manual handling activities are more likely to suffer from workrelated injuries, such as back pain. The employment of assistive equipment such as hoists, profiling beds and transfer boards can, however, minimize these risks and create a safer working environment for the carer and the cared for.

This article will focus on guidance and legislation related to the minimization of work-related injuries and will highlight some of the different products available on the market to assist with activities involving the lifting and/or transferring of patients.