bluuebunny/crossref_metadata_2025 huggingface dataset:
Learning to live with childhood cancer: a literature review of the parental perspective
Authors: Neil Louise , Clarke Sonya
Published: May 2014

This article presents an analysis of literature on paternal and maternal development and resilience through the experience of having a child diagnosed, treated, and possibly die from cancer. The methods and analysis of findings from research conducted in this area are assessed, as are the data’s relevance and implications for practice. The review required an in-depth search of relevant health-care databases using appropriate search terms. Findings were then culled and analysed based on the inclusion and exclusion criteria, and two papers were deemed appropriate for selection. Four contrasting themes emerged from each article. It was generally acknowledged that mothers and fathers enduring such an experience stated that changes occurred in their lives. The mothers felt a need to become tougher for their child and family, and the fathers recognized a need to focus quickly on what needed to be done to treat their child’s illness. However, analytically the differences in each paper are vast. The research was conducted in Japan and the United States, where contrasting cultural and societal beliefs and influences are apparent, therefore inadvertently affecting the research findings. Furthermore, a gap in research in this area has been detected, and much more research specifically focused on this subject is required if the children’s nurse is to provide evidence-based holistic care in this area on a continual basis.
Book Review
Authors: Smyth Dion , Larkin Philip J
Published: May 2014

John Keats, with Percy Bysshe Shelley and Lord Byron, was one of the prominent poets of what came to be known as the 19th century’s romantic movement. After a relatively short life, producing poetry that was critically disliked at the time, he died aged 25 of what we now know was tuberculosis. Keats’ death was possibly characterized by the then limitations of medical opinion, judgement and knowledge—the consumption, or tuberculosis, he suffered from was diagnosed late after several months of being treated for ‘stress and an ailment of the stomach’. Equally, the then treatment—bleeding and starvation—would have contributed to the progressive weakening of Keats constitution and his ultimate and untimely death. The doctor attending to Keats declined to give Keats laudanum (an archaic term for opium/morphine) for the relief of his pain and anguish to the extent that Keats demanded how long his ‘posthumous existence’ would go on. For many, this ‘Keatsian experience’ has come to symbolize the prolonged end of life suffering that need not be endured in contemporary care settings.
A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases
Authors: Janssen Daisy JA , Spruit Martijn A , Alsemgeest Ton PG , Does Joan D , Schols Jos MGA , Wouters Emiel FM
Published: May 2014

Palliative care should be part of integrated care for patients with end-stage respiratory diseases. An intensive inpatient interdisciplinary palliative care programme has been developed for patients with end-stage respiratory diseases in the Netherlands. This programme consists of the management of daily symptoms and care needs to support patients and their families, and maintain or improve quality of life of these patients and their loved ones. This article presents case studies which describe the clinical course and management of three patients admitted to the programme: a 77-year-old woman who died from chronic obstructive pulmonary disease (COPD); a 60-year-old woman with end-stage COPD who improved her daily functioning and was discharged home after 3 months; and a 74-year-old woman who died of pulmonary fibrosis. This article describes the characteristics of the programme and shows the possible benefits of an intensive patient-centred interdisciplinary palliative care programme for patients with end-stage respiratory diseases. Palliative care programmes can be the final step in the chain of care for patients with respiratory diseases. Further research is necessary to study whether, and to what extent, a patient-centred interdisciplinary palliative care programme for end-stage respiratory diseases may improve health status, daily symptom burden, patient satisfaction and quality of dying.
How much compassion have I left? An exploration of occupational stress among children’s palliative care nurses
Authors: McCloskey Sharon , Taggart Laurence
Published: May 2014

Nursing is a stressful occupation. While children’s palliative care nurses encounter many of the stressors in common with other nurses, this unique context of care generates specific aspects of stress that warrant further examination. This qualitative study explores the experiences of stress in nurses providing children’s palliative care in one region of the UK. In total, four focus groups took place with children’s hospice nurses, community children’s nurses and children’s nurse specialists based in the regional children’s hospital. The focus groups were taped, transcribed and analysed through the application of Newell and Burnard’s thematic content analysis methodology. Four core themes emerged: work demands; relationships, maintaining control, and support and roles. Of particular note were stressors associated with the sub-themes of relationships, emotional demands and ethical conflicts. Conclusions illustrating how individuals and organizations may reduce the impact of stress in nurses contributing to the palliative care of children and their families are made.
Contextualizing end-of-life care for ageing veterans: family members’ thoughts
Authors: Gibson Maggie , Gorman Eunice
Published: May 2014

Family members are integral partners in care in a long-term care facility that serves Canadian war veterans. Accordingly, when end-of-life care (a loosely defined concept focused on the end-stages of life for elderly, chronically ill facility residents) was targeted as a strategic priority for continuous quality improvement, family members were invited to contribute their perspectives through focus groups. Two facilitated sessions were attended by eight spouses and daughters of facility residents. Familiar themes-impact on family, ongoing care issues, end-of-life care issues, where to die, and bereavement-were represented in the discussions, nuanced by the unique context of long-term care residency and veteran status. The findings highlight the importance of adapting generic palliative care recommendations to distinct service environments and cohorts for implementation.
Dying means suffocating: perceptions of people living with severe COPD facing the end of life
Authors: Hall Sylvie , Legault Alan , Côté José
Published: May 2014

Aim: The purpose of this research was to describe the perceptions of people living with severe chronic obstructive pulmonary disease (COPD) with respect to the end of life. Method: For this descriptive exploratory qualitative study, semi-structured interviews were conducted with six participants suffering from severe COPD hospitalized in the past year following an exacerbation episode. The data were analyzed using the method developed by Miles and Huberman (2003), which comprises three main steps: data reduction, data display, and conclusion drawing/verification. Results: The analysis yielded four themes that reflect the perceptions of participants with respect to the end of life, namely: living and seeing oneself decline, living and preparing to die, dying of COPD means suffocating, and dying in hospital surrounded by family and friends. What emerges from the study is that persons living with severe COPD wish to die without suffocating, in hospital, surrounded by family and friends, all the while hoping to go on living. Conclusion: This study contributes to a more comprehensive understanding of the end-of-life experience. It shows the importance of accompanying these persons properly towards the end of life and at the moment of dying. The study proposes a series of avenues for future research and makes recommendations for practice.
Multidisciplinary palliative care teams' understanding of Mental Capacity Act 2005 ‘best interest’ determinations
Authors: Harris Denise , Fineberg Iris Cohen
Published: May 2014

Aim:

To explore multidisciplinary palliative care teams' implementation of the concept of ‘best interests’ as stated in the Mental Capacity Act 2005 (MCA).

Background:

The MCA for England and Wales provides a statutory framework to protect people who are unable to make their own decisions. No previous research has tackled the specific aim of this investigation.

Method:

Qualitative research methods were used to interview professionals from two multidisciplinary palliative care teams. The interviews were audio-recorded and thematically analysed.

Results:

Participants reported that the best interests concept is part of their daily practice, but they had limited understanding of the MCA formulation of best interests. Team location influences the setting and process of best interests decision making.

Conclusion:

Palliative care professionals' process of considering their patients' best interests may not directly refect the specifc guidance of the MCA.
Analysis of a network-wide specialist palliative care out-of-hours advice and support line: a model for the future
Authors: Plummer Sue , Allan Rebecca
Published: May 2014

Introduction: Recently the palliative care literature has emphasized the need for 24-hour telephone advice and support for patients during the last year of life. As some health professionals may lack skills and knowledge regarding palliative care issues, an out-of-hours (OoH) advice line is considered a valuable resource. This report provides an analysis of both qualitative and quantative data concerning the Mount Vernon Cancer Network telephone advice line (TAL) for 2008–2010. Method: Data relating to the use of the TAL during OoH periods was collated and analysed on an annual basis. Data collected from a caller questionnaire relating to patient outcome, experience, and caller satisfaction was also evaluated. Results: The number of calls to the OoH TAL increased by 13% over the 3-year period. The primary reason for the calls was symptom management, and 79% were made by patients’ relatives. From the questionnaire responses, 66% of callers appeared to have a high rate of satisfaction, and 67% of patients were not admitted to hospital. Conclusions: It appears that the advice line is providing a highly valued service, with calls being managed by experienced nurses. Increasingly, local commissioners are placing greater emphasis on supporting care at home and reducing unnecessary hospital admissions, and advice lines seem to be an effective way of facilitating this.
Improving practice using action research: resolving the problem of kinking with non-metal cannulae
Authors: Griffith Sue
Published: May 2014

In one UK hospice, inpatient unit records showed that over 8 years 12 needlestick injuries related to continuous subcutaneous infusion of medication occurred. Following a change-over to Teflon cannulae no further incidents were reported. However, when the more sensitive and accurate McKinley T34 syringe drivers were introduced in 2007 a new problem of recurrent occlusion alarm sounding manifested. Investigation revealed that the Teflon cannulae were often kinking, delaying medication delivery and necessitating re-siting of the cannula. The action research approach was used to find an alternative device to improve practice and ensure that both staff and patients were safeguarded. This paper explains how that process was followed until a satisfactory alternative was sourced and evidenced, including an account of the problems that were experienced along the way.
Identifying, documenting, and reviewing preferred place of death: an audit of one UK hospice
Authors: Walker Susan , Read Sue , Priest Helena
Published: May 2014

Background: Current UK health-care policy suggests that good end-of-life care includes choosing a place for death. This paper examines the extent to which patients’ preferred place of death (PPD) is identified, documented, and reviewed in one UK hospice. Method: A total of150 case notes were audited using a data capture form. Case notes of patients who died in January 2008 (n=50), January 2009 (n=50), and January 2010 (n=50) were accessed during September-November 2010. The data are presented using descriptive statistics. Results: PPD was documented in 28 cases (18.6%), conversations about end-of-life preferences were documented in 16 cases (10.6%), and preferences were reviewed in 6 cases (4%). Of the 28 patients whose preferences were documented, 25 (89.2%) died in their stated place of choice. Conclusions: Rates of PPD identification, documentation, and review were low at this hospice. This raises further research questions about how and why end-of-life choices are being made.
Reflections on lymphoedema, fungating wounds and the power of touch in the last weeks of life
Authors: Fenton Suzy
Published: May 2014

Terminal care is a significant chapter of life in which each individual has the right to expect dignity, compassion, holistic care, and quality of life. The case of ‘Sally', a 57-year-old woman with a diagnosis of inflammatory breast cancer, left arm lymphoedema, and a fungating chest wound, gave palliative care nurses a multitude of distressing and complex challenges to manage. Management of lymphoedema is often put into the ‘too hard basket', especially in the palliative care setting. Similarly, fungating wounds are hard to confront, and the power of touch is often underestimated. The aim of this case study is to explore and refect on how these issues entwine, and how vital it is for nurses to feel comfortable in providing the most appropriate care. As a result of refection on Sally's care management many issues were highlighted, including the crucial need to relieve her symptoms with timely, appropriate, dignified, and respectful care, optimizing her sense of worth and quality of life.
Hard choices: a qualitative study of influences on the treatment decisions made by advanced lung cancer patients
Authors: Thornton M , Parry M , Gill P , Mead D , Macbeth F
Published: May 2014

Objective:

Most patients with non-small cell lung cancer (NSCLC) present with an incurable, advanced disease, and treatment decisions may be hard. This study explored the factors that influence patients' choice of treatment during the oncologist–patient consultation.

Design:

Semi-structured interviews conducted within 1 month of a consultation with an oncologist.

Participants:

Five patients newly diagnosed with incurable NSCLC and facing a treatment decision following a consultation with an oncologist.

Setting:

A regional oncology unit in the UK.

Results:

Some of the participants who opted for chemotherapy had made a decision before seeing the oncologist, presented with fewer symptoms, had been more active in seeking information before the consultation, and were willing to accept the risk of side effects. Participants opting for radiotherapy were not willing to accept the risk of side effects for the possibility of a small survival gain and instead focused on symptom relief.

Conclusion:

Some participants sought information before the consultation from various formal and informal sources. This may undermine the oncologist–patient consultation as the information may be incomplete or inaccurate. Patients vary in their willingness to accept risks for small potential gains. More research is required into methods to communicate the extent of the risks of treatment. The Clinical Nurse Specialist performed a valuable role for the patients and was seen as a trusted source of information.
Supporting dignified dying in the Philippines
Authors: Doorenbos Ardith Z. , Perrin Margot E. , Eaton Linda , Abaquin Carmencita , Balabagno Araceli O. , Rue Tessa , Ramos Rita
Published: May 2014

Purpose: This study aimed to assess the appropriateness of the International Classification for Nursing Practice (ICNP) Palliative Care for Dignified Dying catalogue for palliative nursing in the Philippines.

Methods: The study recruited 230 nurses to complete the ICNP Dignified Dying survey. Participants rated ICNP nursing intervention items and identified additional interventions for promoting dignified dying.

Results: All of the intervention items were scored on average as being at least ‘slightly important’. The three top-ranked nursing intervention categories were providing social support, maintaining privacy boundaries, and relieving psychological distress.

Conclusions: The ICNP Palliative Care for Dignified Dying catalogue lists nursing interventions that are appropriate to promoting dignity at the end of life in the Philippines.
Forgotten grievers: an exploration of the grief experiences of bereaved grandparents
Authors: Gilrane-McGarry Ursula , O’Grady Tom
Published: May 2014

Aim: Current knowledge about bereavement has been derived mostly from the experiences of spouses, parents, and children. There is a paucity of studies on the grief of grandparents. The aims of this Irish national study were to identify and describe the bereavement experiences of grandparents following the death of a grandchild and to explore their needs and supports throughout this experience. A qualitative exploratory descriptive design was employed. Method: A multi-pronged sampling strategy was adopted. Seventeen people participated in in-depth interviews. The data was subjected to thematic field analysis through NVivo. Results: The small body of literature generally claims that grandparents experience ‘double pain’, meaning that they concurrently experience feelings of loss for their grandchild and pain associated with their own child's grief. However, this study found that grandparents experience ‘cumulative pain’. That is, in addition to double pain, they also experience pain from other sources. Conclusion: There is a need for the complexity and intensity of the grief felt by bereaved grandparents to be recognized, acknowledged, and supported by health professionals and society in general.
Nurses’ participation in the end-of-life — process in two paediatric intensive care units in Brazil
Authors: Lago Patrícia M , Nilson Cristine , Piva Jefferson Pedro , Halal Michel Georges , Carvalho Abib Gilda Maria de , Garcia Pedro Celiny R , Vieira Ana Cláudia
Published: May 2014

The aim of this study was to evaluate the medical and nursing care provided to children in the last 24 hours of life in two Brazilian paediatric intensive care units and analyse the nurses’ participation in the decision-making process for life support limitation (LSL). The study was based on an analysis of the patients’ medical charts, looking at the medical and nursing care provided in the last 24 hours of life during a 6-month period in the two units, and on semi-structured interviews with 20 nurses to evaluate their participation in LSL decisions. The children were classified into two groups: those who were to receive full cardiopulmonary resuscitation (CPR) and a non-CPR group. A total of 34 deaths occurred during the study period. Of these, 17 (50%) were children that had been in the non-CPR group; there were only 10 recorded LSL plans in their medical charts. In the interviews, only 30% of the nurses mentioned active participation in LSL decisions. In conclusion, the paediatric intensive care nurses in these two Brazilian units did not participate much in LSL decisions, and the care offered in the last hours of life to children with terminal and irreversible illness was not primarily directed toward comfort and alleviating suffering.
A guide to the use and care of vascular access devices in the palliative care setting
Authors: Kelly Linda J
Published: May 2014

There has been a steady increase in the number and range of vascular access devices used in all areas of health care. With this increase there comes a requirement that health professionals dealing with these devices be aware of the range available, indications for use, and the most up to date guidance on the care and maintenance procedures. Care of the device is paramount to preventing complications. This article provides an overview of the types of venous access devices that may be encountered when a patient is transferred to palliative care services, as well as of the procedures for routine maintenance.
Constipation management in palliative care: treatments and the potential of independent nurse prescribing
Authors: Andrews Amanda , Morgan Gwyneth
Published: May 2014

Constipation is a common symptom in palliative care patients that can generate considerable suffering owing to both the inherent physical discomfort and the attendant psychological issues such as embarrassment. This article considers the management of constipation for palliative care patients, including the importance of the patient's own definition of their problem, the need for thorough and frequent assessment, established treatment options, and the challenges that nurses may face. It provides a simple algorithm to assist in the management process, and also looks at the current strength of the evidence base for two more recent therapies. Finally, it examines the potential of the independent nurse prescriber (INP) for constipation management in the UK, using a brief case study to illustrate a commonly experienced constipation management scenario for the INP in the community setting.
Gender differences in 1-year survival rates after weight loss in people with idiopathic Parkinson's disease
Authors: Walker Richard W , Gray William K , Davidson Matthew RI
Published: May 2014

Background: Under-nutrition is a recognized non-motor symptom of Parkinson's disease (PD). The aim of this retrospective study was to conduct an audit of recorded weight loss prior to death in people with PD and to identify whether weight loss was a predictor of death. Methods: An audit of the medical records of people with PD was conducted. Patients were included if they were under the care of the North Tyneside General Hospital PD team, had a diagnosis of idiopathic PD, and died between 1 January 2008 and 31 December 2010. To assess whether there was a significant association between clinically significant weight loss and mortality, values of 5% and 10% weight loss from earliest available post-diagnosis baseline assessment were chosen as cut-offs. Results: Data were available on 55 patients. Although females were more likely to have 10% weight loss than men, the difference was not significant. The odds of a female with weight loss surviving beyond 1 year were 23.4 (95% confidence interval (CI) 3.9–139.9) times better than those of a male for 5% weight loss and 10.0 (95% CI 1.8–55.6) times better than those of a male for 10% weight loss. These results were significant. Conclusions: Outcomes for males with PD who have clinically important weight loss are poorer than for females. Nurses and other health workers should be aware of the need to monitor weight in people with PD.
Nurses’ nonverbal methods of communicating with patients in the terminal phase
Authors: Kozłowska Lena , Doboszyńska Anna
Published: May 2014

Aim: The aim of this study was to ascertain what methods of communication nurses use during interactions with patients nearing the end of their lives, with a particular focus on nonverbal communication. Methodology: A questionnaire containing 24 questions was completed by 95 nurses working in one of five hospices in Poland. Results: A total of 48% of the sample reported frequently using nonverbal communication consciously and with a certain aim, and a further 37 (39%) reported that they sometimes use it. The sample's responses indicate that for patients the best form of touch is holding hands. In addition, 63% of the respondents stated that they had been educated in communicating with palliative care patients, but only 56% thought that nurses’ communication knowledge and skills were satisfactory, and 50% would like to undergo training in communication skills specific to palliative care. Conclusion: Most nurses are aware of the importance of nonverbal communication to their interactions with palliative care patients, but a substantial proportion think that they need to be better educated in theoretical and practical aspects of communication.
Pressure ulceration and palliative care: prevention, treatment, policy and outcomes
Authors: Stephen-Haynes Jackie
Published: May 2014

Pressure ulcer development and management have particular significance in palliative and end-of-life care owing to the prevalence of mobility issues and the skin changes that can occur with ageing, chronic illness, and at the end of life. Hence, it is important for nurses working in palliative care to be vigilant for pressure ulcer development and to possess knowledge relating to the prevention and management of pressure ulceration. This article considers current UK policy regarding pressure ulcers, highlighting contradictions of relevance to patients requiring palliative care. It then provides a brief overview of pressure ulcer prevention, prescription, preservation, and palliation, highlighting areas of specific consideration to pressure ulcer care within palliative care.
Developing competencies and training to enable senior nurses to take on full responsibility for DNACPR processes
Authors: Booth Michele , Courtnell Tracey
Published: May 2014

There is currently great interest and activity around the development of do not attempt cardiopulmonary resuscitation (DNACPR) policies in health and social care. This paper describes how South Central Strategic Health Authority (SHA) in the UK underwent a process of agreeing a competency framework and devising an accompanying training course to enable senior nurses to be decision makers and signatories for DNACPR forms. The competencies that were agreed are presented, along with an exploration of the benefits of nurses completing DNACPR forms, including a costing of apparent financial benefits. With the restructuring of SHAs on the horizon it is important to share practice development in order to avoid duplication of effort.
Application of the M technique to two severely disabled children in Belarus
Authors: Rickerby Karla Breen , Cordell Barbara
Published: May 2014

Following the early-morning explosion of reactor four at the Chernobyl nuclear plant on 26 April 1986, radioactive fallout fell over 80% of Belarus. More than 2.2 million people were affected, including thousands of children. As a result, there are now over 50 000 children in 600 orphanages in Belarus. Many of the orphanages are without basic amenities and are operating in dire circumstances. This article outlines two case studies of orphaned children with profound disabilities in one of these orphanages. The first author, a nurse volunteer from Ireland, used a method of touch called the ‘M technique’ to calm and soothe the children. The M technique is a gentle repetitive method of touch that can be learnt in a few hours. The results suggest that even when the situation appears very challenging, simple touch can have a beneficial effect.
Attitudes regarding life-sustaining measures in people born in Japan, China, and Vietnam and living in Texas
Authors: Duke Gloria
Published: May 2014

Cultural beliefs about and preferences for care at the end of life are diverse and unique in many respects. This descriptive qualitative study presents findings about the attitudes and preferences of people born in Japan, China, and Vietnam and living in the southern part of the USA regarding life-sustaining measures. In-depth personal and focus group interviews were conducted with 46 participants and thematic analysis completed. The findings reflected some similarities and differences among the three groups concerning initiation and discontinuance of artificial nutrition and mechanical ventilation. They also demonstrated the requirement for sensitivity to individual needs when honouring the wishes of patients and surrogate decision makers. Interventional studies should follow that test educational strategies to improve practice outcomes for health-care providers who care for these populations at this vulnerable time of life.
Facilitating advance care planning in community palliative care: conversation starters across the client journey
Authors: Blackford Jeanine , Street Annette F
Published: May 2014

This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.
The experiences of patients undergoing blood transfusion in a day hospice
Authors: Orme Jacquie , Still Duncan , Day Rebecca , Evans Joanne , Perkins Paul
Published: May 2014

Aim

To explore patients' views on living with anaemia and undergoing blood transfusions in a day hospice.

Methods

This was a qualitative study using semi-structured interviews. Ten patients who between them had received 90 transfusions were purposively sampled from the hospice day unit. The interviews were digitially recorded, transcribed anonymously, and the transcripts analysed using a phenomenological analysis framework.

Findings

Tiredness was the most common symptom of anaemia. Participants liked attending the day hospice instead of hospital for their transfusions owing to differences in transport, parking, waiting time, and space to ask questions. The majority had no concerns about hospice transfusion and would be happy to return for further treatment.

Conclusions

Haematologypatients can have a good experience when undergoing blood transfusion at a day hospice. Hospices should perhaps offer this procedure more widely.
Impact of an educational pain management programme on nurses' pain knowledge and attitudes in Kenya
Authors: Machira Gladys , Kariuki Hellen , Martindale Linda
Published: May 2014

Introduction:

Pain is a common symptom for patients receiving palliative care, but can be relieved by effective pain management. Nurses play a critical part in implementing pain management effectively and must therefore have a solid foundation of knowledge and a positive attitude toward it. Aim: The purpose of this study was to implement and evaluate an educational pain management programme (PMP) for nurses in Kenya.

Methods:

The effects of the PMP were measured using a quasi-experimental pre-post test design. Twenty seven nurses from two units in a single health institution in Kenya participated in a baseline assessment using the Nurses' Knowledge and Attitudes Survey Regarding Pain (NKASRP). Nine randomly selected nurses then received 7 hours of focused education. This group completed the assessment again both immediately after and 2 weeks after the PMP.

Results:

A deficit in knowledge and attitudes related to pain management was prominent at baseline. The nurses who received the PMP scored significantly higher on the NKASRP following the PMP: mean scores were 18.44, 28.00, and 27.56 at baseline, first follow-up, and second follow-up assessment respectively.

Conclusion:

The PMP appears to be effective in improving nurses' pain knowledge and attitudes.
The experience of Chinese American parents of children with life-limiting illness: a comprehensive review
Authors: Wang Jinjiao , Kearney Joan A
Published: May 2014

Life-limiting childhood illness is a traumatic experience presenting parents with psychological, physical, and social challenges. While cultural influences affect all parents coping with the life-limiting illness and end-of-life period of their child, little is known about the experiences of Chinese American parents. The purpose of this comprehensive literature review was to describe Chinese American parents' experiences during their children's end-of-life period from a culturally informed perspective. Important themes in the literature are revealed including culture-based phenomena regarding philosophy of life and illness that can affect treatment choices, cultural mores that influence parental behaviour in Western health-care systems, specific communication patterns within families and between families and providers, certain coping risks, and gender-based roles and caregiving activities that have implications for provider communication patterns. The findings are consonant with the larger literature regarding the impact of traditional culture and values on Chinese family and health behaviours. Health professionals must be sensitive to Chinese American parents' communication styles, unspoken concerns, and unresolved cultural conflicts in American health-care settings. Educational interventions may be very helpful in this regard.
Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers
Authors: Lees Carolyn , Mayland Catriona , West Angela , Germaine Alison
Published: May 2014

Little is known about the quality of the end-of-life care patients receive at home. This paper reports findings from a study that explored bereaved relatives’ and carers’ experiences of end-of-life care at home using the Care of the Dying Evaluation (CODE) questionnaire. Narrative data from questionnaires completed by 72 carers of patients who had died at home in the North West of England underwent qualitative analysis. In general good quality care was provided, but there were times when adequate support was not evident in relation to pain control and what to expect when death was imminent. The study provides useful information for those who provide end-of-life care at home.
Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition
Authors: Jennings Valerie , Nicholl Honor
Published: May 2014

Background:

Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in Ireland use following the death of their child.

Objective:

The aim of this study was to explore mothers' experiences of bereavement support in Ireland following the death of their child from a life-limiting condition.

Method:

A descriptive qualitative design was used. The study sample was ten mothers who had been bereaved in the previous 5 years. All mothers were recruited to the study by a gatekeeper from a voluntary organisation. Data were obtained through unstructured single interviews and analysed using conventional content analysis.

Results:

The findings indicate that the mothers relied on a combination of informal and formal bereavement support. In addition to depending on others to provide support, the mothers described their ability to self-support.

Conclusions:

The findings show that mothers in Ireland use a variety of sources of support following the death of their child from a life-limiting condition. Health professionals involved in caring for families and children with a life-limiting condition should have an understanding of these sources.
The lived experiences of the Sikh population of south east England when caring for a dying relative at home
Authors: Cowan Margaret Mary
Published: May 2014

Background

Few ethnic minorities access specialist palliative care (SPC) services when caring for a dying relative at home.

Objective

This project aimed to explore and understand the experiences of the Sikh population of south east England when caring for a dying relative at home without support from SPC.

Methods

Six semi-structured interviews were conducted with carers in Punjabi or English and the transcripts were analysed using interpretative phenomenology.

Results

Five super-ordinate themes were identified: factors leading to the caring role, emotional effects of caring on the carer, impact of caring on the wider family, influence of health-care services, and religious and cultural influence. The most common emergent theme was lack of support from health professionals, which emerged from a lack of awareness of services. A sense of duty and hard work was apparent throughout, and appeared to sustain the family. There seemed to be a sense of duty to care for the relative at home. Financial concerns were expressed frequently. The decision to adopt the caring role appeared to be made by the entire family. The Sikh faith seemed to give strength to carers. There appeared to be heightened awareness of what other community members think of carers' actions.

Conclusions

There is a need for health professionals to reach out to this population to increase awareness of and trust in the services that are available to support care at the end of life. However, an unwillingness to accept assistance may persist in some cases.
Community palliative care clinical nurse specialists: a descriptive study of nurse–patient interactions
Authors: Howell Debra , Hardy Beth , Boyd Caroline , Ward Chris , Roman Eve , Johnson Miriam
Published: May 2014

Background

With an ageing population and changes to the UK process of commissioning health-care services, it is important that the role of the community palliative care clinical nurse specialist (CPC-CNS) is better understood.

Aim

This study aimed to describe CPC-CNS activities during interactions with patients.

Methods

Four CPC-CNSs were observed and audio-recorded during interactions with 34 patients. The data was assessed qualitatively using thematic analysis.

Results

An enormous breadth of activities were observed, within a framework of assessment, planning, intervention, and evaluation. Cross-cutting themes were real-time decision making, leadership, ability to respond to and coordinate complex and varied situations, and communication techniques. Data saturation was not achieved.

Conclusion

CPC-CNSs provide multifaceted care, requiring wide-ranging knowledge to enable them to act as liaison points in a complex health service, respond independently to the fluctuating needs of patients, and provide effective advance care planning, particularly to those with advanced disease, multi-morbidity, and frailty.
Compensatory mechanism use during the first 6 months following distal radius fracture
Authors: Bialocerkowski Andrea E , Grimmer Karen A
Published: May 2014

Using a descriptive, longitudinal study design, the authors aimed to describe the frequency and type of compensatory mechanism use over a 6-month period following distal radius fracture. A volunteer sample of individuals who sustained a unilateral, distal radius fracture was recruited from a wide range of health-care settings, in Adelaide, Australia. Trends regarding frequency and type of compensatory mechanism use were elicited from a validated, custom-designed self-completed questionnaire (the Wrist Outcome Instrument) at 8, 12, 18 and 24 weeks post-fracture.

Compensatory mechanism use was dependent on the type of activity performed and the time since fracture. Assistance to perform activities of daily living was often not required past 12 weeks following fracture. However, compensatory mechanism use continued to be reported at 24 weeks post-fracture for lifting/carrying and hygiene/dressing activities.

To conclude; following distal radius fracture, individuals alter the manner in which tasks are performed up to 6 months following distal radius fracture. These findings indicate that independent activities of daily living (ADL) performance, at 24 weeks post-distal radius fracture, does not necessarily equate to an individual's ability to perform the ADL at his or her pre-injury level. Thus, an assessment of the manner in which ADLs are performed may be required to ensure that all activities are performed safely. These findings could be used in the clinical setting to educate injured individuals regarding ‘recovery’ following a distal radius fracture.
A study of occupational therapists’ perceptions of clinical governance
Authors: Wilks Linda , Boniface Gail
Published: May 2014

Action research methodology was used in this study to establish an understanding of the perceptions of occupational therapists regarding clinical governance and continuing professional development (CPD). This cyclical problem-solving process enabled an in-depth study, facilitated by a senior occupational therapist with eight occupational therapists as coparticipants. All participants worked in mental health services for a large NHS trust in South Wales. The aims were to identify participants’ understanding of clinical governance and its link with CPD and to identify if obstacles existed in preventing implementation of clinical governance and CPD; and if obstacles did exist, how they might be overcome.

Participants showed that they had a good understanding of clinical governance and its relationship to CPD, but identified a number of constraints preventing their engagement in CPD activities. These included time and resources, management and leadership styles, interprofessional working, personal feelings and the need for cultural change. They also identified reflection as a key component of CPD activities, but had concerns about reflection, including when and how to reflect, whom to share reflection with and how it could be made evident. Because of the practical nature of action research, some changes were made to enable implementation of CPD activities and there was evidence of a shift in participants’ understanding of the issues, which engendered a positive learning experience through the research process.
‘Physiotherapy is ineffective for back pain’: Where is the evidence?
Authors: Rankin Gabrielle
Published: May 2014

This statement is typical of the type of headline much of the UK media chose to run following the publication of a paper in the British Medical Journal (BMJ), comparing routine physiotherapy with assessment and advice from a physiotherapist (Frost et al, 2004). The associated BMJ editorial concludes that NHS physiotherapy adds little to an advice sheet and questions whether resources should be used in ineffective practice (MacAuley, 2004). Is this what the evidence is telling us?
Scopes of practice and competence assurance for New Zealand health professionals
Authors: Skinner Margot A
Published: May 2014

Landmark legislation drafted to bring health practitioners under one umbrella Act was passed by the New Zealand parliament in September 2003. The Health Practitioners Competence Assurance Act is designed to increase protection for the public by providing a new framework for the regulation of health practitioners. Within 1year of the Act receiving royal assent, the registering authorities for each of the health professions will be required to have specified scopes of practice, to have prescribed the qualifications necessary to register applicants and to have a process in place to review the ongoing competence of practitioners.

A total of 15 registering authorities for health professions, including physiotherapy, medicine and nursing, have the statutory authority to enact this omnibus legislation. There is scope for other professions to make application for inclusion in the future. The registration authorities should be well placed to manage entry-level registration and ongoing competence issues. However, major challenges lie ahead as the professions seek to agree on tasks relevant to their scopes of practice and restricted activities. The outcomes of this landmark legislation are likely to be of global interest as few countries or states have passed legislation like the Health Professions Competence Assurance Act; others are still debating the parameters of scopes of practice and yet others have put it in the ‘too hard basket’.

This article focuses on the development of scopes of practice and potential implications of the reforms.
Integrating technology in the workplace for people with spinal cord injury
Authors: Rodger Sylvia A , de Jonge Desleigh M
Published: May 2014

Computer technology can overcome mobility and functional limitations resulting from spinal cord injury (SCI) and enable re-employment. This study aimed to identify barriers and supports to effective technology use at work from the unique perspectives of technology users themselves. A qualitative research design was used to explore the perspectives of 11 technology users with SCI. In-depth, openended interviews and observations were conducted at each person's workplace.

Five major themes emerged: identifying the best or right technology; acquiring the technology; customizing and learning to use the technology; supporting the technology; and empowerment. Understanding these consumer perspectives enables professionals to empower people with SCI to optimize their work potential.
Physiotherapy in the management of TMD: A review of the literature part 2
Authors: Smith Toby Oliver
Published: May 2014

The second section of this two-part article assessing the effectiveness of physiotherapy in the treatment of temporomandibular disorders (TMD) examines the effectiveness of electrotherapy modalities, mobilizations and manipulation techniques. This article concludes that from the studies reviewed, there appears to be insufficient current literature to determine whether different electrotherapy modalities or mobilization techniques are effective in treating TMD.

Although the literature largely supports the application of temporomandibular manipulation to treat disc displacement TMD, many methodological limitations were identified within the evidence base, making it inappropriate to state how effective manipulation is in treating such patients. There remains insufficient evidence to assess the effectiveness of this treatment on muscle disorder or diagnoses TMD.

Based on critical appraisal, it was recommended that the evidence base requires a number of large, well designed, blinded randomized control trials with between-group comparisons, to determine how effective these three physiotherapy modalities are in the treatment of TMD.
Do patients' expectations of physiotherapy affect treatment outcome? Part 1: Baseline data
Authors: Metcalfe Caroline J , Moffett Jennifer A Klaber
Published: May 2014

Little or no research has been conducted to explore patients' expectations of physiotherapy. This article investigates the relationship between patients' expectations of benefit and other relevant variables prior to physiotherapy. A postal questionnaire survey was sent to 285 patients referred for musculoskeletal outpatient physiotherapy for a peripheral joint problem. The results showed that higher expectations of benefit were found if the patient: (1) was female; (2) had a traumatic condition; (3) had a shorter duration of condition; (4) had a higher locus of control; (5) had no previous experience of physiotherapy; and (6) had greater satisfaction with previous health care received.

This exploratory study shows that there are many variables associated with patients' expectations of benefit from physiotherapy. Physiotherapists need to be aware that each patient presents with a variety of characteristics that may impact on their expectation of benefit, since this may affect the outcome of treatment. Further research is needed to determine whether patients' expectations of benefit affect treatment outcome. The second part to this article explores the relationship between pre-treatment expectations on benefit and the outcome of physiotherapy treatment.