bluuebunny/crossref_metadata_2025_split huggingface dataset:
The feasibility and acceptability of a low vision self-management programme for older Singaporeans: A pilot study
Authors: Drury Vicki , Mackey Sandra , Peter Tay Kay Chai 
Published: May 2014

Background: The self-management needs of patients suffering from vision impairment are often overlooked during routine clinical care. Aim: The primary aim of this study was to develop a socially and culturally acceptable self-management programme for people with low vision in Singapore. Method: This mixed method study was conducted in two phases. Phase 1 gathered information from community groups and phase 2 involved integrating these suggestions with an Australian programme which was modified for delivery in Singapore. A pre- and post-test design using standardized instruments was used. Narrative data were integrated with the quantitative results to provide a rich description of patients' experiences. Results: Participants reported using more low vision aids, being able to perform activities of daily living with more ease and improved self efficacy. All participants attended every session demonstrating that the programme was both feasible and acceptable. Conclusion: Despite the small sample size, the programme was well received by the participants demonstrating that acceptance of the programme was high and supporting its feasibility. The experiential format of the sessions and the recommended activities appeared enjoyable with participants reporting that it enabled them to practice what was learned in the sessions. The qualitative findings suggest that the programme was effective in improving functional ability especially in relation to activities of daily living. Participants evaluated the programme positively and felt the session time and number of sessions was acceptable. These findings support the further development and evaluation of the programme.
Patients' experiences of a period of intravitreal injection treatment for wet macular degeneration
Authors: Rönn Emsfors Åsa , Elgán Carina 
Published: May 2014

Aim:To describe patients' experiences of intravitreal injections for wet macular degeneration.Method:16 informants, aged 62–89 years (11 women and _five men) were interviewed after a treatment period of intravitreal injections (IVI). The first question was open ended: ‘Can you please describe, in as much detail as possible, your experiences of the period when you received three IVI?’. Qualitative content analysis was employed to analyse the transcribed interviews.Results:The main theme demonstrated that the patients submitted themselves to and allowed the process to run its course. Four categories emerged: handing over responsibility — they placed their trust in the healthcare professionals; being given an opportunity — they appreciated that action was taken; enduring discomfort — they endured physical discomfort and mental unease; having nothing to lose — they accepted the treatment offered.Conclusions:It is necessary to strengthen patient participation during IVI treatment. The ophthalmic nurse can inform the patient about the effects of the treatment in a pedagogical manner. Patient participation can be strengthened by increased knowledge of the treatment effects.
Outcome measures used for the assessment of blepharospasm patients treated with botulinum toxin
Authors: Parker Marina C , Waddingham Paula 
Published: May 2014

Aim To undertake a literature review to assess outcome measures in the treatment of blepharospasm with botulinum toxin. The findings were then used to redesign the documentation records for blepharospasm botulinum toxin clinics. Method A MEDLINE search was undertaken from 2000–2013, which produced a limited number of papers that included the research methods and outcomes (n=18) for blepharospasm treated with botulinum toxin. Results The most frequently used outcome measures can be grouped into four main categories: assessing severity; force of eyelid closure; functional impact of disease; and efficacy. In addition, the latency and duration of treatment effect were common themes in the literature. Conclusions The main outcome measures had been validated, while the more locally designed ones had not, and more complicated tools had been designed for use in a research setting rather than busy outpatient clinics. The tools selected for use within the ophthalmology clinic were easily incorporated into the documentation and were straightforward to use. As a result, usability by staff was high.
The management of amblyopia in children: the results of a national survey of orthoptists
Authors: Bienkowska Anna , Starbuck Ann , Churchill Amanda 
Published: May 2014

Background Amblyopia is the most common cause of monocular visual loss and an important cause of avoidable blindness. It is usually diagnosed in young children and the condition is reversible, although if left untreated significant visual impairment can occur. Conventional treatment methods involve refractive adaptation followed by patching or atropine therapy and it is well documented that good compliance is key to successful treatment. Although many studies and reviews have been published on amblyopia treatment, there are no national guidelines to assist management. Aims To report the results of a national survey of orthoptists, to outline methods of treatment in clinical use and whether this reflects the published evidence base, and to determine the scale and management of non-compliance. Methods A literature review was conducted using Medline and the Cochrane Database Of Systematic Reviews. A survey was performed by the British and Irish Orthoptic Society and the responses analysed. Results A total of 340 questionnaire responses were collected. Analysis revealed that clinical practice varied widely and, in many cases, did not reflect the evidence from published studies on the management of amblyopia and non-compliance. Noncompliance was estimated to be 0–10% in most practices surveyed. Discussion This article uses the evidence base available to create guidelines to assist orthoptists in the management of amblyopia in children and proposes a management strategy for non-compliance.
Effective partnerships in action: radical options or more of the same?
Authors: Mackie Phil , Morton Rosie 
Published: May 2014

September 2000 saw the publication in the UK of the first National Health Service (NHS) plan for cancer services. The NHS Cancer Plan (Department of Health (DoH), 2000a) may be one of the most fundamental reforms of national cancer care services ever attempted – just as important is the fact that there is much in it for palliative care. It states: ‘All patients should have access to the specialist palliative care advice and services they need. For most patients, these will be provided in their homes, in the community or in hospital. Some will require the specialist facilities of a hospice. Voluntary palliative care services need to be enabled to play their full role in the cancer network, with adequate funding from the NHS’. (DoH, 2000a)
The needs of children and their families at end of life: an analysis of community nursing practice
Authors: Tuffrey Catherine , Finlay Fiona , Lewis Mary 
Published: May 2014

Background : There are few studies in the literature describing or evaluating the workload of children’s community nurses prior to and following the death of a child with a non-oncological lifelimiting disorder. Method : A documentary analysis of nursing records of all children under the care of the Lifetime Service who died during a 5 year period was carried out. Results : The number of visits and telephone calls involving children’s community nurses in the end of life and bereavement periods was analysed and the level of the put to families found to vary widely. In total, the number of visits ranged from 0–50 (median 8). The total number of telephone calls made or received for each child ranged from 0–127 (median 20). Calls and visits were with a wide range of people relating to diverse subject areas and continued even when children were in hospital. Conclusion : Community children’s nurses liase with a wide range of professionals and organisations and the nature of their workload at the end of life is often hidden.
Aboriginal cultural practices on caring for the deceased person: findings and recommendations
Authors: McGrath Pam 
Published: May 2014

Aim: To describe Aboriginal peoples’ post-death cultural practices in the Northern Territory. Methods: The data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory, Australia, with Aboriginal patients and carers, and the health professionals who cared for them. Results: The findings indicated the importance to Aboriginal peoples of viewing the body, and post-death bereavement practices of group wailing, which can be coupled with physical expressions of self-mutilation and removal of clothing. Special ceremonies are reported for times when the body is returned home and there are strong relationship-based practices about which persons are able to handle the body. Conclusion: The findings provide useful information for palliative care nurses working with Aboriginal peoples to ensure appropriate cultural understanding and an informed response to practice.
Families’ transition to a Canadian paediatric hospice. Part two: results of a pilot study
Authors: Steele Rose , Derman Sarah , Cadell Susan , Davies Betty , Siden Hal , Straatman Lynn 
Published: May 2014

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children’s Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child’s care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.
Renal failure and specialist palliative care: an assessment of current referral practice
Authors: McKeown Alistair , Agar Ruth , Gambles Maureen , Ellershaw John E , Hugel Heino 
Published: May 2014

Aims: This retrospective audit assessed the referral practice for patients with end-stage renal failure from the nephrology service to the specialist palliative care team in a large teaching hospital in the north-west of England. Methods: Forty-nine referrals with ‘renal’ as a primary diagnosis over a two-year period were identified from referral data. General and palliative care notes were reviewed and a data collection tool was designed. Results: Most common reasons for referral were for ‘placement’ (38.6%) and ‘dying/distressed’ patients (22.7%), although psychological support was also prevalent (15.9%). Renal teams discussed stopping dialysis in the majority of cases (89%), but documented preferred place of care less frequently (48.3%) and achieved discharge to these locations in less than half of cases (21.4%). Conclusion: There was well-established referral practice between the renal and the specialist palliative care team at the hospital examined. The renal team appropriately referred for symptom control and support in the dying phase of patients. There are issues surrounding placement and increased implementation of end-of-life care tools, including the Liverpool Care Pathway, Gold Standards Framework and Preferred Place of Care documentation for renal patients, which needs to be an ongoing priority.
Development of palliative care in nursing homes: evaluation of a Danish project
Authors: Raunkiær Mette , Timm Helle 
Published: May 2014

Background There is a general lack of research regarding the palliative care of nursing home residents and professional education in palliation in Denmark. Qualification requirements need to be established, best practices must be spread, and a systematic approach to providing competent palliative care in nursing homes must be found. Purpose The purpose of this study was to evaluate an attempt to develop—through three pedagogical methods—the palliative care competencies of the personnel and make organizational improvements at three Danish nursing homes. Method A process-based, user-oriented evaluation method was used. Twenty-two nursing home employees and five teachers participated in five focus group interviews. Results Both the nursing home employees and the teachers felt that the project as a whole, and the three methods used, contributed to an improvement in the staff's palliative care competencies and the organization. Conclusion The study exposes the barriers to improving Danish palliative care provision and factors required for development to succeed. It highlights the need for recognition by colleagues, active involvement of nursing home managers, and a certain understanding of the methods, including the importance of prioritizing practice-based competence training.
Exploring district nurses' reluctance to refer palliative care patients for physiotherapy
Authors: Nelson Lesley Ann , Hasson Felicity , Kernohan W George 
Published: May 2014

Aim: To explore district nurses' beliefs regarding referral of a patient receiving palliative care for physiotherapy. Method: Three focus groups, guided by the Theory of Planned Behaviour, were undertaken with a purposive sample of 16 district nurses. All were audio-recorded, transcribed, and subject to content analysis. Results: Nine beliefs were identified as influencing referral decisions, the majority of which were negative, such as the belief that physiotherapists lack palliative care skills and could foster false hope. Additional barriers to referral included a lack of contact and communication with physiotherapists, poor knowledge or experience of physiotherapy, unsuitable referral systems, and poor availability of services. Conclusion: These findings help to explain why so few patients receiving palliative care access rehabilitation services. To ensure that patients have appropriate access to palliative rehabilitation, there needs to be consideration of how the identified barriers can be overcome.
A training needs analysis of neonatal and paediatric health-care staff in a tertiary children's hospital
Authors: Gallagher Katie , Cass Hilary , Black Rachel , Norridge Matthew 
Published: May 2014

Introduction: Despite clinical advances in neonatal and paediatric palliative care, there is limited educational provision to underpin practice. To develop appropriate educational content, the needs of staff working in this area must be identified. Aim: To explore the educational needs of staff working with families with palliative or end-of-life care requirements. Methods: A training needs analysis (TNA) explored the perceived knowledge, confidence, and support of neonatal and paediatric health professionals in a tertiary children's hospital in London. Results: An online Likert scale TNA was completed by 111 participants. The results indicated that the staff did not feel educationally prepared in their working areas, despite having regular contact with families with palliative or end-of-life care issues. Discussion: Understanding the educational needs of staff can underpin the development of appropriate educational interventions. These modules require evaluation to determine their impact on health professionals' knowledge and confidence.
Exploring the advance care planning needs of moderately to severely ill people with COPD
Authors: Nguyen Marilyse , Chamber-Evans Jane , Joubert Alexandre , Drouin Isabelle , Ouellet Isabelle 
Published: May 2014

Background: There is no clear consensus on how to approach advance care planning (ACP) with people with chronic obstructive pulmonary disease (COPD). Aim: This study aimed to explore the perceived ACP needs of people with COPD and to investigate the usefulness of a DVD in meeting these needs. Methods: A qualitative descriptive design was used. Twelve people with moderate to severe COPD were interviewed in an outpatient clinic. Results: From the themes elicited, a mental model was created to demonstrate how the participants engaged in a process of mental work to accept their own mortality and subsequently engage in ACP. Conclusions: Health professionals should not rely solely on illness severity to initiate ACP. Rather, patients from different illness categories should be approached, but with sensitivity to their emotional cues. Participants who were receptive to end-of-life issues enjoyed the DVD. The DVD is a good medium to facilitate discussion, but would be more effective if patients were screened for readiness prior to viewing.
Integrating palliative care in lung cancer: an early feasibility study
Authors: Johnston Bridget , Buchanan Deans , Papadopoulou Constantina , Sandeman Gillian , Lord Hannah 
Published: May 2014

Aim: The aim of this preliminary study was to evaluate the feasibility of conducting an effectiveness trial of early access to palliative care services for people with lung cancer through use of an integrated outpatient model. Methods: Newly diagnosed patients with lung cancer receiving palliative-intent treatment or best supportive care treatment were recruited over a 5-month period from one out-patient clinic in Scotland. Patients were offered a clinical review appointment with a palliative medicine consultant at two time points: baseline and 12 weeks later. Prior to each appointment patients completed three outcome measures addressing symptom severity, wellbeing, and health-care needs. One-to-one interviews were also conducted to explore patients’ experiences of being involved in the study. Results: Three patients participated in the study. The main reasons for low recruitment were patients’ deteriorating condition and unwillingness to undertake extra hospital visits. However, qualitative data indicated that the participants found this extra layer of supportive care useful in identifying and managing their needs, as well as enabling future planning. Conclusion: Further testing is needed to ascertain the feasibility of conducting a trial of integrating early access to palliative care services into routine practice for people with lung cancer.
Iranian nurses’ perceptions of palliative care for patients with cancer pain
Authors: Seyedfatemi Naimeh , Borimnejad Leili , Hamooleh Marjan Mardani , Tahmasebi Mamak 
Published: May 2014

Aim: The purpose of this study was to identify Iranian nurses’ perceptions of palliative care for patients with cancer pain. Methods: The study took a qualitative approach. Semi-structured interviews were held with 15 nurses with Bachelor's degrees working in three teaching hospitals in Iran. Transcripts of the interviews underwent content analysis, and categories were extracted from the material. Findings: The findings came under two main categories: management of physical pain and psychological empowerment. Management of physical pain had two subcategories: the importance of communication, and pain palliation using drugs. Psychological empowerment also had two subcategories: supportive behaviour and distress reduction. Conclusion: The sample felt that palliative care for patients with cancer pain must include psychological empowerment, support, and communication as well as physical pain relief.
Reconstructing occupation after HIV infection: Lessons from women's experiences
Authors: Opacich Karin J 
Published: May 2014

For the majority of human immunodeficiency virus (HIV) positive women in the United States, social and economic circumstances limit options for meaningful occupation and access to relevant healthrelated services. Quality of life is highly contingent upon the extent to which individuals can fulfil their life plans. This triangulated study explored relationships among HIV and acquired immunodeficiency syndrome (AIDS) status, engagement in meaningful occupations, services associated with AIDS-related health care and self-reported quality of life for HIV positive women. Survey data from the Multidimensional Quality of Life Questionnaire for People with HIV was collected, along with numeric health indicators and narrative from two semi-structured interviews addressing occupation and health.In total, 15 women representing three cohorts along the illness trajectory of HIV and AIDS were recruited from an urban health-care facility designed to provide AIDS-related services. Most of the women in the study relayed a protracted process of learning to live with HIV and several of the women viewed HIV infection as an event that led to enhanced quality of life. The need for comprehensive health and support services was evident in every case, regardless of health status.
The hidden role of the occupational therapist in the management of continence
Authors: Supyk Jo-Anne , Vickerman Julie 
Published: May 2014

This article describes a collaborative project, ‘PromoCon Education and Integration’, between PromoCon and the University of Salford. A national survey questioned occupational therapists on their opinions as to whether they had a role in continence care for people with disabilities. Is the promotion of continence part of an occupational therapist's role? The results of the survey were analysed and findings highlighted a need for additional training in continence management, but were not explicit as to the types of training needed. A series of structured focus groups explored these findings further to identify that the majority of therapists relied heavily on self-teaching to develop specialist skills within continence management and there was definite support for the inclusion of continence care issues in occupational therapy undergraduate programmes. Therapists felt that delivering education at an undergraduate level would ensure that all newly qualified therapists have the knowledge they require to include assessment offunctional continence within their remit, thereby meeting the functional and psychosocial needs of individuals with continence problems.
Context of change in community mental health occupational therapy: Part two
Authors: Harrison Deborah 
Published: May 2014

This is the second part of a report on a study that used focused ethnography to explore an occupational therapist's role in a community mental health team. Following collaborative data analysis, it was found that the context of change was an important influence on the occupational therapist. The practitioner was trying to develop her role as a mental health worker and an occupational therapist in a multiprofessional team. The team was working within a changing organization, with little opportunity to explore the impact of change. It is recommended that further development of professional roles is a collaborative endeavour, involving all professions and the service users. Institutional ethnography is identified for future research, so that the relationships and influences throughout the entire mental health-care system can be explored. The effect of organizational change on the working lives of health-care professionals needs to be acknowledged and actively managed.