bluuebunny/crossref_metadata_2025_split huggingface dataset:
P162 Lost in translation; Physiotherapists’ attitudes and beliefs towards palliative cancer patients in the acute hospital setting
Authors: Hutchinson Helen 
Published: October 2013

AimThe study aimed to elucidate any attitudes acute hospital physiotherapists may have towards palliative cancer patients.BackgroundWith advances in medical technology, increasing numbers of patients are ‘living with’ a terminal cancer diagnosis for longer periods; this coupled with changes in government policy, is resulting in patients being treated closer to home rather than in specialist centres, bringing physiotherapists into increasing contact with this patient group.MethodsSemi-structured interviews (analysed utilising Colaizzi’s method of analysis), of the first twelve physiotherapists from an acute hospital in the UK who volunteered for the study and who met the inclusion criteria.ResultsTwo clusters of themes were identified, namely Attitudes and Issues. There were four sub-divisions of Attitudes; terminology, physiotherapists’ perceptions, other professionals’ perceived attitudes towards physiotherapists, and patients and their families perceived attitudes towards physiotherapists’ role with terminally ill cancer patients.“I’d say there are a lot of physio’s that think it’s probably a little bit pointless”“try and maintain their quality of life … by their thinking… and hopefully try and meet it.”There were six sub-divisions of issues: communication, education, emotions, boundaries, referring onward and time.“I think they’re [physiotherapists] scared that that’s going to be asked of you…will I walk again?”ConclusionsSome physiotherapists understand and apply their skills to improve the quality of life of palliative cancer patients. However it is suggested that the majority of physiotherapists regard these patients as ‘dying from’ rather than ‘living with’ a terminal cancer diagnosis. Referral protocols and service pathways are lacking. Physiotherapists require support and education to enhance particular skills and confidence.Application to hospice practiceHospices have the opportunity to establish rehabilitation teams and pathways with acute hospitals to improve access to rehabilitation for all palliative cancer patients and to deliver services in line with government policy.
P163 Move it or Lose it! developing supportive care: the evaluation of an exercise programme for patients with MS
Authors: Archer Nikki , Robinson Julie , Waite Jenny , Rowbotham Denise 
Published: October 2013

Studies have suggested that engagement in a programme of exercise is beneficial for people living with Multiple Scelrosis (MS). There is evidence of improvements in mobility, overall health and the management of some symptoms such as fatigue, muscle stiffness, anxiety and depression.St Giles Hospice has been working to develop it’s provision of Supportive Care, working with community partners to meet the needs of those affected by a life limiting illness who have previously not easily accessed hospice services.A 12 week pilot exercise and support programme was undertaken working in collaboration with a community based exercise facilitator, and local NHS MS services.The aims:promote and maintain independenceimprove muscle strength, flexibility, mobility and activityprovide a supportive environmentintroduce patients to hospice supportThe exercise class was set to music, using a range of equipment, most participants began from a seated position, with encouragement to stand if appropriate, there was focus on improving strength, stamina, mobility, co-ordination, balance, flexibility and confidenceThe outcomes9 people attended, aged between 43 and 77Overall attendance = 75%, 83 out of 111 possible attendancesEvaluation: participants recorded sit to stand from their chair as a measure of leg strength at the beginning and end of the course.The results showedsignificant improvement in all participants demonstrating a tangible increase in leg strength and technique. Being able to quantify their own progress boosted self-esteem, Participants reported significant social and supportive benefits to attending.The hospice has engaged in dialogue with commissioners to support this work. We have engaged with other MS patients, their carers and NHS staff to promote the benefits of the programme. We have engaged in dialogue with the patients who have attended and work with them to provide a maintenance programme.
P164 Evaluation of advocacy service at St Joseph’s hospice, Hackney
Authors: Roebuck Hattie , Millar Susan 
Published: October 2013

Evaluation of advocacy service at St Joseph’s Hospice, Hackney.BackgroundIt is estimated that 1.7 million (22%) of London residents do not speak English as their main language. In boroughs such as Newham this figure rises up to 41% of residents. (2011 Census). Newham University hospital has an extensive healthcare advocacy service to meet local need and it also provides advocates to interpret consultations at St Joseph’s Hospice.AimThis project aimed to assess the impact of working at St Joseph’s Hospice upon healthcare advocates.Method12 healthcare advocates were interviewed individually at St Joseph’s hospice using a questionnaire. Their experience of hospice work was assessed. Their opinion was sought on whether they found working in a hospice different to the hospital setting, the emotional burden, the structure of the consultations, and episodes of culturally insensitivity. They were also asked if they would like additional training or support to undertake hospice work.ResultsThe advocates enjoyed hospice work but most (11/12) found it emotionally challenging. They felt unclear about how to balance professionalism and emotion whilst breaking bad news and often worried about the patient and their family later in the day. They were keen to promote continuity with the same advocate interpreting for a patient or family and to be considered part of the healthcare team. They had no formal system for emotional support and a majority requested this (11/12) plus additional training (9/12).The advocates also reported that greater structure to the consultation process would be helpful. 7/12 felt they had observed inadvertent cultural insensitivity.OutcomesWe are liaising with the advocacy team about communication skills & emotional resilience training. Guidelines for undertaking consultations with advocates have been written. The impact of these upon advocate consultations and patient care will need to be evaluated in due course.
P165 Engaging minority ethnic communities: an evaluation of a Marie Curie Hospice project aiming to improve access to palliative care services
Authors: Baillie Jessica , Harrop Emily , Byrne Anthony , Stephens Karen , Nelson Annmarie 
Published: October 2013

BackgroundThere is increasing emphasis on ensuring that access to healthcare is equitable in the UK, yet on-going evidence demonstrates that minority ethnic communities are underrepresented in accessing palliative care. A Marie Curie Hospice in Wales initiated a funded outreach project with a keyworker post to engage minority ethnic communities, aiming to improve access to palliative care services.MethodsThe study aim is to evaluate the outreach project and keyworker post. A longitudinal evaluation of the initiative is being undertaken, encompassing interviews with hospice and community healthcare professionals, minority ethnic communities and the project keyworker. Key project documents, such as reports, and hospice ethnicity data are also being analysed. This presentation reports on data from semi-structured interviews with hospice staff and keyworker, and analysis of project reports. Relevant ethical and governance approvals were obtained.ResultsHospice healthcare professionals highlighted challenges when providing palliative care to individuals from minority ethnic communities, particularly language barriers. Minority ethnic communities in South Wales appeared uninformed about local palliative care services and the keyworker implemented a range of initiatives to raise awareness and widen hospice referral routes. Additionally, the keyworker supported healthcare professionals when caring for people from minority ethnic communities, for example meeting religious needs at the end-of-life.Looking ahead, hospice staff are keen to increase their understanding of different ethnic groups and cultures, while the keyworker hopes to work with community healthcare teams to improve referral rates to the hospice.Conclusions and applicationThe evaluation has demonstrated the progress made by the keyworker to engage minority ethnic communities and support hospice staff to holistically care for people from different ethnic groups.The keyworker role appears, at this early stage in the project, to be an excellent way of engaging minority ethnic communities and improving access to palliative care services.
P166 When English isn’t your first language: supporting deaf people in end of life care
Authors: Hodson Melanie , Ede Jill , Dean Rowena , Edwards Rebecca 
Published: October 2013

Identified as a significant public health issue, hearing loss affects more than 10 million people in the UK. This figure is expected to rise to 14.5 million by 2031 [1] and the WHO anticipates that adult onset hearing loss will be amongst the top ten health problems*in the UK by 2030 [2]. Approximately 50,000 people use British Sign Language (BSL) as their first or preferred language [3].It is thought that of those dying each year in England and Wales, more than 70,000 will be deaf or hard of hearing and it is reported that there is ‘little deaf awareness within the world of palliative care’ [4].Low deaf awareness amongst health staff and insufficient communication support means that people with hearing loss can find health services difficult and frustrating to use and family members may be inappropriately used as interpreters.Access to end of life care can be impeded by communication difficulties and low health literacy. Research suggests that people who are deaf may have limited understanding of their choices for end of life care [5]. Pain and symptom management can be key issues [6] and a literature review indicates that there is little information available in BSL to help people find out about hospice care.We discuss barriers to communication, impacts of a lack of deaf awareness, outline ways in which hospice care professionals can support people who are deaf and present a new BSL hospice care information resource.
P167 An exploration of end of life care needs of people with intellectual disabilities: Developing a model of service delivery
Authors: Cithambaram Kumaresan , Duffy Mel , Courtney Eileen 
Published: October 2013

BackgroundPeople with intellectual disabilities are living longer and suffering from the same life limiting illness as general population. The changing needs and care demands of this group force service providers and professionals to better equip themselves to respond and attend to the specific health needs of this group. In the caring process service providers often forget to hear, listen to and include the voices of this vulnerable population which can lead to people with intellectual disabilities receiving inconsistent and inappropriate end-of-life care.AimTo explore the end-of-life care needs of people with intellectual disabilities and develop a model of service delivery.Objectives1. To explore attitudes, perceptions and preferences of people with intellectual disabilities about end-of-life care. 2. To explore perceptions and experiences of family members of people with intellectual disabilities about end-of-life care needs of people with intellectual disabilities. 3. To develop a model of service delivery for people with intellectual disabilities at the end of life.MethodologyThe study was conducted in an intellectual disability service that provide residential and community service to adult with intellectual disabilities. Constructivist version of Grounded Theory Methodology was adopted. Ethical permission was obtained from the academic institution and service to carry out the study. All consenting participants (17) were interviewed between 45-60 minutes. Data were analysed using Constant comparative method.FindingsThe data revealed how the participants wanted to be cared at the time of dying and after death. The participants’ main concerns are revealed from the data areHolismandFamiliarismwhich explain the care needs at the time of dying andRespectivismwhich explains the care requirement after death. A core category of Continum and Ultimatumwas constructed.Conclusion and ImplicationThe findings from this study will help to develop a model of service to meet the needs of people with intellectual disabilities at the end of life.
019 Recognising Dysphagia Risk and Compromised Nutrition in Patients with Advanced Chronic Obstructive Pulmonary Disease (COPD): Exploring the Role of Speech and Language Therapy and Dietetics
Authors: Harvey Sarah , Gordon Lianne 
Published: October 2013

BackgroundPatients with advanced COPD have an increased risk of dysphagia1and malnutrition2. These symptoms are frequently inter-related and can have a detrimental impact on patients’ nutritional wellbeing, frequency of exacerbations and quality of life. Speech and Language Therapists (SLT) and Dietitians possess expertise in the diagnosis and management of dysphagia and malnutrition however their role supporting palliative patients with advanced COPD is not well established.AimTo explore the role of SLT and Dietitian in the screening, diagnosis and management of dysphagia and malnutrition in patients with advanced COPD.To raise awareness of swallowing and nutrition difficulties in advanced COPD amongst patients, carers and palliative care professionals.Approach UsedAll hospice patients with a diagnosis of advanced COPD were screened for dysphagia and malnutrition by the SLT and Dietitian over a one month period. Anecdotal qualitative information was gathered on the impact of COPD on aspects of everyday life relating to feeding including shopping, food preparation, fatigue, appetite, ability to eat a meal.OutcomesThe majority of hospice patients with advanced COPD presented with a degree of oropharyngeal dysphagia and malnutrition (weight loss and fatigue). Patients were unaware that eating and drinking was affected by COPD, believing that swallowing difficulties and loss of appetite were things they would ‘have to put up with’. Patients were unaware that help was available and had no understanding of the role of SLT and Dietitian in supporting their symptom management.Application to hospice practiceSLT and Dietitian appear to have important roles in raising awareness and supporting best management of dysphagia and malnutrition in patients with advanced COPD, to optimise their feeding and nutritional wellbeing.Hospices caring for patients with advanced COPD should proactively screen for dysphagia and malnutrition to ensure these symptoms are recognised and appropriately managed.
P168 Learning disabilities and palliative care: Building bridges – supporting care
Authors: Smith Liz , O’Donnell Allison 
Published: October 2013

Palliative care for people with learning disabilities (PWLD) is often complex but it is vital that these challenges are faced. It is also important to recognise that life limiting illness is more prevalent in the learning disability population and that PWLD die on average 25 years younger than the general population1-2. Increasing numbers of PWLD are living at both ends of the age spectrum with co- morbid conditions and complex health needs and there is a growing need for palliative care provision.­This project recognises the need for education and the development of robust partnerships which lead to collaborative working, to ensure that PWLD will experience equity in accessing palliative care services.The aim of the project, funded through Help the Hospices and the Scottish Government, is to bring the two specialities of Palliative Care and Learning Disabilities with Greater Glasgow & Clyde together using a practice development approach. This will provide support to staff in the provision of best quality care for people with Learning Disabilities who have palliative care needs.Links have been made at both local and strategic levels within both learning disability and specialist palliative care services. All 9 learning disability teams and 6 hospices within NHS GG&C have access to this project.Strategically the project sits within the current learning disability strategy and although all 6 hospices are independent in their delivery of care, Chief Executives have demonstrated their commitment to the project.All education events are evaluated and the evaluations have been extremely positive, with staff suggesting that the education provided will have a direct impact on their professional development and provision of best quality patient care for PWLD.PWLD are at the heart of this project with the ultimate aim being to improve their care.
P169 Reaching more people at the end of life through digital communication
Authors: McLaughlin Kimberley , Miller Daniel 
Published: October 2013

End of Life care is arguably both a public health and diagnosis specific concern. Those living and dying from life threatening illness access support and care from formal (e.g. health and social care) and informal (e.g. community, friends and family) networks. The last few years has seen an explosion in social media and new communication technologies in the informal arena. As hospices face the challenge of extending their reach and realigning their existing resources, researching new ways to support patients and their families is key.A 3 year collaborative study between Professor Daniel Miller (Department of Anthropology, University College London) and Kimberley McLaughlin, Director of Supportive Care (Hospice of St Francis) focuses on the hospice, patients and those living in the community.AimsTo understand the impact and future potential of new communication technologies e.g.webcam, social networking sites and smart phones.To gain the widest and deepest understanding of the role of these technologies in all aspects of communication between people in end of life situations, their carers, family and friends.To research issues including privacy, feelings of security and vulnerability, loneliness, boredom, memorialisation and sense of connexion with others.To explore the relationship between any sense of loss of communicative capacity for persons and simultaneously a gain in communicative capacity as a result of new technologies.To understand the use of communication technologies and health care professionals/hospice staff.This research willAdvance the body of knowledge regarding the use of social media in end of life care as well as researching in sensitive areas.Provide guidance in the use of social media in end of life care.Facilitate communication between end of life individuals who remain in their home and with carers, friends and families both during this period and following upon their death.
P170 Digital life, digital death – an App to fill the gap
Authors: Taylor Ros , Moore Victoria , McLaughlin Kimberley , Russell Sarah 
Published: October 2013

ContextThe crisis of illness provokes people to review their life, dwell on regrets and unfinished business, think about bucket lists and maybe their funeral.This critical time however is dominated by treatment, panic and anxiety, and these important tasks are often neglected and delayed.Lawyer, Victoria Moore and business partner Morag Cormack have designed a simple, elegant iPhone App to digitally capture life’s special moments, in the midst of life, long before an illness takes hold.Victoria was inspired to create theLegacy OrganiserApp after completing her will – she felt there was so much more to record than simply ‘who gets what’!The Legacy Organiser App allows you to:Save photos for your ‘life album’Choose music to create the ‘soundtrack of your life’Create a ‘bucket list’Record your life lessons, your biggest regret, your best kiss!The ‘farewell and will’ section lets you record funeral wishesPalliative PotentialThis innovative app provides opportunities for those in the palliative phase to:Use as a therapeutic digital tool to provoke new conversations‘Tell me about that regret’, ‘talk me through your bucket list’‘Have you thought about how you might celebrate your life?’Use as an advance care planning platform to capture wishes, not simply about funerals but about preferences for future care.Create a generativity document (Chochinov Dignity Therapy)Carry choices around with them - mobile phones allow instant access and sharing of key preferences with othersNext stepsTherapeutic pilot with 10 patientsdownload App to patients iPhonedemonstrate potentialhomework to complete a section eg bucket listreview together at next clinic.First impressions– patients love it, provoking different conversations!Evaluation questionnaire currently in design.Co-create new sections to support advance care planning eg care preferences, with App inventor Victoria Moore
02 Volunteering in Partnership (VIP): Promoting compassion
Authors: Wilson Gail , Pyman Kate , Knowles Sandy 
Published: October 2013

This DOH funded project aimed to increase the volunteering capacity and the personalisation agenda in 3 organisations which support those with long term conditions, the frail elderly and individuals who are at the end of life.The project sought to create new volunteering opportunities for young people aged 16-18 by challenging the paternalistic and risk adverse attitudes of care providers who were reluctant to let young people volunteer with patients.Project management methodology was used to deliver the project. The organisations held meetings with current staff/volunteers and literature was provided to explain the nature of the project and to answer any questions.All VIPs received comprehensive training which promoted the values of compassion, dignity, communication skills and care supporting tasks, eg assisting people at mealtimes.This first stage of the VIP project has been highly successful and has introduced young volunteers into areas that have not previously been available to them. The key outcome is that, with the right support and training, young people can make a very positive contribution to the personalisation agenda of caring and support. The feedback from staff, patients and the young people themselves has been very positive and they appreciate the employability benefits of being part of the VIP scheme.The project has benefited the hospice in a number of ways, saving money and time eg escorting patients to health appointments etc. However, the wider gains have been the proactive engagement of the hospice in the local community, working with schools and colleges, supporting young people to gain employability skills. By creating volunteering opportunities for young people in these areas, stereotypical attitudes and perceptions can be changed as young people become more informed about how to support personalised, compassionate care for the elderly and dying.