Eloise Radcliffe

Identifying the long-term needs of stroke survivors using the International Classification of Functioning, Disability and Health

Objectives: To investigate how contextual factors, as described by the World Health Organisation’s International Classification of Functioning, Disability and Health (ICF), impact on stroke survivors’ functioning and how needs are perceived in the long term after stroke. Methods: Semi-structured interviews were conducted with 35 participants between 1 and 11 years after stroke. Data were analysed thematically using the ICF conceptual framework. Results: Long-term needs related to activities of daily living, social participation, mobility aids, home adaptations, housing, financial support, rehabilitation, information and transport. Participants identified a range of ICF environmental and personal factors including ‘support and relationships,’ ‘products and technology,’ ‘services, systems and policies,’ ‘attitudes,’ life experiences, social position and personal attitudes. Interactions between these contextual factors shaped functioning and how long-term needs were perceived. Social support from family and friends was a key facilitator of functioning for most participants, buffering the impact of disabilities and mediating perceived needs. Needs were not always stroke specific as many participants experienced other health problems. Discussion: The ICF framework was useful to investigate how contextual factors shaped functioning and mediated perceived long-term needs. Development of services to meet long-term needs among stroke survivors should consider the range of environmental and personal factors affecting how needs are perceived.

What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence

Primary cutaneous T‐cell lymphoma (CTCL) is progressive, can cause significant symptoms, and impacts on quality of life. Therefore supportive and palliative care might have a role in the care of patients and families.

'We're all carrying a burden that we're not sharing': A qualitative study of the impact of cutaneous T-cell lymphoma on the family

Cutaneous T‐cell lymphoma (CTCL) is a rare, progressive cancer that can be life limiting and highly disfiguring. Patients with CTCL experience poor quality of life; however, there is little published about the experiences of their families.

‘We had to change to single beds because I itch in the night’: a qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T‐cell lymphoma

Primary cutaneous T‐cell lymphoma (CTCL) is a rare but prevalent condition which can have a significant impact on many aspects of quality of life. However, there is little evidence of patients’ lived experience of CTCL.

Interprofessional enhanced skills training in periodontology: a qualitative study of one London pilot

OBJECTIVES/AIMS:Health Education England (HEE) London developed an innovative 2-year pilot educational and training initiative for enhancing skills in periodontology for dentists and dental hygienists/therapists in 2011. This study explores the perceptions and experiences of those involved in initiating, designing, delivering and participating in this interprofessional approach to training.MATERIALS AND METHODS:Semi-structured qualitative interviews were conducted with a purposive sample of key stakeholders including course participants (dentists and dental hygienists and/or therapists), education and training commissioners, and providers towards the end of the 2-year programme. Interviews, based on a topic guide informed by health services and policy literature, were audio-recorded and transcribed verbatim. Data were analysed based on framework methodology, using QSR NVivo 9 software to manage the data.RESULTS:Twenty-two people were interviewed. Although certain challenges were identified in designing, and teaching, a course bringing together different professional backgrounds and level of skills, the experiences of all key stakeholders were overwhelmingly positive relating to the concept. There was evidence of ‘creative interprofessional learning’, which led to ‘enhancing team working’, ‘enabling role recognition’ and ‘equipping participants for delivery of new models of care’. Recommendations emerged with regard to future training and wider health policy, and systems that will enable participants on future enhanced skills courses in periodontology to apply these skills in clinical practice.CONCLUSION:The interprofessional approach to enhanced skills training in periodontology represents an important creative innovation to build capacity within the oral health workforce. This qualitative study has provided a useful insight into the benefits and tensions of an interprofessional model of training from the perspectives of different groups of key stakeholders and suggests its application to other areas of dentistry.

“It's a traumatic illness, traumatic to witness.” A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma

Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement.

失去亲人的 CTCL 患者的家庭照护者经历

皮肤 T‐细胞淋巴瘤 (CTCL) 是一种罕见的皮肤癌类型。皮肤可能会发生肿瘤或溃疡。有时这些肿瘤或溃疡可能会覆盖相当大的区域并让人感到发痒或不舒服。在更晚期的疾病中, 内部身体部位可能会受到影响。每年只有少数人得到诊断(每百万人中有 8 人), 因此大多数全科医生 (GP) 都不会遇到患有这种疾病的人。这项来自英国的研究旨在了解因此疾病死亡者的家人或亲密朋友的经历(并非所有患有这种疾病的人都死于此疾病)。11 例死亡的 CTCL 患者的亲属接受了访谈, 访谈是在患者死亡后 4 个月或更长时间以后进行的。对他们所说的主题进行了叙述。家庭成员生动地描述了疾病如何改变了他们亲属的外表。他们谈到了照顾皮肤受损的人是多么困难。他们描述了他们在医院和家中照顾亲人时必须做的许多不同的事情。一些患者经常进出医院。有的照护者期望他们每次都能回家,所以当他们的亲戚去世时他们感到毫无准备。一些照护者描述, 看到他们的亲属去世前疾病对其造成的影响是多么令人沮丧。作者认为,应该将家庭照护者视为照顾病人的护理团队的一部分。他们建议, 在每位患者患病期间, 应考虑照护者对实际和情感支持以及信息的需求。在亲属去世后也应提供对照护者的支持。