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Patient and carer input and the NHS: a vital tool in improving care

In every other industry, 'the customer is king' - so why should health care be any different? With reference to the Department of Health's newly published legislation, Real Accountability Guidance on the NHS duty to report on consultation, the author examines the importance of patient and carer input into NHS services. 

Thu, 07/20/2017 - 15:19

Internet interventions can meet the emotional needs of patients and carers managing long-term conditions

Experiencing and managing a long-term condition places heavy emotional demands on a patient or carer. We conducted disease-specific focus groups for patients or carers. We recruited adults with diabetes, heart disease or hepatitis C, parents of children with asthma or diabetes, and carers of people with Alzheimer's disease. Participants had sole access to a PC and were asked to use three Internet interventions, each for 30 min. We conducted 10 disease-specific focus groups in three areas of the UK, involving a total of 40 participants.

Thu, 07/20/2017 - 15:19

Bite-size guides to patient and public participation: guide 2: governance for participation

This guide sets out key principles to ensure that patient, carer and public voices are included in governance frameworks for commissioning and service development in the NHS and health care services. It also includes practical steps to put these principles in place and contains links to supporting material. The guide is based on a review of research, best practice reports and the views of stakeholders. It aims to support clinical commissioning groups and others to plan and deliver good patient and public participation. One of four guides developed by NHS England with their partners.

Thu, 07/20/2017 - 15:19

Lung cancer health care needs assessment: patients' and informal carers' responses to a national mail questionnaire survey

The objective of this study was to describe patients' and informal carers' perceptions of care received and services offered following a diagnosis of primary lung cancer. We prepared a prospective, national, mail questionnaire survey of 466 patients with a diagnosis of primary lung cancer and a lay carer of their choice. The setting was 24 randomly chosen hospitals throughout the UK, from a range of urban (n = 11) and rural settings (n = 13). The majority (76%/159) of responders were recipients of care from cancer units.

Thu, 07/20/2017 - 15:19

Understanding social support for patients with cancer

This article considers some of the dimensions of social support that can impact on the quality of life of people with cancer, their carers and their family. The article concentrates on emotional support, information support and tangible support.

Thu, 07/20/2017 - 15:19

Making it clear and relevant: patients and carers add value to studies through research document reviews

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process.

Thu, 07/20/2017 - 15:19

myShoes - the future of experiential dementia training?

Purpose – The purpose of this paper is to discuss the use of virtual reality (VR) for experiential learning in dementia training. People have different perceptions and understanding of what it is like to live with dementia, particularly those that are new to dementia care, whether in a professional capacity, or as a friend or family member. Arguably the most powerful way in which to enhance understanding is to give people a glimpse of what living with dementia might be like.

Thu, 07/20/2017 - 15:18

Hidden patients: The relatives of patients in need of palliative care

Background: When identifying patients for palliative care, medical specialists find it necessary to disclose “hidden” patients: the patient's relatives. The issue has been discussed sporadically in Bulgaria; the present study was part of a larger investigation that examined the opinion of medical specialists, patients, and their relatives.

Thu, 07/20/2017 - 15:18

The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

BACKGROUND: Studies on emotional distress and health-related quality of life (HRQOL) broadened the traditional bio-medical focus in MS research, but little attention was paid to general well-being indicators.

OBJECTIVE: To investigate for the first time both ill-being and well-being dimensions in persons with MS (PwMSs), caregivers and health professionals, in relation to both health and life in general.

Thu, 07/20/2017 - 15:18

The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitatitve exploration of family carer and health professional experiences

Background: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.

Aim: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation.

Thu, 07/20/2017 - 15:18

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