A5016155189- Palliative Care and End-of-Life Issues
- Down syndrome and intellectual disability research
- Family and Disability Support Research
- Healthcare innovation and challenges
- Childhood Cancer Survivors' Quality of Life
- Geriatric Care and Nursing Homes
- Chronic Disease Management Strategies
- Patient Dignity and Privacy
- Family Support in Illness
- Adolescent and Pediatric Healthcare
- Elder Abuse and Neglect
- Healthcare Decision-Making and Restraints
- Family and Patient Care in Intensive Care Units
- Emergency and Acute Care Studies
- Intergenerational Family Dynamics and Caregiving
- Patient-Provider Communication in Healthcare
- Healthcare Policy and Management
- Child and Adolescent Health
- Frailty in Older Adults
- Ethics and Legal Issues in Pediatric Healthcare
- Disability Rights and Representation
- Grief, Bereavement, and Mental Health
- Retirement, Disability, and Employment
- Genetics and Neurodevelopmental Disorders
- Clinical practice guidelines implementation
Kingston University
2016-2025
Kingston University
2015-2024
St George's, University of London
2014-2023
Health Education England
2023
University of London
2008-2022
Maastricht University Medical Centre
2012-2016
The King's College
2015
St George's Hospital
2002
Trinity House
1997-1998
Objective To identify the factors that promote and compromise implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals. Design A mixed-methods study involving interviews, questionnaires participant observation (July 2011–March 2013). Setting Six NHS hospital trusts England. Methods Reasonable adjustments people were identified through literature. Data collected on staff understanding these...
Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing patient; (d) lack a reasonable alternative; (e) independent second physician's opinion. 'Unbearable suffering' must medical basis, either somatic or psychiatric, but there is no requirement limited life expectancy. All EAS...
Abstract Background People with intellectual disabilities are less likely to have access palliative care, and the evidence shows that their deaths often unanticipated, unplanned for, poorly managed. Within general population, people from minoritised ethnic groups under-represented within care services. End-of-life planning may be a way address these issues. There is huge gap in regarding intersectionality of disability ethnicity end-of-life planning. This study explored characteristics...
Abstract Title. Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end‐of‐life care provision Aim. This paper is a report study using as method elicit sensitive issues, in this example provision. Background. Establishing consumer essential providing appropriate care, yet have historically been excluded from giving their opinion and participating research. Methods. was used three groups, total 14 participants who had mild moderate disabilities....
Background: People with intellectual disabilities often present unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for of people in Europe. Design: Delphi study four rounds: (1) a taskforce 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 18 evaluated draft provided feedback distributed survey within professional...
Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve in end-of-life care planning. Aim: To explore the perspectives disabilities, families, health social professionals policy makers on planning within disability services. Design: A total 11 focus groups 1 semi-structured interview were analysed using qualitative framework matrix analysis. The analysis was conducted inclusively co-researchers disabilities....
People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about processes of involving people more intellectual and analytical stages process.To examine potential contribution to data analysis qualitative research.This article a reflection on one experience. The two authors include researcher without disabilities. They each describe their experience understanding user involvement analysing an ethnographic study...
While end-of-life decisions in the general population have received attention several countries, not much is known about this people with intellectual disabilities (IDs). Therefore, prevalence and nature of were investigated a Dutch centre providing residential care for 335 IDs.A retrospective study medical files who died between January 2002 July 2007.One or more taken 27 out 47 cases. A non-treatment decision was seven residents, possibly shortening life expectancy some The family involved...
Objectives: To develop a model for breaking bad news that meets the needs of people with intellectual disabilities (IDs). Design: A two-phase qualitative study featuring: (I) focus group meetings, on-line groups and one-to-one interviews; (II) structured feedback from participants other stakeholders. Setting: Participants were drawn National Health Service hospitals, Primary Care Trusts, independent organisations forums across England. Participants: 109 purposively selected: 21 mild/moderate...
Background There has been consistent evidence that people with learning disabilities experience health inequalities and poor NHS health-care provision, leading to avoidable harm premature, death. Objectives To describe the factors in hospitals promote or compromise a safe environment for patients disabilities, light of national recommendations should (1) identify (2) provide reasonably adjusted services, (3) involve carers as partners care (4) include patient carer views service development....
<h3>Introduction</h3> Challenges in providing Palliative and End-Of-Life Care (PEOLC) for people with learning disabilities include communication difficulties, lack of decision-making involvement, limited staff experience. Inequalities need addressing to provide optimal PEOLC this population. <h3>Aims</h3> To improve quality accessibility by producing guidance health social care services. <h3>Methods</h3> DAPPLE is a co-produced project, involving diverse team academics (including...
ABSTRACT Background People with intellectual disabilities are rarely involved in end‐of‐life decisions. This study investigated and further developed approaches resources to enable inclusive care planning. Methods A multi‐centre, multi‐method four‐phase study, involving 195 researchers, participants, advisors co‐design members, including 36 people disabilities: (i) evidence review; (ii) stakeholder focus groups; (iii) Experience‐Based Co‐Design (iv) testing of co‐designed resources. Results...
Accessible summary We have done research about cancer, death and dying. People with learning disabilities who had cancer were in our studies. This paper is making sure that ethical . means we don’t want to cause any harm (or make people upset) when do the research. ask: How find be studies? What should if cannot understand they are in? not us use a made‐up name writing? if, during research, see treated right? relationship researcher? Is researcher nurse, helper or friend? Summary There has...
Cancer incidence among people with learning disabilities is rising. There have been no published studies of the needs and experiences cancer, from their own perspective.
Abstract Background Most staff working in intellectual disability services will be confronted with people disabilities who need support around death, dying and bereavement. Previous studies suggest that tend to protect clients from knowing about death avoid communication death. The aims of this study were gain further insight into the individual, organisational contextual factors affect death‐related bad news by develop guidelines for enable appropriate dying. Method Semi‐structured...
Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as the availability research resources, including expertise funding. This paper describes a consultation process that sought to develop an agenda for priorities in Europe. A two-day workshop was convened, attended by 16 academics clinicians field disability from six European countries. The first day consisted round-table presentations discussions about current state...
Abstract Background Older people with intellectual disabilities and their families report a lack of support for planning parental death transitions in care. This article aims to demonstrate the process co‐designing resources older plan future. Methods Following interviews focus groups families, we used an adapted experience‐based co‐design develop ahead resources. included ‘trigger film’ summarising findings from earlier interview study, 12 workshops user feedback phase. Results The group...
Background There is insufficient evidence to guide decisions around (non‐)disclosure of bad news life‐limiting illness and death people with intellectual disabilities. Aim The aim this study was develop guidelines for about disabilities, by examining stakeholders' preferences (and reasons) disclosure non‐disclosure. Materials methods Focus groups interviews were held 109 participants: family carers, disabilities professionals medical healthcare professionals. Results People had wide‐ranging...