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Deaths of people with learning disabilities from COVID-19
- Author:
- HESLOP Pauline
- Publisher:
- University of Bristol
- Publication year:
- 2020
- Pagination:
- 44
- Place of publication:
- Bristol
This report describes the circumstances leading to death for a representative sample of 206 adults with learning disabilities. The majority of the 206 deaths (79%, n=163) were attributable to COVID-19: 27% of the total number of COVID-19 deaths notified to the LeDeR programme from 2nd March 2020 – 9th June 2020. Forty-three (21%) of the 206 deaths were attributed to other causes and are included as a comparator group – 6% of the total deaths from other causes occurring during this period. The study finds that there is a striking difference in age at death between COVID-19 deaths in the general population compared with people with learning disabilities. In the general population of England and Wales, 47% of deaths from COVID-19 were in people aged 85 years and over. Of all deaths of people with learning disabilities from COVID-19 notified to the LeDeR programme, just 4% were aged 85 years and over. A third (35%) of those who died from COVID-19 lived in residential care homes, rising to almost half of those with Down’s syndrome. A quarter (25%) lived in supported living settings. Priority must be given to supporting measures to prevent the spread of COVID-19 in these settings. People who died from COVID-19 were more frequently reported to have respiratory conditions (72%), compared to those who died from other conditions (60%). Access to healthcare that was problematic for some people who died from COVID-19 included: the responsiveness of NHS111; access to COVID-19 tests; and access to specialist learning disability nurses. Ensuring that these services are fully accessible to people with learning disabilities, their families and paid carers would improve service provision. (Edited publisher abstract)
Making a difference: the impact of the Confidential Inquiry into premature deaths of people with learning disabilities
- Author:
- HESLOP Pauline
- Journal article citation:
- British Journal of Learning Disabilities, 43(2), 2015, pp.142-149.
- Publisher:
- Wiley
The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) was commissioned by the Department of Health in England in 2010 to investigate the avoidable or premature deaths of people with learning disabilities through retrospective reviews of deaths. Both the process of conducting CIPOLD and the findings of the study itself made an impact on the way in which professionals thought about issues relating to people with learning disabilities and led to changes in policy and practice. Much of the impact of CIPOLD came from arming practitioners, family carers, people with learning disabilities and policy makers with the research findings and encouraging them to take on the mantle of change from there, for example, by increasing the provision of training or reviewing their current practice. There were a number of challenges that the research team faced. First, they needed to ensure the assiduous recording of any impact that took place throughout the duration of the research and beyond. Secondly, they were careful to make sure that as far as possible, professionals were involved and that it was a learning experience for them from which they had something to gain. Thirdly, self-reflexivity on the part of the research team was required in order for them to understand where their own strengths and limitations lay. (Publisher abstract)
Supporting people with learning disabilities who self-injure
- Author:
- HESLOP Pauline
- Journal article citation:
- Tizard Learning Disability Review, 16(1), January 2011, pp.5-15.
- Publisher:
- Emerald
Despite large amounts of research conducted on self-injury in people with learning disabilities, little has addressed the perspectives of those with disabilities, and what they view as most helpful. This article, citing results from the Hidden Pain project which examined the views of those with learning disabilities on their self-injury, reports on the support that people with learning disabilities who self-injure say they have found, or would find, helpful in relation to their self-injury. Themes that emerged from people with learning disabilities, including those who use little or no verbal communication, is that they want opportunities to communicate their feelings and to be listened to. The paper concluded that being open to listening and developing one's own communication skills was essential for supporters of people with learning disabilities who self-injure to help this group.
Good practice in befriending services for people with learning difficulties
- Author:
- HESLOP Pauline
- Journal article citation:
- British Journal of Learning Disabilities, 33(1), March 2005, pp.27-33.
- Publisher:
- Wiley
Despite the growing trend for the development of befriending services, there is a paucity of research about the views of people involved with these services and the effectiveness of service provision. This article describes some of the views and experiences of paid workers, volunteer befrienders, service users (befriendees) and family carers involved with seven befriending services for children and/or adults with learning difficulties in England. Although each of the befriending services shared the broad purpose of increasing the friendship circles of the befriendees, their aims and the ways in which they worked, differed considerably. The focus of the article is on some of the key issues that the befriending services faced, factors that were found to contribute to good practice within befriending services and recommendations for good practice.
Quality measures for befriending services
- Author:
- HESLOP Pauline
- Publisher:
- Shared Care Network
- Publication year:
- 2004
- Pagination:
- 62p.
- Place of publication:
- Bristol
To date, there has been a lack of research evidence about the effectiveness of befriending services and little guidance about what good practice should entail.This is despite a proliferation in befriending services, their growing popularity and government recognition of their importance to families of disabled children. Key areas include; the aims of the service, publicising the service, referrals, assessment , training, matching befrienders to befriendees, support and supervision arrangements, serviceuser involvement, resources, policies, breaks and endings and evaluation.
Breaking news
- Author:
- HESLOP Pauline
- Journal article citation:
- Community Care, 13.11.03, 2003, p.36.
- Publisher:
- Reed Business Information
Reports on a study of how short-break services can prioritise children's views and give their families respite from caring.
Deaths of people with intellectual disabilities: analysis of deaths in England from COVID-19 and other causes
- Authors:
- HESLOP Pauline, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(6), 2021, pp.1630-1640.
- Publisher:
- Wiley
Background: People with intellectual disabilities experience significant health inequities. The aim of this report is to understand the circumstances leading to death from COVID-19 in people with intellectual disabilities. Method: Local areas in England prioritised reviewing 200 deaths of adults with intellectual disabilities. Of these, approximately 80% were required to be deaths from suspected or confirmed COVID-19 as this was the focus of the study; the remainder from other causes. All deaths occurred between 2 March2020 and 9 June 2020. Results: People with intellectual disabilities differed from the general population in their symptoms of COVID-19 and age at death. The overall quality of care was rated similar to other deaths of people with intellectual disabilities. Concerns were raised relating to recognising acute deterioration and do not attempt cardio-pulmonary resuscitation decisions. Conclusions: Service improvements are indicated in the ways in which people with intellectual disabilities encounter COVID-19 and experience the disease. (Edited publisher abstract)
Mellow Futures - an adapted parenting programme for mothers with learning difficulties in England and Scotland. Professionals' views on the outcomes
- Authors:
- TARLETON Beth, HESLOP Pauline
- Journal article citation:
- Health and Social Care in the Community, 29(5), 2021, pp.1275-1284.
- Publisher:
- Wiley
The Mellow Futures programme is a specially adapted parenting programme for mothers with learning difficulties that combines group work with home-based support. This paper reports on the findings of prospective and retrospective interviews with professionals who had referred mothers to the programme in England or Scotland between 2013 and 2015. The aim was to explore their perceptions of the programme as a whole, and its impact on the mothers they had referred to it. Mothers attending the Mellow Futures programme were invited to consent for a key professional to be contacted as part of the evaluation, generally those social workers who had referred the mothers to the programme. The ‘referrers’ were interviewed at the start and end of the programme. Thirty referrers contributed their views on the impact of the programme. Twenty-six were very positive about the impact of the Mellow Futures programme on the mothers: the programme was thought to have increased the mothers' confidence and self-esteem; supported them to work through issues; and helped them strengthen their relationship-building skills. Four referrers felt that the programme had not had any impact on the mothers they were supporting. The Mellow Futures programme focused on relationships, rather than parenting techniques, and three fundamentally important relationships in the mothers and babies' lives were targeted: the relationship/attachment between mother and baby; the supportive, ongoing relationships between the mothers in the group; and the mothers' more positive engagement with the professionals concerned with the welfare of their baby. The research confirms that, from the perspectives of referrers, linking group and home-based support can successfully help mothers with learning difficulties to care for their children. (Edited publisher abstract)
Learning Disability Mortality Review (LeDeR) Programme: annual report 2020
- Authors:
- HESLOP Pauline, et al
- Publisher:
- University of Bristol
- Publication year:
- 2021
- Pagination:
- 156
- Place of publication:
- Bristol
This report focuses on findings from completed reviews of the deaths of people with learning disabilities that occurred in the calendar years 2018, 2019 and 2020, identifying any trends that have occurred over time, and considering implications for service improvement. The analysis covers: deaths occurring in 2018, 2019 and 2020 16; demographic information about people who died 2018-2020; age at death and its potential influences; cause of death; circumstances of deaths; indicators of the quality of care provided; deaths of people from minority ethnic groups; deaths from COVID-19 in 2020. A total of 9,110 deaths of people with learning disabilities (622 deaths of children; 8,488 deaths of adults) occurring between 1st Jan 2018 and 31st December 2020 were notified to the LeDeR programme. In 2018 and 2019, for both males and females, the leading condition-specific underlying causes of death were very different for people with learning disabilities compared to the general population. Cerebral palsy, epilepsy and bacterial pneumonia were the condition-specific leading causes of death in people with learning disabilities age ages 5- 49 years. By contrast, in the general population, the condition-specific leading causes of deaths at these ages were related to suicide and injury or poisoning of undetermined intent; for females aged 35-49 it was malignant neoplasm of the breast. In 2020, the condition-specific leading cause of death in people with learning disabilities from age 35 and over for males, and age 20 and over in females was COVID-19. (Edited publisher abstract)
Power in research relationships: engaging mothers with learning difficulties in a parenting programme evaluation
- Authors:
- TARLETON Beth, HESLOP Pauline
- Journal article citation:
- Qualitative Social Work, 19(5-6), 2020, pp.951-967.
- Publisher:
- Sage
There are significant ethical considerations when engaging with the participants of a service evaluation study. These include the potential impact of the findings of the evaluation on the lives of those in receipt of the service. The importance of researcher reflexivity in these circumstances is vital. This paper describes one researcher’s reflections about their own engagement with participants of an evaluation of a parenting course. The potential contributors to the evaluation of the course, that are the focus of this paper, were 18 mothers with learning difficulties. All had been referred to the course because of concerns about their parenting capacity or the welfare of their child. The power dynamics in the interactions between the researcher and the participants existed on a number of levels. The starting point was an asymmetrical power relation with the researcher defining the scope, content and conduct of the evaluation. Efforts to engage with the participants included trying to remodel some of this power and minimise the distance and separateness between each party. The parents too had some power, by using the interviews as a therapeutic space, providing socially desirable accounts or ultimately jeopardising the evaluation of the programme by refusing to participate. In this unique context, the power relationships were dynamic and inter-linked, feeling like a dance between active agents within the negotiations. Elements of Tew’s (2006) conceptual framework of ‘productive’ and ‘limiting’ modes of power were both in evidence and likely to have influenced the findings of the evaluation. (Edited publisher abstract)