scholarly journals Using telemonitoring to support personal care planning for adults with learning disabilities

2018 ◽  
Vol 25 (10) ◽  
pp. 602-610 ◽  
Author(s):  
George Bramley ◽  
Catherine Mangan ◽  
Mervyn Conroy
Keyword(s):  
Learning Disabilities ◽  
Online Survey ◽  
Theory Of Change ◽  
Care Planning ◽  
Residential Setting ◽  
Care Providers ◽  
Care Managers ◽  
Before And After ◽  
Adults With Learning Disabilities ◽  
Just Right

IntroductionWe report on an evaluation of the Just Right approach for planning care for adults with learning disabilities and how it can support culture change. Just Right combines installing a telemonitoring system with training for care managers in person-centred care planning and the interpretation of charts that summarise activity data for their setting. By providing insights into the needs of individuals Just Right allows existing care provision to be reviewed to ensure it is ‘just right’. The Just Right approach can also potentially identify over-care and resources that can released.MethodsA mixed-methods approach was used, triangulating qualitative and quantitative baseline and follow-up data. Qualitative data were collected before and after implementation from focus groups on barriers, enablers, success outcomes and impacts. A theory of change was developed. Detailed data on individual adults with learning disabilities were collected before and after installation of equipment using a linked online survey completed by their care managers.ResultsNine commissioning local authorities were recruited with 33 care providers serving 417 adults with learning disabilities. Issues relating to implementation included staff acceptance, culture, consent, safeguarding, local authority engagement, interpretation of data and residential setting. Changes to care were identified for 20.3% of individuals, with 66% of providers not identifying any changes because Just Right confirmed that they were providing the right level of support.DiscussionBy combining telemonitoring and person-centred care planning, Just Right provides a holistic approach and necessary information for conversations amongst stakeholders about the care needs of adults with learning disabilities. Depending on how it is introduced, and the nature of conversations held, the Just Right approach can potentially change culture, leading to improved outcomes.

Healing touch: Using the arts to increase healthy touch between people with PMLD and their carers

2021 ◽  
Vol 12 (1) ◽  
pp. 73-85
Author(s):  
Leonie Elliott-Graves
Keyword(s):  
Learning Disabilities ◽  
Performing Arts ◽  
Well Being ◽  
Pilot Project ◽  
Care Staff ◽  
Service Users ◽  
Care Providers ◽  
Healing Touch ◽  
Adults With Learning Disabilities ◽  
Positive Touch

For adults with learning disabilities, touch is a necessary element of their everyday care. Yet touch delivered by care providers is a contentious and marginal practice, which is often avoided due to fears of abuse allegations, and the effects of touch avoidance can be significantly detrimental to the quality of care provided. The Safe Touch pilot project, developed with a London-based organization providing care to adults with learning disabilities, including those with profound and multiple learning disabilities (PMLD), used performing arts practices and massage to help the staff develop and utilize ‘positive’ touch – touch for communication, interaction and well-being – when working with service users. Fifteen service users with learning disabilities and PMLD along with the organization’s staff participated in the project. Drawing on the project’s processes and findings, some successes and limitations in employing performing arts activities with care staff to increase the use of positive touch with people with PMLD were identified.

Perspectives of Health-Care Providers Toward Advance Care Planning in Patients With Advanced Cancer and Congestive Heart Failure

2016 ◽  
Vol 34 (5) ◽  
pp. 423-429 ◽  
Author(s):  
Manisha Chandar ◽  
Bruce Brockstein ◽  
Alan Zunamon ◽  
Irwin Silverman ◽  
Sarah Dlouhy ◽  
...  
Keyword(s):  
Heart Failure ◽  
Congestive Heart Failure ◽  
Advance Care Planning ◽  
Online Survey ◽  
Analysis Tool ◽  
Care Planning ◽  
Care Providers ◽  
Major Barrier ◽  
Medical Diagnoses ◽  
Advance Care

Background: Advance care planning (ACP) discussions afford patients and physicians a chance to better understand patients’ values and wishes regarding end-of-life care; however, these conversations typically take place late in the course of a disease. The goal of this study was to clarify attitudes of oncologists, cardiologists, and primary care physicians (PCPs) toward ACP and to identify persistent barriers to timely ACP discussion following a quality improvement initiative at our health system geared at improvement in ACP implementation. Methods: A 20-question, cross-sectional online survey was created and distributed to cardiologists, oncologists, PCPs, and cardiology and oncology support staff at the NorthShore University HealthSystem (NorthShore) from February to March 2015. A total of 117 individuals (46% of distributed) completed the surveys. The results were compiled using an online survey analysis tool (SurveyMonkey, Inc., Palo Alto, California, USA). Results: Only 15% of cardiologists felt it was their responsibility to conduct ACP discussions with their patients having congestive heart failure (CHF). In contrast, 68% of oncologists accepted this discussion as their responsibility in patients with terminal cancer ( P < .01). These views were mirrored by PCPs, as 68% of PCPs felt personally responsible for ACP discussion with patients having CHF, while only 34% felt the same about patients with cancer. Reported documentation of these discussions in the electronic health record was inconsistent between specialties. Among all surveyed specialties, lack of time was the major barrier limiting ACP discussion. Perceived patient discomfort and discomfort of the patient’s family toward these discussions were also significant reported barriers. Conclusion: Attitudes toward ACP implementation vary considerably by medical specialty and medical condition, with oncologists in this study tending to feel more personal responsibility for these discussions with patients having cancer than cardiologists with their patients having heart failure. Robust implementation of ACP across the spectrum of medical diagnoses is likely to require a true collaboration between office-based PCPs and specialists in both the inpatient and the ambulatory settings.

Anxiety and Social Adjustment Problems in Adults With Learning Disabilities

2011 ◽  
Author(s):  
Philip J. Uy ◽  
Ren Krinick ◽  
Lana A. Tiersky ◽  
Nuri Ruzi ◽  
Mitchell Slugh
Keyword(s):  
Learning Disabilities ◽  
Social Adjustment ◽  
Adjustment Problems ◽  
Adults With Learning Disabilities

Association between religious beliefs and discussions regarding advance care planning: A nationwide survey

2021 ◽  
pp. 026921632110295
Author(s):  
Jun Miyashita ◽  
Sayaka Shimizu ◽  
Shunichi Fukuhara ◽  
Yosuke Yamamoto
Keyword(s):  
Health Care Providers ◽  
Advance Care Planning ◽  
Religious Beliefs ◽  
Nationwide Survey ◽  
Care Planning ◽  
Care Providers ◽  
Logistic Regression Models ◽  
Japanese Buddhism ◽  
Advance Care ◽  
Quota Sampling

Background: The relationship between advance care planning and religious beliefs, which are important for palliative care, is controversial in Western countries and has not been verified in Asian countries. Aim: To investigate the association between advance care planning discussions and religious beliefs in Japan. Design: A nationwide survey conducted in 2016 using a quota sampling method to obtain a representative sample of Japan’s general population. Setting/participants: We analyzed responses from 3167 adults aged 20–84 years (mean age ± standard deviation, 50.9 ± 16.8 years). The outcome was measured by asking whether the respondents had ever discussed advance care planning, and the main exposure by whether they had any religious beliefs or affiliations, and if so, their degree of devoutness. We analyzed religious beliefs, affiliations, and devoutness in relation to the occurrence of discussions using multivariable logistic regression models adjusted for possible sociodemographic covariates. Results: Compared with respondents without, those with religious beliefs had significantly higher odds of having had discussions (adjusted odds ratio: 1.45, 95% confidence interval: 1.22–1.73). The devoutness of religious belief was proportional to the propensity of the occurrence of discussions ( p for trend < 0.001). In addition, Buddhists and Christians had higher odds of having had discussions than did nonbelievers. Conclusion: The results suggest that holding religious beliefs, especially in Japanese Buddhism and Christianity, facilitates advance care planning discussions among Japanese adults, and thus, may help health-care providers identify those prioritized for facilitating engagement in advance care planning, especially in palliative and spiritual care settings.

scholarly journals Caregiver Burden: Caregiving Workshops Have a Positive Impact on Those Caring for Individuals With Dementia in Arkansas

2021 ◽  
Vol 8 ◽  
pp. 237437352110180
Author(s):  
Robin E. McAtee ◽  
Laura Spradley ◽  
Leah Tobey ◽  
Whitney Thomasson ◽  
Gohar Azhar ◽  
...  
Keyword(s):  
Caregiver Burden ◽  
Health Care Providers ◽  
Positive Impact ◽  
Educational Programs ◽  
Vital Role ◽  
Complex Care ◽  
Care Providers ◽  
Dementia Caregivers ◽  
Before And After ◽  
Burden Scale

Millions of Americans live with dementia. Caregivers of this population provide countless hours of multifaceted, complex care that frequently cause unrelenting stress which can result in immense burden. However, it is not fully understood what efforts can be made to reduce the stress among caregivers of persons with dementia (PWD). Therefore, the aim of this pretest–posttest designed study was to evaluate changes in caregiver burden after providing an educational intervention to those caring for PWD in Arkansas. Forty-one participants completed the Zarit Caregiver Burden Scale before and after attending a 4-hour dementia-focused caregiving workshop. The analysis of the means, standard deviations, and paired t tests showed that there was an increase in the confidence and competence in caring for PWD 30 to 45 days after attending the workshop. Health care providers need to understand both the vital role caregivers provide in managing a PWD and the importance of the caregiver receiving education about their role as a caregiver. Utilizing caregiver educational programs is a first step.

Commentary on “Diabetes and people with learning disabilities: issues for policy, practice and education”

2020 ◽  
Vol 25 (1) ◽  
pp. 35-39 ◽  
Author(s):  
Brianne Redquest ◽  
Yona Lunsky
Keyword(s):  
Health Care ◽  
Learning Disabilities ◽  
Health Care Providers ◽  
Diabetes Care ◽  
Future Research ◽  
Care Providers ◽  
Family Carers ◽  
Content Type ◽  
Policy Practice

Purpose There has been an increase in research exploring the area of intellectual and developmental disabilities (IDD) and diabetes. Despite being described as instrumental to diabetes care for people with IDD, the role and experiences of family carers, such as parents and siblings, are often neglected in this research. However, it is clear that family carers do not feel that they have sufficient knowledge about diabetes. The purpose of this commentary is to extend the content from “Diabetes and people with learning disabilities: Issues for policy, practice, and education (Maine et al., 2020)” and discuss how family carers can feel better supported when caring for someone with IDD and diabetes. Design/methodology/approach This commentary discusses specific efforts such as STOP diabetes, DESMOND-ID and OK-diabetes for people with IDD including family carers. Encouragement is given for health care providers to recommend such programmes to people with IDD and their family carers. It is also suggested that health care providers involve family carers in diabetes care planning and implementation for people with IDD. Findings It is hoped that if changes are made to current diabetes practices and more research with family carers is conducted, diabetes prevention and management for people with IDD will be more successful and family carers can feel more confident in providing support to their loved ones. Originality/value Research exploring the role of family carers in diabetes care for people with IDD and diabetes is very limited. This commentary makes recommendations to help family carers feel better supported in their role. It also provides areas for future research.

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