scholarly journals Mainstream Health Care for Adults with Intellectual Disability due to Rare Causes

2021 ◽  
Vol 4 (2) ◽  
Author(s):  
Wallace Robyn A
Keyword(s):  
Health Care ◽  
Intellectual Disability

scholarly journals People with an intellectual disability in the discourse of chronic and complex conditions: an invisible group?

2008 ◽  
Vol 32 (3) ◽  
pp. 405 ◽  
Author(s):  
Linda Goddard ◽  
Patricia M Davidson ◽  
John Daly ◽  
Sandra Mackey
Keyword(s):  
Health Care ◽  
Intellectual Disability ◽  
Chronic Conditions ◽  
Health Professions ◽  
Disability Services ◽  
Complex Care ◽  
Competency Development ◽  
Care Needs ◽  
Complex Care Needs ◽  
Respiratory Conditions

People with an intellectual disability and their families experience poorer health care compared with the general population. Living with an intellectual disability is often challenged by coexisting complex and chronic conditions, such as gastrointestinal and respiratory conditions. A literature review was undertaken to document the needs of this vulnerable population, and consultation was undertaken with mothers of children with disabilities and with professionals working within disability services for people with an intellectual disability and their families. Based on this review, there is a need to increase the profile of people with an intellectual disability in the discourse surrounding chronic and complex conditions. Strategies such as guideline and competency development may better prepare health professions to care for people with disabilities and chronic and complex care needs and their families.

Pediatric Neurologists’ Perspectives on Sexual and Reproductive Health Care for Adolescent and Young Adult Women With Epilepsy and Intellectual Disability

2021 ◽  
pp. 088307382110418
Author(s):  
Laura Kirkpatrick ◽  
Amy Collins ◽  
Elizabeth Harrison ◽  
Elizabeth Miller ◽  
Christina Patterson ◽  
...  
Keyword(s):  
Health Care ◽  
Intellectual Disability ◽  
Reproductive Health ◽  
Sexual And Reproductive Health ◽  
Adolescent And Young Adult ◽  
Adult Women ◽  
Provider Training ◽  
Health Counseling ◽  
Reproductive Health Care ◽  
Adolescent Women

Objective: To explore perspectives of pediatric neurologists regarding sexual and reproductive health care for adolescent women with epilepsy (WWE) and intellectual disability. Methods: We interviewed pediatric neurologists regarding sexual and reproductive health for WWE with intellectual disability. We audio-recorded and transcribed interviews and conducted qualitative analysis. Results: 16 pediatric neurologists participated. Themes included the following: (1) Pediatric neurologists have differing perspectives about how intellectual disability affects WWE’s sexual and reproductive health needs, (2) pediatric neurologists provide sexual and reproductive health counseling variable in content and frequency to this population, (3) pediatric neurologists tend to recommend longer-term methods of contraception for this population, and (4) pediatric neurologists are asked to be involved in decision-making around sterilization, yet express ethico-legal reservations. Conclusion: Our findings suggest pediatric neurologists provide variable, often suboptimal, sexual and reproductive health care for WWE and intellectual disability. Themes reveal ethical concerns among neurologists about sexual and reproductive health practices including sterilization. More tailored clinical guidelines and provider training on sexual and reproductive health for this population may be beneficial.

Health Care Decision Making and Adults with Intellectual Disability: A Descriptive Survey

2012 ◽  
Vol 3 (1) ◽  
pp. 8-13 ◽  
Author(s):  
Rosann O’Dell ◽  
Joan Leafman ◽  
Guy M. Nehrenz ◽  
Daniel Bustillos
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Intellectual Disability ◽  
Health Care Decision ◽  
Descriptive Survey ◽  
Care Decision

Descriptive study of patients with intellectual disability attended in a community mental health care center

2017 ◽  
Vol 41 (S1) ◽  
pp. S599-S600
Author(s):  
S. Oller Canet ◽  
E. Pérez Sánchez ◽  
L. Alba Pale ◽  
E. Mur Mila ◽  
B. Samsó Buixareu ◽  
...  
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Intellectual Disability ◽  
Community Mental Health ◽  
Mental Health Care ◽  
Aggressive Behavior ◽  
Psychotic Disorders ◽  
Care Center ◽  
Community Mental Health Care ◽  
Health Care Center

IntroductionThe rate of mental illness among people with intellectual disability is at least 2.5 times higher than in the general population [1].ObjectiveTo describe the clinical and sociodemographic characteristics of all patients with intellectual disability treated in a community mental health care center (CMH) located in a city of 120,000 inhabitants on the outskirts of Barcelona with a high poverty index.MethodsDocuments and patient records were reviewed. Clinical, sociodemographic and other treatment data of patients with intellectual disability treated at the CMH were collected.ResultsThe sample consisted of 118 patients. Mean age: 39.5 (SD: 15), 54% men. 92% single and 23.7% legally incapacitated. 46.6% never completed basic education and 44.1% completed primary school. Employment status: 14.4% unemployed, 14.4% currently active, and 50% pensioned. Patients living mainly with their family (parents:) 86%. 68.6% of patients showed aggressive behavior, but the rate of hospital psychiatric admissions was low (mean: 1.1 (SD: 2.3)). Organic comorbidity: 44.9%. Functionality measured with GAF mean: 45 (SD: 12). Level of intellectual disability was mostly mild (62%). Psychiatric diagnoses were: psychotic disorders: 49.25%, affective disorders: 6.8%, personality disorder: 3.4%, Obsessive-compulsive disorder: 3.4%, autism: 11.9% and other diagnoses: 37.3%. Patients treated with anti-psychotics: 78.8%, anti-depressants: 40.7%, and mood stabilizers: 70.5%.ConclusionsIntellectually disabled patients from our sample showed high comorbidity with psychotic disorders, were highly medicated and often exhibited aggressive behavior.Disclosure of interestThe authors have not supplied their declaration of competing interest.

More Than Just a Mammogram: Breast Cancer Screening Perspectives of Relatives of Women With Intellectual Disability

2014 ◽  
Vol 52 (6) ◽  
pp. 444-455 ◽  
Author(s):  
Nechama W. Greenwood ◽  
Deborah Dreyfus ◽  
Joanne Wilkinson
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Health Care ◽  
Intellectual Disability ◽  
Cancer Screening ◽  
Breast Cancer Screening ◽  
Breast Cancer Mortality ◽  
Family Members ◽  
Well Being

Abstract Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

Invisible populations: parallels between the health of people with intellectual disability and people of a refugee background

2011 ◽  
Vol 17 (3) ◽  
pp. 210 ◽  
Author(s):  
Claire E. Brolan ◽  
Robert S. Ware ◽  
Nicholas G. Lennox ◽  
Miriam Taylor Gomez ◽  
Margaret Kay ◽  
...  
Keyword(s):  
Health Care ◽  
Primary Health Care ◽  
Intellectual Disability ◽  
Best Practice ◽  
Care Delivery ◽  
Health Assessment ◽  
Multidisciplinary Care ◽  
Primary Health ◽  
Optimal Health ◽  
Lost Opportunity

When considering the delivery of primary health care in the community, some populations remain virtually invisible. While people with intellectual disability might seem to share few characteristics with refugees and humanitarian entrants, there are a number of difficulties that both groups share when accessing and receiving primary health care. Commonalities include communication barriers, difficulties accessing past medical records and the complexity of health needs that confront the practitioner providing health care. These issues and additional systemic barriers that prevent the delivery of optimal health care to both groups are explored. Integrated multidisciplinary care is often required for the delivery of best practice care; however, such care can be difficult for each group to access. In May 2010, the specific Medicare Health Assessment Item numbers for both of these groups were incorporated into a group of more generic Item numbers. This has resulted in a lost opportunity to enhance the evidence surrounding health care delivery to these vulnerable populations. This paper recognises the importance of health policy in leading affirmative action to ensure these populations become visible in the implementation of the National Primary Health Care Strategy.

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