Tele-assistance in intellectual disability

We conducted a trial of multidisciplinary tele-assistance to support 20 families of patients with intellectual disability. Psychological, educational, social and medical support was provided by videoconferencing, email and on-line sharing of diagnostic and rehabilitation tools. The main topics dealt with were self-care, learning processes, adaptation skills, management of problem behaviours and health problems. A computer network was developed which connected workstations at the patients' houses and two main sites at the Oasi Institute. It was based on ISDN transmission. During the study, 840 videoconference sessions and 805 programme planning and case discussions took place. After one year of tele-assistance, most families (84%) stated that they were satisfied with the experience, underlining, among various advantages, the availability of professional and continuous support, the reduction of inconvenient travelling to specialized centres and the increase in adaptation skills of their children. Although the present study was empirical, our experience suggests that tele-assistance can satisfy some of the main needs of persons with intellectual disability and their families.     

Practical Approaches to Supporting Young Women With Intellectual Disabilities and High Support Needs With Their Menstruation

Menstrual myths may influence decisions about menstrual and fertility management for women with intellectual disabilities and high support needs. We identify six myths (related to menstruation, menstrual management, communication, sexual feelings, menstrual difficulties, and surgical elimination) and the evidence that dispels these myths. We provide reflexive questions for practitioners to help them critically reflect on their own approaches to menstrual management. We encourage those supporting women with disabilities to consider the reflective questions we have provided and to strive to support informed decision-making about menstruation and the related areas of fertility and sexual feelings.     

Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation

Menstrual myths may influence decisions about menstrual and fertility management for women with intellectual disabilities and high support needs. We identify six myths (related to menstruation, menstrual management, communication, sexual feelings, menstrual difficulties, and surgical elimination) and the evidence that dispels these myths. We provide reflexive questions for practitioners to help them critically reflect on their own approaches to menstrual management. We encourage those supporting women with disabilities to consider the reflective questions we have provided and to strive to support informed decision-making about menstruation and the related areas of fertility and sexual feelings.     

Self‐reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5‐year follow‐up study

Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self‐reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self‐reported care needs from baseline to follow‐up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5‐year follow‐up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2–36.1) had a suspected intellectual disability. For both groups, between baseline and follow‐up, the number of ‘unmet care needs’ decreased significantly and the number of ‘no care needs’ increased significantly, while at follow‐up, participants with a suspected intellectual disability reported ‘no care needs’ on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow‐up, ‘met care needs’ decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow‐up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services.     

Health Support of People with Disabilities in South Australia

Over the last 2 decades, South Australians who live with severe and/or profound disability have been afforded greater support to enable them to lead good-quality lives in the general community. South Australia has been progressively dispensing with institutional accommodation in favor of various supported accommodation options within the community. This commitment has been coupled with investment in a community-based health support program.Community-based health services have been oriented to enable individuals with disabilities, along with their parents and carers, to self-manage health conditions associated with their disabilities and to minimize the level of intervention required by health professionals. This has culminated in the inter-agency development (involving government and non-government agencies) of a health support program that is responsive to the needs of individuals, underpinned by a clear state-wide policy with procedures and guidelines.The health support program is available to individuals of all ages who have a range of health conditions that are most likely to be associated with profound or severe disability, i.e. impairments that limit mobility or impede independence in daily self-care (these conditions include cerebral palsy, autism, brain injury, paralysis, multiple sclerosis, epilepsy, diabetes mellitus, and the full spectrum of syndromes diagnosed at birth). The program involves individuals with disabilities, their families and carers, personal care workers, and health and education professionals. The key program facilitators are registered nurses from the South Australia Royal District Nursing Service, the Children, Youth and Women’s Health Service, and the Community Accommodation and Respite Agency. Anecdotal evidence suggests that the program has been effective in minimizing unnecessary admissions to hospital, enabling children to be included in mainstream education settings, and managing the impact of health needs on people’s daily lives.Not all people with a disability have high health needs. The Health Support Program distinguishes three levels of client need, the planning and intervention required for each level, and the nature of practitioner qualifications required for the planning of health support. The program provides support that is categorized as level 3 and could be managed in the community by a care worker who has been trained and competency assessed by a registered nurse to undertake complex health activities.The program complements mainstream health services by maximizing the opportunity for people with disabilities to manage their conditions without unneccessary hospitalisation or undue health professional intervention in their daily lives.     

Rural women with chronic illness: computer use and skill acquisition.

Chronically ill rural women must manage complex illness without easy access to health care resources including support and health information. The Women to Women project is a technology-based program with an overarching aim to assist rural women in the day-to-day management of their illnesses. An important aspect of the Women to Women program is teaching the women how to use the Internet to meet their support and informational needs. The purposes of this article are to examine changes in 1) the level of computer skills, 2) degree of comfort in using the computer, and 3) knowledge of Internet functions for the participants in the Women to Women computer-based intervention. Results of the initial analysis of data from 63 women (intervention group n = 29, control group n = 34) indicate that women participating in the intervention reported greater computer skills and computer comfort and greater knowledge of specific aspects of Internet use than women in the control group. These findings were further strengthened considering that intervention and control group differentials were sustained 8 months after the end of the women's participation in the computer intervention. With the attainment of computer and Internet skills, it is expected that these rural women will have a sustained ability to access quality Internet information that will allow them to better manage and adapt to their chronic illnesses.     

ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners

Two per cent of people in Australia have intellectual disability and the adults in this population often have poor health status. This poor health can be partly attributed to communication difficulties encountered by people with intellectual disability and also health professionals in consultation settings. The design and development processes of an educational intervention to improve communication between patients, general practitioners (GPs) and also advocates in a population of adults with intellectual disability are described. The design process was collaborative and involved adults with intellectual disability, GPs, parents, support workers and other professionals. It was a nine-step development process and led to the final communication tool package, the ask (advocacy skills kit) 5-year health diary and educational session. As a result of the collaborative design and development processes, this diary included qualities not found in most other medical record keeping systems: visual appeal, advice on how to be a health advocate, utility for a range of users, privacy, portability and sufficient capacity to record personal patient information which enhanced communication between doctor, patient and advocate. It is proving to be very popular. Clear implications were found for applying established criteria and incorporating the needs of users in the design of educational interventions in the intellectually disabled population. Health promotion tools aiming to improve the current poor health status of adults with intellectual disability should be developed further.     

Where There Is Smoke,There is Stress: Low-Income Women Identify Support Needs and Preferences for Smoking Reduction

Efforts to assist low-income women with tobacco reduction and cessation have typically not been informed by assessment of their needs and wishes. This multi-site qualitative study focused on assessing 64 low-income women's support needs and intervention preferences. These women were interested in smoking cessation, but identified many barriers and needed appropriate supports. However, available smoking cessation programs did not address underlying conditions, such as income instability and stress. The support recommended was psychosocial (e.g., buddy and group support), included self-care (e.g., nutrition, activity, and personal time), and reflected their social-economic circumstances (e.g., free cessation aids and child care).     

Where there is smoke, there is stress: low-income women identify support needs and preferences for smoking reduction

Efforts to assist low-income women with tobacco reduction and cessation have typically not been informed by assessment of their needs and wishes. This multi-site qualitative study focused on assessing 64 low-income women's support needs and intervention preferences. These women were interested in smoking cessation, but identified many barriers and needed appropriate supports. However, available smoking cessation programs did not address underlying conditions, such as income instability and stress. The support recommended was psychosocial (e.g., buddy and group support), included self-care (e.g., nutrition, activity, and personal time), and reflected their social-economic circumstances (e.g., free cessation aids and child care).     

Characteristics of patients aged 75 years and over who are discharged from hospital without district nursing support.

To investigate the state of health and needs of over-75-year-olds discharged from hospital and not referred to the District Nurse Service, patients in this age group who were discharged from hospital, who returned to their own or a relative's home and were not referred to the District Nurse Service were interviewed by Health Visitors during their normal post-discharge visit. Assessment was by a questionnaire on details of discharge, statutory, voluntary and informal support, physical status, disability level, ability to self-care and mental status. It was found that there was wide variation in timing of Health Visitors' post-discharge visits, and most patients had had some contact with their GP before this visit. Almost half the patients were discharged from General Surgery or surgical specialties. Most patients were fairly healthy but a minority had severe disabilities. Physical status, disability level and ability to self-care were related to age and sex of the patient, with older patients and women having poorer health status. Women had poorer mental status than men. It is concluded that the wide variety in health status and needs of this group of patients suggest that they should be taken into account in the planning of new discharge procedures. Closer links between the hospital, community teams and general practice are suggested.     

Modifications in service delivery and clinical treatment for women diagnosed with severe mental illness who are also the survivors of sexual abuse trauma

Sexual abuse trauma and chronic revictimization are central to the experience of many women diagnosed with severe mental illness. The high reported prevalence rates of sexual abuse trauma among these women necessitate that program planners and clinicians be prepared to adapt their treatment interventions for use with trauma survivors. This article describes how current treatment approaches for women diagnosed with severe mental illness can be adapted to accommodate the special needs and vulnerabilities of sexual abuse trauma survivors. A history of trauma added to the clinical picture of longstanding and severe mental illness poses new diagnostic and treatment considerations, which are discussed. The full range of rehabilitation services—case management, residential placement and supervision, inpatient hospitalization, medication management, network intervention, and socill skills training—must be grounded in an understanding of the trauma experience, informed by accurate assessment of the trauma, and accommodated to the woman’s specific history of sexual abuse trauma.     

Women Who Love: An Explorative Study on Experiences of Lesbian and Bisexual Women with a Mild Intellectual Disability in The Netherlands

Empirical research that addresses sexual orientation in people with an intellectual disability (ID) is limited, and very little is known regarding the personal experiences of lesbian and bisexual women with ID. This study set out to answer the question: What are the experiences of lesbian and bisexual women with a mild intellectual disability in the Netherlands? Ten lesbian and bisexual women (average age of 33 years) with a mild intellectual disability took part in our study comprising of semi-structured interviews. Participants reported that they had found it hard to talk to others about sensitive subjects such as their sexuality, and had been left to figure out information regarding their sexual orientation without support or guidance. Our results point to a lack of information, sexual education and role models when it comes to lesbian sex and women with an intellectual disability. Social contact was often limited, and participants experienced difficulties finding a partner. Furthermore, participants often had to cope with mental health problems and had struggled with loneliness, depression and addiction. Last but not least, our participants reported that they had been discriminated against. Coming out (revealing your sexual orientation) is not easy when you have an intellectual disability. To enable women with ID who have lesbian or bisexual feelings to understand and secure their sexual rights in their daily lives is important. Therefore, it is necessary to provide support in the following domains: sexual education and training, social contact and assertiveness.     

Health promotion attitudes and strategies in older adults.

The purpose of this study was to describe older adults' attitudes and beliefs regarding wellness, self-care, and participation in health promotion activities. Six focus groups were conducted with 45 men and women aged 62 to 91. The White Crane Model of Healthy Lives for Older Adults was developed based on the focus group themes. Being healthy incorporates multiple components, including functional independence, self-care and management of illness, positive outlook, and personal growth and social contribution. Being healthy is determined by self-evaluation in the context of chronic illness or disability and the social and/or physical environment. Strategies for maintaining health and motivation for healthy behavior are identified. Socialization and social support are central to participation in programs, and interpersonal engagement is particularly important. Flexibility in choice and structure of programs contribute to seniors' sense of control over their health. Programs should be challenging and tailored to older adults' needs and expectations.     

A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability

The family support needs of parents with an intellectual disability (ID) are relatively unknown. This paper reviewed two types of intervention for parents with ID: those designed to strengthen social relationships and those teaching parenting skills. A literature search was conducted using electronic databases and a limited number of evaluative studies were found. The evidence for interventions aimed at strengthening social relationships was inconclusive; although positive changes were observed, there were limitations in study design which restricted the generalizability of the results. The evidence for parental skills teaching suggested that behavioural based interventions are more effective than less intensive forms such as lesson booklets and the provision of normal services, although these studies also had limitations. There is a need for further large scale controlled studies in this area to provide clearer evidence and to explore additional factors relating to child, parent and family which may impact on outcomes.     

Stress and women with physical disabilities: identifying correlates.

INTRODUCTION: We examined correlates of perceived stress among women with physical disabilities to identify variables that may be amenable to change through psychosocial interventions. METHOD: The method for this investigation involved a correlational analysis of data gathered from 415 women living with physical disabilities on abuse and other health concerns. The women were recruited in outpatient clinics where they each participated in a face-to-face, semistructured interview. RESULTS: Based on multiple regression analyses, the findings indicate that demographic (age, income) and disability (mobility, level of assistance needed) variables explained a small but significant proportion of the variance in perceived stress. Variables judged to be potentially amenable to change through psychosocial interventions (i.e., social support, pain interference, and abuse) contributed significantly to stress over and above the demographic and disability variables. CONCLUSION: Women with physical disabilities reported high levels of perceived stress. Particularly at high risk are women who are limited by pain, lack social support, and/or have experience with recent abuse. Stress management interventions for this population of women should consider incorporating components addressing pain, social support, and abuse.     

Early normal menstrual cycle pattern and the development of uterine leiomyomas

It is unclear if women who develop uterine leiomyomas have had menstrual regularity or irregularity in their reproductive life. This case-control study examines the recalled menstrual cycle patterns throughout the reproductive life among women requiring hysterectomy for myomas. One hundred twenty-two women with myomas and 244 age-matched healthy controls without myomas were enrolled in Japan. The incidence of normal menstrual cycle pattern in their teens among patients with myoma was significantly higher than that among healthy controls (p < 0.01). The subset results for parous women were the same as those for all subjects. The size of the uterus in myoma patients with teenage menstrual regularity was not larger than in those with teenage menstrual irregularity. Women who developed myomas later in life tended to have early normal menstrual cycle pattern. Early menstrual regularity may enhance leiomyoma growth in early reproductive life.     

Knowledge of results and learning to tell the time in an adult male with an intellectual disability: a single-subject research design

The present study investigated whether knowledge of results, in the form of visual and audible feedback, would increase the accuracy of time-telling in an individual with an intellectual disability. A 19-year-old male with mild intellectual disability participated in this A1-B1-A2-B2 single-subject study design. The task involved correctly identifying the time given on a computer. Data, based on the Wilcoxon signed-rank test, showed that the participant demonstrated a greater number of correct responses during the intervention phases. Incorporating knowledge of results into a learning strategy for this individual with intellectual disability resulted in an increased ability to accurately identify the correct time on an analogue clock. There is a need to replicate the study design to increase the external validity and generalization of results. The strategies described in the present study may also be useful for occupational therapists who teach individuals with intellectual disability to gain skills in their everyday activities of daily living (ADLs).     

Activities of daily living in persons with intellectual disability: Strengths and limitations in specific motor and process skills

As there is a wide range of abilities among clients with intellectual disability, occupational therapists should use assessments of activities of daily living that specify clients' strengths and limitations to guide and target interventions. The aim of the present study was to examine if activities of daily living performance skills differ between adults with mild and moderate intellectual disability. Three hundred and forty-eight participants with either mild intellectual disability ( n  = 178) or moderate intellectual disability ( n  = 170) were assessed using the Assessment of Motor and Process Skills to examine the quality of their activities of daily living skills. The overall activities of daily living motor and activities of daily living process hierarchies of skill item difficulties remained stable between groups. Although participants with moderate intellectual disability had more difficulty overall with activities of daily living motor and activities of daily living process skills, they were able to carry out some of these activities equally as well as participants with mild intellectual disability. The findings are discussed in relation to the planning of specific interventions to improve the ability of clients with intellectual disability to carry out activities of daily living.     

Overweight, disability and illness among the elderly attending day hospitals in the UK

The associations between being overweight and disability and morbidity were studied among 530 elderly men and women attending 16 day hospitals in England and Scotland. The degree of confinement to a chair was significantly associated with overweight especially in women. Restrictions in mobility and self-care were greater among the overweight but the association rarely reached statistical significance, and varied according to whether disability was assessed by the nurse or the patient. Varicose ulcer, breathlessness, high blood pressure and pains in the knees were more frequent among overweight patients. More overweight patients were long term attenders of day hospitals than leaner patients regardless of their level of disability. Informal helpers at home might have more difficulty in coping with overweight elderly dependents than they do with less heavy elderly and therefore demand more support from the health and social services. If this hypothesis is correct the overweight elderly may come into institutional care earlier than other patients.