Healthy Ageing in People with Intellectual Disabilities from Managers’ Perspective: A Qualitative Study

Axmon

Sandberg

et al. 2020

BMC Health Serv Res

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Background Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS. Methods This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability (n = 7936), aged 55 years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002–2012. Results A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11 years, of which 54.6% (n = 2103) were planned, 44.0% (n = 1695) unplanned and 1.4% (n = 56) lacked information. More than half of the visits, 67.0% (n = 2582) were outpatient health care thus inpatient 33% (n = 1272). Most planned visits (29.4%, n = 618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, n = 621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia. Conclusions Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study

Axmon

Sandberg

et al. 2020

BMC Health Serv Res

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“…If people with ID fall during vital activity because they rarely take part in other activities, the LSS act may not be not working as intended. In a recent study, leaders of group homes and daily activity centres highlighted the issue of decreased activity after retirement, suggesting that potential explanations were reduced social networks and lack of staff (Johansson et al 2017). Further studies should investigate if LSS indeed provides enough support for people with ID to lead an active and safe life.…”

Section: Discussionmentioning

confidence: 99%

Falls resulting in health care among older people with intellectual disability in comparison with the general population

Axmon

J intellect Disabil Res

Sandberg

2018

Background Falls are common among older people with intellectual disability (ID) and are also a major contributor to injuries in this population. Yet, fall characteristics have only been sparsely studied, and the results are inconsistent. The aim of the present study was to investigate type of falls, places where they occurred and activities that caused them, as well as health outcomes and health utilisation patterns after falls, among older people with ID in comparison with their age peers in the general population. Methods We established an administrative cohort of people with ID aged 55 years, or more, and alive at the end of 2012 (ID cohort; n = 7936). A cohort from the general population, one‐to‐one matched by sex and year of birth, was used as referents. Data regarding fall‐induced health care episodes in inpatient and outpatient specialist care were collected from the National Patient Register for the period 2002–2012. Results With the exception of falls from one level to another (i.e. fall on and from stairs and steps, ladder and scaffolding; fall from, out of or through building or structure; fall from tree or cliff and diving or jumping into water; or other fall from one level to another), people in the ID cohort were more likely to fall and fall more often than those in the general population cohort. Falls during a vital activity (e.g. attending to personal hygiene or eating) were twice as common among people with ID compared with the general population. When falling, people with ID were more likely to injure their head and legs but less likely to sustain injuries to the thorax and elbow/forearm. They were more likely to have superficial injuries, open wounds and fractures but less likely to have dislocations, sprain and strains. Fall‐related health care visits among people with ID were more likely to be in inpatient care and be unplanned. People with ID were also more likely than those in the general population to have a readmission within 30 days. Conclusions People with ID are more likely to require specialist care after a fall and also more likely to obtain injuries to the head, compared with the general population. This is important to consider when taking preventive measures to reduce falls and fall‐related injuries.

“…The current study is part of a project about ageing in people with ID. Another element of the study (an interview study with managers) has been prevously published (Johansson et al, 2017).…”

Section: Methodsmentioning

confidence: 99%

“…Another study, a systematic review of care for older people with ID, reported that the staff lacked knowledge and methods and needed training and support related to questions of ageing (Innes et al, 2012). A previous study with leaders (Johansson et al, 2017) showed that ageing is a neglected question in their management role. Consequently, further investigation is required to more clearly understand how staff members provide care and services for older people with ID and how they experience and reflect on ageing with ID.…”

Section: Introductionmentioning

confidence: 99%

Ambivalence among staff regarding ageing with intellectual disabilities: Experiences and reflections

Alftberg

Johansson

2019

J Intellect Disabil

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This study explores the experiences and reflections of staff in intellectual disability (ID) services concerning ageing with ID. Qualitative interviews were conducted with 24 staff members in group homes and daily activity centres. The findings showed that the staff were uncertain about the signs of ageing in people with intellectual disabilities; they compared the life conditions of these people with conditions in older people without intellectual disabilities. Their emphasis on an active lifestyle was very strong. The staff members also mentioned uncertainty about how to facilitate assistive devices and whether ‘ageing in place’ was the best solution. The overall theme was manifested as ambivalence where notions of older people with intellectual disabilities seemed incompatible with notions of old age in general and could be explained by the theoretical concept of age coding. The findings of this study indicate the need to provide education about ageing to staff working in ID services.