| 1. |
- Ahlström, Gerd, et al.
(författare)
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Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design : a study protocol
- 2018
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Ingår i: BMC Palliative Care. - : BioMed Central. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care. Methods/design: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations. Discussion: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing.
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| 2. |
- Aho, Anna Carin
(författare)
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Living with recessive limb-girdle muscular dystrophy : affected young adults’ and parents’ perspectives, studied througha salutogenic framework
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis, using a salutogenic framework, was to develop knowledge about experiences and perceptions of living with recessive limb-girdle muscular dystrophy and its influences on health, from the affected young adults’ and their parents’ perspectives.Methods: A qualitative explorative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy, aged 20–0 years, and 19 parents. Data analyses were conducted using content analysis (I, II, III) and phenomenography (IV). In order to mirror the interview data, the participants also answered the 13-item sense of coherence questionnaire.Findings: Recessive limb-girdle muscular dystrophy has a major impact on the affected young adults’ and their parents’ lives as the disease progresses. Health described in terms of well-being was thus perceived to be influenced, not only by physical, emotional and social consequences due to the disease and worry about disease progression but also by external factors, such as accessibility to support provided by society and other people’s attitudes. There was, however, a determination among the participants to try to make the best of the situation. The importance of being able to mobilize internal resources, having social support, meaningful daily activities, adapted environment, the young adult being seen as a person and having support from concerned professionals, including personal assistance when needed, was thereby described. Self-rated sense of coherence scores varied. Those who scored above or the same as median among the young adults (≥56) and the parents (≥68) expressed greater extent satisfaction regarding social relations, daily activities and external support than those who scored less than median.Conclusion: This thesis highlights the importance of early identification of personal perceptions and needs to enable timely health-promoting interventions. Through dialogue, not only support needed for the person to comprehend, manage and find meaning in everyday life can be identified, but also internal and external resources available to enhance health and well-being, taking into account the person’s social context as well as medical aspects.
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| 3. |
- Alftberg, Åsa, et al.
(författare)
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Conversations about Death and Dying with Older People : An Ethnographic Study in Nursing Homes
- 2018
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Ingår i: Healthcare. - : MDPI. - 2227-9032. ; 6:2
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Tidskriftsartikel (refereegranskat)abstract
- Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.
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| 4. |
- Axmon, Anna, et al.
(författare)
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Chronic Respiratory Disorders and Their Treatment among Older People with Intellectual Disability and/or Autism Spectrum Disorder in Comparison with the General Population
- 2017
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Ingår i: Healthcare. - : MDPI AG. - 2227-9032. ; 5:3
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Tidskriftsartikel (refereegranskat)abstract
- Respiratory disorders are common among people with intellectual disabilities (ID). However, few studies have investigated these disorders among older people with ID. We identified 7936 people, aged 55+ years, with ID and a reference cohort from the general population. Data on diagnoses of chronic respiratory disorders, with a focus on asthma and chronic obstructive pulmonary disease (COPD), were collected, as was information on health care visits due to such disorders. We also added data on the prescription of drugs for obstructive airway diseases. Whereas the risk of having at least one diagnosis of asthma during the study period was similar in the two cohorts, people with ID were less likely than the general population to have been diagnosed with COPD. The same was found for health care visits due to asthma and COPD, respectively. The patterns of drug prescription were similar among people with ID and the general population, with the exception of adrenergics for systemic use, which were more commonly prescribed to people with ID. Thus, older people with ID do not seem to have an increased risk of asthma or COPD. Moreover, the indications are that when diagnosed with any of these disorders, they receive treatment adapted to their particular needs.
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| 5. |
- Axmon, Anna, et al.
(författare)
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Demographic and diagnostic profiles of older people with intellectual disability and prescription of antipsychotics
- 2019
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Ingår i: Social Psychiatry and Psychiatric Epidemiology. - : Springer Science and Business Media LLC. - 0933-7954 .- 1433-9285. ; 54:8, s. 937-944
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Tidskriftsartikel (refereegranskat)abstract
- PurposeTo describe demographic and diagnostic profiles in a national cohort of older people with intellectual disability (ID) who were prescribed antipsychotics.MethodsUsing national registers, we identified people with ID who were 55 + years in 2012 (n = 7936), as well as a subcohort with complete information on demographic factors (sex, year of birth, severity of ID, presence of behavior impairment, and residence in special housing; n = 1151). Data regarding diagnoses and prescription of antipsychotics were added for the time period 2006–2012. The potential effects of demographic factors and diagnoses on the prescription of sedating and less-sedating antipsychotics, respectively, were assessed in separate models by estimating the relative risks (RRs) of prescription.ResultsOf the demographic factors, severe/profound ID (RR 1.17), behavior impairment (RR 1.34), and living in special housing (RR 1.25) were associated with prescription of sedating antipsychotics, whereas only behavior impairment (RR 1.42) was associated with prescription of less-sedating antipsychotics. For both sedating and less-sedating antipsychotics, the diagnoses with the largest association (i.e., highest relative risk) were schizophrenia (RR 2.17 for sedating and RR 1.81 for less-sedating) and ID (RR 1.84 and RR 1.68, respectively), followed by disorders of psychological development (for sedating antipsychotics, RR 1.57) and organic mental disorders (for less-sedating antipsychotics, RR 1.55).ConclusionsThe associations between prescription of antipsychotics and demographic factors and non-psychotic diagnoses, respectively, suggest that older people with ID may be prescribed antipsychotic medication without thorough psychiatric diagnosing. If so, there is a need for improving the abilities of health care professionals to properly diagnose and manage psychiatric illness in this population.
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| 6. |
- Axmon, Anna, et al.
(författare)
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Fall-risk-increasing drugs and falls requiring health care among older people with intellectual disability in comparison with the general population : A register study
- 2018
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Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 13:6, s. 1-11
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Falls are the most common cause of injury for older people in the general population as well as among those with intellectual disability. There are many risk factors for falls, including a range of drugs which are considered to be fall-risk-increasing (FRIDs). The aim of the present study was to describe prescription patterns of FRIDs in itself as well as in relation to falls requiring health care among older people with intellectual disability and their age-peers in the general population. Moreover, to investigate possible differences between the two groups.METHODS: A cohort of people with intellectual disability and a referent cohort, one-to-one-matched by sex and year of birth, were established. Each cohort comprised 7936 people aged 55+ years at the end of 2012. Register data were collected for 2006-2012 on prescription of antidepressants, anxiolytics, hypnotics and sedatives, opioids, and antipsychotics, as well as for fall-related health care contacts. Analyses were performed on yearly data, using repeated measures models.RESULTS: People with intellectual disability were more likely to be prescribed at least one FRID (Relative Risk [RR] 2.31). The increase was highest for antipsychotics (RR 25.0), followed by anxiolytics (RR 4.18), antidepressants (RR 2.72), and hypnotics and sedatives (RR 1.42). For opioids, however, a lower prevalence (RR 0.74) was found. In both cohorts, those with prescription of at least one FRID were more likely to have a fall-related injury that required health care. The increased risk was higher in the referent cohort (RR 3.98) than among people with intellectual disability (RR 2.27), although people with intellectual disability and prescription still had a higher risk of falls than those with prescription in the referent cohort (RR 1.27). A similar pattern was found for all drug groups, except for opioids, where prescription carried the same risk of having a fall-related injury that required health care in both cohorts.CONCLUSIONS: With or without prescription of FRIDs, older people with ID have a higher risk of falls requiring health care than their age-peers in the general population. It is important to be aware of this when prescribing drugs that further increase the risk of falls.
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| 7. |
- Axmon, Anna, et al.
(författare)
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Gender differences in psychiatric diagnoses in older people with intellectual disability: a register study
- 2017
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Ingår i: BMC Psychiatry. - : Springer Science and Business Media LLC. - 1471-244X. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Gender differences regarding psychiatric ill-health are well known in the general population. However, not much research is done on people with intellectual disability, and especially not among older people with intellectual disability.METHODS: People with intellectual disability aged 55+ years in 2012 in Sweden were identified through a register containing information on those receiving support and service for this type of disability. The cohort comprised 3609 women and 4327 men with mean age 65 and 64 years, respectively. Information on psychiatric diagnoses was collected from the National Patient Register for the period 2002-2012. Potential gender differences were evaluated both for diagnostic categories (e.g. affective disorders) and single diagnoses (e.g. depressive episodes).RESULTS: The most common diagnoses among women were in the diagnostic category affective disorders, and among men in psychotic disorders. The majority of both women (72%) and men (71%) had diagnoses in only one diagnostic category. Women were more likely than men to have at least one diagnosis of dementia (odds ratio 1.40, 95% confidence interval 1.06-1.83) or affective disorders (1.33, 1.21-1.58) during the study period. They were, however, less likely to have at least one diagnosis of alcohol/substance use related disorder (0.59, 0.43-0.80). No gender differences were found for diagnoses of psychotic (1.04, 0.86-1.27) or anxiety disorders (1.15, 0.94-1.40). Regarding single diagnoses, women were more likely than men to have had at least one diagnosis of unspecified nonorganic psychosis (1.75, 1.23-2.50), depressive episode (1.47, 1.19-1.82), recurrent depressive disorder (1.53, 1.06-2.22), other anxiety disorder (1.34, 1.06-1.69), or dementia in Alzheimer disease (2.50, 1.40-4.49), but less likely to be diagnosed with psychiatric and behavioral disorders due to use of alcohol (0.41, 0.27-0.61).CONCLUSIONS: As in the general population, there seem to be gender differences with respect to several types of psychiatric diagnoses among older people with intellectual disability. More research is needed to establish if this is due to gender differences in the occurrence of disease, inclination to seek care, health care utilization patterns, or ability to correctly identify disorders.
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| 8. |
- Axmon, Anna, et al.
(författare)
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Pain and Pain Medication among Older People with Intellectual Disabilities in Comparison with the General Population
- 2018
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Ingår i: Healthcare. - : MDPI AG. - 2227-9032. ; 6:2, s. 1-12
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Tidskriftsartikel (refereegranskat)abstract
- Little is known about pain and pain treatment among people with intellectual disabilities (IDs). We aimed to describe pain and pain medications among older people with ID compared to the general population. Data on diagnoses and prescriptions were collected from national registers for the period between 2006 and 2012 for 7936 people with an ID and a referent cohort from the general population. IDs were associated with a decreased risk of being diagnosed with headaches, musculoskeletal pain, and pain related to the circulatory and respiratory systems, but they were associated with increased risk of being diagnosed with pain related to the urinary system. Among men, IDs were associated with an increased risk of being diagnosed with visceral pain. People with IDs were more likely to be prescribed paracetamol and fentanyl regardless of the type of pain but were less likely to be prescribed COX(1+2) and COX2 inhibitors and weak opioids. Healthcare staff and caregivers must be made aware of signs of pain among people with IDs who may not be able to communicate it themselves. Further research is needed to investigate whether people with IDs are prescribed paracetamol rather than other pain drugs due to physicians trying to avoid polypharmacy or if there are other reasons not to prescribe a greater range of pain treatments.
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| 9. |
- Axmon, Anna, et al.
(författare)
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Pharmacotherapy for mood and anxiety disorders in older people with intellectual disability in comparison with the general population
- 2019
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Ingår i: BMC Psychiatry. - : Springer Science and Business Media LLC. - 1471-244X. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: People with intellectual disability (ID) have high prevalence of psychiatric disorders, but even higher rates of prescription of psychotropic drugs. METHODS: Using Swedish national registers, we identified a group of older people with ID and diagnosis of mood disorders (ICD-10 codes F32-F39) and/or anxiety (ICD-10 code F4) during 2006-2012 (n = 587) and a referent group of people from the general population with the same diagnoses during the same time period (n = 434). For both groups, we collected information on prescription of anxiolytics, hypnotics and sedatives, antidepressants, and GABA-agonists. RESULTS: Among those with a diagnosis of anxiety, people with ID were more likely than those in the general population to be prescribed anxiolytics (Relative Risk 1.32 [95% Confidence Interval 1.19-1.46]) and GABA-agonists (1.10 [1.08-1.31]). Moreover, among those with anxiety but without mood disorders, ID was associated with increased prescription of antidepressants (1.20 [1.03-1.39]). Within the ID cohort, behaviour impairment and MSP (i.e. moderate, severe, or profound) ID was associated with increased prescription of anxiolytics, both among those with anxiety (1.15 [1.03-1.30] for behaviour impairment and 1.23 [1.10-1.38] for MSP ID) and among those with mood disorders (1.14 [0.97-1.35] for behaviour impairment and 1.26 [1.04-1.52] for MSP ID). Moreover, MSP ID was associated with increased prescription of GABA-agonists among those with anxiety (1.23 [1.10-1.38]). CONCLUSIONS: The excess prescription of anxiolytics but not antidepressants may suggest shortages in the psychiatric health care of older people with intellectual disability and mood and anxiety disorders.
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| 10. |
- Axmon, Anna, et al.
(författare)
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Prescription of potentially inappropriate medications among older people with intellectual disability: a register study
- 2017
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Ingår i: BMC Pharmacology and Toxicology. - : Springer Science and Business Media LLC. - 2050-6511. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Older people have a greater disease burden and are more likely than younger to be prescribed medications. They are also more sensitive to adverse effects. With this in mind, a range of medications have been suggested inappropriate in this population. People with intellectual disability (ID) have a higher disease burden than the general population, putting them at even greater risk of prescription of such medications. The aim of this study was to describe prescription of potentially inappropriate medications among older people with ID in relation to prescriptions among their age peers in the general population.METHODS: We established an administrative cohort of people with ID (ID cohort; n = 7936), using a Swedish national register. A referent cohort from the general population (gPop) was matched one-to-one by sex and year of birth. Data regarding prescription of potentially inappropriate medications were collected from the Swedish prescribed drug register for the years 2006-2012.RESULTS: People with ID were more likely than the general population to be prescribed medications with anticholinergic effects, intermediate- or long-acting benzodiazepines, and antipsychotics at least once during the study period, and also had more number of years with prescription. Except for benzodiazepines, those in the ID cohort with at least one prescription had larger amounts prescribed than those in the gPop cohort. People in the ID cohort were less likely than the general population to be prescribed non-steroidal anti-inflammatory drugs (NSAIDs). Among those with at least one prescription of NSAIDs, those in the ID cohort had prescriptions during fewer years and in lower amounts than those in the gPop cohort.CONCLUSIONS: Although prescription of potentially inappropriate medications overall is more common among people with ID than in the general population, the opposite pattern is found for medications for pain management. This may be a result of pain being under-recognized and under-treated in this population. Thus, there is a need for training as well as increased knowledge and awareness among care and health care professionals regarding signs of adverse effects and the need of continuous evaluation of treatment in this vulnerable group.
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