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Development of an evidence-based practice framework to guide decisionmaking support for people with cognitive impairment due to acquired brain injury or intellectual disability
Get PDFPurpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.
Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.
Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.
Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.
Implications for Rehabilitation
Support for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives.
Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles.
The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability
Urinary incontinence in relationship with anxiety and depression in women : An epidemiological study
No full textUrinary incontinence (UI) affects a large proportion of women during their lives. Pregnancy and parity, obesity and increasing age are regarded as the most important and best documented risk factors for UI in women. Many co-morbid conditions are associated with increased prevalence of UI, such as diabetes, coronary heart disease, cerebral stroke, asthma/COPD, rheumatoid arthritis and chronic musculoskeletal pain. Studies have also shown an association between symptoms of anxiety and depression and UI. Especially urgency UI and overactive bladder have been investigated in relationship with anxiety and depression. The serotonergic and noradrenergic system has a place in the pathophysiology in both UI, anxiety, and depression, which supports the epidemiological substrate.
The documented effect of treatment with the serotonin- and noradrenaline reuptake inhibitor duloxetine on stress UI, also strengthens the hypothesis of a common underlying biological association between the conditions.
This thesis is an epidemiological study of the associations between anxiety and UI and depression and UI in women. The aims of the thesis were:
- To determine if anxiety and depression is associated with UI in middle-aged women, and to investigate a possible association with type and severity of UI.
- To investigate the association between anxiety/depression and UI in a 10-year follow-up study.
- To determine the association between anxiety/depression and UI in a population with women 20 years+, and to investigate if the associations are influenced by using psychotropic drugs.
Our studies are based on data from The Hordaland Health Study (HUSK) (Paper I), the Nord-Trøndelag Health Study (HUNT) (Paper II and Paper III) and the Norwegian Prescription Database (NorPD) (Paper III). The questions about UI were identical in these surveys and consisted of an opening question if the women had experienced leakage of urine and further questions about type, frequency and amount of leakage. The Norwegian version of the questionnaire Hospital Anxiety and Depression Scale (HADS) was used in both surveys to measure the level of anxiety and depression.
Paper I:
Paper I is based on data from HUSK. The study population consisted of 5321 women 40-44 years of age who answered the questionnaire, which contained both the HADS- and UI-questions. The prevalence of UI was 26%. Of these, 53% had stress UI, 9% urgency UI and 30% mixed UI. We found an association both between anxiety and UI, and between depression and UI, strongest for mixed UI, urgency UI and severe UI. Of the whole study-population 20% had anxiety and 8% depression, among women with mixed UI, 32% had anxiety and 17% depression, and in the group with severe UI, 34% had anxiety and 16% depression.
Paper II:
Paper II was based on data from both HUNT2 and HUNT3. The study population consisted of 16.263 women who had answered the questionnaires about UI, anxiety and depression in HUNT2 and HUNT3. We wanted to compare the development of anxiety and depression over the 10-year follow-up among those who had UI in HUNT2 compared with those who were continent in HUNT2. We also wanted to compare development of UI among those with anxiety and among those with depression in HUNT2, compared with development of UI among those without anxiety and depression in HUNT2. We found that anxiety and depression in HUNT2 was associated with increased risk of development of UI, strongest for the urgency component of UI. This association was strongest in the groups with the highest HADS-scores. UI in HUNT2 was also associated with increased risk of development of anxiety and depression, strongest for mild anxiety/depression.
Paper III:
Paper III was based on data from the HUNT3 and the NorPD. 21803 women who had answered the UI-questions in HUNT3 were linked to NorPD. From the NorPD we got information about all prescriptions dispensed for all individuals in the study.
The prevalence of UI was 29% in the total group, 38% in the group with moderate/severe anxiety and 44% in the group with moderate/severe depression. Mixed UI was the UI type strongest associated with anxiety and depression. The prevalence of UI did not increase significantly in the subgroups with anxiety/depression using an antidepressant or anxiolytic drug compared with non-users in the same subgroups. We found increased prevalence of UI among users of many psychotropics compared with non-users. After adjustments, however, UI was positively associated with the use of antidepressants. We found a weak, negative association with use of anxiolytics.
Our results show that UI is associated with anxiety and depression. Also, anxiety and depression are predictors for development of UI in the longitudinal study. The association is strongest for severe UI and mixed UI. Use of psychotropic drugs does not seem to significantly influence the cross-sectional associations
Innovasjon i offentlig sektor– en forskningsagenda i fremvekst. Forskningspolitikk
No full textTre EU-prosjekter med sterk norsk deltakelse har gitt oss ny innsikt i hva som hemmer og fremmer innovasjon i offentlig sektor. Prosjektene viser at både forskerne og EU har forstått hva det er som får offentlige institusjoner til å lære og endre adferd.måsjekke
Sammenheng og overganger i tjenestene - Kunnskapsnotat
Get PDFReformen Leve hele livet, som Solberg II-regjeringen la frem i mai 2018, skal bidra til
at eldre kan mestre livet lenger, ha trygghet for at de får god hjelp når de har behov for
det, at pårørende kan bidra uten at de blir utslitt og at ansatte kan bruke sin kompetanse
i tjenestene. I Meld. St. 15 (2017–2018) presenteres og beskrives reformen. Meldingen
vektlegger i særlig grad å skape et mer aldersvennlig Norge og finne nye og innovative
løsninger på utfordringer knyttet til aktivitet og fellesskap, mat og måltider, helsehjelp,
sammenheng og overganger i tjenestene (Helse- og omsorgsdepartementet, 2018a, s. 54).
Én av reformens målsettinger er å skape et mer sammenhengende tjenestetilbud
som kan bidra til økt kontinuitet, trygghet og forutsigbarhet i pasientforløpet til
eldre (over 65 år) og deres pårørende. På oppdrag fra Helsedirektoratet har Senter
for omsorgsforskning laget denne kunnskapsoppsummeringen om sammenheng og
overganger i tjenestene for personer som er i målgruppa for kvalitetsreformen Leve
hele livet. Den presenterer faglige, juridiske og politiske dokumenter som regulerer og
legger føringer for temaet, og den identifiserer, omtaler og oppsummerer forsknings- og
utviklingsarbeid knyttet til utfordringer og tiltak innen reformområdet «sammenheng og
overganger i tjenestene». Disse forsknings- og utviklingsarbeidene er publisert i perioden
2008–2019. Oppsummeringen baserer seg i all hovedsak på empiri fra en norsk og/eller
nordisk kontekst og er skrevet på et skandinavisk språk eller engelsk. Internasjonale
kunnskapsoppsummeringer og enkeltstående studier er imidlertid tatt med hvis de er
vurdert til å ha særskilt overføringsverdi og relevans for en norsk kontekst
A process of decision-making support: Exploring supported decision-making practice in Canada
Get PDFBackground: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making.
Method: The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters.
Results: A common process of decision-making support was discovered, involving dynamic interaction between the person’s will and preferences and supporters’ responses. This interaction was influenced by five factors: the experiences and attributes the person and their supporter brought to the process; the quality of their relationship; the decision-making environment and the nature and consequences of the decision.
Conclusion: The highly individualised and contextually dependent nature of decision-making support has implications for supported decision-making practice
The experience of adults living with chronic pain in the context of a neurological condition
Get PDFBackground: Sudden onset neurological conditions, such as spinal cord injury and stroke, are unexpected, life-changing events. Research suggests that survivors grieve the life they knew, while commonly trying to cope with significant impairments impacting their everyday life. Some impairments are condition specific while others are shared across conditions, such as chronic pain.
Aim: This research portfolio aimed to increase understanding of the experience of chronic pain following two sudden onset neurological conditions, namely spinal cord injury and stroke, in adults.
Design: The portfolio consists of two main research papers, a systematic review which thematically synthesises qualitative findings on adults’ experience of chronic neuropathic pain following spinal cord injury and an interpretative phenomenological analysis (IPA) study which investigates the experience of working age adults living with chronic post-stroke pain. These are presented alongside an introduction, bridging section, extended methodology, and overall discussion.
Findings: The systematic review identified six themes; ‘The pain as an unusual, intense, unpredictable and uncontrollable sensation’, ‘The pain’s influence on life’, ‘Trying to understand the pain’, ‘The challenge of describing the pain to others’, ‘The search for pain relief’ and ‘Learning pain acceptance over time’. The IPA study identified three master themes: ‘The solitude of the pain experience’, ‘Unsatisfactory healthcare and the need for self-care’ and ‘The development of pain acceptance’.
Conclusions: The findings suggest that spinal cord injury and stroke patients have similar experiences of living with chronic pain. The pain is described as an invisible impairment, which is difficult to relate to others and can easily be overlooked in the context of other visible, more prototypical impairments. Primary healthcare settings are described as lacking specialist knowledge, leading to unsatisfactory identification, diagnosis and treatment. Recommendations for clinical applications and future research are provided.måsjekke
Lockdown During COVID-19 and the Increase of Frailty in People With Neurological Conditions
Get PDFGovernments around the globe have introduced quarantine, lockdown, and mandatory isolation to slow the transmission of COVID-19. These public health and policy measures aim to protect the public and vulnerable people. This perspective paper argues that the impacts of lockdown (such as social disconnection, reduced exercise, and fewer physiotherapy treatments) may be amplified for people with neurological conditions with subsequent increases in frailty. The paper outlines why this may occur, and explores how adverse impacts for these vulnerable populations may be minimized through strategies such as telehealth, exercise programs, and health policies
Medisinsk avstandsoppfølging for pasienter med epilepsi : En kvalitativ studie om pasienter med epilepsi sine opplevelser, erfaringer og tanker om nytteverdi av digital skjemaløsning i medisinsk avstandsoppfølging
Get PDFBackground There is an increasing focus on the use of medical distance monitoring to improve the quality of patient care and increase the effectiveness of health care. Digital PRO-based solution is a new service for patients with epilepsy. The digital form the patient fills out is used as the basis for outpatient follow-up. Purpose The purpose of this study is to contribute knowledge to whether patients with epilepsy experience benefits of medical distance monitoring. The problem statement in the study was: "What experiences and thoughts do patients with epilepsy have about the utility of medical distance follow-up?" Selection and methodologyThe study has a qualitative method. Four semi-structured interviews were conducted of patients with epilepsy, who have used the PRO-based distance follow-up. Theoretical framework for mapping and analysis has been DeLone and McLean's (2003) Information System Success Model. Results/Conclusion The results show that there are different perceptions of PRO-based solution in medical distance follow-up. The informants in the study are largely satisfied with the treatment offered. Reduced travel time and less time spent in treatment impact the positive experiences the informants have with the digital scheduling solution. All informants in the study want to continue using the PRO-based solution, but they are uncertain of how this mode of treatment will affect their treatment over time. This is because they expect to be followed up regularly at the outpatient clinic, as distance follow-up is only a supplement to the treatment
Comparison of cognitive function, socioeconomic level, and the health-related quality of life between epileptic patients with attention deficit hyperactivity disorder and without
Get PDFBackground
Epilepsy is one of the most common neurological conditions. Attention deficit hyperactivity disorder (ADHD) in children with epilepsy proves to be very common. Both epilepsy and ADHD impair quality of life. We aimed to evaluate cognitive function, socioeconomic level, and quality of life (QOL) among children with ADHD and epilepsy. A total of 100 children were divided into 5 groups (20 children/group) as (I) epilepsy, (II) ADHD with epilepsy, (III) ADHD with EEG changes, (IV) ADHD without EEG changes, and (V) control. Children aged between 6 and 11 years were recruited for this study. Early Childhood Epilepsy Severity Scale (E-Chess), Conners’ Parent Rating Scale (CPRS), Wechsler Intelligence Scale for Children-3rd edition (WISC-III), socioeconomic scale for assessment of social burden and socioeconomic classes, and PedsQL (quality of life measure) assessed.
Results
Children with ADHD and epilepsy had the lowest PedsQL total scores and lower scores than other groups especially in performance IQ score. The highest percentage of low socioeconomic class (25%) was observed in the group of ADHD with epilepsy and the group of epilepsy.
Conclusion
ADHD with epilepsy is associated with low performance IQ, poor socioeconomic level, and quality of life. Pediatric Quality of Life Inventory scores show significant correlation with total IQ score in the group of ADHD with epilepsy
Development of an evidence-based practice framework to guide decisionmaking support for people with cognitive impairment due to acquired brain injury or intellectual disability
Get PDFPurpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.
Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.
Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.
Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.
Implications for Rehabilitation
Support for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives.
Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles.
The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability