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Choosing a measure of support need: implications for research and policy.

https://arctichealth.org/en/permalink/ahliterature148267
Source
J Intellect Disabil Res. 2009 Nov;53(11):949-54
Publication Type
Article
Date
Nov-2009
Author
H K Brown
H. Ouellette-Kuntz
I. Bielska
D. Elliott
Author Affiliation
Queen's University, Community Health & Epidemiology, Kingston, Ontario, Canada.
Source
J Intellect Disabil Res. 2009 Nov;53(11):949-54
Date
Nov-2009
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Adult
Female
Health Planning Guidelines
Health Policy
Health Services Research
Humans
Independent living
Intellectual Disability - rehabilitation
Male
Needs Assessment
Ontario
Rehabilitation, Vocational
Social Adjustment
Social Environment
Social Support
Young Adult
Abstract
The paradigm surrounding the delivery of care for individuals with intellectual disabilities (ID) is shifting from a deficit-based approach to a support-based approach. However, it is unclear whether measures of support act as a proxy for adaptive functioning.
A sample of 40 staff or family members of individuals with ID completed the Supports Intensity Scale and the Scales of Independent Behavior-Revised, Short Form. Correlations were used to examine the relationship between these scales.
The subscales of the Supports Intensity Scale as well as the overall support needs index were highly correlated with both the Broad Independence W score and the support score (which reflects both maladaptive and adaptive behaviours) of the Scales of Independent Behavior-Revised.
The strong correlations between these two scales confirm previous findings that current measures of support and measures of adaptive behaviour tap into the same underlying construct. These findings have implications for the development, use and interpretation of research and planning tools.
PubMed ID
19793387 View in PubMed
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Community-dwelling older adults with memory loss: needs assessment.

https://arctichealth.org/en/permalink/ahliterature115614
Source
Can Fam Physician. 2013 Mar;59(3):278-85
Publication Type
Article
Date
Mar-2013
Author
Karen Parsons
Aimee Surprenant
Anne-Marie Tracey
Marshall Godwin
Author Affiliation
Memorial University of Newfoundland, St John's, NL A1B 3V6. karenp@mun.ca
Source
Can Fam Physician. 2013 Mar;59(3):278-85
Date
Mar-2013
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Attitude to Health
Family Practice
Female
Focus Groups
Health Services for the Aged
Humans
Independent living
Interviews as Topic
Male
Memory Disorders - psychology - therapy
Middle Aged
Needs Assessment
Newfoundland and Labrador
Physician-Patient Relations
Qualitative Research
Social Support
Abstract
To identify the health-related needs of community-dwelling older adults with mild memory loss.
Qualitative study using semistructured, audiotaped, face-to-face interviews and focus groups.
A large community in Newfoundland.
Twenty-two adults between the ages of 58 and 80 years.
This needs assessment used a qualitative methodology of collecting and analyzing narrative data to develop an understanding of the issues, resources, and constraints of community-dwelling older adults with mild memory loss. Data were collected through semistructured, audiotaped, face-to-face interviews and focus groups. Transcripts of the interviews were analyzed using interpretive phenomenologic analysis.
Three constitutive patterns with relational themes and subthemes were identified: forgetting and remembering, normalizing yet questioning, and having limited knowledge of resources. Participants described many examples of how their daily lives were affected by forgetfulness. They had very little knowledge of resources that provided information or support. Most of the participants believed they could not discuss their memory problems with their family doctors.
It is important for older adults with mild memory loss to have access to resources that will assist them in understanding their condition and make them feel supported.
Notes
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Cites: ANS Adv Nurs Sci. 1986 Apr;8(3):27-373083765
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Cites: West J Nurs Res. 2007 Dec;29(8):976-9217984481
PubMed ID
23486801 View in PubMed
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Do personal assistance activities promote participation for persons with disabilities in Sweden?

https://arctichealth.org/en/permalink/ahliterature294940
Source
Disabil Rehabil. 2017 12; 39(24):2512-2521
Publication Type
Journal Article
Date
12-2017
Author
Heléne von Granitz
Ieva Reine
Karin Sonnander
Ulrika Winblad
Author Affiliation
a Department of Public Health and Caring Sciences , Uppsala University , Uppsala , Sweden.
Source
Disabil Rehabil. 2017 12; 39(24):2512-2521
Date
12-2017
Language
English
Publication Type
Journal Article
Keywords
Adolescent
Adult
Child
Disabled Persons - psychology - rehabilitation - statistics & numerical data
Female
Healthcare Disparities
Human Rights - standards
Humans
Independent Living - standards
Interpersonal Relations
Male
Middle Aged
Needs Assessment
Public Policy
Social Participation
Social Security - standards
Surveys and Questionnaires
Sweden - epidemiology
Abstract
To examine how the right to participation according to Article 19 of the United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD) is promoted by personal assistance use in Sweden across age, gender and eligible person categories.
Register data and data from a questionnaire were used (N?=?15,289). Principal component analysis was performed and the internal consistency was tested. Descriptive statistics (?2 test) were used across age, gender and eligible person categories and components.
An uneven distribution of personal assistance across the components Health and Care; Home, Leisure and Social Interaction; and Daily Occupation was found. Significant differences in personal assistance reported were found between children and adults, men and women and between the three eligible person categories.
The discrepancy between reported and expected outcome of personal assistance indicates that Article 19 of the UNCRPD has not been met. The unequal access to participation across age, gender and eligible person categories would seem to further signify that the Act concerning Support and Service for Persons with Certain Functional Impairments is promoting activities of a caring nature rather than fulfilling Article 19 of the UNCRPD, i.e. ensuring full participation in society. IMPLICATIONS FOR REHABILITATION Government assistance allowance were granted for predominantly health and care, i.e. basic needs presenting risk of undermining the intention of participation in society. Men reported more personal assistance use for activities promoting participation than women. The discrepancy found between reported and expected outcome of personal assistance underlines the importance of service providers and administrative officials being sensitive to policy intentions. There is a need of guidelines for service providers and administrative officials to promote disability rights of participation for persons eligible for personal assistance.
PubMed ID
27796138 View in PubMed
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Housing adaptations from the perspectives of Swedish occupational therapists.

https://arctichealth.org/en/permalink/ahliterature119518
Source
Scand J Occup Ther. 2013 May;20(3):228-40
Publication Type
Article
Date
May-2013
Author
Agneta Malmgren Fänge
Katarina Lindberg
Susanne Iwarsson
Author Affiliation
Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden. agneta.malmgren_fange@med.lu.se
Source
Scand J Occup Ther. 2013 May;20(3):228-40
Date
May-2013
Language
English
Publication Type
Article
Keywords
Attitude of Health Personnel
Case Management - organization & administration
Data Collection
Housing
Humans
Independent living
Needs Assessment
Occupational Therapy - organization & administration - psychology
Perception
Sweden
Abstract
The aim of this study was to investigate how occupational therapists in Sweden administer housing adaptation cases, how they perceive the housing adaptation process, and which improvements they consider necessary.
A total of 1 679 occupational therapists employed by the county councils or the local authorities (and involved in housing adaptations) participated in a web-based survey. The survey targeted issues related to referral and needs identification, assessment, certification, case progress feedback, and evaluation.
Less than half of the occupational therapists systematized the assessment prior to intervention and very few conducted any evaluation afterwards. Feedback from workmen or grant managers to the occupational therapists on each case's adaptation progress was often asked for but rarely given. The majority of the participants were satisfied with the housing adaptation process in general, while at the same time they indicated a need for further improvements in the process. Differences between occupational therapists related to employer and year of graduation were found on the majority of the targeted issues.
To conclude, to a very large extent housing adaptations seem to be based on non-standardized procedures for assessment, and only a few of them are evaluated systematically.
PubMed ID
23095046 View in PubMed
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Living alone with dementia: an interpretive phenomenological study with older women.

https://arctichealth.org/en/permalink/ahliterature142787
Source
J Adv Nurs. 2010 Aug;66(8):1698-707
Publication Type
Article
Date
Aug-2010
Author
Lorna de Witt
Jenny Ploeg
Margaret Black
Author Affiliation
Faculty of Nursing, University of Windsor, Ontario, Canada. ladewitt@uwindsor.ca
Source
J Adv Nurs. 2010 Aug;66(8):1698-707
Date
Aug-2010
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adaptation, Psychological
Aged
Aged, 80 and over
Attitude to Health
Dementia - drug therapy - physiopathology - psychology
Female
Health status
Humans
Independent Living - psychology
Marital status
Middle Aged
Needs Assessment
Ontario
Patient Acceptance of Health Care - psychology
Patient Advocacy
Qualitative Research
Time Factors
Abstract
This paper is a report of a study of the meaning of living alone from the perspective of older people with dementia.
Risks and problems experienced by older women living alone have been investigated mostly through quantitative research. Balancing their safety and autonomy is a serious international community care dilemma. Older people's perspectives have been muted in qualitative research on living alone with dementia.
Using an interpretive phenomenological approach and van Manen's method, 14 interviews were conducted in Ontario, Canada from January 2004 to April 2005 with eight older women diagnosed with Alzheimer disease or a related dementia.
The theme holding back time expressed the temporal meaning of living alone. Pharmacological treatments represented stored time, offering the opportunity to hold back future dreaded time. Past experience with others with dementia was a context for holding on to now and facing some risks of living alone with memory loss. The women acknowledged the limited time remaining for, and identified endpoints to, living alone.
Insight into the impact of past experience with others with dementia could inform nursing assessment and advocacy for health/social services that are sensitive to the potential emotional impact of mixing people with varied levels of dementia in the same programme.
Notes
Comment In: J Adv Nurs. 2010 Sep;66(9):213820740711
PubMed ID
20557395 View in PubMed
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Needs and care of older people living at home in Iceland.

https://arctichealth.org/en/permalink/ahliterature130632
Source
Scand J Public Health. 2012 Feb;40(1):1-9
Publication Type
Article
Date
Feb-2012
Author
Sigurveig H Sigurdardottir
Gerdt Sundstrom
Bo Malmberg
Marie Ernsth Bravell
Author Affiliation
Faculty of Social Work, School of Social Sciences, University of Iceland, Iceland. sighsig@hi.is
Source
Scand J Public Health. 2012 Feb;40(1):1-9
Date
Feb-2012
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Caregivers
Family Characteristics
Female
Health Care Surveys
Health Services Research
Health Services for the Aged - utilization
Home Care Services - utilization
Home Nursing - utilization
Humans
Iceland
Independent living
Male
Needs Assessment
Qualitative Research
Social Support
Abstract
The Icelandic old-age care system is universal and the official goal is to support older people live independently for as long as possible. The aim of this study is to analyse living conditions and use of formal and informal care of older people in Iceland.
The results are based on the new study ICEOLD, a telephone survey which included questions on social network, health, activities of daily living, and received support from the community and/or from relatives, neighbours, and friends.
Almost half of the sample (47%) receives some kind of care, with 27% of them receiving only informal care, which is understood to mean that informal care is of great importance and families are the main providers of help. For hypothetical future long-term care, older people wish to be cared for in their homes, but those already in need of assistance prefer to be cared for in institutions.
Caring relatives are the main providers of support to older people in their homes and it is important to provide them with suitable formal support when the care responsibility increases.
As the care system in Iceland is now under reconstruction, the important contribution of informal carers must be recognised and taken into account when planning the care of older people.
PubMed ID
21983193 View in PubMed
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Sense of coherence: effect on adherence and response to resistance training in older people with hip fracture history.

https://arctichealth.org/en/permalink/ahliterature115151
Source
J Aging Phys Act. 2014 Jan;22(1):138-45
Publication Type
Article
Date
Jan-2014
Author
Erja Portegijs
Sanna Read
Inka Pakkala
Mauri Kallinen
Ari Heinonen
Taina Rantanen
Markku Alen
Ilkka Kiviranta
Sanna Sihvonen
Sarianna Sipilä
Author Affiliation
Gerontology Research Center and Dept. of Health Sciences, University of Jyväskylä, Jyväskylä, Finland.
Source
J Aging Phys Act. 2014 Jan;22(1):138-45
Date
Jan-2014
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Aged
Aged, 80 and over
Female
Finland
Hip Fractures - physiopathology - psychology - rehabilitation
Humans
Independent living
Male
Mobility Limitation
Muscle Strength - physiology
Needs Assessment
Outcome Assessment (Health Care)
Patient Compliance - psychology - statistics & numerical data
Resistance Training - methods - statistics & numerical data
Sense of Coherence
Social Support
Walking - physiology
Abstract
Our aim was to study the effects of sense of coherence (SOC) on training adherence and interindividual changes in muscle strength, mobility, and balance after resistance training in older people with hip fracture history. These are secondary analyses of a 12-week randomized controlled trial of progressive resistance training in 60- to 85-year-old community-dwelling people 0.5-7 years after hip fracture (n = 45; ISRCTN34271567). Pre- and posttrial assessments included SOC, knee extension strength, walking speed, timed up-and-go (TUG), and Berg Balance Scale (BBS). Group-by-SOC interaction effects (repeated-measures ANOVA) were statistically significant for TUG (p = .005) and BBS (p = .040), but not for knee extension strength or walking speed. Weaker SOC was associated with poorer training adherence (mixed model; p = .009). Thus, more complicated physical tasks did not improve in those with weaker SOC, independently of training adherence. Older people with weaker SOC may need additional psychosocial support in physical rehabilitation programs to optimize training response.
PubMed ID
23538559 View in PubMed
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Theorizing accommodation in supportive home care for older people.

https://arctichealth.org/en/permalink/ahliterature117676
Source
J Aging Stud. 2013 Jan;27(1):30-7
Publication Type
Article
Date
Jan-2013
Author
Christine Ceci
Mary Ellen Purkis
Kristin Björnsdóttir
Author Affiliation
University of Alberta, Edmonton Clinic Health Academy, 11405 87 Avenue, Edmonton, Alberta, Canada. christine.ceci@ualberta.ca
Source
J Aging Stud. 2013 Jan;27(1):30-7
Date
Jan-2013
Language
English
Publication Type
Article
Keywords
Aged, 80 and over
Canada
Frail Elderly
Health services needs and demand
Health Services for the Aged - organization & administration
Home Care Services - organization & administration
Humans
Iceland
Independent living
Models, Theoretical
Needs Assessment
Abstract
This paper examines the issue of what thinking is necessary in order to advance a notion of accommodation in the organization and provision of supportive home care for older people. Accommodation in this context is understood as responsiveness to the singularity of older adults, and we consider how this idea might be used to support opportunities for (independent) living for elders as they age and become frailer. To elaborate the question we draw on examples from our empirical work - ethnographic studies of home care practice undertaken in Canada and Iceland - and consider these examples in light of critical philosophical and social theory, particularly Agamben's (1993) work, The Coming Community. This is a relevant frame through which to consider the potential for the accommodation of the unique needs of older adults in home care because it helps us to problematize the systems through which care is accomplished and the current, dominant terms of relations between individuals and collectives. We argue that giving substance to a notion of accommodation contributes an important dimension to aligned ideas, such as patient-centeredness in care, by working to shift the intentionality of these practices. That is, accommodation, as an orientation to care practices, contests the organizational impulse to carry on in the usual way.
PubMed ID
23273554 View in PubMed
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[The perception of seniors Francophones in a minority situation coping with the challenges and issues related to the maintenance at home in urban areas New Brunswickers].

https://arctichealth.org/en/permalink/ahliterature105853
Source
Can J Public Health. 2013;104(6 Suppl 1):S71-4
Publication Type
Article
Date
2013
Author
Suzanne M Dupuis-Blanchard
Majella Simard
Odette N Gould
Lita Villalon
Author Affiliation
Université de Moncton. suzanne.dupuis-blanchard@umoncton.ca.
Source
Can J Public Health. 2013;104(6 Suppl 1):S71-4
Date
2013
Language
French
Publication Type
Article
Keywords
Adaptation, Psychological
Aged
Anthropology, Cultural
Female
Focus Groups
Humans
Independent Living - psychology
Language
Male
Middle Aged
Minority Groups - psychology - statistics & numerical data
Needs Assessment
New Brunswick
Personal Satisfaction
Qualitative Research
Social Support
Urban Population
Abstract
Explore the needs and the degree of satisfaction of Francophone seniors living in a minority socio-linguistic urban community in regards to aging-in-place.
An ethnographic case study was conducted in an urban community in the province of New Brunswick between October 2010 and June 2011. Individual interviews were completed with leaders of different community organizations (n=9) and focus groups were held with socio-linguistic minority French-speaking older adults (n=19).
Francophone seniors explained their willingness to age-in-place; however, the lack of services and support in the community makes aging-in-place difficult. Despite this identified absence of services, leaders of various community organizations have no plans to review current services in order to facilitate better quality of life for seniors.
Aging-in-place for French-speaking seniors living in socio-linguistic minority communities requires concerted efforts from family members, the community and the government. The Ottawa Charter of Health clearly states housing as a prerequisite of health. Housing and social support are important determinants of health. Therefore, the development and implementation of a public policy with regard to seniors, and particularly those in a socio-linguistic minority, seems fundamental in the context of population aging.
PubMed ID
24300326 View in PubMed
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The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference?

https://arctichealth.org/en/permalink/ahliterature264703
Source
Int Psychogeriatr. 2014 Dec;26(12):2011-21
Publication Type
Article
Date
Dec-2014
Author
Rita Jentoft
Torhild Holthe
Cathrine Arntzen
Source
Int Psychogeriatr. 2014 Dec;26(12):2011-21
Date
Dec-2014
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adult
Age of Onset
Caregivers - psychology
Dementia - diagnosis - epidemiology - etiology - psychology
Female
Humans
Independent Living - psychology
Longitudinal Studies
Male
Middle Aged
Needs Assessment
Norway - epidemiology
Patient Education as Topic - methods - organization & administration
Qualitative Research
Self-Help Devices - psychology
Social Support
Television
Abstract
This study was a part of a larger study exploring the impact of assistive technology on the lives of young people living with dementia (YPD). This paper focuses on one of the most useful devices, the simple remote control (SRC). The objective was to explore the reason why the SRC is significant and beneficial in the everyday lives of YPD and their caregivers.
This qualitative longitudinal study had a participatory design. Eight participants received an SRC. The range for using it was 0-15 months. In-depth interviews and observations were conducted at baseline and repeated every third month up to 18 months. A situated learning approach was used in the analysis to provide a deeper understanding of the significance and use of SRC.
Young people having dementia spend a substantial amount of time alone. Watching television was reported to be important, but handling remote controls was challenging and created a variety of problems. YPD learned to use SRC, which made important differences in the everyday lives of all family members. Comprehensive support from caregivers and professionals was important for YPD in the learning process.
The SRC was deemed a success because it solved challenges regarding the use of television in everyday lives of families. The design was recognizable and user-friendly, thus allowing YPD to learn its operation. Access to professional support and advice regarding assistive technology is vital for establishing a system for follow-up and continued collaboration to make future adaptations and adjustments.
PubMed ID
24932651 View in PubMed
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11 records – page 1 of 2.