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Article: Pierre Joseph Desault.

Beeson, B Barker

2021 Volume 5, Issue 4, Page(s) 342–348

Language	English
Publishing date	2021-05-04
Publishing country	United States
Document type	Journal Article
ZDB-ID	418598-5
ISSN	0743-3131
ISSN	0743-3131
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Article ; Online: Sleep disorders among Aboriginal Australians with Machado-Joseph Disease

Desireé LaGrappe / Libby Massey / Anuk Kruavit / Timothy Howarth / Gayangwa Lalara / Bronwyn Daniels / Julie Gungunbuy Wunungmurra / Kimberley Flavell / Ruth Barker / Howard Flavell / Subash S. Heraganahally

Neurobiology of Sleep and Circadian Rhythms, Vol 12, Iss , Pp 100075- (2022)

Quantitative results from a multiple methods study to assess the experience of people living with the disease and their caregivers

2022

Abstract: Background: Machado-Joseph Disease (MJD), or Spinocerebellar Ataxia Type 3 (SCA3), is ...

Abstract	Background: Machado-Joseph Disease (MJD), or Spinocerebellar Ataxia Type 3 (SCA3), is a genetic disorder that causes progressive muscle weakness, loss of motor control, ataxia and permanent physical disability. Sleep disturbances are associated with MJD but remain poorly understood. Objective: To investigate frequency and characteristics of sleep disorders and their association with health-related quality of life and psychosocial wellbeing for Aboriginal Australians living with MJD. Methods: A convenience sample of MJD participants n = 24 participated in a semi-attended, ambulatory diagnostic sleep study to capture polysomnography, actigraphy and sleep diary data. Self-report measures collected were the Pittsburgh Sleep Quality Index (PSQI), STOP-BANG Questionnaire for Obstructive Sleep Apnoea (OSA), International Restless Legs Syndrome Study Group rating scale (IRLS), Kessler-5 (K5) and EuroQoL-5 Dimension (EQ5D). Caregivers (n = 22) reported EQ-5D, K5 and bed partners’ sleep behaviour (Mayo Sleep Questionnaire-Informant). Environmental factors were measured. Results: We observed Nocturia, Sleep Related Leg Cramps, OSA, REM Behaviour Disorder, and RLS, respectively in 100%, 71%, 47%, 43%, and 33% of participants with a significant positive correlation between Body mass index (BMI) and Apnoea hypopnea index (AHI). The majority of sleep was spent in non-rapid eye movement sleep (NREM)-N2 stage (77.8% (67.7, 81.6)). Overcrowding (92%) and overnight care needs (42%) interrupted sleep. MJD participants and caregivers reported high psychological distress (K5 median 12.5 IQR 7, 16.5 & 8 IQR 6, 12 respectively). Conclusion: Poor sleep quality and sleep disturbances are prevalent among this cohort. Disease manifestations and environmental factors are driving factors. Larger sample sizes are required to predict risk factors and confirm observed associations.
Keywords	Machado-Joseph disease” ; “Spinocerebellar Ataxia type 3” ; “Ataxia” ; “Sleep” ; “Aboriginal” ; “Indigenous” ; Neurosciences. Biological psychiatry. Neuropsychiatry ; RC321-571 ; Biology (General) ; QH301-705.5
Subject code	610
Language	English
Publishing date	2022-05-01T00:00:00Z
Publisher	Elsevier
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Sleep disorders among Aboriginal Australians with Machado-Joseph Disease: Quantitative results from a multiple methods study to assess the experience of people living with the disease and their caregivers.

LaGrappe, Desireé / Massey, Libby / Kruavit, Anuk / Howarth, Timothy / Lalara, Gayangwa / Daniels, Bronwyn / Wunungmurra, Julie Gungunbuy / Flavell, Kimberley / Barker, Ruth / Flavell, Howard / Heraganahally, Subash S

Neurobiology of sleep and circadian rhythms

2022 Volume 12, Page(s) 100075

Abstract: Background: Machado-Joseph Disease (MJD), or Spinocerebellar Ataxia Type 3 (SCA3), is ...

Abstract	Background: Machado-Joseph Disease (MJD), or Spinocerebellar Ataxia Type 3 (SCA3), is a genetic disorder that causes progressive muscle weakness, loss of motor control, ataxia and permanent physical disability. Sleep disturbances are associated with MJD but remain poorly understood. Objective: To investigate frequency and characteristics of sleep disorders and their association with health-related quality of life and psychosocial wellbeing for Aboriginal Australians living with MJD. Methods: A convenience sample of MJD participants n = 24 participated in a semi-attended, ambulatory diagnostic sleep study to capture polysomnography, actigraphy and sleep diary data. Self-report measures collected were the Pittsburgh Sleep Quality Index (PSQI), STOP-BANG Questionnaire for Obstructive Sleep Apnoea (OSA), International Restless Legs Syndrome Study Group rating scale (IRLS), Kessler-5 (K5) and EuroQoL-5 Dimension (EQ5D). Caregivers (n = 22) reported EQ-5D, K5 and bed partners' sleep behaviour (Mayo Sleep Questionnaire-Informant). Environmental factors were measured. Results: We observed Nocturia, Sleep Related Leg Cramps, OSA, REM Behaviour Disorder, and RLS, respectively in 100%, 71%, 47%, 43%, and 33% of participants with a significant positive correlation between Body mass index (BMI) and Apnoea hypopnea index (AHI). The majority of sleep was spent in non-rapid eye movement sleep (NREM)-N2 stage (77.8% (67.7, 81.6)). Overcrowding (92%) and overnight care needs (42%) interrupted sleep. MJD participants and caregivers reported high psychological distress (K5 median 12.5 IQR 7, 16.5 & 8 IQR 6, 12 respectively). Conclusion: Poor sleep quality and sleep disturbances are prevalent among this cohort. Disease manifestations and environmental factors are driving factors. Larger sample sizes are required to predict risk factors and confirm observed associations.
Language	English
Publishing date	2022-04-22
Publishing country	United States
Document type	Journal Article
ISSN	2451-9944
ISSN (online)	2451-9944
DOI	10.1016/j.nbscr.2022.100075
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Yolŋu with Machado-Joseph disease: Exploring communication strengths and needs.

Amery, Rebecca / Wunungmurra, Julie G / Gondarra, Joanne / Gumbula, Farrah / Raghavendra, Parimala / Barker, Ruth / Theodoros, Deborah / Amery, Howard / Massey, Libby / Lowell, Anne

International journal of speech-language pathology

2019 Volume 22, Issue 5, Page(s) 499–510

Abstract: Purpose: ...

Abstract	Purpose:
MeSH term(s)	Communication ; Health Knowledge, Attitudes, Practice ; Humans ; Machado-Joseph Disease ; Oceanic Ancestry Group ; Professional-Patient Relations ; Speech-Language Pathology
Language	English
Publishing date	2019-10-14
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2402483-1
ISSN	1754-9515 ; 1754-9507
ISSN (online)	1754-9515
ISSN	1754-9507
DOI	10.1080/17549507.2019.1670863
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Article ; Online: Staying Strong Toolbox: Co-design of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph disease in the Top End of Australia.

Carr, Jennifer J / Lalara, Joyce / Lalara, Gayangwa / Lalara, Gwen / Daniels, Bronwyn / Clough, Alan R / Lowell, Anne / Barker, Ruth N

PloS one

2021 Volume 16, Issue 2, Page(s) e0244311

Abstract: ... with Machado-Joseph disease (MJD) walking and moving around. The knowledge of Aboriginal families living with MJD, combined ...

Abstract	Physical activity has positive health implications for individuals living with neurodegenerative diseases. The success of physical activity programs, particularly in culturally and linguistically diverse populations, is typically dependent on their alignment with the culture, lifestyle and environmental context of those involved. Aboriginal families living in remote communities in the Top End of Australia invited researchers to collaborate with them to co-design a physical activity and lifestyle program to keep individuals with Machado-Joseph disease (MJD) walking and moving around. The knowledge of Aboriginal families living with MJD, combined with findings from worldwide MJD research, formed the foundation for the co-design. An experience-based co-design (EBCD) approach, drawing from Indigenous and Participatory methodologies, was used. An expert panel of individuals with lived experience of MJD participated in a series of co-design phases. Prearranged and spontaneous co-design meetings were led by local community researchers within each phase. Data was collected using a culturally responsive ethnographic approach and analysed thematically. Sixteen panel members worked to develop the 'Staying Strong Toolbox' to cater for individuals with MJD who are 'walking strong'; or 'wobbly'; or 'in a wheelchair'. Based on the 'Staying Strong Framework', the Toolbox was developed as a spiral bound A3 book designed to guide the user to select from a range of activities to keep them walking and moving around and to identify those activities most important to them to work on. The 'Staying Strong Toolbox' is a community driven, evidence based resource for a physical activity and lifestyle program for Aboriginal families with MJD. The Toolbox provides a guide for health professionals and support workers to deliver person-centred support to Aboriginal families with MJD, and that can be modified for use by other families with MJD or people with other forms of ataxia around the world.
MeSH term(s)	Adult ; Australia ; Exercise ; Female ; Humans ; Life Style ; Machado-Joseph Disease/therapy ; Male ; Middle Aged ; Oceanic Ancestry Group ; Walking
Language	English
Publishing date	2021-02-05
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ISSN	1932-6203
ISSN (online)	1932-6203
DOI	10.1371/journal.pone.0244311
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia.

Carr, Jennifer J / Lalara, Joyce / Lalara, Gayangwa / Smith, Moira / Quaill, Jennifer / Clough, Alan R / Lowell, Anne / Barker, Ruth N

BMJ open

2019 Volume 9, Issue 9, Page(s) e032092

Abstract: Objectives: Machado-Joseph disease (MJD) is the most common spinocerebellar ataxia worldwide ...

Abstract	Objectives: Machado-Joseph disease (MJD) is the most common spinocerebellar ataxia worldwide. Prevalence is highest in affected remote Aboriginal communities of the Top End of Australia. Aboriginal families with MJD from Groote Eylandt believe 'staying strong on the inside and outside' works best to keep them walking and moving around, in accordance with six key domains that form the 'Staying Strong' Framework. The aim of this current study was to review the literature to: (1) map the range of interventions/strategies that have been explored to promote walking and moving around (functional mobility) for individuals with MJD and; (2) align these interventions to the 'Staying Strong' Framework described by Aboriginal families with MJD. Design: Scoping review. Data sources: Searches were conducted in July 2018 in MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Databases. Eligibility criteria for selecting studies: Peer-reviewed studies that (1) included adolescents/adults with MJD, (2) explored the effects of any intervention on mobility and (3) included a measure of mobility, function and/or ataxia were included in the review. Results: Thirty studies were included. Few studies involved participants with MJD alone (12/30). Most studies explored interventions that aligned with two 'Staying Strong' Framework domains, 'exercising your body' (n=13) and 'searching for good medicine' (n=17). Few studies aligned with the domains having 'something important to do' (n=2) or 'keeping yourself happy' (n=2). No studies aligned with the domains 'going country' or 'families helping each other'. Conclusions: Evidence for interventions to promote mobility that align with the 'Staying Strong' Framework were focused on staying strong on the outside (physically) with little reflection on staying strong on the inside (emotionally, mentally and spiritually). Findings suggest future research is required to investigate the benefits of lifestyle activity programmes that address both physical and psychosocial well-being for families with MJD.
MeSH term(s)	Australia ; Family ; Humans ; Locomotion ; Machado-Joseph Disease/physiopathology ; Machado-Joseph Disease/therapy ; Mobility Limitation ; Oceanic Ancestry Group ; Walking
Language	English
Publishing date	2019-09-30
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2019-032092
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Article ; Online: 'Staying strong on the inside and outside' to keep walking and moving around: Perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia.

Carr, Jennifer J / Lalara, Joyce / Lalara, Gayangwa / O'Hare, Gloria / Massey, Libby / Kenny, Nick / Pope, Kate E / Clough, Alan R / Lowell, Anne / Barker, Ruth N

PloS one

2019 Volume 14, Issue 3, Page(s) e0212953

Abstract: Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease ...

Abstract	Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia's Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where ~1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants' preferred language(s). Participants described their experience of living with MJD, from 'knowing about MJD', 'protecting yourself from MJD' and 'adjusting to life with MJD'. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. 'Staying strong on the inside and outside' (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: 'Exercising your body', 'having something important to do', 'keeping yourself happy', 'searching for good medicine', 'families helping each other' and 'going country'. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care.
MeSH term(s)	Adult ; Australia ; Disease Progression ; Family/psychology ; Female ; Grounded Theory ; Health Knowledge, Attitudes, Practice ; Humans ; Machado-Joseph Disease/psychology ; Machado-Joseph Disease/rehabilitation ; Male ; Middle Aged ; Native Hawaiian or Other Pacific Islander/psychology ; Qualitative Research ; Social Support ; Walking/physiology ; Walking/psychology
Language	English
Publishing date	2019-03-11
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0212953
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Article: In memoriam: Joseph Neal Sasser, 1921-2005

Barker, K.R / Triantaphyllou, A.C

Journal of nematology. 2006 Mar., v. 38, no. 1

2006

Keywords	nematology ; scientists ; zoologists ; root-knot nematodes ; Meloidogyne
Language	English
Dates of publication	2006-03
Size	p. 1-2.
Document type	Article
ZDB-ID	410426-2
ISSN	0022-300X
ISSN	0022-300X
Database	NAL-Catalogue (AGRICOLA)

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Article: Charles Joseph Nusbaum, 1906-1987

Barker, K.R / Aycock, R

Phytopathology. July 1988. v. 78 (7)

1988

Keywords	plant pathology ; university research ; United States
Language	English
Dates of publication	1988-07
Size	p. 885., ill.
Document type	Article
ZDB-ID	208889-7
ISSN	1943-7684 ; 0031-949X
ISSN (online)	1943-7684
ISSN	0031-949X
Database	NAL-Catalogue (AGRICOLA)

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Article: Charles Joseph Bartlett, 1864-1956.

BARKER, C

Connecticut state medical journal

1956 Volume 20, Issue 4, Page(s) 324–325

MeSH term(s)	History, 19th Century ; History, 20th Century ; Humans
Language	English
Publishing date	1956-04
Publishing country	United States
Document type	Biography ; Historical Article ; Journal Article
ZDB-ID	412599-x
ISSN	0096-0179
ISSN	0096-0179
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