ORCID Profile
0000-0002-5264-4997
Current Organisation
Queen's University
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Publisher: AOSIS
Date: 16-02-2023
Abstract: Background: Family quality of life (FQOL) is an important outcome for families of children with disabilities globally and provision of support is associated with enhanced FQOL. However, FQOL research primarily focuses on conceptualisation and measurement, and originates from high-income contexts despite the fact that most children with disabilities live in low-income countries.Objectives: The authors examined how Ethiopian disability support providers practically contribute to meeting the needs of families of children with disabilities to enhance FQOL.Method: Building on a previous study exploring Ethiopian families’ perspectives on FQOL, the authors used an exploratory descriptive qualitative approach to interview various support providers. Interviews were conducted virtually (because of the coronavirus disease 2019 [COVID-19] pandemic) in English or with interpreting assistance. Audio-recorded interviews were transcribed verbatim and analysed thematically.Results: Support providers affirmed what families had described as important for FQOL – spirituality, relationships, self-sufficiency – and recognised their enormous support needs. They described various ways to support families – emotionally, physically, materially and informationally. They also expressed challenges and their need for support to meet families’ needs.Conclusion: Ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family’s needs and disability awareness-raising. Collaborative and committed engagement from all stakeholders is necessary to support Ethiopian families to flourish.Contribution: This study contributes to global understandings of FQOL and describes practical approaches to support families of children with disabilities in an African context. The findings of this study highlight the influence of spirituality, relationships, self-sufficiency, poverty and stigma and the need for holistic support and disability awareness-raising to enhance FQOL.
Publisher: BMJ
Date: 08-2002
Abstract: To determine the pattern of motor neurone loss in amyotrophic lateral sclerosis (ALS). In particular, to determine whether there is a gradual life long presymptomatic motor neurone loss or, alternatively, a sudden catastrophic loss just before the onset of symptoms. The statistical motor unit number estimation (MUNE) technique was used in a longitudinal study of 19 asymptomatic carriers of the Cu, Zn superoxide dismutase 1 (SOD1) gene. MUNE results were compared with those of 34 age and sex matched SOD1 negative family controls and 23 population controls. Motor neurone loss was also estimated in 12 patients with sporadic ALS. 84 subjects (43 male and 41 female patients) with an age range from 16-73 years were followed up over three years, both clinically and by MUNE, every six months. In 2 of the 19 mutation carriers, there was a sudden reduction in MUNE several months before the onset of weakness. The patients with symptomatic sporadic ALS also had a reduced MUNE, but there was no detectable loss of motor neurones in the remainder of the subjects. MUNE can be used to detect preclinical loss of motor units in familial ALS. Normal numbers of motor neurones were maintained in 17 SOD1 mutation carriers over the three year period. There was an abrupt loss of motor neurones just before the onset of symptomatic weakness in two SOD1 mutation carriers. These results suggest that some form of trigger may initiate rapid cell loss and death of motor neurones just before the onset of symptoms.
Publisher: Springer Science and Business Media LLC
Date: 24-10-2021
Publisher: MDPI AG
Date: 21-08-2021
DOI: 10.3390/DISABILITIES1030018
Abstract: There has been increasing attention to quality of life for families supporting children with disabilities internationally however, there is minimal research on family quality of life (FQOL) in low-income countries, and specifically in African contexts. This study explored how Ethiopian families of children with disabilities conceptualised FQOL and what they perceived their support needs related to FQOL were. Using a qualitative exploratory descriptive design, we interviewed Ethiopian family members of children with various disabilities. Audio-recorded interviews were transcribed verbatim and translated into English with professional translation assistance. We analysed translated transcripts inductively based on Braun and Clarke’s approach to thematic analysis. We found that spirituality was core to families and that they described FQOL in terms of their relationships within the immediate family and with the community. Additionally, families wanted to be self-sufficient and provide for themselves, but with the additional challenges of raising a child with a disability and pervasive poverty, they recognised their need for more support. Therefore, providing holistic, family-centred services to Ethiopian families of children with disabilities can contribute to enhancing FQOL.
Publisher: Springer Science and Business Media LLC
Date: 18-09-2021
DOI: 10.1007/S11136-021-02994-Z
Abstract: Family Quality of Life (FQOL) is an important outcome for families of children with disabilities and is influenced by context and culture. Minimal research explores FQOL in African contexts. This scoping review identifies factors contributing to FQOL for families of children with disabilities in African contexts. We were guided by Arksey and O'Malley's scoping review framework, searching for research papers from the following electronic databases: CINAHL, Embase, Medline, Global Health, and PsycINFO. Using pre-determined eligibility criteria, two authors independently reviewed articles for inclusion via Covidence, a reference manager that facilitates blind reviewing. Two other authors independently extracted data from studies using a data-charting form based on Zuna and colleagues' FQOL framework. Reviewers met regularly for discussion to reach consensus. Fifty-three articles met the inclusion criteria, and findings demonstrated a broad variety of factors contributing to FQOL within the FQOL framework related to family unit factors, in idual member factors, and external support factors. We found that poverty, stigma, and spirituality were particularly prominent factors affecting FQOL negatively and positively in African contexts. Whilst there are universal factors that contribute to FQOL, recognising the influence of context-specific factors (i.e. poverty, stigma, spirituality) is important in order to provide effective, culturally relevant support that enhances FQOL for families of children with disabilities in African contexts.
Publisher: Informa UK Limited
Date: 2005
DOI: 10.1080/00207450590914392
Abstract: The age of onset of motor neuron disease in Cu/Zn superoxide dismutase 1 (SOD1) mutation carriers are variable, commencing at any time from the second decade. The authors performed a retrospective analysis of family information in pedigrees dating back to the 1780s, to determine the age-dependent penetrance of three different SOD1 mutations: Glu100Gly, Ile113Thr, and Val148G1y. The penetrance of symptomatic MND in these three SOD1 mutations was greater than 95% by the age of 78. The affected family members with the Val148Gly mutation had the worst prognosis, with a mean age of death of 46.1 years, compared to 54.2 years for the Glu100Gly mutation and 59.9 years for Ile113Thr mutation. Kaplan-Meier survival curves showed that survival of the 3 SOD1 mutation families, when combined, was reduced by nearly 10 years with the mean age of death for all SOD1 mutation carriers being 52.6 years compared to 62.5 years for the control in iduals. The SOD1 mutation group also resulted in earlier death compared to sporadic MND, which from natural history studies is 61.4 years. This may reflect that the SOD1 mutation is associated with more progressive and rapid disease, as the age of onset of disease was not earlier. This information would have important implications for genetic counseling of members of in idual SOD1 mutation carrier families.
Publisher: Wiley
Date: 20-07-2020
DOI: 10.1002/CNR2.1265
Publisher: Cold Spring Harbor Laboratory
Date: 11-05-2023
DOI: 10.1101/2023.05.10.23289771
Abstract: Introduction: Recent changes in opioid prescribing guidelines have led to an increasing number of patients with chronic pain being recommended to taper. However, opioid tapering can be challenging, and many patients require support. Objectives: We evaluated the feasibility, acceptability, and potential efficacy of a co-designed psycho-educational video and SMS text messaging intervention to support patients with chronic pain during prescription opioid tapering. Methods: A pilot randomised controlled trial was conducted. In addition to their usual care, participants in the intervention group received a psycho-educational video and 28 days of text messages (two SMS/day). The control group received usual care. The feasibility, acceptability, and potential efficacy of the intervention were evaluated. The primary outcome was opioid tapering self-efficacy. Secondary outcomes were pain intensity and interference, anxiety and depression symptom severity, pain catastrophising, and pain self-efficacy. Results: Of 28 randomised participants, 26 completed the study (13 in each group). Text message delivery was 99.2% successful. Most participants rated the messages as useful, supportive, encouraging, and engaging, 78.5% would recommend the intervention to others, and 64% desired a longer intervention period. Tapering self-efficacy (Cohen’s d = 0.74) and pain self-efficacy ( d = 0.41) were higher and pain intensity ( d = 0.65) and affective interference ( d = 0.45) lower in the intervention group at week 4. Conclusions: It is feasible, acceptable, and potentially efficacious to support patients with chronic pain during prescription opioid tapering with a psycho-educational video and SMS text messaging intervention. A definitive trial has been initiated to test a 12-week intervention.
Publisher: BMJ
Date: 10-2001
Abstract: To understand the mechanisms causing neuronal death in amyotrophic lateral sclerosis (ALS), an electrophysiological technique of motor unit number estimation (MUNE) was used to examine the pattern of motor neuron loss in amyotrophic lateral sclerosis. The aim was to determine whether gradual lifelong loss of motor units precedes clinical disease or whether sudden, catastrophic loss of motor units occurs at the onset of the disease. Using the statistical technique of motor unit number estimation, a cross sectional study was performed on a group of asymptomatic carriers of the Cu, Zn superoxide dimutase 1 (SOD1) gene. MUNE results were compared with those from age and sex matched family controls who did not carry the SOD1 mutation. A total of 87 subjects (45 men and 42 women) with an age range from 16-73 years of age were studied. There was no detectable difference in the number of motor units in SOD1 mutation carriers compared with SOD1 negative family controls or population controls. Symptomatic subjects showed a definite loss of motor units. The test-retest reproducibility of this technique yielded an average difference between MUNE results on separate occasions on the same subject of +/-5%. The finding that presymptomatic SOD1 mutation carriers have a full complement of motor neurons indicates that mutation carriers must have normal survival of motor neurons until rapid and widespread cell death of these neurons occurs, coinciding with the onset of clinical features. This implies that symptomatic ALS is not the end result of a slow attrition of motor neurons.
No related grants have been discovered for Arun Aggarwal.