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Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach

THALEN, Marloes
VAN OORSOUW, Wietske M W J
VOLKERS, Karin M
TAMINIAU, Elsbeth F
EMBREGTS, Petri J C M
2021

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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.

The value of powered mobility scooters from the perspective of elderly spouses of the users – a qualitative study

FREDRIKSSON, Carin
PETTERSSON, Ingvor
HAGBERG, Lars
HERMANSSON, Liselotte
2020

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Purpose

To explore spouses’ experiences of the value of mobility scooters prescribed to their partner.

 

Material and Methods

A descriptive design with a qualitative approach was used. Thirteen spouses (11 females) aged 65–86 years participated. Semi-structured interviews were conducted when the spouse’s partner had had the mobility scooter for 4–6 months. The interviews were analysed using qualitative content analysis.

 

Results

The interviews showed primarily that the spouses experienced that their everyday lives and life situation had improved since their partner had received a mobility scooter. They reported that they could engage in activities of their own choice to a greater extent. The prescription of a mobility scooter to their partner had also yielded a sense of freedom related to shared activities. On the other hand, the spouses described some of the scooter’s limitations. Three categories emerged: a sense of freedom related to the spouse’s own activities, a sense of freedom related to shared activities and a somewhat restricted freedom.

 

Conclusion

Prescription of a powered mobility scooter was of value to the users’ spouses because it facilitated independent and shared activities and participation in the community. The value was mainly expressed as a sense of freedom when doing things on their own or together with their partner. Spouses are key persons in the rehabilitation of people with mobility restrictions. Their views on the assistive device may influence the rehabilitation process. Knowledge of spouses’ experiences is thus crucial, as this may influence the future rehabilitation outcome.

The Significance of Person-Centered Care for Satisfaction With Care and Well-Being Among Informal Caregivers of Persons With Severe Intellectual Disability

HAKOBYAN, Liana
NIEBOER, Anna P
FINKEN߆GEL, Harry
CRAMM, Jane M
2019

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Person-centered care (PCC) delivery and co-creation of care (establishing productive patient-professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person-centered care (PCC) and co-creation of care as well. This study aims to identify the relationship between PCC, co-creation of care and outcomes among informal caregivers of PWID. A cross-sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other

family member). All PWID were living in residential homes of a long-term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty-one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co-creation of care were positively related to informal caregivers’ satisfaction with care and their own well-being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well-being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co-creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well-being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co-creation of care matter for satisfaction with care and the well-being of informal caregivers of PWID.

Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature

RAMANANDI, Vivek H
PARMAR, Trupti Rudra
PANCHAL, Juhi Kalpesh
PRABHAKAR, M M
et al
2019

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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

 

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

 

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Making it work: experience of living with a person who falls due to multiple sclerosis

CARLING, Anna
NILSAGARD, Yiva
FORSBERG, Anette
October 2018

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Purpose: The purpose of this study was to describe how everyday life is experienced by next of kin sharing residence with a person who falls due to multiple sclerosis (MS).

 

Methods: Twenty face-to-face interviews were analysed using a qualitative content analysis.

 

Results: The overall theme “Making it work” represents the next of kin’s struggle to make life work. It comprises three themes: “Taking responsibility”, “Making adjustments”, and “Standing aside for someone else”. The two first themes reflect what relatives do to make the situation work, and the last theme represents what they give up.

 

Conclusion: Next of kin who share residence and everyday life with a person with MS are affected by that person’s occasional falls. They often take on the responsibility of preventing such falls and adapt their lives practically and emotionally. However, adaptation is neither always enough or always possible. In these cases, relatives often deprioritize their own needs and free time to make everyday life in the home work.

Kinect4FOG: monitoring and improving mobility in people with Parkinson’s using a novel system incorporating the Microsoft Kinect v2

AMINI, Amin
BANITSAS, Konstantinos
YOUNG, William R
2018

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Parkinson’s is a neurodegenerative condition associated with several motor symptoms including tremors and slowness of movement. Freezing of gait (FOG); the sensation of one’s feet being “glued” to the floor, is one of the most debilitating symptoms associated with advanced Parkinson’s. FOG not only contributes to falls and related injuries, but also compromises quality of life as people often avoid engaging in functional daily activities both inside and outside the home. In the current study, we describe a novel system designed to detect FOG and falling in people with Parkinson’s (PwP) as well as monitoring and improving their mobility using laser-based visual cues cast by an automated laser system. The system utilizes a RGB-D sensor based on Microsoft Kinect v2 and a laser casting system consisting of two servo motors and an Arduino microcontroller. This system was evaluated by 15 PwP with FOG. Here, we present details of the system along with a summary of feedback provided by PwP. Despite limitations regarding its outdoor use, feedback was very positive in terms of domestic usability and convenience, where 12/15 PwP showed interest in installing and using the system at their homes.

Supporting Parents in Caring for Children with Disability in Ghana

BESTEN, Joyce den
CORNIELJE, Marije Tebogo
CORNIELJE, Huib
BOTWEY, David Norden
2016

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Purpose: This study assesses the factors that influence the wellbeing of caregivers and their children with a disability, in a rural and an urban site in Ghana. The wellbeing of parents, not surprisingly, influences the wellbeing of their children. A better understanding of the role and challenges faced by parents in caring for their child with a disability will help to improve existing services and support for children with disability.

 

Methods: Twenty-five parents of children with different disabilities participated in a PhotoVoice study. Photographs taken by parents, to show the challenges they experienced in childcare, were explained and discussed during focus group discussions. The Cantril Ladder was used to discuss subjective wellbeing.

 

Results: The photographs and discussions with parents indicated that the extensive time spent on their child, the child’s poor health status, and lack of educational opportunities had a negative influence on the wellbeing of both parent and child. Parents struggle to earn an income to provide for a child with disability. This often causes them to sink into (even deeper) poverty, and further increases the challenge to provide the (specific) care that a child with disability needs.

 

Conclusions and Implications: If governments, non-governmental organisations and community-based organisations want to contribute to the wellbeing of children with disability, they should be aware of the immediate context of the child, namely the family, and of the specific needs of the parents. Since the wellbeing of parents can affect the wellbeing of the child, and a child with disability may often cause further poverty in the family, relieving parents from some of the demands of childcare could help them to generate income, to the ultimate benefit of the entire family. Organisations working for children with a disability should actively involve parents of these children in designing and implementing interventions.

Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers

DAMBI, Jermaine M
JELSMA, Jennifer
MLAMBO, Tecla
2015

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Background: The needs of caregivers of children with disability may not be recognized despite evidence to suggest that they experience increased strain because of their care-giving role. This strain may be exacerbated if they live in under-resourced areas.

 

Objectives: We set out to establish the well-being of caregivers of children with Cerebral Palsy (CP) living in high-density areas of Harare, Zimbabwe. In addition, we wished to identify factors that might be predictive of caregivers’ well-being. Finally, we examined the psychometric properties of the Caregiver Strain Index (CSI) within the context of the study.

 

Method: Caregivers of 46 children with CP were assessed twice, at baseline, and after three months, for perceived burden of care and health-related quality of life (HRQoL) using CSI and EQ-5D respectively. The psychometric properties of the CSI were assessed post hoc.

 

Results: The caregivers reported considerable caregiver burden with half of the caregivers reporting CSI scores in the ‘clinical distress’ range. Many of the caregivers experienced some form of pain, depression and expressed that they were overwhelmed by the care-giving role. No variable was found to be associated with clinical distress. The CSI demonstrated good overall internal consistency (Cronbach’s Alpha = 0.8), stability over time (Z = 0.87, p = 0.381) and was significantly and negatively correlated with the EQ-5D VAS (Spearman’s rho = −0.33, p = 0.027), demonstrating concurrent validity.

 

Conclusion: Caregivers must be monitored routinely for their level of distress and there is an urgent need to provide them with support. The CSI is likely to be a valid measure of distress in this population.

Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods

Zuurmond, Maria A
Mahmud, Ilias
Polack, Sarah
Evans, Jenny
2015

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Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions.

 

Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.

 

Methods: The study used mixed methods. The PedsQLTMFamily Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012.

 

Results: The mean overall and sub-scale PedsQLTM scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.

 

Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.

The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation

Raj, Lavanya J
Pitchai, Swarnakumari
2015

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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.

 

Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.

 

Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.

 

Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.

Characteristics and Quality of Life Among People Living with HIV at Drop-in Centres and Shelter Homes in Malaysia

SIAH, P C
TAN, J H
2014

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Purpose: The aim of the study was to examine whether there are any significant differences in demographic characteristics and health-related Quality of Life (QoL) among people living with HIV (PLWH) at shelter homes and drop-in centres in Malaysia.

 

Method: 117 PLWH were recruited by using the purposive sampling method. Data were collected through a questionnaire survey.

 

Results: Significant differences were found between PLWH at shelter homes and drop-in centres, in their demographic characteristics and in the 3 factors in the HIV/AIDS-Targeted Quality of Life Instruments (HAT-QoL) – namely, overall function, health worries, and provider trust.

 

Conclusion: Due to the differences in characteristics and QoL among PLWH in these two settings, different approaches are suggested to assist PLWH from shelter homes and drop-in centres.

Children with Disability in Nepal: New Hope Through CBR?

MOL, Tanja Ingeborg
BRAKEL, Wim Van
SCHREURS, Merel
2014

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Purpose: This study assesses the impact of a community-based rehabilitation (CBR) programme on the quality of life (QoL) of children with disability and their families.

 

Methods: A qualitative approach was applied, using two techniques - a ranking line and semi-structured interviews. Nineteen children (ranging from 4 –18 years of age) were interviewed in their homes located in three villages - Chapakhori, Bokraha and Madesha - in Nepal.

 

Results: Children with disability and their families ranked physical health, psychological health, empowerment and level of independence as the most important factors for their QoL. Of the 19 children, 13 had experienced positive changes in their life and 1 child reported a negative change. The positive changes related mainly to their physical health and functioning. The impact of these changes was felt in the ‘social’, ‘level of independence’ and ‘empowerment’ outcome categories. The children mentioned that they had more friends, experienced less stigma, could go to school and were more hopeful about the future.

 

Conclusions: This CBR programme has brought about changes in the QoL of all children with disability and their families. The majority of them reported a positive impact.

 

 

The Relationship Between Gross Motor Function and Quality of Life Among Children with Cerebral Palsy

PUSPITASARI, M
RUSMIL, K
GURNIDA, D
2014

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Purpose: The aim of this study was to determine the relationship between gross motor function and quality of life among children with Cerebral Palsy (CP).

 

Method: This observational analytical study with cross-sectional design, was conducted at Yayasan Pembinaan Anak Cacat (YPAC) Bandung, Sekolah Luar Biasa (SLB) Cileunyi, and Paediatric Neurology Clinic of Dr. Hasan Sadikin Hospital Bandung, Indonesia, from March 2011 to September 2012. Gross motor function was assessed using Gross Motor Function Scale (GMFCS). Cerebral Palsy-Quality of Life (CP-QOL) questionnaire for parent-proxy version was used to assess quality of life of children with CP. Statistical analysis was done using Spearman rank test to determine the relationship between variables.

 

Results: Participants were 31 children with CP, between 4 -12 years of age. The most common type of CP was spastic quadriplegia (17 of the 31 children). Around 17 children had mild disability (GMFCS level I and II), 3 children had moderate disability (GMFCS level III), and 16 children had severe disability (GMFCS level IV and V). Majority of the parents had senior high school level education. Most of the fathers were self-employed while most of the mothers were housewives. Gross motor function was not significantly correlated to quality of life in general in children with CP (rs=-0.153, p=0.205). Although gross motor function was significantly correlated to pain and the impact of disability (rs=-0.313, p=0.043), other aspects of quality of life (social well-being and acceptance, feeling about functioning, participation and physical health, emotional well-being and self-confidence, access to services, and family health) were not significantly correlated (p>0,05) to it.

 

Conclusions: Gross motor function in children with CP was correlated to pain and the impact of disability domain of quality of life.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Mental Health and Quality of Life of Caregivers of Individuals with Cerebral Palsy in a Community Based Rehabilitation Programme in Rural Karnataka

DEEPTHI, N
KRISHANMURTHY, A
2012

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Background: Cerebral palsy is a type of non-progressive central nervous system disorder with multiple impairments. As there are sensory, communicatory and intellectual impairments, providing care at home may be stressful and affect to the physical and mental health of the caregivers. This in turn could interfere with rehabilitation of persons with cerebral palsy.

 

Purpose: This study assesses the mental health status and quality of life of caregivers of persons with disabilities. The study group consisted of caregivers of 23 children with cerebral palsy and intellectual disability.

 

Method: The needs of the children with disabilities were assessed using a pre- tested interview schedule, while caregivers were administered GHQ-28 and WHO-QOL.

 

Results: Thirteen (56.52%) of the primary caregivers tested positive for GHQ. The psychological and environmental domains of QOL were found to be most affected, while the physical and social domains were relatively better.

 

Conclusion: There was a significant (p<0.05) correlation between the GHQ scores and quality of life.

The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh

TSUTSUMI, Atsuro
et al
March 2007

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"The present study aims to determine the quality of life (QOL) and general mental health of leprosy patients compared with the general population, and evaluate contributing factors such as socio-economic characteristics and perceived stigma. A total of 189 patients (160 outpatients, 29 inpatients) and 200 controls without leprosy or other chronic diseases were selected from Dhaka district, Bangladesh, using stratified random sampling"
Social Science Medicine Journal, Vol 64, Issue 12

A review of community based rehabilitation evaluations : quality of life as an outcome measure for future evaluations

MANNAN, Hasheem
TURNBULL, Ann P
2007

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"This review examines key articles in evaluation of community-based rehabilitation carried out in developing countries and proposes family quality of life as an outcome measure of community-based rehabilitation. The concept of community-based rehabilitation is reviewed, quality of life and family quality of life measurement scale is presented. It presents a practical approach to future evaluations of community-based rehabilitation programmes. This review presents the features of community-based rehabilitation evaluation (i.e., service delivery system, technology transfer, community involvement, and organisation and management), methodology, and findings. Implications are defined for the enhancement of community based rehabilitation through practical suggestions for programme coordinators involved in community development for rehabilitation, equalisation of opportunities, and social inclusion of people with disabilities"

 

Asia Pacific Disability Rehabilitation Journal, Vol 18, No 1

Impacts of poverty on quality of life in families of children with disabilities

PARK, Jiyeon
TURNBULL, Ann P
TURNBULL, H. Rutherford
2002

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This literature review examines the impact of poverty on the quality of life in families of children with disabilities in the USA. The article examines the impact of poverty relating to the five dimensions of family, including health, productivity, physical environment, emotional well-being and family interaction. It provides suggestions for policy, research and practices. This article is useful for people interested in the impact of poverty on the quality of life in families of children with disabilities in the USA
Exceptional Children Journal, Vol 68, No 2

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