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Resisting cooptation of disability justice revolutionary dreams

BROWN, Lydia, X. Z.
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023

 

A short talk concerning the disability justice framework. The framework was co-created by a coalition of disabled people, mainly of colour and from the LGBT community in 2005-2006.

Topics discussed include: disability rights, institutions, ableism and the wider meaning of disability justice.  

Local innovation and production ecosystem building in Nepal

OLDFREY, Ben
BAJRACHARYA, Amit Ratna
GURUNG, Ganga
LAL SHRESTHA, Pratisthil
CHANDRA THAPA, Ram
September 2023

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A series of short talks concerned with local innovation and production of AT devices in Nepal given by representatives of members of the associated ecosystem. A short history of the projects is presented. The devastating earthquake in 2015 and COVID both demonstrated the necessity for local innovation, production, repair and maintenance of AT. Three workstreams are ongoing: codesigning for individual needs; manual wheelchairs; and repair and spare part production. The need to develop local OT services in Nepal, particularly of bespoke provision, codesigning with the user to ensure achievable goals with a developed therapeutic intervention plan, is highlighted. Innovative AT associated with the knee joint and a diabetic foot and also a temperature monitoring device are shown and problems with local product validation are highlighted.  Ram Chandra Thapa (founder of Zener Technologies) describes the use of 3D printing in emergency engineering situations. He briefly describes his current project concerning wheelchairs, outlining associated difficulties, the local production ecosystem and the assessment of which parts are the most important for maintenance needs. The need for training and also finance to take a product from innovation to production are mentionned.

WHO disability-inclusive health services training package: a companion to the Disability-inclusive health services toolkit. A resource for health facilities in the Western Pacific Region

WORLD HEALTH ORGANISATION (WHO) WESTERN PACIFIC
June 2023

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The WHO Disability-Inclusive Health Services Training Package is a companion to the “WHO Disability-Inclusive Health Services Toolkit: A resource for health facilities in the Western Pacific Region” published by WHO in 2020. This package offers a range of additional training materials including presentations, workbooks and videos that will allow users to develop the foundational skills and understanding of the Toolkit for its implementation. Together the Toolkit and Training Package will help ensure equitable access to health services, best-quality outcomes and improved quality of life for all people with disabilities to achieve universal health coverage.

Preventing lifelong impairment: Access to clubfoot treatment in low and middle income countries

CLINTON HEALTH ACCESS INITIATIVE (CHAI)
July 2021

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Congenital talipes equinovarus (CTEV), commonly known as clubfoot is one of the most common congenital conditions, affecting 1 in 800 births. Left untreated, it can lead to life-long impairment, impacting participation in society, education, and employment. Most children with clubfoot can be successfully treated with the Ponseti method, a low-cost, cost-effective, and minimally invasive treatment protocol. Despite progress, less than 1 in 5 children born with clubfoot in low- and middle-income countries (LMICs) currently receive treatment.

Recommendations are made to increase this treatment rate.

Preventing lifelong impairment: Access to clubfoot treatment in low and middle income countries

CLINTON HEALTH ACCESS INITIATIVE (CHAI)
July 2021

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Congenital talipes equinovarus (CTEV), commonly known as clubfoot is one of the most common congenital conditions, affecting 1 in 800 births. Left untreated, it can lead to life-long impairment, impacting participation in society, education, and employment. Most children with clubfoot can be successfully treated with the Ponseti method, a low-cost, cost-effective, and minimally invasive treatment protocol. Despite progress, less than 1 in 5 children born with clubfoot in low- and middle-income countries (LMICs) currently receive treatment

Clubfoot services require coordination and leadership between different departments within health ministries. Both are often missing

 

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

A comparison of routine and case-managed pathways for recovery from musculoskeletal disorders in people in employment

BERGMAN, Beverly P
DEMOU, Evangelia
LEWSEY, James
MACDONALD, Ewan
2021

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Purpose: To compare outcomes in employed people from an enhanced routine management pathway for musculoskeletal disorders within National Health Service Scotland with an existing active case-management system, Working Health Services Scotland.


Materials and methods: The study comprised a service evaluation using anonymised routinely collected data from all currently employed callers presenting with musculoskeletal disorder to the two services. Baseline demographic and clinical data were collected. EuroQol EQ-5DTM scores at the start and end of treatment were compared for both groups, overall and by age, sex, socio-economic status, and anatomical site, and the impact of mental health status at baseline was evaluated.

 

Results: Active case-management resulted in greater improvement than enhanced routine care. Case-managed service users entered the programme earlier in the recovery pathway; there was evidence of spontaneous improvement during the longer waiting time of routine service clients but only if they had good baseline mental health. Those most disadvantaged through mental health co-morbidity showed the greatest benefit.

 

Conclusions: People with musculoskeletal disorders who have poor baseline mental health status derive greatest benefit from active case-management. Case-management therefore contributes to reducing health inequalities and can help to minimise long-term sickness absence. Shorter waiting times contrib- uted to better outcomes in the case-managed service.

Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

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Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

The Quality of Life and Associated Factors in Indonesian Meningioma Clients after Surgery: A Cross-Sectional Study

GANEFIANTY, A
IRAWATI, D
DAHLIA, D
KARIASA, I M
SUTIONO, A B
2021

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Purpose: The quality of life (QOL) of meningioma clients in Indonesia is poorly understood. This study aimed to investigate and examine the factors associated with the QOL of these meningioma clients after surgery, in order to help create an appropriate post-operative nursing intervention.

 

Method: This was a cross-sectional study. The QOL data was collected from a sample of 118 clients, using a EuroQol-5D-5L (EQ-5D-5L) questionnaire. Functional status, fatigue, illness perception and social support were assessed by the Barthel Index, FACIT-Fatigue Scale, Brief Illness Perception Questionnaire, and Medical Outcome Study Social Support Survey-6, respectively. Statistical analyses were conducted using the Chi-square test, Fisher’s exact test, and logistic regression test.

 

Results: After surgery, more than half of the 118 clients reported “ problems” in the EQ-5D dimensions of mobility (65%), self-care (57%), usual activities (70%), pain/discomfort (84%), and anxiety/depression (70%).The average postoperative EQ-5D index value (±SD) was 0.55 ± 0.26 while the median of EQ-VAS was 69.2 (IQR 40–90).Factors related to low QOL were age (p = 0.014), tumour grade (p = 0.0001), functional status (p = 0.0001), fatigue (p= 0.001), illness perception ( p = 0.0001), and social support (p = 0.001). Multivariate analysis showed that the most dominant factor associated with QOL was functional status (OR 6.728; Confidence interval=95%; p=0.008).

 

Conclusion and Implications:There is a correlation between age, tumour grade, functional status, fatigue, illness perception, and social support with the QOL of postoperative meningioma clients. The study recommends that these be included in their nursing assessment and an appropriate nursing rehabilitation programme be planned in order to improve their QOL.

Preliminary Findings From a Nationwide, Multicenter Mental Health Service for Adults and Older Adolescents With Autism Spectrum Disorder and ID

HELVERSCHOU, Sissel Berge
BAKKEN, Trine Lise
BERGE, Heidi
BJØRGEN, Tale Gjertine
BOTHEIM, Henrik
HELLERUD, Jane Askeland
HELSET, Ingunn
ODDBJØRN, Hove
JOHANSEN, Per Anders
KILDAHL, Arvid Nikolai
LUDVIGSEN, Linn Beate
NYGAARD, Sissel
RYSSTAD, Anne
WIGAARD, Elisabeth
HOWLIN, Patricia
2020

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Background: The identification and treatment of psychiatric disorders in individuals with autism spectrum disorders (ASD) and ID presents many challenges. We describe the development of a professional network, together with a standardized protocol for clinical assessment, designed to promote clinical competence and professional development in eight clinical centers responsible for providing mental health services to autistic individuals with ID across all four health regions of Norway. Specic aims to describe: (1) patterns of psychiatric and behavior problems in patients treated by the network, (2) patterns of change over time, and (3) the relationship between psychiatric disorders and behavior problems.


Method: A standardized protocol was used to assess individual progress in 132 patients (inpatients and outpatients) with autism and ID over 2 years (at referral (T1), after 1 year (T2), and after 2 years (T3)). Changes in psychiatric symptoms and behavior problems were assessed with the Psychopathology in Autism Checklist (PAC) and Aberrant Behavior Checklist (ABC).


Results: Patients showed signicant (p < .001) improvements from T1 to T2 on the psychosis, depression and anxiety subscales of the PAC, but no signicant improvement on the obsessive compulsive disorder (OCD) subscale. Improvements were maintained from T2 to T3. Patients showed signicant (p < .01) improvements on the ABC total score and on all ABC subscales except inappropriate speech from T1 to T2; these improvements were maintained from T2 to T3.


Discussion: The combination of a professional network and a standardized protocol for clinical assessment has promise as a strategy for improving professional competence and facilitating specialized mental health services for autistic individuals with ID and psychiatric disorders across an extensive geographical area.

Implementing music therapy through telehealth: considerations for military populations

VAUDREUIL, Rebecca
LANGSTON, Diane G
MAGEE, Wendy L
BETTS, Donna
KASS, Sara
LEVY, Charles
2020

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Purpose

Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.

 

Methods

Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.

 

Results

These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.

 

Conclusions

Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.

 

Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.

 

Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.

 

Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

HULST, Raquel Y
VOORMAN, Jeanine M
PILLEN, Sigrid
KETELAAR. Marjolijn
VISSER-MEILY Johanna M A
VERSCHUREN, Olaf
June 2020

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Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.

 

Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.

 

Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.

 

Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.

Family experiences up to seven years after a severe traumatic brain injury–family interviews

STENBERG, Maud
STALNACKE, Britt-Marie
SAVEMAN, Britt-Inger
June 2020

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Purpose: To explore the experiences of being a family with one member suffering from severe traumatic brain injury (STBI) up to 7 years earlier through narrative family interviews.

 

Methods: There are few studies where a family as a unit, including persons with STBI, are interviewed together. This study used a family systems research approach following a qualitative interpretative design. Therefore, 21 families with a total of 47 family members were interviewed. Qualitative content analysis was used to reveal categories with sub-categories and a theme.

 

Results: “From surviving STBI towards stability, through the unknown, into a new everyday life and a new future as a family” characterized the implicit message. The results revealed two categories both with three subcategories. The first category characterized the rapid change from a normal everyday life to one of uncertainty and finally to one of stability, and the second category described how it is to adapt as a family after STBI.

 

Conclusions: Long-term experiences of STBI show the importance for the whole family of belonging to a context, having a job, and having something to belong to as a way to achieve stability. Families` feelings of loneliness and lack of treatment and support are challenges for professionals when trying to involve families in care and rehabilitation.

Provisional guidance on the recovery and rehabilitation for patients following the pandemic

WALDMANN, Carl
MEYER, Joel
SLACK, Andy
May 2020

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There has been much work related to the evolution of recovery pathways following critical illness. COVID-19 presents a real opportunity to ensure full implementation of existing hospital and community based rehabilitation services for people recovering from critical illness, and to identify areas requiring further development in the post-COVID-19 era. The Life After Critical Illness (LACI) work stream of the Faculty (of Intensive Care Medicine, UK) was halfway to being delivered when the pandemic struck. This position statement and provisional guidance has been produced to support the pandemic and provide a national framework for future Critical Illness Recovery Services.

Delivering trauma and rehabilitation interventions to women and children in conflict settings: a systematic review

JAIN, Reena P
METEKE, Sarah
GAFFEY, Michelle F
et al
May 2020

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In recent years, more than 120 million people each year have needed urgent humanitarian assistance and protection. Armed conflict has profoundly negative consequences in communities. Destruction of civilian infrastructure impacts access to basic health services and complicates widespread emergency responses. The number of conflicts occurring is increasing, lasting longer and affecting more people today than a decade ago. The number of children living in conflict zones has been steadily increasing since the year 2000, increasing the need for health services and resources. This review systematically synthesised the indexed and grey literature reporting on the delivery of trauma and rehabilitation interventions for conflict-affected populations.

A systematic search of literature published from 1 January 1990 to 31 March 2018 was conducted across several databases. Eligible publications reported on women and children in low and middle-income countries. Included publications provided information on the delivery of interventions for trauma, sustained injuries or rehabilitation in conflict-affected populations. A total of 81 publications met the inclusion criteria, and were included in the review.

 

BMJ Global Health 2020;5:e001980

http://dx.doi.org/10.1136/bmjgh-2019-001980

Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

DAWES, Kate
CARLINO, Ashley
VAN DER BERG, Maayken
KILLINGTON, Maggie
May 2020

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Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.

 

Research design: Qualitative exploratory study using a phenomenological approach.

 

Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.

 

Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.

 

Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

How to Cope With Being Short Of Breath

April 2020

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People with lung problems often feel short of breath. Many daily tasks can make you breathless, such as walking, getting dressed or doing jobs around the house. Being breathless can make you panic or feel frightened. When you learn how to control your breathing these feelings will not trouble you as much and you will be able to do more. When you are breathless, do not panic. Your breathing will settle.
 

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