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Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

VAN GORP, Marloes
DALLMEIJER, Annet J
VAN WELY, Leontien
DE GROOT, Vincent
TERWEE, Caroline B
FLENS, Gerard
STAM, Henk J
VAN DER SLOT, Wilma
ROEBROECK, Marij E
December 2019

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Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references.

 

Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health.

 

Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy.

 

Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.

Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

TEDROFF, Kristina
GYLLENSVARD, Mirja
LOWING, Kristina
September 2019

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Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

 

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

 

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

 

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

Guidelines. Inclusion of persons with disabilities in humanitarian action

IASC TASK TEAM ON INCLUSION OF PERSONS WITH DISABILITIES IN HUMANITARIAN ACTION
July 2019

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The guidelines set out essential actions that humanitarian actors must take in order to effectively identify and respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings. The recommended actions in each chapter place persons with disabilities at the centre of humanitarian action, both as actors and as members of affected populations. They are specific to persons with disabilities and to the context of humanitarian action and build on existing and more general standards and guidelines. These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organizations in association with traditional humanitarian stakeholders. Based on the outcomes of a comprehensive global and regional multi-stakeholder consultation process, they are designed to promote the implementation of quality humanitarian programmes in all contexts and across all regions, and to establish and increase both the inclusion of persons with disabilities and their meaningful participation in all decisions that concern them. 

 

Chapters include:

  • What to do - key approaches to programming
  • Data and information management
  • Partnerships and empowerment of organisation of people with disabilities
  • Cross cutting considerations
  • Accountability to affected people and protection from sexual exploitation and abuse
  • Humanitarian response options
  • Stakeholder roles and responsibilities
  • What sectors need to do
  • Camp coordination and camp management
  • Education
  • Food security and nutrition
  • Livelihoods
  • Health
  • Protection
  • Shelter and settlements
  • Water, sanitation and hygiene

LEARN2MOVE 0–2 years, a randomized early intervention trial for infants at very high risk of cerebral palsy: family outcome and infant’s functional outcome

HIELKEMA, Tjitske
BOXUM, Anke G
HAMER, Elisa G
LA BASTIDE-VAN GEMERT, Sacha
DIRKS, Tineke
REINDERS-MESSELINK, Heleen A
MAATHUIS, Carel G B
VERHEIJDEN, Johannes
GEERTZEN, Jan H B
HADDERS-ALGRA, Mijna
May 2019

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Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme “Coping with and Caring for infants with special needs (COPCA)” or typical infant physiotherapy.

 

Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models.

 

Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family’s quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including “caregiver coaching.”

 

Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services.

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia

KERSTENS, Hans C J W
SATINK, Ton
NIJKRAKE, Maarten J
DE SWART, Bert J M
VAN LITH, Bas J H
GUERTS, Alexander C H
NIJHUIN-VAN DER SANDEN, Maria W G
April 2019

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Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

 

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

 

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

 

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.

Rapid needs assessment of older people Cyclone Idai, Malawi

HELPAGE INTERNATIONAL
MALAWI NETWORK OF OLDER PEOPLES ORGANISATIONS (MANEPO)
March 2019

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In early March 2019, heavy rains and floods affected the majority of the districts in southern Malawi. At least 115,000 were affected, with scores of fatalities, injured and missing persons. The situation intensified when Cyclone Idai reached Malawi, increasing the devastation caused by heavy rain weeks earlier. When Cyclone Idai caused the Shire river to reach capacity and flood, the districts of Chikwawa and Nsanje were among the worst affected. The aim of this rapid needs assessment was to inform the design of  HelpAge International’s own humanitarian response to the devastating impact of Cyclone Idai on older people in Malawi. The Malawi Network of Older Persons’ Organisations (MANEPO) and HelpAge International jointly conducted the assessment in Chikwawa and Nsanje districts in March 2019. The report also aims to support organisations operating in the affected areas to develop inclusive programmes and support advocacy for the rights of older people to be upheld in the response. The report contains key findings of the assessment, together with observations and analysis. 

Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records

BACKMAN, Ellen
GRANLUND, Mats
KARLSSON, Ann-Kristin
February 2019

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Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.

 

Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.

 

Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”.

 

Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.

HelpAge training portal

HELPAGE INTERNATIONAL
2019

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This digital learning platform was established for the purpose of remote humanitarian response for hard to reach areas. HelpAge International is utilizing expertise to train international and national organizations, government agencies, and the private sector on Age Inclusive Interventions.

These series of trainings on 'Helping Older People in Emergencies (HOPE)' is designed to strengthen the capacity of humanitarian actors to ensure that their humanitarian action is evidence-based and responds to the distinct needs and priorities of crisis-affected to older men, women, and other vulnerable groups.

 

Modules available are:

1. Age & its interaction with vulnerabilities in humanitarian crises

2. Inclusion of older people in emergency needs assessments & SADDD

3. Health, home-based & community-based care in humanitarian crises

4. Protection of older people in humanitarian crises

5. Food security & livelihoods interventions for older people in humanitarian crises

Minimum standards for protection, gender and inclusion in emergencies

INTERNATIONAL FEDERATION OF RED CROSS AND RED CRESCENT SOCIETIES (IFRC)
November 2018

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The International Federation of Red Cross and Red Crescent Societies (IFRC) Minimum standards for protection, gender and inclusion in emergencies (2018) is in its second edition. The first pilot version of the IFRC Minimum standard commitments to gender and diversity in emergency programming was published in 2015. The pilot version has been tested globally by Red Cross and Red Crescent staff, volunteers and management in low-, medium- and high-scale disasters and humanitarian crises. This edition is the result of three years of testing, revision and feedback from protection, gender and inclusion (PGI) and sectoral specialists. New chapters, such as cash-based interventions, have been added as well as a stronger focus on sexual and gender-based violence and disability inclusion to align with the commitments of the IFRC and its member National Societies. This edition is accompanied by the IFRC Protection, gender and inclusion in emergencies toolkit (2018–2019).

This guidance presents Red Cross and Red Crescent staff, members and volunteers with a set of minimum standards for protection, gender and inclusion (PGI) in emergencies. It aims to ensure that the emergency programming of the International Federation of Red Cross and Red Crescent Societies (IFRC) and National Societies provides dignity, access, participation and safety for all people affected by disasters and crises.

It provides practical guidance on how to mainstream these four principles in all sectors, based on a consideration of gender, age, disability and other diversity factors. This includes limiting people’s exposure to the risks of violence and abuse and ensuring that emergency programmes “do no harm”.

The standards address protection, gender and inclusion concerns by providing practical ways to engage with all members of the community, respond to their differing needs and draw on their capacities in the most non-discriminatory and effective way. This helps to ensure that local perspectives guide assistance delivery. The standards also support incorporation of the seven Fundamental Principles of the International Red Cross and Red Crescent Movement.

Disability in humanitarian context: A case study from Iraq

HUMANITY & INCLUSION (HI)
June 2018

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This brief presents and addresses some of the challenges that prevent internally displaced persons with disabilities and other vulnerable population groups (elderly, injured persons, pregnant women, etc.) in camp settings from accessing humanitarian services in Iraq and impede on the development of an inclusive humanitarian response. Examples drawn from Handicap International’s experience working in Iraq with persons with disabilities and vulnerable population groups further illustrate those challenges. The recommendations to the humanitarian community provided in this brief aim at improving the protection of persons with disabilities and their inclusion in the humanitarian response

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Humanitarian inclusion standards for older people and people with disabilities

ADCAP
TILL, Celia
et al
February 2018

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The Humanitarian inclusion standards for older people and people with disabilities provide guidance across all areas and at all stages of emergency response to ensure older people and people with disabilities are not left out.

The standards consist of nine key inclusion standards, including identification, safe and equitable access, knowledge and participation, and learning. Alongside these, there are seven sector-specific inclusion standards, which include protection, shelter, health, and water, sanitation and hygiene.

Each standard comes with key actions, guidance, tools and resources, and case studies illustrating how older people and people with disabilities have been included in humanitarian responses.

The sector-specific standards provide guidance in three key areas: data and information management, addressing barriers to inclusion, and participation of older people and people with disabilities.

By implementing the key action points provided, organisations will build up a greater evidence base, deliver more inclusive programmes, and be able to better demonstrate impact on the lives of those most at risk during humanitarian crises.

The standards can be used as guidance during programme development, implementation and monitoring, and as a resource for training and advocacy.

Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter

SOLDATIC, Karen
MELBOE, Line
KERMIT, Patrick
SOMERS, Kelly
2018

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Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.

 

Disability and the Global South, 2018, Vol.5, No. 2

Access to health care in an age of austerity: disabled people’s unmet needs in Greece

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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Since late 2009, Greece has been dealing with the effects of a debt crisis. The neoliberal principles embedded in the three structural adjustment programmes that the country accepted have required radical cuts in health care funding, which in turn have led to widening inequalities in health. This article focuses on access to health care for people with disabilities in Greece in the context of these structural adjustments. We investigate possible differences in unmet health care needs between people with and without disabilities, using de-identified cross-sectional data from the European Health Interview Survey. The sample included 5400 community- dwelling men and women aged 15 years and over. The results of the logistic regressions showed that people with disabilities report higher unmet health care needs, with cost, transportation, and long waiting lists being significant barriers; experience of all barriers was positively associated with low socio- economic status. These findings suggest that a section of the population who may have higher health care needs face greater barriers in accessing services. Austerity policies impact on access to health care in both direct and indirect ways, producing long-term disadvantage for disabled people. Social policies and comprehensive anti-discrimination legislation might help to address some of the barriers this population faces.

Central African Republic: People with disabilities at high risk - 4 years into conflict, more support, protection needed

HUMAN RIGHTS WATCH
June 2017

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People with disabilities in the Central African Republic have faced violent attacks, forced displacement, and ongoing neglect in the humanitarian response, Human Rights Watch said today. A peace accord signed on June 19, 2017, offers a chance to help this abused and marginalized group.

People with disabilities face high risk from violent attacks and forced displacement and are being neglected by aid groups as conflict in the Central African Republic intensifies.

New Human Rights Watch research in the country shows that people with a range of disabilities are often unable to flee violence, are especially vulnerable to attack while trying to flee, and face unsafe and unhealthy conditions in displacement camps.

This video and blog page report on the problems faced by people with disabilities as conflict in the Central African Republic intensifies. People with a range of disabilities are often unable to flee violence, are especially vulnerable to attack while trying to flee, and face unsafe and unhealthy conditions in displacement camps.

Forecasting Zika Incidence in the 2016 Latin America Outbreak Combining Traditional Disease Surveillance with Search, Social Media, and News Report Data

MCGOUGH Sarah F.
BROWNSTEIN John S.
HAWKINS, Jared B.
SANTILLANA Mauricio
et al
January 2017

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"In the absence of access to real-time government-reported Zika case counts, we demonstrate the ability of Internet-based data sources to track the outbreak. Our model predictions fill a critical time-gap in existing Zika surveillance, given that early interventions and real-time surveillance are necessary to curb mosquito transmission. Official Zika case reports will likely continue to be delayed in their release; thus, it is important that health and government officials have access to real-time and future estimates of Zika activity in order to allocate resources according to potential changes in outbreak dynamics. The methodologies presented here may be expanded to any country–and perhaps finer spatial resolutions–to identify changes in Zika transmission for public health decision-makers."

Greece: Refugees with Disabilities Overlooked, Underserved

HUMAN RIGHTS WATCH
January 2017

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Refugees, asylum seekers, and other migrants with disabilities are not properly identified and do not enjoy equal access to services in reception centres in Greece.  On the basis of research carried out in mainland Greece and on the Greek islands in October 2016 and January 2017, and follow-up phone interviews in December 2016 and January 2017, Human Rights Watch found that asylum seekers and refugees with disabilities are not properly identified in Greece, in part because of a rushed registration process and the need for better guidance for staff. Without an adequate understanding of the scale and needs, aid agencies cannot respond effectively. Problems with equal access to water and sanitation services, food distribution, shelter, and health care including mental health and psychosocial support are reported.

Forecasting Zika Incidence in the 2016 Latin America Outbreak Combining Traditional Disease Surveillance with Search, Social Media, and News Report Data

MCGOUGH, Sarah F.
BROWNSTEIN, John S.
HAWKINS, Jared B.
et al
January 2017

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"Over 400,000 people across the Americas are thought to have been infected with Zika virus as a consequence of the 2015–2016 Latin American outbreak. Official government-led case count data in Latin America are typically delayed by several weeks, making it difficult to track the disease in a timely manner. Thus, timely disease tracking systems are needed to design and assess interventions to mitigate disease transmission."

High-Level Political Forum 2017

INTERNATIONAL DISABILITY ALLIANCE (IDA)
2017

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The theme for HLPF 2017 (High-Level Political Forum on sustainable development), 10-19 July 2017, is "Eradicating poverty and promoting prosperity in a changing world". The set of goals to be reviewed in depth will be goals 1, 2, 3, 5, 9, 14 and 17.

Key documents for HLPF 2017

Policy Briefs: HLPF 2017  
Global Report on the participation of organisations of persons with disabilities (DPOs) in VNR Processes 
Accessible Information Communication Technology and Assistive Technologies and Persons with Disabilities 
HLPF 2017: Submission Paper by the Stakeholder Group of Persons with Disabilitie

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