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Activity bank for disabilities

EDUCATION ABOVE ALL INNOVATION DEVELOPMENT DIRECTORATE
2020

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Since the COVID-19 crisis has been particularly challenging for children with special needs, the Education Above All Innovation Development Directorate (IDD), in collaboration with experts in the field has developed the Activity Bank for Disabilities (ABD), an activity bank for children that require additional and specialized care, in order to support their continued development and learning.

The resources in the ABD have been developed for children with multiple needs. The domains and activities are meant to be chosen, customised and adapted by parents and caregivers depending on the learner needs and abilities. It is recommended that the activities are done under the constant supervision of the caregiver or parent.

Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India

KAR, Anita
RADHAKRISHNAN, Bhagyashree
GIRASE, Trushna
UJAGARE, Dhammasagar
PATIL, Archana
2020

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Purpose:  The Rashtriya Bal Swasthya Karyakram (RBSK) is an ongoing screening and early intervention programme for children in India. Children with birth defects and developmental disabilities from rural and urban communities are referred for treatment and therapies to early intervention centres located in urban areas. This study primarily aimed at determining caregiver uptake and compliance to referral advice of the RBSK, with the larger goal of determining the utility of the community-based screening and district-based intervention service model for caregivers of children with disabilities.

 

Method: Three administrative blocks and one municipal corporation area of Pune district, in Maharashtra, were randomly selected. The sample consisted of 115 caregivers of children with disabilities. They were interviewed using a semi-structured questionnaire that investigated uptake of referral advice, treatment outcome, current health status of the child and reasons for noncompliance, three to nine months after the first referral by the RBSK team. 

 

Results: Sixty-four caregivers were aware of their child’s disability, but most children remained untreated. After screening and referral by the RBSK team, compliance was high for treatable conditions like congenital heart defects. Treatment was discontinued for 83% (24 out of 29) of children with developmental disabilities. Reasons for discontinuation included lengthy waiting time, distance to facility, difficulty in transporting the child, loss of wages, and denial of the child’s disability.

 

Conclusion and Implications: The results indicated that the RBSK programme provides treatment opportunities for children who are left undiagnosed and untreated in the community. Providing rehabilitation services at district centres is a barrier for service uptake. Alternative models such as early childhood development screening and integrating rehabilitation services at the primary healthcare level may be more feasible to provide services for children with disabilities in India.

The impact of disability on partnership formation in Sweden during 1990-2009

NAMATOVU, Fredinah
HÄGGSTRÖM LUNDEVALLER, Erling
VIKSTRÖM, Lotta
2019

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Evidence suggests that disability negatively affects people’s propen- sity to find a partner. Persons with disabilities that eventually find a partner do so later in life compared to the average population. There is a lack of studies on the differences in partnership opportu- nities for persons with disabilities compared to those without dis- abilities in Sweden. The aim of this study is to assess the impact of disability on partnership formation and to assess whether partner- ship formation varies as a function of individual demographic and socio-economic factors. We use nationwide data available in the Swedish Initiative for Research on Microdata in Social and Medical Sciences (Umeå SIMSAM Lab). We follow persons born from 1973 to 1977 when they were from 16 to 37 years of age and analyze their data using logistic regression. Our findings indicate that regardless of whether a person started to receive a disability pension at an early age or later, it was associated with lower odds for partnership forma- tion. For persons who started receiving disability pension from 16 to 20 years of age, chances for partnership formation reduced with increase in age of partnership. Individuals that started to receive disability pension later were more likely to form partnership prior to receiving disability pension. Partnership formation was less likely among persons born outside Sweden, in persons with mothers born outside Sweden, in individuals born by unmarried mothers and in persons, whose mothers had a high level of education. Partnership was high among women and among persons who had many mater- nal siblings. In conclusion, receiving disability pension was associated with reduced chances for partnership formation. Receiving disability pension might imply financial constraints that negatively influence partnership formation supporting Oppenheimer’s theory on the eco- nomic cost of marriage and the uncertainty hypothesis.

Feeling controlled or being in control? Apps for self-management among older people with neurological disability

WINBERG, C
KYLBERG, M
PETTERSSON, C
HARNETT, T
HEDVALL, P-O
MATTSSON, T
LEXELL, E Månsson
2019

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Purpose: 

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life.

 

Material and methods: 

A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns.

 

Results:

 The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”.

 

Conclusions:

 The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered.

Including parents in inclusive practice: Supporting students with disabilities in higher education

DUMA, Princess T.
SHAWA, Lester B.
October 2019

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Background: While a number of research studies have endeavoured to understand students with disabilities’ experience in higher education and have recommended ways to effectively support student success, the role of parental support has been neglected. Many studies have been hampered by a limited understanding of students with disabilities and have, in particular, underestimated students’ ‘access to economic, social and cultural forms of capital’ that caring parents provide.

 

Objectives: This article seeks to explore students with disabilities’ experiences of parental support in the South African higher education context. The research question guiding this article is: What forms of economic, social and cultural capital do parents and extended families provide to students with disabilities to enable them to succeed in higher education?

 

Method: In-depth semi-structured individual and focus group interviews were conducted with 17 students with disabilities at two universities of technology. The interview transcripts were thematically analysed with a view to understanding Pierre Bourdieu’s forms of capital that parents provided.

 

Results: The study found that while parents are not always able to provide material support, they offered rich and varied forms of social and cultural capital that enabled students with disabilities’ academic success.

 

Conclusion: Given that parental support plays an important role in the success of students with disabilities, and this role changes as these students become more independent, this study recommends the need for universities to also pay more attention to involving parents in the education of the former. It is hoped that putting in place appropriate forms of parental involvement can create a conducive environment for universities to provide inclusive education holistically.

 

 

African Journal of Disability, Vol 8, 2019

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

What interventions are effective to support home-based carers?

HUNT, Xanthe
August 2019

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Question & problem

Many people with disabilities require the assistance of other people in order to go about their daily lives. In high-income countries, home-based carers are professional or para-professional workers who provide assistance to people with disabilities, in their homes. They are often well-trained, and remunerated for their services. However, individuals with disabilities in many low- and middle-income countries (LMIC) predominantly live with their family, and receive home-based care from family members. There are some stresses associated with giving care to others, and these include burnout, compassion fatigue, and an array of emotional and social consequences related to the caring role. The carers, too, need care. This evidence brief summarises what we know about how to support home-based carers, taking into consideration that these people, in LMIC, are often untrained, unpaid family members of the person for whom they are caring.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

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These guidelines were developed to advance understanding of the needs and challenges of persons living with deafblindness and to promote their inclusion in society. The target audience are members of the CBM Federation with particular interest to, among others staff at Regional and Country Offices, Member Associations, co-workers, partners (including governments, education agencies, public and private service providers, and professionals), as well as persons living with deafblindness and their families.

 

Part One gives an overview of the impact deafblindness can have on an individual’s development and learning. It emphasises the need for a continuum of services and programmes, including early detection, referral, educational input, and family support.

 

Part Two outlines components of education and rehabilitation programmes. It provides guidelines on communication, holistic assessment procedures, assistive devices, advocacy and self-determination, transition planning, and discusses the importance of on-going regular access to health and therapeutic services.

 

Part Three considers how to improve and expand existing services through the provision of on-going personnel capacity building, and through networking with key stakeholders, to consider intersecting issues and service expansion. Each section includes an overview of the topic explored, some case studies and considerations for service implementation.

Progress on drinking water, sanitation and hygiene 2000–2017 - Special focus on inequalities

United Nations Children’s Fund (UNICEF)
World Health Organization (WHO)
June 2019

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The WHO/UNICEF Joint Monitoring Programme for Water Supply, Sanitation and Hygiene presents updated national, regional and global estimates for water, sanitation and hygiene (WASH) in households in its 2019 update report, Progress on Household Drinking Water, Sanitation and Hygiene 2000–2017: Special focus on inequalities. The report shows that in 2017:

The population using safely managed drinking water services increased from 61 per cent to 71 per cent
The population using safely managed sanitation services increased from 28 per cent to 45 per cent
60 per cent of the global population had basic handwashing facilities with soap and water at home

The report also focuses on inequalities between and within countries and reveals populations most at risk of being left-behind.

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

TEKOLA, Bethelem
et al
May 2019

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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).

 

Autism 2020, Vol. 24(1) 51–63

https://doi.org/10.1177/1362361319848532

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

 

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

 

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

 

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

Barriers in Dental Care Delivery for Children with Special Needs in Chennai, India: A Mixed Method Research

KRISHNAN, Lakshmi
IYER, Kiran
KUMAR, Parangimalai Diwakar Madan Madan
2019

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Purpose: The study aimed to assess the barriers faced by children with disability, both qualitatively and quantitatively, from the perspectives of caregivers and dental practitioners.

 

Methods: A concurrent mixed method design was used. A sample of 195 dentists and 100 caregivers was selected through convenience sampling. A prevalidated questionnaire was used to assess the barriers faced by the children with disability in their care. Focus group discussions and in-depth interviews were conducted with caregivers. Descriptive statistics were computed using SPSS version 20 and thematic analysis of qualitative data was done using NVivo software.

 

Results: 195 dentists and 100 caregivers responded to the survey. Majority of practising dentists (83.7%) reported inadequate training in handling children with special needs, while caregivers (38%) reported fear of dentist among the children as major barriers experienced in utilising dental services.

 

Conclusion and Implications: This study helps to identify the barriers faced by children with special healthcare needs. The findings highlight the need for hands-on training to be incorporated into the dental curriculum. It also suggests that improvements be made in dental clinics to accommodate these children in comfort. Due to limitations of the study, it is suggested that there is a need for further longitudinal studies that involve other family members of children with disability.

Undergraduate physiotherapy students’ basic wheelchair provision knowledge: a pilot study in two universities in Colombia

TORO-HERNÁNDEZ, María Luisa
MONDRAGÓN-BARRERA, Mónica Alejandra
TORRES-NARVÁEZ, Martha Rocío
VELASCO-FORERO, Sandra Esperanza
GOLDBERG, Mary
2019

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Purpose: 

Access to an appropriate wheelchair is a human right. Only between 5–15% of people who need a wheelchair have access to one. One of the key barriers to access is the lack of appropriately trained rehabilitation professionals. The objective of this study was to evaluate basic manual wheelchair provision knowledge in final-year physiotherapy undergraduate students in two programs in Colombia.

 

Materials and methods: 

Students took the International Society of Wheelchair Professionals Wheelchair Service Provision – Basic Test which was administered online and in Spanish. The minimum score to pass the test is 70%; it assesses seven domains: Assessment; Prescription; Products; Fitting; User training; Follow-up, maintenance, and repairs; and Process.

 

Results and conclusions

One-hundred sixteen students took the test and no one passed the test. The highest median domain scores were in Assessment and Process while the lowest were in Fitting and Products. The limitations of this study include that this sample does not represent all physiotherapy programmes or students in Colombia, there may be potential errors in the Spanish translation of the outcome measure, and students encountered Internet connectivity issues during the test that may have impacted their scores. Immediate interventions are required to improve teaching and students’ learning outcomes related to basic manual wheelchair provision in these two programs. This study may serve as a foundation for future regional or national studies that assess the situation of wheelchair provision training in rehabilitation programs that will inform improvement actions. This manuscript is also available in Spanish as Supplemental Material.

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.

Patient and caregiver experiences on care transitions for adults with a hip fracture: a scoping review

ASIF, Maliha
CADEL, Lauren
KULUSKI, Kerry
EVERALL, Amanda C
GUILCHER, Sara J T
May 2019

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Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.

 

Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.

 

Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.

 

Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.

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.

Implications of not addressing mental health and psychosocial support (MHPSS) needs in conflict situations. K4D Helpdesk Report 582

OMERT, Anna
April 2019

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This review examines the potential implications of not addressing mental health and psychosocial support (MHPSS) needs resulting from conflict throughout the life course, including on longer term mental and physical health, communities and families (including intergenerational effects), and overall human development (including education and participation in the workforce). 

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