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Family-based activity settings of children in a low-income African context

BALTON, Sadna
UYS, Kitty
ALANT, Erna
2019

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Background: There has been an overwhelming call to improve the understanding of how children develop within an African context as Euro-American definitions of competence have been uncritically adopted as the norm for children in Africa. The activities that children engage in within the family setting are seen as important to understand how children develop within context. The use of activity settings is closely aligned with a strengths-based perspective of family-centred practice and contributes to improved sustainability of intervention.

 

Objectives: This study that was conducted in Soweto, South Africa, aims to describe activity settings that typically developing young children in low-income African contexts participate in.

 

Method: A descriptive design using structured interviews was utilised to obtain information about activity settings that children aged 3–5 years and 11 months engaged in. Structured interviews with 90 caregivers were conducted.

 

Results: Findings show that children participate in a variety of activities with varied participation levels. The types of activities are dependent on the context and perceptions of caregivers.

 

Conclusion: These findings draw attention to understanding activities that children engage in within the family context.

 

African Journal of Disability, Vol 8, 2019

Views from the borderline: Extracts from my life as a coloured child of deaf adults, growing up in apartheid South Africa

HARRISON, Jane
WATERMEYER, Brian
2019

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Background: Over 90% of Deaf parents have hearing children, but there are very few, if any, studies that have explored the life worlds of hearing children of Deaf adults (CODAs) in South Africa. This article is an account of part of the life experiences of a female hearing child who was born and raised by her Deaf parents in apartheid South Africa in the 1980s.

 

Objectives: This study used auto-ethnography to explore the socialisation of a female coloured CODA during the height of South Africa’s apartheid era, in order to shed light on intersectional influences on identity and selfhood. The study was intended to contribute to the limited knowledge available on the life circumstances of CODAs in Global South contexts.

 

Methods: Evocative auto-ethnography under a qualitative research paradigm was used to explore the life world of a now adult female hearing child of Deaf parents. Her thoughts, observations, reflections and involvements are articulated in a first person written narrative that is presented in this article. A thematic analysis approach was used to analyse data, and the themes that emerged are: (1) CODAs as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. A discussion of these themes is interwoven with the literature, in an effort to provide a rich and robust analysis that contributes to the body of knowledge.

 

Results: Multiple identity markers that include disability, gender, race, age, nationality, culture and language intersect to frame the life world of a hearing child of Deaf parents who grew up in the apartheid era in South Africa. The result is both positive and negative life experiences, arising from being located simultaneously in both a hearing and Deaf world.

 

Conclusion: This study suggests that, in part, the life world of a hearing child of Deaf parents is multi-layered, multidimensional and complex; hence, it cannot be presented with a single description. Recommendations that inform policy and practice are outlined in the concluding section of the article.

 

 

African Journal of Disability, Vol 8, 2019

Lived experiences of caregivers of children with autism spectrum disorder in Kenya

CLOETE, Lizahn G
OBAIGWA, Evans O.
2019

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Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.

 

Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.

 

Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.

 

Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.

 

Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.

 

 

African Journal of Disability, Vol 8, 2019

Success in Africa: People with disabilities share their stories

SHAKESPEARE, Tom
MUGEERE, Anthony
NYARIKI, Emily
SIMBAYA, Joseph
2019

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Background: Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

 

Objectives: To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

 

Methods: Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

 

Results: Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

 

Conclusion: The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

 

 

African Journal of Disability, Vol 8, 2019

Feasibility of Family Group Conference to promote return-to-work of persons receiving work disability benefit

BRONGERS, Kor A
CORNELIUS, Bert
ROELOFS, Pepijn D D M
VAN DER KLINK, Jac J L
BROUWER, Sandra
April 2019

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Purpose: To investigate the feasibility of Family Group Conference for promoting return to work by clients receiving work disability benefits from the Social Security Institute in the Netherlands.

 

Methods: We conducted a mixed-method pre- post-intervention feasibility study, using questionnaires, semi-structured interviews and return to work plans drafted in Family Group Conferences. A convenient sample of Labour experts, Clients, and Facilitators was followed for a period of six months. Feasibility outcomes were demand, acceptability, implementation and limited efficacy of perceived mental health and level of participation.

 

Results: Fourteen labour experts and sixteen facilitators enrolled in the study. Of 28 eligible clients, nine (32%) participated in a Family Group Conference. About 78% of the Family Group Conferences were implemented as planned. Participant satisfaction about Family Group Conference was good (mean score 7). Perceived mental health and level of participation improved slightly during follow-up. Most actions in the return to work plans were work related. Most frequently chosen to take action was the participating client himself, supported by significant others in his or her social network. Six months after the Family Group Conference five participating clients returned to paid or voluntary work.

 

Conclusions: Family Group Conference seems a feasible intervention to promote return to work by clients on work disability benefit. Involvement of the social network may have added value to support the clients in this process. An effectiveness study to further develop and test Family Group Conferences is recommended.

Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

WONG CHONG, Ruud
WILLEMEN, Agnes M
VOORMAN, Jeanine
KETELAAR. Marjolijn
BECHER, Jules
VERHEIJDEN, Johannes
SCHUENGEL, Carlo
April 2019

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Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.

 

Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.

 

Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.

 

Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it “by themselves”.

Parental satisfaction with inclusion in physical education

WILHELMSEN, Terese
SØRENSEN, M. S
SEIPPEL, Ø
BLOCK, M. E
2019

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Knowledge is scarce on parental satisfaction with the inclusion of children with disabilities in physical education (PE). This study explored how parents’ satisfaction with inclusion in PE was associated with parental and child interpersonal and intrapersonal characteristics. Seventy-two parents of children with disabilities participated in the survey-based study. The results of the ordinary least square regression (OLS) and quantile regression (QR) indicated that the parents’ satisfaction with social inclusion in PE was associated with their attitudes towards inclusion in PE, perceived PE-related information sharing, and the type of disability and degree of physical inclusion. Parents’ satisfaction with pedagogical inclusion of children in PE was associated with their attitudes towards inclusion in PE, PE-related information sharing, and the children’s degrees of disability and physical inclusion. Furthermore, the QR estimates indicated that the explanatory strength of parental attitudes towards inclusion in PE varied with the degree of parental satisfaction with social and pedagogical inclusion of their children in PE. Practical and methodological implications of the findings are discussed.

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

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Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

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SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

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)

Uzbekistan: Case for inclusion

NAM, Galina
2019

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The inclusion of children with disabilities in mainstream education has become an important agenda for many developing countries. The Uzbekistan government has also attempted to provide equal educational opportunities to this previously excluded group of children. Despite these efforts, however, many children with disabilities remain segregated. The total number of children with disabilities under 16 years old in the country is 97,000 (Uzbek Society of Disabled People, 2014). The majority of them either study at specialised educational institutions, or receive home-based education. Those who are placed at specialised institutions are often deprived of resources and services necessary to receive adequate education (UNICEF, 2013). While limited by the lack of reliable empirical data and research, this article aims to present the current situation in the development of inclusive education in Uzbekistan. It outlines the major legislative documents intended to support inclusive education and identifies some of the current obstacles to inclusive education practices.

 

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

Perceptions of primary caregivers about causes and risk factors of cerebral palsy in Ashanti Region, Ghana

KYEI, Ernest Appiah
DOGBE, Joslin
2019

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Purpose: Cerebral palsy (CP) is the most common chronic childhood disability, but in most cases the primary causes are largely unknown. The study sought to determine the perceptions about the causes and risk factors of CP among primary caregivers of children with CP in the Ashanti region of Ghana.

 

Method: A descriptive study design with a quantitative approach was used. A simple random sampling technique was adopted to select 100 participants from among the primary caregivers whose children with CP were attending the physiotherapy unit of the Komfo Anokye Teaching Hospital in Ashanti region.  A structured questionnaire was administered to the respondents and data were analysed using SPSS version 21.0.

 

Results: CP was perceived as a disease caused by witchcraft (40%), punishment from God or Gods (12%), or by being cursed (10%). More than half (54%) of the respondents did not know of any risk factor for CP.

 

Conclusion and Implications: The perceived negative causes, as well as ignorance about the risk factors for CP, could result in primary caregivers stopping their children with CP from availing of the physiotherapy services. Public education and campaigns should focus on the causes and risk factors for CP, in order to change negative perceptions and improve awareness among the general public.

Enabling Education Review Issue 8 - 2019: Family involvement in inclusive education

CORCORAN, Su
LEWIS, Ingrid
Eds
2019

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Articles in this issue include:

Working together to advocate for our children in Trinidad and Tobago

The inclusion of deaf children in Malaysia: parental support and advocacy

Family-mediated intervention to support inclusion in Bulgaria

Creating inclusivity and diversity through a parent support group in Kolkata, India 

The positive impact of family involvement in inclusive education, Tetouan, Morocco

Adapting an education program for parents of children with autism from the United States to Colombia

MAGANA, Sandy
TEHERO HUGHES, Marie
SALKAS, Kristen
MORENO ANGARITA, Marisol
2019

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One of the lingering aspects of coloniality in the Americas is paternalism. In Latin America, this power structure plays out among people with autism spectrum disorder (ASD) through beliefs that people with disabilities need to be protected and guarded at home, and that they are unable to learn and function in society. We developed a program to empower parents of children with ASD through peer education to help their children realize their potential. This program was implemented in the United States (US) for Latino immigrant families and then adapted for use in Bogotá, Colombia. In this paper, we discuss some of the ways the manifestations of colonialism have influenced the adaptation of this program from North to South. For example, in Colombian society it is not common to use non-professionals or peers to deliver scientific information because within a paternalistic society there is ‘respeto’ (respect) for persons who are older, male and have credentials. Therefore, promoting the use of peer-mothers in this context was a challenge in the adaptation that warranted compromise. We explore and discuss similarities and differences in the adaptation and delivery between North and South and problematize the idea of Latinos in the US versus Colombia.

 

Disability and the Global South, 2019 Vol.6, No. 1

Societal attitude and behaviours towards women with disabilities in rural Nepal: pregnancy, childbirth and motherhood

DEVKOTA, Hridaya R.
KETT, Maria
GROCE, Nora
January 2019

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This study reviews the attitudes and behaviours in rural Nepalese society towards women with disabilities, their pregnancy, childbirth and motherhood. Society often perceives people with disabilities as different from the norm, and women with disabilities are frequently considered to be doubly discriminated against. Studies show that negative perceptions held in many societies undervalue women with disabilities and that there is discomfort with questions of their control over pregnancy, childbirth and motherhood, thus limiting their sexual and reproductive rights. Public attitudes towards women with disabilities have a significant impact on their life experiences, opportunities and help-seeking behaviours. Numerous studies in the global literature concentrate on attitudes towards persons with disabilities, however there have been few studies in Nepal and fewer still specifically on women.

A qualitative approach, with six focus group discussions among Dalit and non-Dalit women without disabilities and female community health volunteers on their views and understandings about sexual and reproductive health among women with disabilities, and 17 face-to-face semi-structured interviews with women with physical and sensory disabilities who have had the experience of pregnancy and childbirth was conducted in Rupandehi district in 2015. Interviews were audio-recorded, transcribed, and translated into English before being analysed thematically.

 

BMC Pregnancy Childbirth 19, 20 (2019)

https://doi.org/10.1186/s12884-019-2171-4

Deinstitutionalization for children with disabilities - Technical guidance for UNICEF's engagement in national reform

JONES, Helen
2019

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This technical guidance was commissioned by the UNICEF Eastern Europe and Central Asia Regional Office to enable UNICEF Country Offices to advocate and support particular programmes and projects related to the deinstitutionalization of children with disabilities through:

  • Promoting better decision-making among policy makers and child welfare professionals in the region regarding deinstitutionalization of children with disabilities;
  • Supporting governments to understand the need for such work and to plan, monitor, evaluate and sustain the reforms, as well as linking these reforms to broader disability- inclusive changes across sectors and making a contribution to social justice;
  • Increasing political will, passion and vision for the development of a child care system to address the range of needs of children, stimulating preventive work to reduce overall numbers placed away from home, and promoting family-based alternatives for the majority of children in the care system

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

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