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Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based...
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Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Global Pediatric Health".

Deadline for manuscript submissions: closed (5 April 2024) | Viewed by 24211

Special Issue Editor

Prof. Dr. Roy McConkey

E-Mail Website1 Website2
Guest Editor
Institute of Nursing and Health Research, University of Ulster, Newtownabbey BT37 0QB, UK
Interests: intellectual and developmental disabilities; family; community based supports; innovative services; social inclusion; public attitudes
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

Internationally, family-centred services are seen as essential in promoting the development of children with developmental disabilities and caring for those with chronic and life-limiting conditions. Building the resilience and wellbeing of families to meet the ongoing needs of their child has to be a major priority. However, current service provision in most affluent countries remains predominately child-focused and clinic-centred. Often, it is more affluent and better educated parents living in urban settings who benefit. In less affluent countries, many families receive little or no support, and struggle with other challenges such as poverty, inadequate housing and social isolation. 

The Special Issue aims to bring together international expertise and experience on the design and delivery of family-centred interventions. Articles that focus on ‘hard-to-reach’ families due to rurality, ethnicity, poverty and culture are especially welcome.   Our objective is to document strategies that have been shown to be effective and efficient so that they can be replicated within and across nations. Although evidence of impact on families as well as children is necessary, details of the formative evaluations that were undertaken are essential. 

We hope that practitioners in health, social services and education from various professions will find the time to document their successes and lessons learnt.  Articles with multi-disciplinary authorships are especially sought.

In recent years, a number of review articles have been published on family-centred care which highlight the issues that we hope the Special Issue will be able to address. 

Carrington L, Hale L, Freeman C, Qureshi A, Perry M. Family-Centred Care for Children with Biopsychosocial Support Needs: A Scoping Review. Disabilities. 2021 Sep 27;1(4):301-30. https://doi.org/10.3390/disabilities1040022

Kokorelias KM, Gignac MA, Naglie G, Cameron JI. Towards a universal model of family centered care: a scoping review. BMC health services research. 2019 Dec;19(1):1-1. https://doi.org/10.1186/s12913-019-4394-5

McCarthy E, Guerin S. Family‐centred care in early intervention: A systematic review of the processes and outcomes of family‐centred care and impacting factors. Child: Care, Health and Development. 2022 Jan;48(1):1-32.  https://doi.org/10.1111/cch.12901

Ridgway L, Hackworth N, Nicholson JM, McKenna L. Working with families: A systematic scoping review of family-centred care in universal, community-based maternal, child, and family health services. Journal of Child Health Care. 2021 Jun;25(2):268-89. https://doi.org/10.1177/1367493520930172

Please feel free to contact if you have any further queries or comments.

Prof. Dr. Roy McConkey
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • family-centred
  • intervention
  • parents
  • families
  • practice
  • practioners
  • development
  • disability
  • chronic illness
  • resilience

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Published Papers (7 papers)

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Research

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11 pages, 223 KiB  
Article
Examining the Prevalence of Congenital Anomalies in Newborns: A Cross-Sectional Study at a Tertiary Care Maternity Hospital in Saudi Arabia
by Bayapa Reddy Narapureddy, Yousef Zahrani, Hind Eissa Musa Alqahtani, Bharat Kumar Mamilla Mugaiahgari, Lingala Kalyan Viswanath Reddy, Shaik Mohammed Asif, Mohammad Ali Abdullah Almoyad, Ali Mohieldin and Adam Dawria
Children 2024, 11(2), 188; https://doi.org/10.3390/children11020188 - 2 Feb 2024
Cited by 2 | Viewed by 2559
Abstract
Background: Congenital anomalies, representing structural or functional abnormalities present at birth, pose a substantial global health challenge, affecting 8 million newborns annually. With 3.3 million succumbing before age five and 3.2 million facing physical or mental disability, their diverse causes necessitate comprehensive understanding [...] Read more.
Background: Congenital anomalies, representing structural or functional abnormalities present at birth, pose a substantial global health challenge, affecting 8 million newborns annually. With 3.3 million succumbing before age five and 3.2 million facing physical or mental disability, their diverse causes necessitate comprehensive understanding for effective healthcare planning. This study explores the prevalence of congenital anomalies among newborns in the Abha Maternity and Children Hospital (MCH) in Abha, Kingdom of Saudi Arabia. Methodology: A descriptive cross-sectional record-based study was conducted on newborns born between 2018 and 2022. Data were gathered in 4 months from September to December 2023. Purposive sampling was employed to select the case records of newborns with congenital anomalies after careful screening and considering inclusion and exclusion criteria. Data was acquired through a self-designed study tool, and the data were entered into Google Forms. Results: Congenital anomalies’ five-year prevalence was 3.21%, and one year, in 2022, the prevalence was 4.02%. Female neonates exhibited higher anomalies (59.3%), and preterm births accounted for 39.6%, emphasizing their vulnerability. The findings indicate that consanguineous marriages are linked to 63.3% of anomalies, notably neural tube defects (25%) and congenital heart diseases (19.7%). Anomalies are not significantly associated with consanguinity or birth order, but maternal age, education, employment, and antenatal maternal medical issues are associated considerably. Conclusions: These study insights contribute to health planners planning targeted interventions and awareness programs that are crucial to mitigate risks associated with preterm births and consanguineous marriages. The promotion of 100% antenatal screening and prophylactic medication for high-risk women and couples is necessary to prevent inherited deformities. In future the Ministry of Health must plan large-group prospective research to better understand the associated risk factors that will help public health initiatives minimize congenital-associated neonatal mortality and improve pregnancy outcomes. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
15 pages, 590 KiB  
Article
Experiences and Challenges of Health Professionals in Implementing Family-Centred Planning: A Qualitative Study
by Lorena Cuenca-Sánchez, David Sánchez-Teruel and Maria Auxiliadora Robles-Bello
Children 2024, 11(1), 132; https://doi.org/10.3390/children11010132 - 22 Jan 2024
Cited by 2 | Viewed by 1794
Abstract
Early childhood intervention is crucial for the development of minors with disabilities or at risk. Family-centred planning (FCP), which involves families in care, stands out in this context. Despite its importance, little is known about professionals’ experiences of its implementation. FCP aims to [...] Read more.
Early childhood intervention is crucial for the development of minors with disabilities or at risk. Family-centred planning (FCP), which involves families in care, stands out in this context. Despite its importance, little is known about professionals’ experiences of its implementation. FCP aims to tailor services to the needs of the family and the child within the Spanish health system. This study highlights the importance of assessing professionals’ perceptions of FCP. Professionals rooted in traditional approaches may resist change. To assess the implementation of FCPs, the study explores the perspectives of 25 healthcare professionals using qualitative methods to assess their experiences. The qualitative descriptive phenomenological design, following Giorgi’s modified Husserlian approach, seeks to understand the essence of the phenomenon from the participants’ perspective. Two main themes emerged: (1) a social and work organization that perpetuates rehabilitation or early stimulation practices and (2) a socio-family and work organization that promotes FCP adherence, along with subthemes and units of meaning. The evaluation reveals common challenges, such as the need for solid training and institutional support. Evaluating the experience of professionals is essential to overcome barriers and ensure the successful implementation of FCPs. Administrators have an important role to play in providing social, health, and educational alternatives. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
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18 pages, 301 KiB  
Article
Caregivers’ Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo
by Patricia V. M. Lelo, Faustin Nd. Kitetele, Cathy E. Akele, David Lackland Sam, Michael J. Boivin and Esperance Kashala-Abotnes
Children 2023, 10(2), 261; https://doi.org/10.3390/children10020261 - 31 Jan 2023
Cited by 2 | Viewed by 2000
Abstract
There is limited information on knowledge, perceptions, and management of sickle cell disease (SCD) in Africa in general and in the Democratic Republic of the Congo (DRC) in particular. This study explored knowledge, perceptions, and burden of 26 parents/caregivers of children with SCD [...] Read more.
There is limited information on knowledge, perceptions, and management of sickle cell disease (SCD) in Africa in general and in the Democratic Republic of the Congo (DRC) in particular. This study explored knowledge, perceptions, and burden of 26 parents/caregivers of children with SCD in three selected hospitals in Kinshasa, DRC. We conducted a focus group with in-depth interviews with parents/caregivers of children affected with SCD. Four themes were discussed, including knowledge and perceptions, diagnosis and management, society’s perceptions, and the psychosocial burden and the quality of life of the family affected by SCD. The majority of participants/caregivers felt that society, in general, had negative perceptions of, attitudes toward, and knowledge about SCD. They reported that children with sickle cell are often marginalized, ignored, and excluded from society or school. They face a number of challenges related to care, management, financial difficulties, and a lack of psychological support. The results suggest the need to promote measures and strategies to improve knowledge and management of SCD in Kinshasa, DRC. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
11 pages, 769 KiB  
Article
The Impact of a Family-Centred Intervention for Parents of Children with Developmental Disabilities: A Model Project in Rural Ireland
by Roy McConkey, Pauline O’Hagan and Joanne Corcoran
Children 2023, 10(2), 175; https://doi.org/10.3390/children10020175 - 17 Jan 2023
Cited by 4 | Viewed by 3287
Abstract
The greater risk of poor mental health and social isolation, experienced by parents of children with developmental disabilities, is compounded by family circumstances and living in rural settings. Often parents receive little personal support. Family-centred interventions have been recommended internationally for promoting children’s [...] Read more.
The greater risk of poor mental health and social isolation, experienced by parents of children with developmental disabilities, is compounded by family circumstances and living in rural settings. Often parents receive little personal support. Family-centred interventions have been recommended internationally for promoting children’s development, as well as boosting parental wellbeing. Yet, in many countries, current service provision is predominately child-focused and clinic-centred. An innovative, family-centred support service was designed and evaluated in a rural county of Ireland. Support staff visit the family home every month for around one year with regular check-ins by phone. The service aims included setting developmental goals for the child that were agreed with parents, alongside actions to address the personal needs of parents and siblings. In addition, community activities are identified or created to promote the social inclusion of the child and family in local communities, as well as locating opportunities for social activities for mothers. To date, 96 families with 110 children have been involved and three monthly reviews have been undertaken of each child’s progress. Baseline measures on parents’ mental health and social isolation were gathered and repeated when parents had completed their involvement with the project, along with qualitative information regarding the parents’ experiences. Most children attained their learning targets, alongside those selected as personal goals by parents; in particular, parents reported their child’s greater involvement in community activities, increased knowledge and skills, and with more confidence and resilience. Significant increases in parental well-being scores were reported, but there was a limited impact on their social participation and that of their child. This evidence-based model of provision is an example of how current social care provision for families who have a child with developmental disabilities could be cost-effectively re-envisioned even in rural areas. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
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Review

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17 pages, 637 KiB  
Review
Fathers’ Experiences of Caring for a Child with a Chronic Illness: A Systematic Review
by Shelley Spurr, Cynthia A. Danford, Karyn J. Roberts, Debbie Sheppard-LeMoine, Fernanda Machado Silva-Rodrigues, Michelle Darezzo Rodrigues Nunes, Leslie Darmofal, Anne L. Ersig, Mandie Foster, Barbara Giambra, Stacee Lerret, Michele Polfuss, Lindsay Smith and Suja Somanadhan
Children 2023, 10(2), 197; https://doi.org/10.3390/children10020197 - 20 Jan 2023
Cited by 16 | Viewed by 5788
Abstract
The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers’ experiences and involvement in caring for a child [...] Read more.
The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers’ experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers’ experience, perceptions, and/or involvement in the child’s care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father’s Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers’ experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
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Other

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12 pages, 237 KiB  
Commentary
Early Childhood Development Is Not Enough: In Defense of Children with Developmental Delays and Disabilities and Their Right to Family-Centered Early Childhood Intervention (In the Global South)
by Claudine Störbeck
Children 2024, 11(5), 606; https://doi.org/10.3390/children11050606 - 18 May 2024
Viewed by 1738
Abstract
The international recognition of the critical importance of the early childhood phase has been firmly established through decades of rigorous research, evidence-based practices, and undeniable evidence of the returns on investment made during this formative period. Consequently, early childhood development has emerged as [...] Read more.
The international recognition of the critical importance of the early childhood phase has been firmly established through decades of rigorous research, evidence-based practices, and undeniable evidence of the returns on investment made during this formative period. Consequently, early childhood development has emerged as a top priority on both national and international agendas. This momentum reached a pinnacle in 2015 with the unanimous adoption of the 17 Sustainable Development Goals (SDGs) by the United Nations, which placed a particular emphasis on children under the age of five within the education-focused SDG 4, notably target 4.2, centered on ensuring that all girls and boys are ready for primary education through the provision of accessible “quality early childhood development, care and pre-primary education”. However, the Global South reflects the glaring omission of addressing the needs of children at risk of poor development due to disabilities. This paper underscores the imperative for specialized early childhood intervention tailored to young children with disabilities and their families, commencing as early as possible following birth. It advocates for Early Childhood Intervention (ECI) as a service distinct from general Early Childhood Development (ECD), emphasizing the crucial role of families as active partners from the outset. Furthermore, the paper strengthens the case for Family-Centered Early Childhood Intervention (Fc-ECI) through the integration of evidence-based practices and an in-depth description of one such program in South Africa with specific reference to deaf and hard-of-hearing infants and their families. This model will be guided by core concepts outlined in WHO and UNICEF Early Childhood Intervention frameworks. Through this exploration, the paper aims to shed light on the urgent need for inclusive approaches to early childhood development, particularly for children with disabilities, and to advocate for the adoption of Family-Centered Early Childhood Intervention as a cornerstone of global efforts to ensure the holistic well-being and development of all children. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
11 pages, 502 KiB  
Perspective
Disabilities in Early Childhood: A Global Health Perspective
by Bolajoko O. Olusanya, Claudine Storbeck, Vivian G. Cheung and Mijna Hadders-Algra
Children 2023, 10(1), 155; https://doi.org/10.3390/children10010155 - 12 Jan 2023
Cited by 4 | Viewed by 5525
Abstract
Prior to the launch of the United Nations’ Sustainable Development Goals (SDGs) in 2015, childhood disability was rarely considered an important subject in global health. The SDGs till 2030 now require that children under 5 years who are at risk of not benefitting [...] Read more.
Prior to the launch of the United Nations’ Sustainable Development Goals (SDGs) in 2015, childhood disability was rarely considered an important subject in global health. The SDGs till 2030 now require that children under 5 years who are at risk of not benefitting from inclusive quality education are identified, monitored, and promptly supported. A new tool for identifying children who are not developmentally on track has been developed by UNICEF but has limited sensitivity for detecting children with disabilities due to reliance on parental assessment of child behavior in certain everyday situations. In this paper, we identified conditions that are commonly associated with developmental disabilities based on the International Classification of Diseases (ICD) codes and clarified the concept of “developmentally on track” as it relates to children with developmental disabilities and developmental delays. We summarized the latest evidence on the global burden of developmental disabilities in children under 5 years based on the diagnostic and functional approaches for measuring disabilities at the population level. We highlighted the global health context for addressing the needs of children with developmental disabilities and provided an overview of the opportunities and the role of pediatric caregivers in supporting children with developmental disabilities. Full article
(This article belongs to the Special Issue Family-Centred Interventions for Children with Disabilities and Chronic Illnesses: Practice-Based Evidence)
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