Throughout the world, the number of children with disabilities is constantly increasing, bringing with it even more challenges to address in an attempt to enhance their health and general well-being. Children with disabilities and their families often face various unique challenges that can significantly affect their overall well-being. Throughout the semester, I have been focused on exploring the well-being of children with disabilities and the well-being of their parents as well. The focus here was to explore the ways in which disabilities can affect children and their families and the approaches that can be taken to enhance their well-being. This paper will provide a critique of the project in regard to the facilitators and the barriers in an attempt to address the identified challenges, as well as an examination of the role of the Advanced Practice Nurses (APNs) in enhancing the wellbeing of children with disabilities and that of their parents.
Background and Significance
The increasing number of children with disabilities in the world is a major health concern in regard to the challenges it poses to individual children and those around them, as well as the health system. According to the CDC, disability-associated health expenditures can account for more than 36% of the healthcare expenditure. The healthcare expenses for people with disabilities are determined by the cost of the service that they receive, as well as the number of services that they have received. Mostly, parents with children with disabilities are often faced with poor psychological challenges, including depressive symptoms and parenting stress that tend to significantly affect their general well-being (Hickey et al., 2019). Children with disabilities are also associated with extreme mental health challenges in most cases, sometimes due to poor peer relationships and social isolation (Hammadneh & Almogbel, 2023). Notably, disabilities place limits on the things that the children and their parents can do, with, in most cases, the disabilities affecting their entire families or particular individuals within it, especially those tasked with caring for them. The level of impairment of the child and the support that they get from their parents and caregivers significantly affect their mental health and general well-being.
Children with disabilities usually need additional support and resources in order to thrive in every aspect of their lives. Parents of children with disabilities are tasked with providing additional support to their children, and this can have negative impacts on the parents. Several studies have highlighted the impact of the responsibilities of caring for children with disabilities, including anxiety, depression, and stress levels (Brekke & Alecu, 2023). Parents with children who have disabilities such as ASD report a higher level of parenting stress than parents who raise normal children. Also, parents raising children with disabilities also tend to be more prone to developing psychiatric conditions even before having the children due to the genetic predisposition, and when this is not addressed early, it can result in heightened stress levels challenging the ability to provide the children with the amount of support that they need.
The increased stress levels have also been found to play a role in affecting the well-being, behavior, and outcome, and this has necessitated the development of interventions that seek to help parents develop the necessary skills that enable them to better manage the difficult behavior of their children while also enhancing their parental wellbeing (Osborn, 2021). Despite the possible interventions that have been put into place to enhance the well-being of the children and the parents, there is still a notable increase in well-being concerns among children with disabilities as well as their parents. Parents of children still experience significant stress in the attempts to provide the children with the support that they desire in order to live a better life and reduce the struggles that they might be experiencing. In particular, during the COVID-19 pandemic, caregivers had to adapt to new and increased stressors, including the lack of access to medical supplies, the needed therapies, and nursing care (Amy et al., 2020). Currently, the lack of the intended care significantly threatens the well-being of the children and their parents, exposing them to more challenges that continue to threaten their well-being and their conditions.
Understanding the factors that affect the well-being of children with disabilities and those of their parents is essential in establishing the most appropriate interventions that can be used to address such challenges. Children with disabilities and their parents should be the center of focus in exploring and developing interventions that enhance their well-being to minimize the impacts that the challenge poses to the healthcare system and society. Such interventions would seek to ensure the physical health and safety of both the children and their parents, emotional and behavioral well-being, social competence, and cognitive competence (Hamadneh & Almogbel, 2023). The interventions will also revolve around enhancing parenting attitudes, knowledge, and practices toward children with disabilities. Notably, parents need to be aware of the best practices and attitudes when caring for children with disabilities to avoid the deterioration of their well-being as well as those of the parents. Understanding these factors will be essential in reducing the workload that nurses are subjected to in the attempt to care for children with disabilities. The project will, therefore, play a major role, especially in enhancing the delivery of care as well as ensuring effective collaboration between the healthcare providers and the families in order to enhance the provision of care that enhances the well-being of both the children with disabilities and that of the patients.
Research Project Critique
This section provides a critique of the project in regard to the enablers, the barriers, and the strategies for development and implementation. The section will also examine the expected outcomes and the evaluation of the overall contributors. As such, the section will identify the factors that made it possible for the research to be carried out, the barriers that were experienced in the attempt to conduct the research, and how the research managed to mitigate such challenges. The identification of the expected outcomes will solely be based on the desires and the aim of the study. Essentially, the section will also explore how conducting the project will contribute to the nursing and health professionals, administrators, and policymakers. The section will also examine the role of the APN in determining the success of the project.
Enablers, Barriers, and Strategies
The high number of people impacted by the well-being of children and parents of children with disabilities was a major aspect that facilitated the research project. Throughout the research, the aim was to explore the challenges or factors that influence the well-being of children with disabilities and that of their parents and the possible interventions that can be implemented to address the challenges. Through community participation, I interacted with children with disabilities as well as their parents, an activity that offered me valuable insights regarding the well-being of the two groups of individuals. Besides, access to high-quality research has also been conducted to explore the various aspects of relationships between children with disabilities and their parents, the society, the challenges that they undergo, and the exploration of interventions in enhancing the well-being of the children and their parents. According to Brekke and Alecu (2023), mothers caring for a child with a disability are more likely to be diagnosed with musculoskeletal disorders, anxiety, depression, sleeping disorders, and migraines than mothers caring for children without disability. Such a finding informed the need to explore how such a problem can be addressed, hence the conduction of the project.
The project was also not without barriers. One of the limitations is access to the required data, particularly due to the limited studies that explore the means of improving the well-being of children with disabilities. Significantly, most studies were aimed towards addressing a specific disability, and this gave an incomprehensive understanding of the challenges and the approaches for use as interventions. In particular, Oborn et al. (2020) pointed out that their study was mostly based on self-reported data, particularly regarding the mental health of the children, and this showed that the study could not give a clear picture of the extent of the problem in the society and the healthcare system. Also, the project was limited by the lack of the required resources to conduct extensive research and fully explore the issues. The identification of children with disabilities tends to be greatly challenging, and it is only possible if they are administratively recognized, an aspect that can significantly underrepresent those with less severe conditions (Blekke & Alecu, 2023). With this limitation, the project cannot develop a comprehensive intervention that addresses the diverse needs of the parents and the children. Besides, logistical challenges, particularly due to the lack of funding for the research activities, including the collection of data, analysis, and the recruitment of participants, posed a significant challenge to the scope of the project.
Various strategies were adopted to address these barriers. In particular, alternative sources of funding were sought to address the barrier of limited funding. Such included grants from local foundations and crowdfunding platforms, which provided the researchers with the funds they needed to conduct the project successfully. The challenge of the unreliability of the data, particularly due to the use of a self-reporting approach, was addressed by using hospital data, particularly on disability rates. Also, the study adopted a streamlined recruitment process in order to ensure that the recruitment and, thus, the data collection processes reach the diverse members of the population.
Expected Outcomes
When completed, the project will lead to the development of tailored interventions to address the challenges that children and the parents of children with disabilities face that undermine their well-being. Particularly, the project is aimed solely at addressing the challenges to well-being that children with disabilities and their parents undergo. Although there are currently proposed interventions to the challenges, the project will provide more valuable insights into the available interventions that can be used to address the unique needs of the parents. Essentially, the interventions from the study will be used to improve the well-being outcomes of families with children with disabilities and, thus, improve the quality of their lives. Understanding how disabilities in a family can shape the relationships among the family members will be essential in the development of the most effective approaches for use in enhancing the relationships among the family members and tailoring the behaviors of the parents to support the well-being of the children (Hickey et al., 2019).
The project is also expected to advance evidence-based practices that can be implemented in healthcare to enhance the well-being of the population. Addressing the needs of people with disabilities can be challenging, and through this project, new approaches to enhancing the well-being of people with disabilities will be proposed. Reducing parenting stress and the depressive symptoms of the parents will enable them to enhance their relationship with the children and make it easy to offer the kind of support and assistance that the children may require and benefit from the relationships with each other (Hickey et al., 2019). Besides, the project is also expected to enhance the health outcomes of the community by facilitating collaboration in the delivery of care and the intended interventions to enhance the well-being of the children with disabilities and of their parents. Notably, the level of disabilities and the support that children receive are the key factors in enhancing their well-being and their mental health, and this means those around them should work to ensure their needs are met. The adoption of evidence-based practices in the delivery of care is essential in ensuring all the health concerns of the children and their parents are taken into consideration and well addressed.
Contributions of the Project
The project will significantly contribute to the nursing and healthcare professionals, administrators, and policymakers. Among the healthcare professionals, the project will add to the knowledge of the most appropriate interventions that can be adopted to enhance the well-being of the population in question. The project will enhance the interventions that have already been adopted to enhance the well-being of children with disabilities and their parents. By exploring the factors that affect parental well-being and the most effective support strategies, the project will significantly contribute to the well-being of the children and their families, particularly by providing them with support systems that address their unique needs. The project will make it possible for healthcare professionals to develop tailored interventions and collaborate with other individuals, including therapists and social workers, to ensure that the needs of the children and their parents are addressed. Among the consumers who are the families of children with disabilities, the project will enhance their well-being by ensuring the implementation of effective interventions that can address the unique needs of both the children and their parents. By doing this, the study will help attain positive outcomes in aspects of well-being for both the children and their parents, and also help them to easily and positively cope with the disabilities and any other challenges that they may experience due to their conditions.
Role of the Advanced Practice Nurse
The advanced practice nurse (APN) plays a major role in the project, and the nurse is informed particularly by their role in the implementation and dissemination of the interventions. Notably, the APNs actively contributed to the research in the designing and implementation phases. APNs tend to be experts in the delivery of care for people with disabilities and are, as a result, aware of the challenges that they encounter and the possible interventions or approaches that can be used to ensure that the well-being of both the children and the parents is ensured. Their expertise also extends to the drafting of the research questions, the selection of the most appropriate methodologies for use in the project, recruiting the participants in the project, facilitating the collection of the data, and ensuring that the practices and the activities of the study adhered to the ethical expectations and standards.
The APN was also involved in implementing the interventions in the research project using evidence-based practices. Through this, the APN ensured that the interventions and the practices of the study reflected the best practices that can enhance the well-being of the children and their parents while also facilitating active participation among all the participants in the project. As such, the APN would ensure active coordination among the participants by coordinating the activities of the healthcare professionals, social workers, and therapists, among other participants, in ensuring that the children and their parents are provided with the needed care. The APN acts as the backbone for the project implementation process without their expertise and role in the field. Through the engagement in the project, the APN significantly enhanced their expertise in research skills and facilitated the development and adoption of evidence-based practices to help address the challenges experienced by students with disabilities and their parents.
Reflection
Throughout the semester and by carrying out this project, I have significantly enhanced my research skills, with a specific focus on developing skills that address challenges experienced in the real world. While carrying out the project, I relied on my research skills to identify the best approaches that can be used to address the challenges experienced by the identified population. Through the research, I learned that addressing real-world problems requires more than just effort from one person. Instead, addressing these challenges requires collaboration among professionals from different fields to ensure that the interventions adopted are effective in addressing the problem. Without collaboration in the implementation of the interventions, it would be impossible for them to be effective.
The project also exposed me to various challenges. In particular, I was challenged to ensure that the appropriate data analysis practices were utilized in the project. As a clinician, I had limited experience in statistical data analysis, and the fact that the study relied on statistical data analysis significantly challenged me. In most cases, had to consult experts in the field to ensure that my practices and results reflected the issues that the data reflected. I was also dedicated to finding a solution to the issue, and I believe, through this, I was successful in overcoming this challenge and enhanced my understanding and expertise in research methods and statistical data analysis. In the project, I also struggled with recruiting participants for the study, particularly by having to explain to them how the study would be beneficial to them. Here, I had to understand how to build rapport with the participants and show them empathy while remaining professional. The skills that I acquired by overcoming this challenge would be useful in my practice as an APN as they have equipped me with useful skills and expertise.
Conclusion
Children with disabilities and their parents usually experience various challenges that significantly affect their well-being. With the increasing rates of children with disabilities, adopting appropriate measures to address such challenges is a major concern for healthcare professionals. The project was facilitated by various factors, the notable ones being the involvement in community-based activities and the availability of numerous pieces of literature exploring the challenge. The project was headed and coordinated by an APN who played a major role in determining the major approaches for use in the research and the implementation of the interventions. When complete, the project will significantly enhance the well-being of children with disabilities and that of their parents. By doing this, the project will be informing practices adopted by healthcare providers and policymakers in an attempt to address the healthcare disparities and challenges that members of a certain group, in this case, the children with disabilities and their parents, may exhibit.
References
Amy, H., Debbi, H., Ashli, M., Tal, L. (2020). COVID-19’s Impact on the Practice of Pediatric Rehabilitation Medicine: Insights and Recommendations. https://content.iospress.com/articles/journal-of-pediatric-rehabilitation-medicine/prm200769
Brekke, I., & Alecu, A. (2023). The health of mothers caring for a child with a disability: a longitudinal study. BMC Women’s Health, 23(1), 639. https://link.springer.com/article/10.1186/s12905-023-02798-y
Hamadneh, B. M., & Almogbel, W. N. (2023). The level of well-being of 6–12-year-old children with disabilities from the point of view of parents. International Journal of Education in Mathematics, Science and Technology, 11(1), 252-266. https://ijemst.org/index.php/ijemst/article/viewFile/3015/347
Hickey, E. J., Hartley, S. L., & Papp, L. (2020). Psychological well‐being and parent‐child relationship quality in relation to child autism: An actor‐partner modeling approach. Family Process, 59(2), 636–650. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6732055/
Osborn, R. (2021). Mindfulness Treatments for Parents of Children with Developmental Disabilities (Doctoral dissertation, University of Technology Sydney (Australia)). https://opus.lib.uts.edu.au/bitstream/10453/144299/2/Osborn2020_Article_MindfulnessTherapiesForImprovi.pdf
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