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10 participants have successfully completed Zoom meeting and answered 15 survey questions afterward

18-44 Years of age

Gender: 7 females / 3 Males

Individuals who were married, single, common-law, or separated were involved in the research findings

mental health of each participants fluctuated between very poor - good

Support from friends/familes- 6 yes / 4 no

Survey ::Support Programs and Counseling Services

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18-24 years old (2 = 20%)

25-34 years old (4 = 40%)

35-44 years old (4 = 40%)

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Married (3=30%)

Single (5=50%)

Common Law (1=10%)

Separated (1=10%)

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Very poor (3= 30%)

Poor (3= 30%)

Average (3=30%)

Good (1= 10%)

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The Mental Health Caregivers Face Raising a Child with Down Syndrome

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The Mental Health Caregivers Face Raising a Child with Down Syndrome

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Focus Group - Qualitative research Method

Research question: What are the factors which effect the mental health of caregivers raising a child with Down syndrome? What support programs or counseling services are available?

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Employed Full-time (1= 10%)

Employed Part-time (2= 20%)

Unemployed (4=40%)

Student (2=20%)

Alternative (1=10%)

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Semi-structured interview guide

The study consisted of 6 open-ended questions during a 60-minute interview.

10 participants (3 males, 7 Females) attend Zoom meeting and answered questions

Parents worked together as a team to provide common and collaborative replies while addressing questions

Theme: Social Environment Factors, Parents Mental Health and Financial Struggles,

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1. Based on your experience, what specific emotional and mental health assistance do you think parents of children with Down syndrome require the most?

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1. Based on your experience, what specific emotional and mental health assistance do you think parents of children with Down syndrome require the most?

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Summary

Parents of children with Down syndrome emphasized the essential need for emotional and mental health care during a collaborative and supportive discussion.

Many individuals have expressed a significant need for precise and current information on Down syndrome to correct misunderstandings about the child's capabilities.

Parents emphasized the importance of understanding possible challenges and celebrating important milestones. Emotional support was highlighted as crucial, emphasizing the need for inexpensive counselling services tailored to meet their specific difficulties, along with acknowledging the achievements of family and partners to enhance self-confidence.

Parents emphasized the need for financial help for managing medical expenses and treatments, as well as obtaining advice on comprehending insurance plans and government aid programs.

Helping siblings grow into supportive roles and developing techniques to foster strong connections between siblings also came up as important topics.

CODES : Importance of Emotional Support ; Importance of Emotional and Mental Health Care ; Financial Support for Medical Expenses ' Understanding Challenges and Celebrating Milestones

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2. Can you provide any instances or stories when you, as a parent, received notable recognition or support for your mental well-being?

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2. Can you provide any instances or stories when you, as a parent, received notable recognition or support for your mental well-being?

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Community appreciation, especially on World Down Syndrome Day, is a major form of acknowledgment. The Down Syndrome Association of Toronto (DSAT) organizes an event to celebrate and increase community awareness.

This social recognition not only confirms the feelings of parents but also enhances the overall comprehension of Down syndrome. Family gatherings are important for giving support and celebrating children's milestones and achievements, such as walking, using the bathroom, and attaining independence, which serve as affirmations of growth.

Parental support groups are essential for mental well-being, offering a space for parents to get comfort through shared experiences and insights while tackling specific obstacles collectively.

Parents mention that in the school environment, student aides provide extra help in the classroom by working one-on-one with students who have special needs, such as DS, to provide an accepting and safe environment for all students.

This supports the child's progress in school and provides parents with confidence in the quality of the educational setting. Recognition and support play a crucial role in fostering a pleasant and empathetic experience for parents of children with DS.

CODES: Family Gatherings for Support and Celebration ; Support in School Environment; Recognition and Support for Parents

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3. What are the main financial difficulties encountered in your family, such as medical bills, schooling, and treatment costs?

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3. What are the main financial difficulties encountered in your family, such as medical bills, schooling, and treatment costs?

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Summary

The financial challenges that parents face are significant this includes considerable expenses for medical needs such as surgical procedures, medications, and the upkeep of essential supportive equipment.

The costs associated with various therapies, such as occupational, speech, and physical therapies, and additional programs like American Sign Language, further contribute to the strain on finances.

For many families, purchasing and caring for assistive technology—such as glasses or hearing aids—as well as investing in communication or instructional technologies present significant financial obstacles.

Income loss is a common experience, as some parents have to cut work hours or encounter professional obstacles in order to prioritize the demanding responsibilities of caregiving.

The difficult balance between work and caregiving duties has a big influence on family earnings. Insurance coverage gaps cause additional financial strain when certain treatments and therapies are not fully covered, resulting in required out-of-pocket costs.

Not only is respite care necessary for the health of parents, but it also comes with a price tag that is often higher because of the special requirements of children with special needs.

CODES : Importance of Respite Care; Assistive Technology Challenges ; Costs of Therapies and Additional Programs ; Medical Expenses and Supportive Equipment

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4. How do your financial responsibilities affect your family's quality of life, including your ability to pay for housing, find work opportunities, and access necessary resources and services?

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4. How do your financial responsibilities affect your family's quality of life, including your ability to pay for housing, find work opportunities, and access necessary resources and services?

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Summary

The financial obligations of caring for a child with special needs, such as Down syndrome, greatly affect families quality of life in multiple areas. Parents mention that medical expenses provide a significant obstacle to home costs for families.

Medical expenses, such as bills, treatments, and specialized equipment, create difficulties for families in finding affordable accommodation that meets their child's particular demands.

Balancing caring responsibilities with work obligations can negatively impact career prospects, leading to reduced income. The need for adaptable work hours to accommodate caring responsibilities could impede career development and impact job options, ultimately harming financial security.

Financial constraints limit their access to resources, hindering their ability to offer essential items like educational materials, assistive technology, or specialized devices for their child.

Financial burden also affects the capacity to provide extracurricular activities, which limits their child's involvement and possibilities for growth. The inability to pay for essential medical treatments and therapies for their child's health and growth is a major worry.

Financial limitations hinder access to essential healthcare services, which can affect their child's overall welfare. Participating in social events is difficult because of financial limitations, causing our families to feel alone. The restricted opportunities to engage in social activities have a significant effect on each families quality of life, highlighting the widespread impact of financial obligations on several facets of everyday life.

CODES: Financial Strain on Housing; Career Impact and Reduced Income ; Impact on Extracurricular Activities ; Limited Access to Resources

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5. Have you experienced social isolation because of your child's unique demands within society, and how has this affected your mental health and emotional well-being?

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5. Have you experienced social isolation because of your child's unique demands within society, and how has this affected your mental health and emotional well-being?

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Summary

Lack of awareness and understanding of DS in society has resulted in social isolation, causing parents to feel lonely since others do not comprehend their child's specific needs and challenges.

Prejudices and negative perceptions of DS increase parents feelings of being alone, causing some parents to avoid social engagements due to concerns about criticism or emotional pain.

The lack of social activities that are inclusive for both children and families exacerbates their social issues, since the duties of looking after a child with special needs restrict their chances for social interaction.

The social isolation has negatively impacted their mental health and emotional well-being.

Parents have a common battle with feelings such as loneliness, depression, and anxiety. Minimal involvement in diverse and inclusive societies contributes to feelings of isolation, affecting all aspects of their interaction with others.

In educational settings, parental involvement in school events may be limited due to their child's sensitivity to noise or challenges in keeping up with class performance, necessitating periods of sitting out.

This affects the social interactions parents experience, influencing their capacity to actively participate in many elements of their child's educational progress.
CODES: Impact on Mental Health ; Lack of Social Activities ; Social Isolation ; Negative Perceptions

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6. Are there any barriers and challenges to accessing support programs and counseling services, and what strategies can be implemented to enhance their accessibility and effectiveness?

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6. Are there any barriers and challenges to accessing support programs and counseling services, and what strategies can be implemented to enhance their accessibility and effectiveness?

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Parents face obstacles and difficulties when trying to access support programs and counselling services. Limited financial resources provide a major obstacle, making it difficult for families to pay for counselling sessions.

Promoting subsidized or inexpensive counselling services and looking into financial assistance programs become crucial tactics to solve this. Another challenge is the limited availability of specialized expert services, since locating counsellors with expertise in DS may be challenging in certain areas.

To address this difficulty, a plan might be implemented by creating and advocating for counsellor training programs in partnership with DS support organizations.

The stigma around mental health compounds matters, sometimes deterring parents from seeking counselling because of a lack of understanding.

To address this stigma, strategies include implementing community awareness campaigns and distributing literature that highlight the mutual advantages of seeking help. Time constraints provide issues as parents have limited access because of their hectic schedules.

Providing counselling services with flexible hours, such as weekends and nights, is essential to address this issue.

Cultural and linguistic barriers affect the effectiveness of counselling services, requiring the implementation of culturally appropriate services, language support, and training counsellors on various cultural backgrounds to promote inclusivity.

CODES: Stigma around Mental Health ; Financial Obstacles ; Specialized Expert Services ; Time Constraints for Parents

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Lack of gender diversity-The research is limited by the small sample size, including 3 men and 7 females.

The results may have limited generalizability to a larger population due to the non-representative gender distribution.

Gender Bias Concern-The uneven proportion of male and female participants might lead to biased findings due to the potential differences in experiences and perspectives depending on gender.

The study's results' validity and comprehensiveness may be impacted by this imbalance.

COVID-19 Choosing to conduct interviews on Zoom because of the possibility of COVID-19 exposure may add a possible influencing variable. having to have the interview online can have affected how participants responded, their opinions, and habits, making it difficult to determine the actual effect of everything that is being studied.

Restricted Interaction Setting Face-to-face conversations may provide a higher degree of comfort and rapport than virtual interviews. This might influence the participants' willingness to disclose personal experiences and could effect the depth of insights obtained throughout the interviews.

Parents were trying to connect with me as a mom and not as a professional for more information about my parenting menthod

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1. Outline/Steps how Data will Analysis

Thematic analysis data will be used for both the interview and survey questions.

2. Understanding the Data:

Recognizing, examining, and communicating trends or themes present in data (interview / Survey questions)

3. Generate codes:

Initiate the coding process by assigning labels to segments of text that represent key information.

4. Organize into themes:

Group related codes into potential themes

Themes may be evident in both interview and survey data, while others may be specific to one or the other.

5. Define and Name Themes:

Precisely articulate each theme and assign them descriptive names that accurately convey their content.

Ensure that the themes are distinct and accurately represent the data.

6. Create Reports:

Construct a narrative report delineating each theme, incorporating quotes from both interviews and surveys. Iterate through the analysis process, enhancing themes, and actively seeking feedback to ensure a more comprehensive and robust interpretation.

7. Discuss the limitation and gaps