2022 CYCC Families Needs Assessment

Report Cover with circle pictures of children surrounded by graphic design lines

2022 CYCC Families Needs Assessment

Download Report Here (pdf)


The year long in-depth Needs Assessment, completed in collaboration with JSI/Community Health Institute, dives into NH families caring for youths under the age of 21 with a chronic physical health condition. The assessment was completed this fall and presented to our council at our November meeting. The final report includes data and information gathered from a survey, listening forums, and individual and group interviews. The PhotoVoice Project is the visual representation portion of the assessment.

Four Main Research Objectives

  1. Contextualize the financial impacts families face in caring for a child with a chronic condition.
  2. Understand the holistic impact managing a youth’s chronic condition can have on a family.
  3. Describe both the supportive and challenging features of the current continuum of care (community-based, clinical, etc.) to support children with chronic conditions, their caregivers, and their families. Describe strengths and challenges in accessing a comprehensive
    range of services to support families managing a youth’s chronic condition.
  4. Identify communities with greater need and the unique challenges they face.

Most of the data and information gathered was from a qualitative lens.  The Coming Into Focus: PhotoVoice project portion used photography to capture the joy and challenges of living with a chronic health condition from eight NH families. Although each families’ experiences were unique, the images showed common threads that connect them to each other and to the larger disability community. These common threads were captured in the key findings under each of the four main research objectives.

Key Findings

Financial Impact Key Findings

  • Families shoulder a high percentage of the medical costs associated with the chronic condition.
  • Some families are unable to afford essential needs of daily living.
  • Family budgets are often unable to absorb the costs of vacations and extracurricular activities.
  • Caregiver employment is often affected by the demands of the chronic condition.

Holistic Family Impact Key Findings

  • Families of children with chronic physical health conditions are incredibly resilient, but the chronic stress of caregiving affects both the
    emotional and physical health of parents/caregivers.
  • Caregiving falls on the family, at times unequally, and can affect the relationship between caregiver partners.
  • Families often feel isolated from social circles and personal supports.
  • Children with chronic conditions may feel like they are excluded from and/or “behind” their peers.
  • Siblings of children with chronic conditions often are in need of services that address their emotional and mental health needs.

Strengths and Challenges of Supports and Services Key Findings

  • Families have trouble navigating and understanding what is available to them in a complex and disjointed system of services and
  • Families do not universally experience family-centered care.
  • Many access school-based services, but support does not always meet their needs.
  • Health care transition services for young adults and adolescents are extremely beneficial but often lacking.
  • Many families lack access to the services they need due to lack of eligibility and availability.

Communities Identified with Greater Need and Challenges

  • Families with one caregiver
  • Families with difficulty communicating in English
  • Immigrant/refugee communities
  • Grandparents
  • Families living in rural areas

This information gathered through the broad Needs Assessment and Photo Voice project, will be used by the Council and other stakeholders to better understand the unmet needs of families across the state and help inform future policy and advocacy efforts. Please contact us at info@nhcycc.org if you are interested in further data and charts collected from this Assessment.


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