Focus Group Insights Help Guide Future Enhancements to Family Caregiver Services at DHSS

NEWARK (Nov. 14, 2022) – The Division of Services for Aging and Adults with Physical Disabilities (DSAAPD) is using the findings from a report based on caregiver focus groups held late last year across the state to enhance its current supports and develop a new approach to caregiver services. This includes the formation of the Delaware Action Network for Caregivers, a forum where caregivers can learn and collaborate with agencies supporting caregivers. Its inaugural meeting will be held Nov. 29, 2022, during National Family Caregivers Month.

DSAAPD released the report today, compiled by Wilder Research, which builds on the Division’s efforts to better support unpaid family caregivers throughout the lifespan.

“Family caregivers play a significant role in supporting parents, children, siblings, and other loved ones who need care for a variety of reasons,” said DSAAPD Director Melissa Smith. “Many older adults prefer to remain in their homes for as long as possible, and families often prefer to care for their children and other family members at home. However, caregiving can have major impacts on caregivers’ health and well-being. Providing supports to these individuals and helping them access the resources they need is critically important.”

Four main themes emerged from eight focus group sessions that included 38 participants:

Family caregiver characteristics and experiences
According to the AARP report, Caregiving in the United States 2020, caregiving cuts across generations, race and ethnicity, income and family composition, among other identifiers. The characteristics of the caregivers who participated in the local focus groups affirms this observation. However, the information shared by the caregivers during the focus groups showed that there is no one “typical” caregiver and no one “typical” caregiver experience. Needs and expectations vary and can be constantly in flux.

Lack of awareness of services and difficulty locating useful information
Focus group participants expressed a lack of full information about what services might be available to them as one of the most common barriers to accessing supports.

In addition, focus group participants expressed frustration with the amount of time and effort required to navigate systems and find supports.

Concerns about the reliability and quality of services
Focus group participants discussed difficulties in arranging for services. Many factors contribute to this, including the limited availability of paid staff, cost of care, uncertainties about whether caregivers can trust the information or abilities of paid staff, and care recipients’ reluctance to have unfamiliar people care for them.

Financial impact of caregiving
Families are asked to make difficult choices about finances and managing necessary care. Participants discussed the high cost of medical care and the challenges of navigating insurance coverage. In addition, paid employment can be difficult to manage in the face of caregiving responsibilities.

This project was funded through grant support from the National Academy of State Health Policy (NASHP) and the John Hartford Foundation. Read the full report on the DSAAPD website. For more information about the Delaware Action Network for Caregivers, call the Delaware Aging and Disability Resource Center (ADRC) at 1-800-223-9074.


DPH Offers Guidance And Resources On How To Navigate The Infant Formula Supply Shortage

DOVER (May 17, 2022)  The Division of Public Health (DPH) is providing guidance to families struggling to find formula due to a shortage caused by a supply chain issues, including avoiding taking certain measures that could be harmful to their infant’s health.

DPH sent out a letter from U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration’s Maternal and Child Health Bureau to families and maternal child health stakeholders, offering individuals information on how to safely navigate the shortages. 

Parents and caregivers are offered the following guidance:   

  •  Talk to your doctor: Families should consult their pediatrician to discuss the best options for their child. Doctors can provide guidance on comparable formula and specialized formula to meet their babies’ medical and nutrition needs. 
  • Consider a substitute formula: For most babies, it is OK to use a similar version of their formula if their regular brand of formula is not currently available. Talk with your baby’s pediatrician about alternatives.  
  • Check the manufacture’s site online for formula availability before going to a store to purchase.    

DPH reminds parents/guardians: 

  • Do not make or use homemade formula: Per the American Academy of Pediatrics (AAP) and Food and Drug Administration (FDA), homemade formulas often lack or have inadequate amounts of critical nutrients vital for a babies growth and development and in some cases can cause infants to be hospitalized due to low calcium. 
  • Never dilute formula: Watering down infant formula can be dangerous and even life-threatening, leading to a serious nutritional deficit and health issues. 
  • Consider a substitute formula: For most babies, if their regular brand of formula is not currently available, using a similar version of their formula is ok. Talk with your baby’s pediatrician about alternatives.  
  • If not receiving breast milk, formula should be used until your baby turns 1 year old, but if your child is over six months you can start to supplement nutrition with some solids. Talk to your pediatrician about introducing some solids like fortified cereal, mashed bananas and pureed poultry and beans. 
  • Talk to your doctor: Families should consult their pediatrician to discuss the best options for their child. Doctors can provide guidance on comparable formula and specialized formula to meet their babies’ medical and nutrition needs.  
  • Breastfeed your child: When possible, breastfeeding is the healthiest option for children under age 1. 
  • For parents who are breastfeeding or need additional support, they may want to consider a lactation consultant or support groups, or seek assistance to access a breast pump at a low cost through your insurance provider, Medicaid, or WIC to assist with milk supply. There are also breast milk banks that properly store, test and distribute donated mothers’ milk to meet the specific needs of infants for whom human milk is prescribed by physicians.  The Delaware WIC program offers breastfeeding assistance to new mothers, including peer counselors, lactation consultants and manual pumps. Details on WIC’s breastfeeding programs can be found here. 

DPH has also taken the following steps to help parents and caregivers as the supply chain issues get resolved nationwide: 

  • WIC recipients have been asked to return any unused formula to the Food Bank of Delaware or another state agency food pantries.   
  • WIC recipients also were granted a waiver to substitute formula this winter when supply chain issues that were made worse by a recall first emerged. A chart of formula alternatives was created to help parents and caregivers select the right formula for their child.   
  • Parents who are breastfeeding or need additional support may want to consider a lactation consultant or support groups, or seek assistance to access a breast pump at a low cost through their insurance provider, Medicaid, or WIC to assist with milk supply. The Delaware WIC program offers breastfeeding assistance to new mothers, including peer counselors, lactation consultants and manual pumps. Details on WIC’s breastfeeding programs can be found here.   
  • DPH reminds parents that state and community resources that could be helpful during this time are available, such as WIC, SNAP, or TANF to help with the cost of buying formula or to find other infant supplies through local food banks including the Food Bank of Delaware. DPH also offers a breastfeeding guide for mothers who want to find support or learn more about breastfeeding.

Several birth hospitals in Delaware also offer breastfeeding support and parent education. Individuals should check with their local hospital to see what services are offered.   

Delawareans are encouraged to visit dethrives.com for up-to-date information on Delaware’s response to the infant formula supply chain issues, call 211 for community resources and services near you, or follow DEThrives and DPH on Facebook and Instagram.     

# # # 

Anyone who is deaf, hard of hearing, Deaf-Blind or speech disabled can contact DPH by dialing 711 first using specialized devices (i.e., TTY, TeleBraille, voice devices). The 711 service is free and to learn more about how it works, please visit delawarerelay.com.   

Delaware Health and Social Services is committed to improving the quality of the lives of Delaware’s citizens by promoting health and well-being, fostering self-sufficiency, and protecting vulnerable populations.