Resources for Supporting Families Coping with Chronic Illness

Receiving a diagnosis of a chronic illness can upend the lives of patients and their families. Everything from daily routines to family dynamics must shift to accommodate a new normal brought on by the illness. Access to the right resources can make facing this challenge a little easier for families and caregivers.

What Are Chronic Illnesses, and How Do They Affect Families?

The term “chronic illness” can refer to a variety of health issues, ranging from asthma to cancer. Chronic illness is a “condition that lasts one year or more and [requires] ongoing medical attention or limits activities of daily living or both,” according to the Centers for Disease Control and Prevention. The National Health Council reports that approximately 133 million Americans are affected by at least one chronic condition (PDF, 163 KB).

Chronic illnesses are ongoing and incurable. Some conditions cause constant symptoms, whereas others go through unpredictable cycles of remission and return. The continuous nature of chronic illnesses—the fact that the ill person may never truly get better—can hit families hard.

“There are so many unknowns when you live with chronic illness,” said Allison Fine, founder and executive director of the nonprofit Center for Chronic Illness in Seattle. “It’s this ongoingness. In our society, in general, we want things to be kind of neat and tidy and cleaned up and fixed.”

Family members may face different emotional difficulties, depending on their relationship with the loved one who has the condition. Parents and spouses, along with their loved one with the illness, may feel grief or loss related to the future they imagined before receiving a diagnosis. Fine, who is also a clinical social worker, noted that siblings without the disorder, particularly young children, can sometimes develop feelings of isolation or resentment if they receive less of their parents’ attention. Additionally, any family member who takes on a caretaking role will sometimes feel overwhelmed or exhausted and may experience compassion fatigue.

“Oftentimes, our own self-care kind of falls away when another person that we care about or care for has truly high needs,” Fine said.

In a tangible sense, having a parent, sibling, child or spouse with a chronic illness takes a toll on family members’ time, money and energy. Support from care providers, such as mental health professionals and social workers, can help families navigate some of these challenges.

How Can Social Workers Support Families Affected by a Chronic Illness?

Clinical social workers, particularly those who work in hospitals or other medical care centers, may often work with chronically ill clients. They may be able to better assess the unique strengths and challenges of a client’s family unit than medical personnel, which could greatly improve care for someone with a chronic illness. The journal Social Work in Health Care lists a number of services social workers can offer families, which may include assessments, care coordination, counseling and help connecting to outside resources.

Four Ways Social Workers Help Families Affected by a Chronic Illness

1

Psychosocial Assessments

  • Continually evaluating a client’s caregiving needs and how family members are managing to meet them.
  • Identifying existing social support systems and how the client and family utilizes them.

2

Care Coordination

  • Assisting various medical providers and community organizations in working together to provide the best care.
  • Working with the client, different family members and caregivers to create schedules and systems for smooth cooperation.
  • Facilitating positive interactions and clear communication between everyone involved in care.

3

Supportive Counseling

  • Exploring emotions such as grief, guilt, depression, resentment, helplessness and anxiety that clients and their families may struggle with.
  • Educating family members on techniques to improve empathy for their loved one and cope constructively with negative emotions.
  • Supporting families as they navigate shifting relationship dynamics, particularly between the client and family caregivers.

4

Connection to Resources

  • Finding community organizations, support groups and other wellness programs that may prove helpful for clients and their families.
  • Providing accurate and useful information about the disease.
  • Helping clients and caregivers navigate insurance and health care systems.

Other types of social workers, not just those working in clinical settings, can play an important role in helping families manage chronic illnesses.

“People that work in community mental health, people that work in religious settings, people that work in schools—I think across the board, no matter what kind of a role a social worker’s in, they’re going to come across somebody who lives with chronic health challenges,” Fine said.

Social workers can help families identify and avoid common family dynamic pitfalls related to chronic illness and caregiving.

Four Common Relationship Issues for Families Caring for Someone with a Chronic IIlness

  1. Caregivers, especially parents, do not set aside time for themselves.
  2. Other siblings do not get the attention they need from parents, causing them to feel left out.
  3. Spousal relationships become unbalanced as a result of the need for caregiving.
  4. A family member tries to do it all alone because they don’t know how to ask for support.

Below are some resources to help families and caregivers overcome the challenges of supporting a loved one.

Resources for Families Affected by a Chronic Illness

Family Members with a Chronic Illness

An Overview of the Americans With Disabilities Act (PDF, 252 KB)

The ADA National Network put together a factsheet explaining the key points of the Americans with Disabilities Act. Understanding this important piece of legislation can help U.S. citizens with chronic illnesses better understand their rights to employment, access and services.

Directory of Group Therapy and Support Groups for Chronic Illness

Psychology Today hosts an online database of support groups, group therapy and other programs to support those dealing with chronic illness. The directory is location-based to make it easy to find programs near the searcher.

Navigating the Teenage Years with Type 1 Diabetes (5.1 MB)

This toolkit from JDRF provides information for teenagers and their parents on how to navigate adolescence with Type 1 diabetes. It provides information on aspects of adolescent life applicable to many other chronic illnesses as well, such as communicating about medical care, transitioning to self-care and reacting to rebellious behavior that could prove dangerous to a teen’s health.

Retreats, Camps & Recreational Programs for Chronic, Serious or Life Threatening Illnesses

Children growing up with a chronic disease sometimes miss out on experiences other kids take for granted. This list of programs and camps for kids living with illness was curated by the nonprofit NeedyMeds, a national information resource to help people find assistance with health care costs. For more options, check out the SeriousFun Children’s Network directory of camps. 

Experience Journals

Developed by Boston Children’s Hospital, Experience Journals is a web project that features videos, stories and artwork by children, teenagers and families. Reading about similar experiences can help those struggling with a chronic disease to feel less alone and more hopeful.

Fight Like a Mother: How to Be a Mom With a Chronic Illness

Joslyne C. Decker’s book features personal stories, outside resources and practical tips for mothers suffering from a chronic disease.

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness

In this book, Paul J. Donoghue and Mary E. Siegel address the difficulties faced by those with illness symptoms that are not easily observable to others, such as chronic pain and chronic fatigue. The authors discuss ways that those who struggle with invisible chronic illness can communicate with others about their symptoms and reframe their illness for themselves. 

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Family Caregivers

Glossary from the Caregivers Library (PDF, 193 KB)

From “accessory apartment” to “viatical settlement,” this list of terms and definitions provides a starting point for new caregivers. It was created by the National Caregivers Library, a website that compiles resources about caregiving for family caregivers, professionals, seniors and employers.

National Respite Locator

The ARCH National Respite Network offers a web-based database of respite services around the United States and Canada to help caregivers and professionals locate respite care in their communities. Respite care allows caregivers a short break and is vital for maintaining self-care.

Sharing the Care: The Role of Family in Chronic Illness (PDF, 683 KB)

This guide to family involvement in chronic care management comes from the California HealthCare Foundation. It details the benefits of family involvement in care, identifies specific strategies for increasing and improving family involvement and goes over three case reports of family intervention programs.

State Family and Medical Leave Laws

This overview from the National Conference of State Legislatures details information on different state family medical leave laws, including requirements and eligibility.

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Adults with a Chronically Ill Parent

Eldercare Locator

This online database created by the U.S. Administration on Aging provides a location-based search to find services for senior citizens and their families.

Help Caring for a Loved One with Dementia

This step-by-step guide from AARP takes caregivers through the stages of coping with a loved one’s dementia. Each of the five steps include a short “quick tips” section and a list of further resources.

Sandwich Generation Financial Literacy Toolkit: Caring for Aging Parents (PDF, 122 KB)

The “sandwich generation” is a term that refers to adults in the tough position of caring for aging parents and growing children at the same time. Created by the American Institute of Certified Public Accountants and the California Society of Certified Public Accountants, this fact sheet focuses on how to prepare for and weather the financial struggles that may come from providing care for aging parents.

The FYI Elder Care Toolkit

This webpage from the Family & Youth Institute goes over some basic information about caring for aging parents, particularly for adults who also have children. It covers a wide range of topics, including talking to your family about elder care, elders’ mental health and well-being needs and how to avoid caregiver burnout.

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Children with a Chronically Ill Parent

Talking to Children and Teens About Parkinson's (PDF, 114 KB)

This guide presents a series of practical tips for discussing a parent’s or grandparent’s Parkinson’s disease with kids and teenagers, as well as a list of children’s books that can help with understanding the disease in age-appropriate ways. The resource was developed by the Michael J. Fox Foundation for Parkinson’s Research.

When a Parent Gets a Cancer Diagnosis: Coping Toolkit (PDF, 1.4 MB)

Prepared by licensed clinical social worker Sophia Sandoval-Meyer and presented by Kids Konnected and FCancer, this document includes specific coping activities broken down by age group. The activities are designed to “help families open the lines of communication, break feelings of isolation and help children be heard.”

When Mom or Dad Has Epilepsy

This webpage from the Epilepsy Foundation features common questions that children may have about a parent’s epilepsy and positive responses to such questions. Many of the questions, such as “Will it ever go away?” and “Is it contagious?” apply across various chronic or serious illnesses.

Ravyn's Doll: How to Explain Fibromyalgia to Your Child

This picture book uses a creative story and colorful illustration to explore the concept of an invisible illness for children to understand. Additionally, a portion of all proceeds from author Melissa Swanson’s book are donated to the International Support Fibromyalgia Network.

What Does Super Jonny Do When Mom Gets Sick?

Written by radiographer and mom Simone Colwill, this picture book provides a lighthearted way to talk about a parent’s illness with a child. It also explains the roles of various hospital staff members in a way that children can understand.

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Parents and Caretakers with a Chronically Ill Child

Diamonds or Dust: Keeping Your Marriage Together When Your Child Fights for Life (PDF, 39 KB)

This article featured on the Arkansas Children’s Hospital website uses the metaphor of a diamond to explain how couples can support their marriage while coping with the pressure of their child’s serious illness.

Financial Management During Crisis

If a child has a serious chronic illness, money may be the last thing a parent wants to worry about. But unfortunately, illness can pose serious financial challenges. This article from Nemours Children’s Health System’s KidsHealth site provides practical advice for managing medical costs.

Parent Toolkit: Strategies for Maximizing Your Child's Health

Children’s Hospital Colorado put together a comprehensive set of resources to help parents best take care of their child with chronic illness. Sections include “Building Resilience in Families with Chronically Ill Children,” “Navigating the Medical System,” “Helping Your Child Cope With Medical Procedures,” and more.

Parenting a Child with a Life-Limiting Illness Toolkit (PDF, 891 KB)

Created by Global Genes, a nonprofit dedicated to aiding those with rare diseases, this toolkit features practical information about caring for the whole family, dealing with health insurance and understanding various medical devices.

Parenting a Child with Chronic Illness (PDF, 359 KB)

Written by a mother and developed by the nonprofit Bateman Horneman Center, this resource offers advice for aspects of parenting such as receiving school accommodations, creating a support system and seeking medical advice and treatment options.

Extreme Parenting: Parenting Your Child with a Chronic Illness

This book by Sharon Dempsey covers a range of topics and different stages throughout a child’s development. It addresses hard questions, such as how to tell a child about their diagnosis, and lists advice at the end of each chapter.

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Siblings of a Chronically Ill Child

Dana-Farber Sibling Program

This webpage describes programs that the Dana-Farber Cancer Institute has implemented to support healthy siblings. It also features a video created by and for siblings to explain some of the experiences and feelings that siblings of children with chronic illness might face.

How to Let Young Siblings Know You Care (PDF, 117 KB)

This document from the Sibling Support Project features testimonials from kids with a chronically ill or disabled sibling about what kinds of behaviors and conversations helped them feel loved and cherished by their families and communities.

Sibling Concerns

This webpage from Siblings Australia lists some of the most common issues that arise for siblings of children who are chronically ill. Being aware of such pitfalls and watching out for them can help parents to best take care of all their children.

Sibshops

Sibshops are workshops created by the Sibling Support Project to connect kids who have a sibling with a chronic illness with one another. Their purpose is to provide peer support and practical resources for children who may sometimes feel overlooked in the face of their sibling’s illness. Since they take place all over the world, you can find a sibling workshop with the website’s Sibshop locator.

Day By Day: Children Tell Their Journeys of Faith and Determination Living With a Sick Sister or Brother

Written by Christine Frisbee, a mother inspired by her four children’s strength while their brother battled leukemia, this book features personal stories from siblings around the country. It features a guide to constructive thinking for families as well as a list of sibling support groups.

Hi, My Name is Jack

This picture book by Christina Beall-Sullivan is written for healthy siblings with a chronically ill brother or sister. It is not illness-specific and can be adapted for families’ unique needs. It addresses a variety of emotions siblings might feel and can help facilitate positive family communication.

What About Me?: When Brothers and Sisters Get Sick

This picture book for young children tells a story that grapples with the complex feelings children can face when their sibling is ill. It is written by Allan Peterkin, a Toronto-based physician and author of several children’s books.

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Grandparents with a Chronically Ill Grandchild

Cystic Fibrosis: Emotions After a Grandchild’s Diagnosis

Australia-based nonprofit Baby Steps Cystic Fibrosis provides a list of the do's and don’ts for grandparents whose young grandchild has just been diagnosed with CF. The page covers ways that grandparents can support parents as well as tips for protecting the baby’s health.

My Grandchild Has Cancer

CLIC Sargent, a UK-based charity serving children and families with cancer, features a webpage covering how you might feel and what to do if your grandchild is diagnosed with cancer.

Raising Grandchildren: Health

This page from the AARP provides information and additional resources for caring for your grandchild’s health if you become the primary caregiver.

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Partners of a Chronically Ill Spouse

National Multiple Sclerosis Society: A Guide for Support Partners (PDF, 1.5 MB)

This toolkit from the National Multiple Sclerosis Society provides information on a wide variety of practical and emotional aspects of caregiving. While the guide focuses on specific MS-related challenges, much of the instruction included may be useful for any chronic illness care partner.

New Active Coping Strategies for Caregivers

This recorded webinar on caregiver coping strategies is led by Barbara Kivowitz, author of Love in the Time of Chronic Illness: How to Fight the Sickness—Not Each Other, and hosted by the Well Spouse Association.

Parkinson's Disease and Your Marriage: Advice from Our Community

The Michael J. Fox Foundation for Parkinson’s Research curated advice on keeping a marriage strong after a difficult diagnosis. The suggestions come directly from those within the Parkinson’s community who have experienced and worked to overcome the challenges the disease presents for spouses.

Well Spouse Support Group Locator

The Well Spouse Association, a nonprofit that advocates for and assists those caring for chronically ill or disabled spouses, offers a searchable database of support groups for spouses across the country.

A Husband, A Wife, & An Illness: Living Life Beyond Chronic Illness

Part memoir and part survival guide, this book was written by William July and Jamey Lacy July, a couple who face a severe chronic illness. Chapters include sections on action plans, questions to consider and journal ideas to help those with chronic illness and their partners to see how the authors’ narrative can help them understand their own struggles.

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Social Workers and Other Care Providers

Addressing Chronic Disease Through Community Health Workers (PDF, 1.2 MB)

Community health workers are people who serve in public health roles that are specific to their particular community. This guide from the CDC offers background knowledge on common chronic diseases and how CHWs can help address and prevent them.

Chronic Academy

The National Association of Chronic Disease Directors presents podcast-style audio lectures for care professionals to learn more about various aspects of chronic disease. They focus on the future of chronic care and explore new innovations in the field.

Supporting Parents with Chronic Illnesses

This nursing journal article details the effects of pediatric chronic illnesses on families and gives concrete suggestions for how nurses or other care providers can improve outcomes.

The Growing Crisis of Chronic Disease in the United States (PDF, 395 KB)

This two-page fact sheet compiled by the Partnership to Fight Chronic Disease includes basic information about chronic illness.

The Role of Social Work in Managing Chronic Illness Care (PDF, 394 KB)

Written by social work professors Grace Christ and Sadhna Diwan and presented by the Council on Social Work Education, this document contains detailed information on how social workers can serve those with chronic illnesses. It focuses on care coordination and psychosocial assessments, particularly for aging clients.

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Community Organizations and Employers

Creating Dementia Friendly Faith Communities (PDF, 204 KB)

UsAgainstAlzheimer’s, a nonprofit dedicated to ending Alzheimer’s, developed this two-page guide for faith organizations and clergy leaders to make their congregations more accessible for community members with dementia and their families.

Providing Breaks for Family Caregivers: A Toolkit for Volunteers and Faith (PDF, 956 KB)

The Alabama Lifespan Respite Resource Network developed a toolkit aimed at guiding faith-based organizations through the process of providing respite care to family caregivers in their community. It includes specific step-by-step plans for setting up respite care systems, as well as general tips for making communities more supportive for caregivers.

Supporting Caregivers in the Workplace: A Practical Guide for Employers (PDF, 1.8 MB)

Family caregiving is often demanding and time-consuming. This guide, created by Northeast Business Group on Health and the AARP, offers pragmatic guidelines for businesses seeking to support employees who are also caregivers. It includes background information on caregiving, quotes from health care experts and family caregivers and printable checklists and charts for employers.

The ADA: Questions and Answers

This fact sheet from U.S. Equal Employment Opportunity Commission features frequently asked questions about employers’ obligations under the Americans with Disabilities Act. Understanding these responsibilities can help businesses better support employees with chronic illnesses and their families.

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Educators and Schools

Diabetes Care Tasks at School: What Key Personnel Need to Know

Diabetes generally requires time-sensitive management of insulin and blood sugar levels; students with diabetes generally will need care during the school day. This training curriculum developed by the American Diabetes Association gives school personnel the information they need to keep students with diabetes safe.

Students with Chronic Illnesses: Guidance for Families, Schools, and Students (PDF, 335 KB)

The National Heart, Lung, and Blood Institute—a subgroup of the National Institutes of Health—offers a guide for everyone involved in a student’s education. The document is divided into sections listing the specific responsibilities of families, schools, districts and students in making sure a chronic illness does not stop the student from a successful education experience.

Toolkit to Help Educators Support Children of Parents with Serious Illness (PDF, 411 KB)

A parent’s diagnosis with a chronic illness is an extremely difficult experience for a student. This guide developed by Massachusetts General Hospital aims to give educators the information and skills they need to help their students through such an experience.

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