Resources for Families Coping with Illness

Now that we have looked at how illness impacts the family unit in a multitude of ways, we have seen how society contributes to and in some ways defines the way illness is experienced by sufferers and their families. Ultimately this raises the question, how does society also support these families during times of illness? There are, in fact, many resources out there for people to use depending on factors such as the type of illness, the role of the care-givers, and the age of the family member who is ill. Below are some examples of the sources available for families to draw upon throughout society.

For families dealing with all types of illness, individual and group/family therapy can be an extremely useful tool for strengthening the family unit by encouraging effective communication. This can be accessed through psychologist, psychiatrists, or therapists and counselors either in the hospital or private setting. Another resource for those suffering from a variety of illness is support groups. Today support groups come in a multitude of forms – some people even receive immense confirmation from online groups and forums dedicated to the issues they are struggling with. These groups can be accessed through hospitals such as MGH. The link below is to an MGH website that is a portal for families and sufferers to support groups organized by illness/issues.

http://www.mghsocialwork.org/support-groups.html

On this site, you can see that MGH has support groups from cancer, addiction, crohn’s and colitis, pain management, transplant, AIDS/HIV, Cardiac, Diabetes, Mental Health, Parenting, Bereavement, Caregivers, Development Disabilities, Neurological Disorders, and even Smoking Cessation. They also provide a referral phone line to call for those seeking support groups for different reasons. The Family Ties Program in Massachusetts in another example as it offers a parent-to-parent support group for those with kids struggling with disabilities. Below is a quote from a chronically ill patient regarding what her support group means to her:

“I found a support group back home. It meets two times a month at a local hospital. I find that being able to sit down with other people who deal with the exact things I do, really helps. I can’t keep it all inside. I know that saying, ‘You take it out on your gut.’ Well, I already have gut problems, so if I keep my feelings inside, it will only make things worse. In a support group I don’t feel self-conscious when I talk about my illness, because these people understand.” (“Patient Education”)

There are other unique services for people to take advantage of that help with actual care-giving tasks, such as the Road to Recovery Program through the American Cancer Society. Road to Recovery offers transportation for cancer patients to and from treatment appointments. In Massachusetts, the Caritas Home Care program offers Clinical Services provided by professionals such as RNs, Therapists or Social Workers who can cover things such as wound care, IV therapy, or disease management. These services are covered by most insurance plans and Medicare. They also offer Private Pay Services which can cover anything from household chores to medication reminders, or even grooming and bathing.


Another huge medium for support is education. In order to feel empowered and able to understand your own illness or feel capable of caring for someone else’s, people need to be educated on what the disease is and how to tend to it. The American Cancer Society has a wide range of services that fall in the educational realm, including their I Can Cope interactive online education program about cancer and dealing with it. They also put out a Magazine/Catalog called “Tender Love Care” which has a variety of articles focused on supporting women struggling with breast cancer. The NC Association for the Education of Chronically Ill Children is example of a web-based organization that provides links to all types of information from that regarding specific illness to how to advocate for children with chronic illnesses in schools. They also run conferences and give scholarships to children suffering illnesses.

Finally, going back to the specific illnesses we looked at, there are also a variety of services (including some mentioned above) to support those dealing with mental or terminal illness in the family. A few examples of special support systems for these circumstances include The National Alliance on Mental Illness which is a huge resource that offers everything from education to links to resources in your community. They have several locations in MA, including one in Cambridge/Middlesex. Another recommendation for dealing with stigmas and the emotional struggles of mental illness is to join an advocacy group! NAMI is an organization that offers people the chance to partake in various social policy and advocacy bills and initiatives. Directgov is a website that provides information on how to access benefits such Carer’s Allowance for those suffering from or caring for someone with terminal illness. This is a really important resource to make sure everyone knows what they are entitled to from our society itself (ie our government and social support networks). And in addition, support groups and education as listed above are both pivotal for those dealing with mental or terminal illness in the family.

Ultimately, our society is an influence on the illness experience for families in a supportive way as well. They are a large number of resources out there for people to draw upon. However, when looking deeper in to how society supports families, the question must be raised regarding how accessible these are for people of all races, ethnicities, and socioeconomic statuses? For instance, the Private Pay Services listed above might be really necessary for a family who can not afford to pay anything outside of their insurance. Or, what about those who do not have insurance to begin with? Who do they turn to? It is known that those of lower SES and without insurance fair worse when dealing with illnesses like these, and I think it is important to realize that a lack of access to help and support is large reason why! Therefore, while mediums like the internet have made group networking and educational resources more available to all, there is still much work to be done for our society to be a true support for all families dealing with illness.

Questions to think about…
1) Has there ever been a time when you or a friend or relative has drawn upon one of these or a similar resource? Did you (or he or she) find it helpful? Why or why not?
2) Have you ever known anyone in need of resources like these that were unable to access them? How did that make you feel?
3) What do you think we can as part of society to help make these resources more available to all people?


“Parent to Parent Program”
http://massfamilyties.org/p2p/p2p.php

“In My Community: Day to Day”
http://www.cancer.org/docroot/COM/content/div_NE/COM_5_2x_Day_to_Day.asp?sitearea=COM

“Patient Education: Coping with Chronic Illness”
http://www.cc.nih.gov/ccc/patient_education/pepubs/copechron.pdf

“Caritas Home Care: Programs and Services”
http://www.caritashomecare.org/OPage.asp?PageID=OTH000051

“NCAECIC: Working for the Benefit of Student with Health Challenges”
http://www.ncaecic.org/Chronic-Illness-and-School-Information.php

“Directgov: Caring for Someone Who Is Terminally Ill”
http://www.direct.gov.uk/en/CaringForSomeone/DG_10035718