Care for the chronically ill or disabled has always resided in the family. But Western societies increasingly recognize that the role may not come naturally.
The Pew Research Center has reported that one in eight Americans between the ages of 40 and 60 is now caring for a parent at home. Others tend children with chronic illness. Strengthening the family will help the patient over time. For many, the burden can often seem overwhelming. Three CNHP researchers have focused their research on families coping with illness or disability of a family member.
Contemporary families often lack knowledge about a relative’s medical condition, don’t know how to communicate with the healthcare system, and need help finding community resources such as respite care.
Dr. Elizabeth Gonzalez’s (Nursing) NIH-funded study examines the effects of an intervention designed to enhance the resourcefulness of people caring for relatives with Alzheimer’s disease.
Dr. Maureen Davey (Couple and Family Therapy), with funding from the Barra Foundation, is working to develop, adapt, and pilot a culturally sensitive, family-based intervention for African- American families with school-age children and a mother, father, or caregiver diagnosed with cancer.
Dr. Lisa Chiarello (Physical Therapy and Rehabilitation Sciences) works with an NIDRR-funded research team seeking to identify a combination of child, family, and service factors that promote motor abilities, self care and play in young children with cerebral palsy.
CNHP Associate Dean for research Dr. Rita C. Naremore recently asked these researchers to reflect on their search for interventions that help both the patient and the family as a whole.
When we think of intervention for a disability or a chronic illness, we immediately think of the interaction between the healthcare providers and the patient. How does the family fit into this picture?
Chiarello: In pediatrics, family-centered care is based on the philosophy that the family plays the central role in the life of a child. We look to form a partnership with the family, with the primary goal of enhancing the child’s health, development and function.
Successful pediatric Rehabilitation requires that you provide holistic care for the entire family, not just the child. So we keep sight of the secondary goal, promoting quality of life for the family, and we take a strength-based approach to provide information, resources and supports for the family.
Davey: Lisa’s perspective is right in line with our interventions. When you involve the family, everyone has a common core of knowledge about what has happened, what’s likely to happen, and what can help improve patient outcomes. That way each family member becomes aware of everyone else’s needs, fears, and concerns. It’s particularly important for ethnic racial minority families who live in socioeconomically disenfranchised communities. They often face barriers in engagement and access to services.
It’s easy to pick up the common thread here—strengthening the family will help the patient over time. Beth, do you see this in your work?
Gonzalez: Yes. [Family] caregivers take on huge responsibilities and often with no preparation, or minimal preparation. They don’t understand care giving, their role, or the health problems their loved ones are dealing with.
The more help we can give them, the better the outcomes will be for them and the people in their care— whether they’re children or elders. RN How do you expect your research to be translated into everyday practice? Davey Short-term, my results are giving healthcare providers more family-based and culturally sensitive ways to benefit both patient and family well-being in historically underserved populations. In the long term, I want to find ways to improve patient-provider communication. RN What do you think might be the best way to get at this?
Davey: I’m now working with a team of physicians and family therapists to develop a culturally sensitive, family- based perspective and integrate it into the training curriculum of health care providers. We need to ensure that [the procedures] become institutionalized.
Lisa, are you looking at how this affects PTs as well as families?
Chiarello: Certainly. Our results should help healthcare professionals and educators in providing evidence based interventions, support families, and optimize community resources. The relationships between children with cerebral palsy, their families, and their environments are all determinants of outcomes. We can make better decisions about methods of service delivery and intervention options when we understand the interactions going on here. And I think our findings will encourage therapists to broaden the focus of rehabilitation services for young children with CP. Right now people focus on acquisition of developmental milestones. We have to think more about supporting family needs, and we have to make it easier to build child participation into their everyday routines and activities.
Gonzalez: Anything we do to enhance caregivers’ resourceful skills will help the people they’re caring for. It will help if family caregivers learn when to take a more active role in care and when to step back. People need to know how they can do that and still provide care in a way that’s meaningful to the person they’re caring for. My aim is to create an intervention that accomplishes that.
What I’m hearing from all of you is that healthcare providers we must recognize that the patient exists within a family, and that the best interventions are based on a combination of what medicine can offer and what a strong, resourceful family can offer. That doesn’t mean we have to see the family as “patients.” But they deserve better support and attention as they take on the role of caregivers.