Psychologists as Researchers
Psychologists have played a leading role in the development of the burgeoning field of family caregiver research since the 1970s. That research has focused on two prime areas:
- Assessing the psychological and physical health consequences to family members of short- and long-term caregiving with loved ones with different illnesses and disabilities (e.g., Alzheimer’s dementia, breast cancer, developmental disabilities). Such research also often pays attention to the roles caregivers play in families of different configurations (e.g., spousal caregiving, caregiving in grandparent-run households ) within myriad cultural and community contexts (e.g., Latino caregiving, rural caregiving).
- Devising relevant, accessible, cost-efficient interventions to help family members better cope with the rigors of caregiving under a wide range of circumstances (e.g., aging parents with early-stage dementia, adolescents with autism spectrum disorders, end-of-life care)
This psychological research occurs under many different auspices. Many researchers in this field receive grants from governmental agencies to assess the efficacy of specific caregiver interventions with particular sub-populations. Others depend on monies from disease-specific organizations and advocacy groups interested in improving clinical outcomes for specific patient groups through enhanced family support. Yet others have received grants from family caregiver support organizations and private foundations (e.g., Langeloth Foundation) for which improving family caregiver wellness more generally is a key objective of their missions.
Psychologists publish the results of their studies in peer-reviewed journals intended for psychologists, other healthcare professionals, administrators and policy-makers. They also make their results available in comprehensible language directly to family caregivers themselves through articles in such media outlets as caregiver websites, caregiver magazines and the general press.
“Research on family caregiving, has advanced how we study and treat chronic disease,” says developmental psychologist Joseph E. Gaugler, PhD, an associate professor in the School of Nursing of the University of Minnesota and one of this country’s leading young researchers in the family caregiving field.
Gaugler has played an instrumental role, especially when it involves helping family caregivers manage the logistics and typical emotional reactions associated with placing their loved ones into long-term care facilities. His edited 2005 book, "Promoting Family Involvement in Long-Term Care Settings: A Guide to Programs that Work," provides an overview of research on family caregivers and nursing homes and then profiles 9 existing psychosocial programs for helping family members better cope with caregiver burden and the sometimes frustrating experience of communicating and partnering with long-term care staff members. In a 2008 article in The Journal of American Geriatrics Society, he evaluated the effectiveness of the New York University (NYU) Caregiver Intervention in helping spousal caregivers of relatives with Alzheimer’s disease emotionally and psychologically adapt to nursing home placement. In a 2013 article in The Gerontologist, he and Mary Mittelman demonstrated how an adaptation of the NYU Caregiver Intervention for adult children helped to delay residential care placement of parents with dementia.
Gaugler was first introduced to the caregiving field while doing volunteer work as an undergraduate at Gustavus Adolphus College in the town of St. Peter in his native Minnesota. He regularly played cards and had conversations with older people in a senior apartment complex. Later, he completed an internship with a group of geriatric social workers for which he visited Alzheimer’s patients in their homes, learning first-hand about the dedication but also emotional duress of wives caring for their demented husbands. He decided to make helping such family caregivers his life’s work.
He went on to receive his doctorate in Human Development and Family Studies from Penn State University under the tutelage of geropsychology pioneer and early family caregiver proponent Steven H. Zarit, PhD. He then completed a post-doctoral fellowship with renowned long-term care expert Robert Kane, PhD, in the School of Public Policy at the University of Minnesota. After a 5-year stint as a faculty member at the University of Kentucky, he returned to the University of Minnesota to a full-time academic research position.
Gaugler cites four foci for his current research: Alzheimer’s disease and long-term care; the longitudinal implications for chronically disabled adults; the effectiveness of psychosocial and community-based services for caregiving families; and mixed and longitudinal methods. In addition to publishing articles with Zarit and Kane, he has collaborated with other leading family caregiver researchers, including William E. Haley, PhD, Mary Mittelman, DPH, and David L. Roth, PhD. He sees ample opportunities for psychologists to get involved in the family caregiving field. “The trajectory of a family caregiver’s career generally takes them through several transitions,” he says, “Psychologists can help caregivers navigate these transitions (for instance, helping them deal with the emotions surrounding placing their loved one in long-term care) by building in coping skills and enhancing their social support. They can also utilize their theoretical and methodological skills to help area agencies on aging and other organizations develop effective assessment instruments, evaluate existing programs for clients, and facilitate the translation of evidence-based interventions to reach more families in need.”
Gaugler, J. E., Reese, M., & Mittelman, M. S. (2013). Effects of the NYU Caregiver Intervention-Adult Child on residential care placement. The Gerontologist, 53, 985-987. http://www.ncbi.nlm.nih.gov/pubmed/23339050
Gaugler, J. E., Yu, F., Krichbaum, K., & Wyman, J.F. (2009). Predictors of nursing home admission for persons with dementia. Medical Care, 47, 191-8.http://www.ncbi.nlm.nih.gov/pubmed/19169120
Gaugler, J. E., Roth, D. L., Haley, W. E., & Mittelman, M. S. (2008). Can counseling and support reduce Alzheimer’s caregivers’ burden and depressive symptoms during the transition to institutionalization? Results from the NYU Caregiver Intervention study. Journal of the American Geriatrics Society, 56, 421-428. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700042/
“In my research, I’ve found that the siblings of children with disabilities or chronic illnesses are affected by the caregiving they do in both positive and negative ways,” says Debra J. Lobato, PhD, “I’ve also seen how culture shapes their caregiving roles.”
A professor in the department of psychiatry and human behavior at the Alpert Medical School of Brown University and the director of child psychology for Rhode Island Hospital and Hasbro Children’s Hospital in Providence, RI, Lobato has drawn on a lifetime’s experience to inspire her decades of research. While growing up in and around New York City in a Latino family in which there was a child with a disability, she was sensitized early on to the dynamics of culture, family and medical issues. In high school, she did volunteer work with kids with special needs. During her years as a graduate psychology student at the University of Massachusetts in the late-1970s, she worked in a home-based early intervention program. “I saw that family wasn’t just the parents but also the other kids,” she says. “I became interested in the family as a whole.”
Her subsequent research studies over the years since, documented in a book and over 30 journal articles and book chapters, have found that siblings of children with any form of disability or chronic illness develop protective feelings toward their affected brother and sister and have more positive, less aggressive sibling relationships than same-age peers who are not in caregiving families. But she also found that these siblings tend to receive less maternal attention and more direct criticism than the disabled or ill children. They also have more symptoms of depression and anxiety than siblings of typical children. According to Lobato, there are many factors that can contribute to this, such as siblings’ limited access to information about the child’s condition, concerns about the child’s health and future, parent distress and differential treatment, and increased sibling responsibility.
In response to these findings, she developed an intervention for children as young as four-and-a-half years old to teach them about the particular disability or illness impacting their brother or sister and to provide them with group support. (That intervention developed into “SibLink,” a clinical service offered through the Hasbro Children’s Hospital.) She has demonstrated that this intervention increases the siblings’ knowledge of the diagnoses, helps them feel less isolated, and decreases their propensity to become depressed and anxious.
More recently, Lobato has gauged the impact of culture on young sibling caregiving by studying Latino families in which a child has developmental delay or a chronic illness, such as asthma. She has found that, within Latino culture, there is a strong expectation for siblings to take care of one another and that these children don’t complain about these responsibilities. However, these siblings are vulnerable to depression and anxiety, including separation anxiety. Lobato believes this may be due to the fact that siblings often feel torn between their family responsibilities and their interests in pursuing the typical childhood activities of mainstream America.
“It is important for psychologists to know that everyone in the family is affected by the disability or illness of a child,” she says. “We should be helping parents explain the disability or illness to the siblings and to better think through what are appropriate caregiving roles for these well children to play.”
“With the increasing numbers of children diagnosed with autism spectrum disorders in recent years, we know there’ll be many more families in the future providing care to adolescents and adults with these conditions,” says developmental and clinical psychologist Gael I. Orsmond, PhD. “As a consequence, more psychologists are going to be treating individuals with autism and their family caregivers in the years ahead.”
An associate professor in the department of occupational therapy at Boston University, Orsmond is one of the country’s top young researchers on family caregivers of adults with autism. From 2000-2012, she was co-investigator on a large longitudinal study (spearheaded by Marsha Mailick, PhD, of the University of Wisconsin), conducting extensive interviews every 18 months with relatives from 400 Wisconsin and Massachusetts families of individuals with autism. With each round of interviews, she and her collaborators learned more about the impact of such caregiving on maternal and sibling well-being, as well as families’ capacities to plan for the eventual transfer of caregiving responsibility from aging parents to siblings.
In the families in the study (in which the average age of the family member with autism was about 32 in 2010), the primary caregivers are generally the mothers. About one-third of them have clinical levels of depressive symptoms, according to Orsmond, largely because of the strain of dealing with the interfering and disruptive behaviors of their sons or daughters with autism. Fortunately, those behavioral problems seem to wane as the individuals with autism age and as family members gain skills and a sense of mastery over time.
As part of the study, she has also explored other aspects of families and autism, including the degree to which parents of autistic children shield the siblings from the onus of caregiving. “In about 10 of the families we’ve studied,“ says Orsmond, “both parents are no longer able to provide care, due to either death or illness. In almost all of those cases, it was the siblings who took over caregiving responsibility. In some families, the parents hadn’t prepared them over the years for assuming that caregiver role and that made the transition more challenging.”
She was drawn to doing this kind of research through a number of experiences providing direct clinical services as an undergraduate at Carleton College and a graduate student at University of Illinois at Chicago. During the latter, she worked as a clinician on a multi-disciplinary team doing diagnostic assessments, running support groups and doing in-home behavior management consultation. She says she realized that she wanted to study families coping with disabilities and medical problems and therefore decided to do a post-doctoral research fellowship at the University of Wisconsin. While there, she became aware that very little research had yet been done on families and adults with autism.
She encourages psychologists to include family members in treatments for adolescents and adults with autism. “Try to talk with parents,“ she advises, “about the transfer of caregiving responsibility after they are no longer able to take care of their loved ones. Talk with the other children about their willingness and readiness to take over different caregiving roles.”