Cleveland G. Shields, PhD is a faculty member of the Human Development and Family Studies (HDFS) Department, Marriage and Family Therapy Program, at Purdue University; Michelle A. Finley, MMFT and Neelu Chawla, MS are both doctoral students in marriage and family therapy in the HDFS Department.
Couple and Family Interventions in Health Problems
Article first published online: 27 JAN 2012
© 2012 American Association for Marriage and Family Therapy
Journal of Marital and Family Therapy
Volume 38, Issue 1, pages 265–280, January 2012
How to Cite
Shields, C. G., Finley, M. A., Chawla, N. and Meadors, w. P. (2012), Couple and Family Interventions in Health Problems. Journal of Marital and Family Therapy, 38: 265–280. doi: 10.1111/j.1752-0606.2011.00269.x
- Issue published online: 27 JAN 2012
- Article first published online: 27 JAN 2012
- Top of page
- Neurological Diseases
- Cardiovascular Disease
- A Clinician Responds
Intervention research for couples and families managing chronic health problems is in an early developmental stage. We reviewed randomized clinical trials of family interventions for common neurological diseases, cardiovascular diseases, cancer, and diabetes, which is similar to the content of previous reviews discussed later. One overriding theme of these studies is that patients with chronic illnesses and their families face a variety of challenges to which researchers have responded with an array of treatment modalities. Very few of the interventions reviewed, with the exception of treatment for adolescents with diabetes, tested family psychotherapy models. Most interventions were time-limited therapeutic interventions that trained families to improve their communication and problem-solving skills, individual and family coping skills, and medical management. Researchers more clearly described mechanisms of change in intervention studies with cancer and diabetes than with other diseases, and not surprisingly, they found greater empirical support for their interventions. Family interventions show promise to help patients and family members manage chronic illnesses. To develop an empirical base for family approaches to managing chronic illnesses, interventions must be based on theories that delineate mechanisms of change in family processes and skills in medical management necessary to maintain patients’ and family members’ health.
Medicine is no longer focused solely on the treatment for acute illnesses but has shifted its focus to the management of chronic illnesses that require ongoing medical care (Coleman, Austin, Brach, & Wagner, 2009). Shorter hospital stays, fragmented clinical settings, and transient healthcare providers have led to increased caregiving responsibilities for families. Although families have been considered “informal caregivers” in healthcare settings, they are often the only people who have experienced the entire trajectory of their family member’s illness (Levine, Halper, Peist, & Gould, 2010). More formal inclusion of family caregivers in the management of patients’ chronic and long-term care has potential to improve treatment and medication adherence, ensure consistent and timely physician visits, reduce reliance on emergency room care, and promote health behaviors (Glasgow, Orleans, Wagner, Curry, & Solberg, 2001; Von Korff, Gruman, Schaefer, Curry, & Wagner, 1997; Wagner, Austin, & Von Korff, 1996). Depending on the nature of the illness and the life stage of the patient, interventions may be directed toward the patients with family members as supportive others or may be directed toward the caregivers who must help a child or an elderly relative manage an illness. We review randomized clinical trials (RCTs) of family interventions for chronic illnesses aimed at helping families to learn in-home caregiving tasks, improve planned collaboration with healthcare providers, and increase family collaboration for illness management.
Most of the interventions we review, with the exception of family therapy for distressed families with a child with type I diabetes, are psychoeducational interventions not psychotherapy per se. Four characteristics we found that distinguish psychotherapy from psychoeducation interventions focus on the content, structure, delivery modality, and deliverer of the intervention. Psychoeducational interventions typically include support, education, and skills training. They are often time limited although some provide ongoing support. Bachelors and masters-level healthcare personnel, not trained psychotherapists, often deliver these interventions keeping costs low. Frequently, interventions are delivered in group formats in primary or specialty care settings or with a combination of in-home visits, telephone calls, and videoconferencing.
We review RCTs of family interventions for common neurological diseases, cardiovascular diseases (CVDs), cancer, and diabetes, which is similar to the content of previous reviews discussed later. We excluded family interventions in HIV and dementia because comprehensive reviews have recently been published on each (Burton, Darbes, & Operario, 2010; Donenberg, Paikoff, & Pequegnat, 2006; Reisner & Mimiaga, 2009). We reviewed only RCTs and excluded under-powered pilot studies even if they were randomized. We did not review descriptions of medical family therapy approaches or theories, unless their efficacy or effectiveness was tested in an RCT. Each section begins with information about the disease followed by a review of the approaches and outcomes of family or couple interventions for that illness. We had a particular interest in describing the potential for uptake or dissemination of these interventions within primary and specialty medical care settings.
A contention of this paper is that marriage and family therapists (MFTs) do not have to be the provider of every family-based intervention. Instead, MFTs can take the lead in developing small but powerful interventions that can be integrated into medical settings to improve treatment for patients, spouses, and family members. MFTs can supervise family-based interventions delivered by other healthcare professionals, while providing intensive treatment to highly distressed families through individual family or couple therapy or by providing family group psychoeducation.
One overriding theme of these studies is that patients with chronic illnesses and their families face a variety of challenges that researchers have responded with an array of treatment modalities. We conducted searches of numerous electronic databases for studies published from January 2002 through the end of May 2010. We chose January 2002 because this is where two previous reviews left off (Campbell, 2003; Martire, Lustig, Schulz, Miller, & Helgeson, 2004). All searches were limited to peer-reviewed, English language journals in evidence-based medicine and social science databases. We used combinations of the following phrases for our searches: (a) name of the disease; (b) randomized, RCT, or random; (c) patient or client; (d) family, caregiver, caregiving, marriage, marital, spouse, spousal, couple, or partner; and (d) intervention, treatment, therapy, or education.
- Top of page
- Neurological Diseases
- Cardiovascular Disease
- A Clinician Responds
There are more than 600 neurological disorders, and 50 million people in the United States (one in five) are affected (NINDS, 2009). These diseases can impose a burden on both patients and family members (Modi, 2009; Rivera, Elliott, Berry, Grant, & Oswald, 2007; Rodgers et al., 2007). We review psychosocial interventions that involve family members for the most common disorders: Brain and spinal cord injury (SCI), epilepsy, and stroke.
Traumatic Brain Injury
A traumatic brain injury (TBI) is brain damage that irreversibly disrupts life. A TBI is caused by events such as traffic, sports, or industrial accidents where an external force affects the skull and the brain. Families in which one member has a TBI can experience a great deal of stress (Hall et al., 1994). Patients with a TBI tend to be more self-involved, child-like and may undergo a personality change (Gillen, Tennen, Affleck, & Steinpreis, 1998). Spouses often assume the majority of parenting responsibilities and become the primary income providers (Blais & Boisvert, 2005). In addition, embarrassment about brain-injured patients’ behavior, particularly aversive behaviors in public settings (Miller, 1993), may socially isolate the family.
Four studies suggest that patients with TBI and their family caregivers may benefit from family-oriented interventions. A telephone-based intervention (n = 85), compared to standard care (SC; n = 86), found that the patients aged 16 years and older receiving telephone intervention showed improvement in cognitive awareness, interpersonal adaptability, and perceived quality of life and satisfaction (Bell et al., 2005). In-home (n = 34) compared with clinic-based rehabilitation (n = 38) for children between 5 and 12 years old with TBI found significant improvements in both cognitive and physical functioning (Braga, da Paz Júnior, & Ylvisaker, 2005). Family caregivers of adult patients who received problem-solving training (PST; n = 33) compared with an education attention control (n = 34; D’Zurilla & Nezu, 2007; Rivera, Elliott, Berry, & Grant, 2008) reported significant reductions in depressive symptoms, health complaints, and dysfunctional problem-solving styles but no changes in caregiver well-being and burden. Parents caring for children aged 5–16 participated in online family problem-solving therapy (FPS; n = 20) compared with an Internet resources comparison group (IRC; n = 20) reported improved child functioning and reduced parental anxiety, depression, and distress following pediatric TBI (Wade, Carey, & Wolfe, 2006; Wade, Walz, Carey, & Williams, 2008). Older children and lower SES families benefited the most from the intervention. These studies suggest that the involvement of family members in patient care and rehabilitation may benefit patients and that interventions for caregivers may improve their functioning. However, the evidence is preliminary. Each of these studies was carried out with samples representing different populations. No additional studies of these interventions with broader populations have been published. Studies did not test mechanism of change or control carefully for positive effects that might results from increased family involvement regardless of intervention activity in which family members were involved.
Three main types of strokes are ischemic, intracerebral hemorrhage, and subarachnoid hemorrhage. Almost 88% of strokes are ischemic and caused by a blood clot or blockage within an artery leading to the brain. An intracerebral hemorrhage is caused by the sudden rupture of an artery within the brain typically because of high blood pressure. A subarachnoid hemorrhage is also caused by a sudden rupture of an artery. However, it differs from an intracerebral hemorrhage in that the location of the rupture leads to blood filling the space surrounding the brain rather than inside the brain. In the United States, the prevalence of stroke ranges from 1.5% of the population in Connecticut to 4.3% in Mississippi (Rosamond et al., 2007). Spouses of patients with stroke experience caregiver burden that increases depression and decreases life satisfaction during acute and long-term care (Visser-Meily, Post, van de Port, van Heugten, & Bos, 2008). A high level of family support during stroke recovery is associated with greater improvements in functional and psychosocial outcomes in patients (Tsouna-Hadjis, Vemmos, Zakopoulos, & Stamatelopoulos, 2000).
Family-oriented interventions targeted education and support but found only mixed evidence that these inventions led to improvements in patients or caregivers’ functioning. A 16-session, exercise, and education group for stroke survivors and family caregivers (n = 119) compared with SC (n = 124) resulted higher physical functioning at 9 weeks and 1-year follow-up (Harrington et al., 2010). Cognitively intact patients in a home-based intervention of up to 16 one-hour patient–caregiver sessions, compared to usual care, reported no significant differences in depression, social support, or self-efficacy (Glass et al., 2004). No differences were found in quality of life, well-being, or health status in a study that compared usual care (n = 50) versus nurse-led 12 session support intervention (n = 50; Larson et al., 2005). No differences were found in patient emotional or physician functioning in a trial comparing a family organizer intervention (n = 126) for hospitalized patients and their families to SC (n = 124; Lincoln, Francis, Lilley, Sharma, & Summerfield, 2003). A six-session nurse-led support and education program for spouses of patients with stroke (n = 50; Franzén-Dahlin, Larson, Murray, Wredling, & Billing, 2008) compared with SC resulted in no differences in mood, sleep, appetite, and physical discomfort. Caregivers participating in group support intervention (n = 44), consisting of eight 2-hr sessions attended by 8–12 caregivers, reported greater increases in informational and emotional support, compared with home visits (n = 83), consisting of four 2-hr sessions (Schure et al., 2006). An educational intervention for patients with stroke and caregivers (n = 69) compared with SC (n = 64) found no difference in stroke knowledge, but patients reported reductions in anxiety (Smith, Forster, & Young, 2004). Of these seven RCTs, only two found positive changes in patient or caregiver functioning. These interventions may not have produced consistent results because they were not theory driven and did not target-specific mechanisms to bring about change, and samples were not necessarily at risk of poor outcome.
Spinal Cord Injury
Approximately 12,000 new cases of Spinal Cord Injury (SCI) occur each year. Motor vehicle crashes are the most common cause of SCI cases at 42%, followed by falls, acts of violence, and recreational sporting activities (“Spinal Cord Injury: Facts and Figures at a Glance,” 2008). Patients with SCI experience numerous problems including chronic and severe pain, musculoskeletal pain, and feelings of burning and pain from stimuli that do not normally cause pain (Molton et al., 2009). Caregivers report greater distress and diminished quality of life compared with family members not in a caregiving role (Lucke, Coccia, Goode, & Lucke, 2004). Observational research has found that caregivers experience symptoms such as stress, burnout, fatigue, anger, resentment, and depression (Schulz et al., 2009).
Three recent RCTs found preliminary evidence that family involvement in interventions for patients with SCI may benefit caregivers and patients. For example, caregivers assigned (n = 29) to a videoconferencing PST (D’Zurilla & Nezu, 2007) intervention delivered over 12 months compared with an education-only control group (n = 32; Elliott, Brossart, Berry, & Fine, 2008) reported significantly less depression and patients reported an increase in social functioning. In a similar study of a three-session PST intervention delivered face-to-face (n = 30) compared with a usual care condition (n = 30), caregivers reported no improvement in depressive symptoms but they did report less impulsivity and avoidance in response to stress (Elliott & Berry, 2009). Finally, an intervention-targeting knowledge and social support were delivered through three different modalities: Caregiver-only condition, a patient and caregiver condition, and an information-only control (Schulz et al., 2009). Caregiver depression, burden, and health symptoms improved at 12-month follow-up in the patient and caregiver condition compared with the caregiver-only condition. Caregiver burden and health symptoms improved more in the dual-target condition compared with the control condition. While promising, more research is needed to indentify mechanisms of change, when and how to include both patients and caregivers in interventions and what intervention dosage is needed to improve functioning.
- Top of page
- Neurological Diseases
- Cardiovascular Disease
- A Clinician Responds
Cardiovascular disease causes one of every 2.9 deaths in the United States with the highest rates among African American men, followed by Caucasian men, African American women, and Caucasian women (Lloyd-Jones et al., 2009). CVD is not a singular chronic medical condition, but encompasses a broad spectrum of diseases such as coronary heart disease (e.g., myocardial infarction, angina pectoris), high blood pressure, cardiac arrest, and ischemic heart disease. Physicians usually recommend dietary changes, exercise, medication, and other changes for people with CVD. These changes often affect family members too. Nearly two-thirds of people survive cardiac events. Survivors, who experience high levels of psychological distress, may be at higher risk of mortality from another cardiac event (Lett, Ali, & Whooley, 2008; van Zyl et al., 2009). Patients with CVD often develop depression, but less is known about the impact of CVD on family members (Broadbent, Ellis, Thomas, Gamble, & Petrie, 2009). Some studies have found that patients have poor adjustment when their spouses report greater anxiety and depression.
Family intervention in CVD is in its infancy, and the few studies we found were inconclusive. An intervention delivered by a health psychologist to change patient and spouse perceptions of CVD, compared with standard hospital care (Broadbent et al., 2009), succeeded in producing more positive illness perceptions and fewer concerns about the patient’s recovery in spouses. However, at 6 months postintervention, there were no longer significant differences in illness perceptions between intervention and control group spouses. A study comparing nurse-led Patient-Centered Advance Care Planning (PC-ACP) with usual care found that anxiety level did not differ significantly between groups nor did either group have significantly more knowledge about advance care directives. However, PC-ACP patient–family dyads reported lower decisional conflict than control dyads, suggesting that intervention dyads were more informed about patient desires (Song, Kirchoff, Douglas, Ward, & Hammes, 2005). Family members of hospitalized patients with CVD randomized to receive regular visits with a masters-level health educator to discuss their CVD risks versus those receiving a report about CVD risk factors did not report changes in “bad” cholesterol (LDL), but the control group reported decreases in “good” cholesterol (HDL; Aggarwal, Liao, & Mosca, 2010; Mosca et al., 2008). Both groups reported increases in weight and blood pressure, which the authors suggested may indicate that the interventions were too modest to produce the desired result. Much work remains to be done. These studies did not produce changes in their primary outcomes. Future family-based CVD interventions need to be derived from theory and given in a high enough dosage to produce change.
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- Neurological Diseases
- Cardiovascular Disease
- A Clinician Responds
Cancer is a disease of uncontrolled cell growth that can occur in multiple regions of the body. External (tobacco use, radiation, and infections) and internal factors (genetics, hormones, and mutations) can cause cancer, and both factors often work in concert. Over 1.5 million people were diagnosed with cancer in 2008 (Jemal et al., 2009). A diagnosis of cancer is associated with increased psychological distress for patients and family members (Bowman, Rose, & Deimling, 2006; Nijboer et al., 1998). Among cancer patients with a high likelihood of survival, cancer poses psychological stressors owing to worsened physical condition, negative treatment side effects, and the uncertainty about the course of the illness (Kuijer, Buunk, de Jong, Ybema, & Sanderman, 2004). Each type of cancer presents a different challenge to patients and their families. In this section, we describe research studies that have tested family-based interventions for adult cancers targeting both couples and family caregivers. We later review interventions for childhood cancers targeting parents and children.
Cancer Interventions Including Both Partners or for Partners only
Interventions targeted feelings of inequity, hopelessness, coping and problem-solving skills, illness appraisal, and disease and pain management. Slightly more than half of the studies we found produced positive results for couple or spouse interventions versus individual interventions. While the results were somewhat promising, each of these interventions was a one-off study, so we do not know whether the results generalize beyond the interventions developers or to other populations. Finally, intervention effects on partner outcomes were not consistently reported.
Five studies found positive results for couples or partner-only treatments. A nurse-led intervention for couples coping with breast or prostate cancer (Northouse, Kershaw, Mood, & Schafenacker, 2005; Northouse et al., 2007) resulted in less hopelessness, less negativity, less uncertainty, and increased couple communication for both partners. Women with breast or gynecological cancer who received a coping intervention with their partners, compared to receiving the coping intervention alone, reported significant reductions in psychological distress and avoidance, significant increases in positive sexual self-schemas, and significant increases in positive communication with their partners (Scott, Halford, & Ward, 2004). Women treated with mastectomies and their partners who received a brief psychosocial intervention, which included elements of exposure treatment for trauma, reported significantly lower depression, greater relationship satisfaction, attractiveness, improved body image, and increased frequency in initiating sex and achieving orgasm (Kalaitzi et al., 2007). Partners of patients with cancer who participated in five biweekly 90-min sessions of cognitive behavioral therapy, compared with wait-list control reported significant decreases in feelings of inequity and reported greater satisfaction with their relationship (Kuijer et al., 2004). Finally, a six-week intervention for wives of men with prostate cancer, compared to usual care, found that wives in the intervention group reported significantly higher positive reappraisal and lower denial about their partners’ prostate cancer compared with control wives, and they also reported greater posttraumatic growth (cancer as a growing experience) than wives in the control group (Manne, Babb, Pinover, Horwitz, & Ebbert, 2004).
Four studies found no group differences between couple and individual interventions. Problem-solving therapy, delivered to the patient only or to the couple, produced significantly reduced distress and increased problem-solving skills compared with no-treatment control participants (D’Zurilla & Nezu, 2007; Nezu, Nezu, Felgoise, McClure, & Houts, 2003). A psychoeducational nurse intervention that taught patients and caregivers to manage patients’ medical symptoms, compared to treatment as usual (TAU), found that patient depressive symptoms declined in both groups, but no significant differences between groups were detected, possibly due to floor effects (Kurtz, Kurtz, Given, & Given, 2005). Patients with breast cancer who received telephone counseling, video coping education, or disease management with their partners reported improvements in social and vocational adjustment, but there were no significant group differences except that patients in the disease management group reported poorer psychological adjustment (Budin et al., 2008). An intervention designed to reduce cognitive barriers to pain management provided to patients individually and to patient–caregiver dyads, compared with TAU, found that patients in both intervention groups reported fewer attitudinal barriers (e.g., negative beliefs about reporting pain) but found no significant differences between the dyad intervention and the patient-only groups in pain control (Ward et al., 2009).
Promising studies need to be repeated with broader samples and by other research teams. In addition, more attention needs to be paid to possible mediators and moderators of treatment effects. It is important to recruit participants who are sufficiently distressed to detect change, because low distressed participants will create floor effects making it difficult to determine treatment effects. It is also possible that certain problems do not derive additional benefit from partner involvement. To examine the effects of couple treatments, it is important to select problems that are likely to benefit from couple approaches.
Family Hospice and Bereavement Interventions
The interventions discussed so far focused on early or ongoing stages of cancer recovery. Interventions at the end of life can also be helpful for both patients and their partners. We know that caregivers of patients in hospice experience high levels of distress (Haley, LaMonde, Han, Narramoer, & Schonwetter, 2001) and that patients sometimes experience uncontrolled pain (Goudas, Bloch, Gialeli-Goudas, Lau, & Carr, 2005). A three-session, in-home intervention plus hospice care compared with hospice alone resulted in significant improvements in caregivers’ self-efficacy for managing patient pain and other symptoms; however, patients did not report improvements in pain control or quality of life (Keefe et al., 2005). A three-session coping skills intervention for caregivers of hospice patients, compared to hospice as usual and emotional support, resulted in significant improvement in quality of life and symptom burden for caregivers (McMillan et al., 2005). Kissane et al. (2006) found that four to eight sessions of grief therapy for families who were assessed as moderately or highly distressed on the Family Relationships Index (Moos & Moos, 1981), compared with standard hospice care only, resulted in significant reductions in distress and depression but not in social adjustment following patient death. However, families high in hostility may have experienced increased distress following the intervention, suggesting that different care may be needed for those families. These three studies suggest that interventions at the end of life may help family members manage their caregiving responsibilities and may aid in adjustment following death. The main mechanisms of change in these studies were improving coping skills and improving family communication. These are, however, preliminary studies and family interventions for hospice patients did not result in improvement in care for the patients. Family grief interventions worked for moderately distressed families, but not for hostile families. New interventions are needed to aid these families in their management of end of life issues and grief.
Children With Cancer
Cancer interventions with children have focused on the family relationships and employed cognitive behavioral and coping skills training (CST) to reduce parental anxiety and posttraumatic stress symptoms hypothesizing that less distressed parents would be able to care for their children more effectively. Caregivers participating in a three-session cognitive behavioral intervention, compared with TAU, reported significant decreases in trait anxiety (Stehl et al., 2009); however, there was a low retention rate likely due to families feeling overwhelmed at this early-stage diagnosis and treatment. Mothers who participated in a problem-solving intervention, compared with TAU, reported improved problem-solving skills, decreased anxiety, and negative mood. Decreases in depression and posttraumatic symptoms were maintained at 3-month follow-up (Sahler et al., 2005). In a second study, they examined whether the addition of reminders, supplied by a smart-phone-like device, improved outcome, but found no differences in the PST and smart-phone reminders (Askins et al., 2008). Parents and siblings of adolescent cancer survivors who participated in a cognitive behavioral four-session intervention, compared to wait-list control, reported significant reductions in posttraumatic stress symptoms (Kazak et al., 2004). Adolescent survivors reported reductions in hyperarousal symptoms. However, less than half of the parents and less than 30% of the sibling and survivors reported moderate to severe posttraumatic stress and the more distressed families did not complete the intervention. Future studies of family interventions for childhood or adolescent cancer survivors need to develop recruitment and retention strategies for more distressed parents and families. Future intervention delivery strategies may be able to take advantage of advances in technology to provide interventions to families in the midst of early treatment in non-intrusive ways that will not add to the burdens they are already experiencing.
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- Neurological Diseases
- Cardiovascular Disease
- A Clinician Responds
Type I diabetes mellitus is a chronic illness that requires adherence to treatment regimen such as daily monitoring of blood glucose levels, administering insulin, diet, and exercise. People with type I diabetes need to monitor their glycosylated hemoglobin (HbA1c) regularly. HbA1c is a blood test that measures how much glucose has attached to hemoglobin in the blood stream for an average of 3–4 months. A healthy range for HbA1c levels is between 4% and 5.9% and signals optimal glycemic control. HbA1c levels exceeding 7% indicate poorly controlled diabetes (Lind, Odén, Fahlén, & Eliasson, 2009).
One in 600 children are diagnosed with type I diabetes, and complications resulting from poor diabetes treatment adherence can lead to blindness, kidney failure, nerve damage, amputation, cardiovascular problems, and death (Cohen, Neil, Thorogood, & Mann, 2009; Dabelea et al., 2007). Between 35% and 40% of youth with type I diabetes have been non-adherent to diabetes treatment regimen at some point during childhood (Geffken et al., 2008). One study showed that children and adolescents with diabetes who did not adhere to their medication regimens had poor glycemic control and were hospitalized more often than those who did adhere to their recommended medication (Morris et al., 1997). Medical adherence in children with type 1 diabetes is a clear public health concern. Children with type I diabetes often require help from their caregivers in managing their illness (Miller-Johnson et al., 1994). Additionally, the family plays a critical role in the quality of medication adherence for children. Research suggests that parents’ warmth, positivity, and responsibility enhance medication adherence (Geffken et al., 2008; Rewers et al., 2007). High family cohesion and low conflict moderate adherence among diabetic youths (Holmes, Swift, Chen, & Hershberger, 2006). Generally, the interventions reviewed in this section attempt to improve glycemic control and aid families by maximizing collaboration and communication and minimizing conflict related to diabetes.
In the following sections, we describe research studies that have tested two specific family therapy intervention models adapted for diabetes: Multisystemic Therapy (MST) (Ellis et al., 2004, 2005, 2005a,b, 2007, 2008; Naar-King, Ellis, Idalski, Frey, & Cunningham, 2007) and Behavioral Family Systems Therapy (BFST-D; Wysocki et al., 2006, 2007, 2008). We also reviewed an intervention for parents (Hoff et al., 2005) and an intervention rooted in cognitive behavioral therapy using CST (Grey et al., 2009). The last interventions reviewed were intended to be integrated into routine diabetes care (Howe et al., 2005; Murphy, Wadham, Rayman, & Skinner, 2007). Of the chronic illnesses reviewed, family-based interventions for children with type I diabetes were the most thoroughly researched and grounded in theory. However, we could find no couple or family interventions studies for adult patients with type 1 or type 2 diabetes.
Family Therapy Models Adapted for Diabetes
MST is rooted in strategic and structural family therapies, behavioral parent training, and cognitive behavior therapies (Henggeler, 1999). Researchers found that MST improved treatment adherence (e.g., glucose testing; Ellis et al., 2004, 2005a,b, 2007, 2008; Naar-King et al., 2007) and reduced the number of emergency room visits (Ellis et al., 2005b, 2008). Glucose monitoring (Ellis et al., 2004), diabetes distress (Ellis et al., 2005b), and family relationships (Ellis et al., 2007) mediated changes in diabetes outcomes. Additionally, adolescent age, gender, and ethnicity moderated the effects of MST on diabetes outcomes (Ellis et al., 2005b). MST interventions included only adolescents with poorly controlled diabetes, which increases the clinical significance of the findings. In addition, studies included high proportions of minorities increasing the generalizability of the results (e.g., Ellis et al., 2004, 2005b; Naar-King et al., 2007). MST also appeared to affect parental overestimation of diabetes adherence (Naar-King et al., 2007), which is associated with poorer glycemic control (Anderson, Auslander, Jung, Miller, & Santiago, 1990). Finally, in most of the MST studies, adolescents’ adherence and glycemic control in the control groups became worse.
Behavioral Family Systems Therapy for families with a child or adolescent with diabetes (BFST-D) is delivered in 12 sessions over the course of 6 months and includes PST, communication training, cognitive restructuring, and functional family therapy. Families randomized to BFST-D, compared with education support (ES) and SC, had significant declines in diabetes-specific conflict and improvements in glycemic control at the 6, 12, 15, and 18 month follow-ups, while there was an increase in conflict for families in SC and ES conditions and a decrease in glycemic control in the SC condition (Wysocki et al., 2006).
Finally, a family teamwork intervention (TW) that focused on parent–adolescent collaboration (communicating positively, sharing responsibility for diabetes tasks, and solving glycemic control problems) resulted in more stable adolescent glycemic control compared with SC (Laffel et al., 2003). Investigators state that they may need to increase the dosage of TW to increase glycemic control, improve family cohesion, and reduce family conflict.
It is important to note that these family therapy–based interventions focused on children and adolescence that had poor glycemic control and were clearly at risk of increased adverse medical events, which is evident given the poor outcomes for the control groups. Not all families require this intense of an intervention, but it is an example of providing the correct dose of treatment based on the level of distress and medical risk.
Coping Skills Training and Parent Groups
Children, whose families participated in a study of CST (communication skills, conflict resolution, stress management, and problem-solving), compared to general diabetes education (GE) did not differ in glycemic control, self-efficacy, depressive symptoms, coping skills, and QOL. Parental warmth and caring-mediated improvements in children’s QOL and children with insulin pumps had greater glycemic control and more warmth and caring from their families compared with children using insulin injection. The generalizability of the study is limited by its preponderance of white, middle to upper class children who already had good glycemic control (Grey et al., 2009).
Parents of newly diagnosed children were assigned to a two-session parent group (PG) designed to decrease uncertainty and distress via communication and PST or to TAU (Hoff et al., 2005). Parents receiving PG, compared with those in the TAU group, reported a significant decrease in distress from baseline to both 1-month and 6-month follow-ups. PG mothers, compared to TAU mothers, reported significant decreases in child internalizing and externalizing behaviors, but the study did not address glycemic control. The first study, which found no differences between intervention and control groups, suggests that to make good use of limited resources, such interventions should be provided only to patients and families at risk. The second study, while finding positive improvement, regrettably did not report effects on glycemic control. In order for interventions to be salient to the emerging healthcare environment, studies must demonstrate changes in patients’ medical outcomes.
Integrating Family-based Interventions Into Routine Diabetes Care
Two studies found mixed results for diabetes education programs for children or adolescents and their parents scheduled in conjunction with regular medical visits or augmented regular visits with education and nurse phone calls. In one study, families who were assigned to group sessions (focused on insulin adjustment, carbohydrate counting, parental responsibility and communication) compared with waitlist control, reported no differences in diabetes management, but did find that parental attendance was associated with greater levels of parental responsibility and improved glycemic control (Murphy et al., 2007). The second study compared a telephone case management plus education intervention (TCM + ED) with an ED and SC and found no significant differences between groups in glycemic control or in diabetes knowledge. However, families in the educational group and in the TCM, compared to SC, showed significant improvements in treatment adherence and balancing parent–child responsibility in diabetes management. We think developing family-based interventions that can be integrated into routine medical care for patients with diabetes has the potential to improve adherence by helping patients and family members work collaboratively to manage the disease.
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- Neurological Diseases
- Cardiovascular Disease
- A Clinician Responds
We can make several conclusions from our review. First, we found a great variety of modalities, dosages, participants, content, and personnel involved in the delivery of interventions to families managing chronic illnesses. Second, we found differing levels of conceptual and methodological sophistication in the development and testing of interventions. Third, the existing literature shows that there is potential for family interventions to reduce patient and caregiver distress, to improve patient functioning through greater adherence to medical regimens, and to strengthen family and couple relationships. Finally, our review points the way toward the next generation of interventions, which need to build on research that identifies potential mechanisms of change (mediators) and the circumstances under which these mechanisms work (moderators).
Variety of Intervention Approaches
The mode, content, and dosage of delivery of interventions varied. Interventions were delivered in offices and homes (e.g., Ellis et al., 2004), through telephone or video conferences (e.g., Howe et al., 2005), through web-based interventions, in group interventions (e.g., Murphy et al., 2007), and through combination inventions such as telephone and face-to-face, telephone and home visits, and other permutations. Some interventions were delivered in a single session while other inventions were delivered in three or four face-to-face sessions followed by phone calls over several months. Some families received more intensive therapy such as multisystemic therapy for troubled families of children with diabetes (Ellis et al., 2004). Participants in interventions sometimes included the patient alone, patient and spouse, children and parents, parents alone, caregivers alone, and groups for patients and caregivers individually and together.
The content of interventions was equally diverse. Interventions provided support, case management, PST, coping skills, medical education, navigation or organizational support, assessments, and direct relationship interventions. Finally, interventions were delivered by a variety of professionals such as nurses, psychotherapists, physicians, health educators, and sometimes, trained volunteers. In many cases, interventions were developed by doctoral-level practitioners but delivered by bachelors and masters level health professionals.
In this section, we examine mechanisms and the circumstances that guided family interventions in health problems. Hypothesized mechanisms of change in TBI included information (Bell et al., 2005; Braga et al., 2005), behavior management training (Braga et al., 2005; Carnevale, Anselmi, Johnston, Busichio, & Walsh, 2006), family functioning (Bell et al., 2005), and non-family social support (Bell et al., 2008). These mechanisms, however, were not described explicitly, usually were not measured, and mediation properties were not tested. Specific mechanisms in the interventions for patients with stroke and their caregivers were rarely described. Social support was described as a problem for patients and caregivers, but it was not measured and evaluated for change (Harrington et al., 2010). One study described marital problems as both resulting from the occurrence of stroke and as a barrier to stroke recovery and then proceeded to test an educational intervention that did not address marital problems (Larson et al., 2005). A study by Lincoln et al. (2003), described caregiver depression as a factor that negatively affects stroke recovery but then designed and conducted an intervention to help caregivers find follow-up care for their patients. Finally, a Swedish study examined support group interventions intended to reduce caregiver depression, but the only mechanism described was social support even although other studies have found that distorted cognitions in coping skills are more proximal to depression than social support (Franzén-Dahlin et al., 2008).
Many cancer interventions had clearly defined mechanisms of change although few tested whether changes in these mechanisms mediated changes in outcomes. Learning to accommodate to changes in one’s body image was hypothesized to be a mechanism of change for patients with breast cancer and their spouses (Kalaitzi et al., 2007). A study by Kuijer et al. (2004), based on equity theory, targeted perceptions of overinvestment and under benefit in couples in which one spouse has cancer. Northouse et al. (2005, 2007) used the stress appraisal model to guide their family interventions with patients with cancer (Lazarus, 2000; Lazarus & Folkman, 1984), which emphasizes illness appraisal and coping skills. Scott et al. (2004) hypothesized that couples who engage in conjoint coping, exemplified by the use of the word “we” or “our” to describe the illness, experience less psychological distress. Studies targeting criticism and avoidance to improve cancer patients’ and spouses’ psychological adjustment also examined whether moderators, such as husbands lack of support, was associated with treatment success, (e.g., Manne et al., 2004).
McMillan et al. (2005) targeted mastery and coping skills in family caregivers of hospice patients to reduce psychological distress. Kissane et al. (2006) selected at-risk families (defined as families with difficulty managing conflict) who had lost a loved one to cancer for a family grief group that trained families to communicate their thoughts and feelings and manage conflict to reduce complicated bereavement. Interventions for children with cancer targeted parental anxiety and post medic stress symptoms to enable parents to provide effective support for their children (Kazak et al., 2004; Kazak et al., 2005; Sahler et al., 2005; Askins et al., 2008) targeted problem-solving skills to reduce psychological distress in mothers whose children were recently diagnosed with cancer.
Diabetes interventions focused on obtaining and maintaining glycemic control through adherence to medical regimen (blood testing and medication) and to health behaviors (diet and exercise). Two intensive family interventions for adolescents with diabetes focused on family disorganization and parental overestimation of adolescents adherence hypothesized to lead to poor monitoring of adolescents’ adherence to medical and health behavior recommendations (Ellis et al., 2004, 2005a; Pattison, Moledina, & Barrett, 2006; Wysocki, 2007). Other diabetes interventions sought to increase parents’ mastery and confidence to manage diabetes through CST (Grey et al., 2009).
Future studies should describe mechanisms thought to be associated with important outcomes and design interventions to target those mechanisms. These mechanisms should be assessed and examined to see whether change in these mechanisms is associated with change in important outcomes. In addition, only one of these studies (Ellis et al., 2008) examined the circumstances (such as gender, age, illness severity) under which interventions were more or less successful. Whenever possible, future studies should stratify randomization by demographic or other factors that might moderate treatment effects. Understanding the circumstances and mechanisms by which family interventions operate is key for understanding the effectiveness of the intervention and specifying the precise conditions and mechanisms future researchers should study to reach a more diverse array of people facing chronic illness and their families. Except for a few studies, such as MST with children and adolescents with diabetes, most studies did not have racially or ethnically diverse samples.
Finally, some studies were atheoretical. Theories such as family systems theory (Cox & Paley, 2003), interdependence theory (Lewis et al., 2006), developmental contextual theory (Berg & Upchurch, 2007), social support, and social control theories (Franks et al., 2006)—to name a few—can provide guidance for developing or refining interventions. Theories make predictions about mechanisms that, if targeted for intervention, may bring about change. Future studies should seek to integrate a strong theoretical foundation along with the purpose of addressing the question: “who provides what to whom with what effect?” (Uchino, 2004, p. 177).
Several methodological issues should be addressed in future studies of family interventions for health problems. It is important that intervention research is carried out with populations at risk of poor outcomes. This avoids two problems: One, the development of interventions for populations that do not need them; and second, floor or ceiling effects that make it impossible to demonstrate change. Control and comparison groups should be designed to isolate treatment mechanisms thought to produce change. Often interventions contained multiple components, and it is therefore important to develop comparison groups that will isolate hypothesized change mechanisms. Researchers should also consider using statistical procedures such as multilevel modeling or dyadic data analysis that treat the family or couple as the unit of analysis. Researchers also should use statistical analyses suited to examine potential mediators and moderators. Finally, researchers should work in close collaboration with medical care providers to develop interventions that can be integrated into the healthcare system. Many efficacious interventions have been developed, published, but not implemented (Glasgow, Vogt, & Boles, 1999). Instead, they sit on a shelf gathering dust (Dzewaltowski, Glasgow, Klesges, Estabrooks, & Brock, 2004).
A Clinician Responds
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Helping patients and their families manage chronic illnesses requires family therapists to become more integrated within the larger healthcare system (Shields et al., 1994). Many family therapists work in primary care settings (Frank, McDaniel, Bray, & Heldring, 2004) or in private offices in close consultation with primary medical providers (Driscoll & McCabe, 2004). A great deal has been written about medical family therapy (McDaniel, Hepworth, & Doherty, 1992a,b; Seaburn et al., 2007), but as our review shows that the research on family interventions for medical problems is largely in the developmental phase. Given that, what are the clinical implications that can be drawn from this review?
The studies we reviewed strongly suggest the importance of developing a clear conceptual model of the influence of family on health functioning. Interventions that produced stronger results targeted specific behaviors that improved health and were theoretically driven. If you are working with a specific illness such as diabetes, you would need to target family processes that encourage medical compliance and health behaviors. If you are working with distressed caregivers, you may target social support to reduce social isolation, coping skills to improve stress management, or rehabilitation skills to improve patient functioning. Each medical problem and each caregiver or patient symptom may have different antecedents that serve as targets for intervention. We think it is the clinicians’ challenge to develop an appropriate theory of the problem and to choose intervention approaches that have shown some promise in addressing the symptoms at hand.
The chronic care model suggests that patients and their family caregivers must become managers of their own health in collaboration with healthcare providers (Wagner et al., 1996). This model and the research we have reviewed support the idea that a common goal in family treatment for chronic illnesses is to aid patients and families in developing self-management skills. Interventions can also encourage collaborative decision-making within the family (when appropriate) and with healthcare providers. Some patients and family members may need coaching to present their concerns and to ask questions of their healthcare providers (Clayton et al., 2007). Practicing clinicians may consider offering psychoeducational programs and other outreach in collaboration with medical providers.
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