Illness can lead to emotional instability and permanent or temporary physical disability. Patients might also experience reduced levels of independence and/or modifications of their roles in family and society.

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Illness can lead to emotional instability and permanent or temporary physical disability. Patients might also experience reduced levels of independence and/or modifications of their roles in family and society. These changes may also have significant effects on family members and caregivers’ lifestyles and quality of life. Chronic exposure to stressors, such as medical treatments, side effects, complications, or hospital admissions, can deplete the internal and external coping resources of a patient and his or her family system.

Medical social workers confront the challenges posed by illness every day. In addressing these concerns, medical social workers focus attention on the impact of illness on patients and families. Through ongoing assessment, they consider how and if this impact might change with the progression of illness, whether positive or negative.

Question:

Post a description of three major emotional or psychological factors that influence both patients and their families. Then, explain patients’ and their families’ experiences in dealing with illness and associated disability. Explain one of these factors that might be challenging for a medical social worker to address. Then, explain strategies that a medical social worker might employ to address the factor.

Be sure to support your postings and responses with specific references to the resources and the current literature using appropriate APA format and style.

Involving Family in Psychosocial Interventions for Chronic Illness Lynn M. Martire and Richard Schulz

Department of Psychiatry, University of Pittsburgh School of Medicine, and University Center for Social and

Urban Research, University of Pittsburgh

ABSTRACT—Interactions with close family members have

consequences for the emotional and physical well-being of

individuals who are dealing with a chronic physical illness.

Therefore, inclusion of a close family member in psycho-

social interventions for chronic illnesses is a logical treat-

ment approach that has the potential to boost the effects

of intervention on the patient and also benefit the family

member. However, randomized, controlled studies indicate

that such family-oriented interventions generally have

small effects. The efficacy of these treatment approaches

might be enhanced by targeting specific interactions that

emerging research identifies as promoting or derailing

healthy behaviors and by better incorporating strategies

from family caregiver interventions. In addition, family-

oriented interventions should be more fully evaluated, by

assessing the benefits for both patients and family mem-

bers. Future research in this area can tell us much about

how and when to involve family in treatment of specific

chronic illnesses and, in turn, may inform conceptual

models of the impact of family interactions on health.

KEYWORDS: chronic illness, psychosocial interventions,

family, social support

Family is not an important thing, it’s everything.

—Michael J. Fox

Regardless of an individual’s celebrity, few circumstances in

adulthood are more stressful than a chronic illness, and family

plays an important role in psychological adjustment and symp-

tom management. Emotionally and instrumentally supportive

actions on the part of family members, as well as family conflict

and criticism, have been linked with patients’ emotional well-

being, health behaviors, immune function, blood pressure, and

illness events (Kiecolt-Glaser & Newton, 2001; Schmaling &

Sher, 2000). These associations have been observed across ill-

nesses as diverse as cardiovascular disease, chronic pain dis-

orders, arthritis, cancer, renal disease, and Type 2 diabetes, as

well as in healthy individuals who are at risk for illness. In turn,

illness in a loved one can erode family members’ psychological

and physical well-being over time and compromise their ability

to be supportive, especially when the illness is life threatening

or the patient requires assistance with daily activities.

Psychosocial or behavioral interventions for chronic illness,

such as patient education, support groups, and cognitive-

behavioral therapies, have been shown to have effects on health

and emotional well-being that surpass improvements attained

with usual medical care alone (i.e., medication or surgery).

Because of the links between family relationships and chronic-

illness management, some researchers have incorporated a close

family member such as the spouse in these interventions. The

rationale for involving a family member in treatment can be

found in the biopsychosocial model of health and illness and

specific marital and family-systems frameworks. These con-

ceptual models and frameworks have been supported by

empirical evidence showing that close social relationships, es-

pecially the marital relationship, affect biological systems,

health behaviors, and psychological well-being. Therefore,

improving the quality of interactions with a close family member

or involving that individual in disease management should

promote adjustment to chronic illness. Specific treatment ap-

proaches range from enlisting the family member’s help in

changing the patient’s health behaviors (e.g., training the spouse

of a patient with chronic pain to help the patient practice pro-

gressive muscle relaxation) to also addressing issues of how

spouses can provide effective emotional and instrumental sup-

port (e.g., counseling for couples dealing with the wife’s breast

cancer).

Incorporating a close family member in psychosocial treat-

ment may have a positive impact on patient health behaviors,

Address correspondence to Lynn M. Martire, 121 University Place, Room 508, University of Pittsburgh, Pittsburgh, PA 15260; e-mail: martire@pitt.edu.

CURRENT DIRECTIONS IN PSYCHOLOGICAL SCIENCE

90 Volume 16—Number 2Copyright r 2007 Association for Psychological Science

emotional well-being, and symptomatology as the result of

increased empathy and supportiveness of the family member. In

addition, the family member’s caregiving burden may be eased

by the validation of his or her caregiving experiences and im-

proved interactions with the patient. In the following sections,

we summarize our findings from two recent systematic reviews

of the literature that compared family-oriented psychosocial

intervention with usual medical care alone and with patient-

oriented psychosocial intervention.

ARE FAMILY INTERVENTIONS MORE BENEFICIAL

THAN USUAL MEDICAL CARE?

In our first review of the literature, we included studies that

compared family-oriented psychosocial interventions (which

included usual medical care) to usual medical care that did not

include a psychosocial component. We reviewed the findings of

70 randomized, controlled studies that compared these two

approaches and that recruited a family member, such as the

spouse or an adult son or daughter, for every patient (Martire,

Lustig, Schulz, Miller, & Helgeson, 2004). These interventions

focused on different illness populations; used psychological,

social, or behavioral approaches; and were targeted at either the

patient’s closest family member (the primary caregiver in some

studies) or both patient and family member. Because we in-

cluded different illnesses in this review, our focus was on out-

comes that were generalizable across illnesses, and we examined

effects on the patient (i.e., depressive and anxiety symptoms,

relationship satisfaction, physical disability, and mortality) as

well as on the family member (i.e., depressive and anxiety

symptoms, relationship satisfaction, and caregiving burden).

Almost half of the studies focused on populations with dementia;

the remainder focused on those with cardiovascular disease,

cancer, general medical frailty, chronic pain, stroke, rheumatoid

arthritis, and traumatic brain injury.

For patients, interventions that included only patients’ spou-

eses had small, positive effects on reducing depressive symp-

toms across various illnesses, but interventions that included

mixed groups of family members (e.g., spouses and adult chil-

dren) did not decrease depressive symptoms. In addition, fam-

ily-oriented interventions that focused on individuals dealing

with hypertension or cardiovascular disease resulted in a small

decreased risk for patient mortality, especially if the interven-

tions included mixed groups of family members and used be-

havioral treatment approaches. For family members, we found

that family-oriented interventions slightly reduced the psycho-

logical burden of caregiving, as well as depressive and anxiety

symptoms. This latter finding has important implications for

family members’ physical health because caregiver burden and

distress have been linked to an increased risk for morbidity and

mortality (Schulz & Beach, 1999).

ARE FAMILY INTERVENTIONS MORE BENEFICIAL

THAN PATIENT INTERVENTIONS?

From a behavioral-medicine perspective, the more interesting

question than whether family interventions are more beneficial

than usual medical care is whether targeting both the patient and

the family member with psychosocial or behavioral strategies is

better than targeting only the patient with these strategies (with

both treatment approaches including usual medical care; see

Fig. 1). In other words, is there an advantage to patient and

family member when the family member is included in a psy-

chosocial intervention? Unfortunately, few studies have been

Illness Parameters – Physical symptoms – Treatment side effects

Emotional Well-Being – Depressive symptoms – Anxiety – Perceived stress

Family Factors – Effective emotional support and assistance to patient

– Burden on family member

Health Behaviors – Diet, exercise – Smoking, alcohol use – Medication adherence

Biological Parameters – Cardiovascular, immune,

and neuroendocrine functioning

Functional Status – Overall illness severity – Physical disability

Patient-Oriented Psychosocial Intervention

Family-Oriented Psychosocial Intervention

Fig. 1. Heuristic model showing domains of functioning (i.e., emotional well-being, health behaviors, and family factors) that mediate parameters of chronic illness in their effects on a patient’s functioning. Intervention that incorporates or involves a close family member may have added benefit as compared to intervention aimed only at the patient, due to the former’s effects on the third domain of functioning (i.e., family factors). The type of family-oriented intervention depicted in this model includes standard content (e.g., education regarding illness etiology and cognitive-behavioral skills training for illness management) and incorporates a close family member by treating that individual as a collaborator in the patient’s inter- vention and/or by addressing his or her personal concerns, burden, and supportiveness of the patient. Examples of specific constructs are provided for each domain of functioning.

Volume 16—Number 2 91

Lynn M. Martire and Richard Schulz

designed to answer this question, and those show mixed findings

for patients and focus little attention on whether family members

benefited from being included.

The findings of 12 randomized, controlled studies comparing

family-oriented intervention to patient-oriented intervention

were recently reviewed (Martire, 2005). Approximately half of

these studies showed significant improvements over time for

those receiving family intervention or reported that there was

also a statistically significant advantage of family intervention

over patient intervention. For example, individuals with chronic

low back pain who attended exercise sessions in combination

with couple-oriented behavioral therapy showed greater less-

ening of pain and pain behavior (e.g., grimacing, limping,

groaning) and greater diminishment of the impact of pain on

their lives than did individuals who received only an exercise

intervention. Our own research with osteoarthritis patients and

their spouses showed that patients felt they managed their

arthritis more effectively if they received a couples-oriented

education and support intervention than if they received edu-

cation and support with other patients only (Martire et al., 2003).

Consistent with these positive findings, a more recent study

showed that problem-solving therapy for cancer patients and

their significant others reduced the patients’ psychological

distress more than did patient-focused problem-solving therapy

(Nezu, Nezu, Felgoise, McClure, & Houts, 2003). Significant

improvements over time as the result of family-oriented inter-

vention have also been reported regarding blood-pressure con-

trol in hypertension; stress and cardiovascular complications in

postcardiac surgery; and pain, psychosocial adjustment, and

number of medical visits in chronic pain.

In contrast to the positive findings for family-oriented inter-

ventions, an educational intervention for individuals with

rheumatoid arthritis and their significant others resulted in

decreased self-efficacy and increased fatigue, whereas a similar

patient-oriented intervention was found to enhance self-efficacy

and reduce fatigue (see review by Martire, 2005). Such unex-

pected negative effects of family-oriented intervention may oc-

cur in studies that do not address communication issues between

patients and partners, or partners’ personal concerns. We return

to this issue in the next section.

In the remaining studies, the more efficacious approach for

patients depended on factors such as patient gender and specific

type of intervention (i.e., educational versus behavioral

approach; see review by Martire, 2005). For example, a couple-

oriented behavioral program for obese individuals with Type 2

diabetes resulted in more weight loss for female patients than did

a patient-oriented program, whereas male patients lost more

weight in the patient-oriented program. (Spouses who partici-

pated in the couples program lost more weight than spouses of

individuals in the patient-oriented program, regardless of their

gender.) In addition, studies focused on rheumatoid arthritis or

osteoarthritis showed that family-oriented interventions that

used cognitive-behavioral rather than educational approaches

resulted in greater reductions in joint swelling or pain-related

outcomes than did cognitive-behavioral interventions for pa-

tients only.

These studies illustrate how research can reveal for whom and

under what conditions family intervention may be especially

beneficial, by identifying patient, family member, or intervention

characteristics that moderate the effects of family intervention.

A recent study showed that a couple-oriented intervention for

breast cancer patients that was designed to enhance support

exchanges (e.g., effective communication, problem solving as a

team, respecting differences in coping styles) was most helpful to

patients with unsupportive partners (Manne et al., 2005). This

study, as well as others (e.g., Helgeson, Cohen, Schulz, & Yasko,

2000), raises an important question about patient-oriented in-

terventions that have targeted individuals with unsupportive

relationships and have had small effects on patient outcomes:

Would the effects of these interventions have been stronger had

the interventions included a family member?

HOW CAN WE ENHANCE THE EFFICACY OF

FAMILY INTERVENTIONS?

As described above, the findings of randomized trials indicate

that family-oriented interventions do not consistently outper-

form patient-oriented psychosocial interventions. There are

several explanations why the promise of family interventions has

not been fulfilled. Methodological flaws, such as failing to ensure

the full participation of family members, may explain why this

approach has had null or weak effects in some studies. In

addition, family-oriented interventions have not consistently

targeted family interactions that affect health and issues sur-

rounding the burden of illness on a family. Interventions appear

to be more beneficial for patients (Martire et al., 2004) and for

family members (Martire, 2005) when they address such issues.

Research on family caregiver interventions illustrates the value

of particular strategies such as stress management, skills

training, and validation of the family member’s experiences as a

provider of support (Schulz et al., 2002).

But how can we explain the generally small effects of inter-

ventions targeting family support or the relationship between

patient and family member? One explanation may be found in

the empirical literature that is the foundation for many family-

oriented interventions for chronic illness. Early correlational

research revealed that patients sometimes perceive well-

intentioned family actions or communications as unhelpful, and

that overprotective or solicitous behaviors may be perceived as

helpful by patients but also cause them to be more physically

inactive and dependent (Lyons, Sullivan, Ritvo, & Coyne, 1995).

Thus, past family-oriented interventions may not have been

successful in (a) reducing the frequency of family actions or

communications that derail healthy behaviors and distress

patients or (b) bolstering interactions that promote healthy be-

haviors and emotional well-being.

92 Volume 16—Number 2

Family-Oriented Interventions

More recent conceptual and empirical work might be useful in

developing family interventions that have greater impact and

more consistent effects. Here, we provide examples of relevant

research in two of several useful areas: autonomy support and

social control. We chose to highlight these two areas of research

because they focus on health behaviors, and management of

today’s most common chronic illnesses often requires patients to

make substantial changes in diet and exercise and to adhere to a

medication regimen despite unpleasant side effects. Autonomy

support refers to behaviors that are characterized by warmth,

empathy, and understanding for an individual’s situation;

patient-centered communication; and the provision of choices

for making health behavior changes. A program of research on

individuals with Type 2 diabetes has shown that patients with

health-care providers who are more supportive of their autonomy

feel that they are better able to regulate their blood glucose and

show improved glucose control over 1 year (Williams, Freedman,

& Deci, 1998). Complementing these findings, our work has

demonstrated that older adults with disabling arthritis who feel

that they have no choice over the amount, timing, and manner

of physical assistance from their spouses experience increased

depressive symptoms over time (Martire, Stephens, Druley, &

Wojno, 2002).

Emerging work in the area of health-related social control also

might be useful to incorporate in family interventions. Social

control is thought to be distinct from social support and refers to

an individual’s attempts to regulate or influence the behaviors of

another person through actions, affective responses, and cor-

rective feedback. Early theory on social control suggested that it

may deter poor health practices but at the same time cause dis-

tress by evoking irritation, resentment, or guilt. However, more

recent research has identified tactics that may promote healthy

behaviors and also be appreciated by patients—tactics such

as persuasion (e.g., efforts to convince or motivate), modeling

(enacting the behavior), reinforcement, and using logic (e.g.,

pointing out positive consequences; Lewis & Butterfield, 2005).

As these lines of research move forward and are conceptually

and empirically synthesized with previous research, findings can

inform the development of psychosocial interventions for spe-

cific illness populations. Specifically, future interventions may

include content aimed at teaching family members how to sup-

port patients’ need to make their own choices and carry out daily

activities independently. This type of family-oriented interven-

tion may show stronger and more consistent advantages over

psychosocial treatments focused only on the patient.

CONCLUSIONS

There is not yet strong evidence for the efficacy of family-

oriented interventions. However, including family members in

health care is an approach that has much face validity. Moreover,

the small effects that have generally been observed across

studies, particularly with regard to the emotional well-being of

family members, make a compelling argument for further re-

search using well-designed studies that can more fully reveal

what type of patient may benefit from this approach.

Future research may better evaluate the added benefit of

family-oriented interventions by including specific features that

have often been disregarded in past studies, such as random

assignment of participants and adequate statistical power to

detect between-group differences. In this research, it would be

optimal to assess outcomes for both the patient and the family

member. Finally, we have much to learn about the causal

mechanisms linking positive and negative aspects of close social

relationships to physical health (e.g., psychological, behavioral,

and biological pathways), and such knowledge is critical for

developing family-oriented interventions that truly make a dif-

ference for patients and their families.

Recommended Reading Cohen, S., Underwood, L.G., & Gottlieb, B.H. (2000). Social support

measurement and intervention: A guide for health and social scientists. New York: Oxford University Press.

Lyons, R.R., Sullivan, M.J.L., Ritvo, P.G., & Coyne, J.C. (1995).

(See References)

Martire, L.M. (2005). (See References)

Martire, L.M., Lustig, A.P., Schulz, R., Miller, G.E., & Helgeson, V.S.

(2004). (See References)

Schmaling, K.B., & Sher, T.G. (2000). (See References)

Acknowledgments—Preparation of this manuscript was sup-

ported in part by National Institutes of Health Grants K01

MH065547, R24 HL076852-076858 (Pittsburgh Mind-Body

Center), and R01 NR008272.

REFERENCES

Helgeson, V.S., Cohen, S., Schulz, R., & Yasko, J. (2000). Group support

interventions for women with breast cancer: Who benefits from

what? Health Psychology, 19, 107–114.

Kiecolt-Glaser, J.K., & Newton, T.L. (2001). Marriage and health: His

and hers. Psychological Bulletin, 127, 472–503.

Lewis, M.A., & Butterfield, R. (2005). Antecedents and reactions to

health-related social control. Personality and Social Psychology Bulletin, 31, 416–427.

Lyons, R.R., Sullivan, M.J.L., Ritvo, P.G., & Coyne, J.C. (1995). Rela- tionships in chronic illness and disability. Thousand Oaks, CA: Sage.

Manne, S.L., Ostroff, J.S., Winkel, G., Fox, K., Grana, G., Miller, E.,

et al. (2005). Couple-focused group intervention for women with

early stage breast cancer. Journal of Consulting and Clinical Psychology, 73, 634–646.

Martire, L.M. (2005). The ‘‘relative’’ efficacy of involving family in

psychosocial interventions for chronic illness: Are there added

benefits to patients and family members? Families, Systems & Health, 23, 312–328.

Volume 16—Number 2 93

Lynn M. Martire and Richard Schulz

Martire, L.M., Lustig, A.P., Schulz, R., Miller, G.E., & Helgeson, V.S.

(2004). Is it beneficial to involve a family member? A meta-

analytic review of psychosocial interventions for chronic illness.

Health Psychology, 23, 599–611.

Martire, L.M., Schulz, R., Keefe, F.J., Starz, T.W., Osial, T.A., Dew,

M.A., et al. (2003). Feasibility of a dyadic intervention for man-

agement of osteoarthritis: A pilot study with older patients and

their spousal caregivers. Aging and Mental Health, 7, 53–60.

Martire, L.M., Stephens, M.A.P., Druley, J.A., & Wojno, W.C. (2002).

Negative reactions to received spousal care: Predictors and

consequences of miscarried support. Health Psychology, 21, 167–176.

Nezu, A.M., Nezu, C.M., Felgoise, S.H., McClure, K.S., & Houts, P.S.

(2003). Project Genesis: Assessing the efficacy of problem-solving

therapy for distressed adult cancer patients. Journal of Consulting and Clinical Psychology, 71, 1036–1048.

Schmaling, K.B., & Sher, T.G. (2000). The psychology of couples and

illness: Theory, research, & practice. Washington, DC: American

Psychological Association.

Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mor-

tality: The Caregiver Health Effects Study. Journal of the American Medical Association, 282, 2215–2219.

Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L.M.,

et al. (2002). Dementia caregiver intervention research: In search

of clinical significance. Gerontologist, 42, 589–602.

Williams, G.C., Freedman, Z.R., & Deci, E.L. (1998). Supporting

autonomy to motivate patients with diabetes for glucose control.

Diabetes Care, 21, 1644–1651.

94 Volume 16—Number 2

Family-Oriented Interventions

41

VOLUME 94 NO. 2 FEBRUARY 2011

The Role of Family Caregivers for People with Chronic Illness

Arnold Goldberg, MD, and Kim Salloway Rickler, MSW

A chronic disease (e.g., diabetes, cardio- vascular disease, stroke, hypertension, dementia, some cancers, rheumatologi- cal diseases, human immunodeficiency virus) can occur and cycle in flare ups throughout the lifetime. Chronic ill- nesses, with their effect on the patient’s symptoms, mood, and need for emotional and physical support, exert a burden on family members.1-4 Additionally, families influence a patient’s psychological adjust- ment and management of the illness, adoption of behaviors that influence recovery, functioning and adherence to treatments. 5

The authors, a family physician and a clinical social worker, have been counsel- ing patients and families in a variety of health care and educational settings for 30 years. We have led psycho-educational and medical groups involving patients (and their caregivers) with cancer, chronic pain, diabetes, cognitive impairment and childhood congenital and genetic illnesses. We have seen how the involve- ment of families and caregivers improves the quality of life for the patient, eases caregivers’ burden, encourages adherence to treatments and increases patients’ abil- ity to cope with the illness. The clinician’s attention to the caregiver can potentially improve family relationships and, there- fore, decrease anxiety in the patient and his/her caregiver.

Family caregivers function as advo- cates and provide physical, emotional and financial support, frequently without any training, often without recognition or support, and rarely with financial re- imbursement. Many people living with chronic illness could not live indepen- dently without family caregivers. Gail Sheehy, in Passages in Caregiving: Turning Chaos Into Confidence, described a want ad for a family caregiver in her wry yet poignantly accurate style:

“HELP WANTED: Untrained fami- ly member or friend to act as advocate, researcher, care manager, emotional support for a parent or spouse, sibling

or friend, who has been diagnosed with a serious illness or chronic disability. Duties: Make medical decisions, negotiate with insurance companies or Medicare; pay bills; legal work; personal care and entertain- ment in hospital and rehab. Aftercare at home: Substitute for skilled nurse if injections, IV’s, oxygen, wound care or tube feedings as required. Long- term care: Medication management, showering, toileting, lifting, transport- ing, etc. Hours: On demand. Salary and benefits: 0”

Without positive reinforcement from physicians and emotional support, these essential people might not be able to func- tion as caregivers.

An 85-year old, married woman, who had been seen by her primary care physi- cian for 5 years, suffers from chronic pain, fibromyalgia, anorexia and weight loss, multiple chemical sensitivity syn- drome, chronic gastric problems with severe gastroesophageal reflux disease, irritable bowel and fatigue. She reports feeling helpless and emotionally over- whelmed. She and her husband do not have children or living siblings, but she reports she has a positive, long-term mar- riage and relies heavily on her husband for support. Her provider has diligently responded to her concerns and treated her illness appropriately. However, the physi- cian had never met this patient’s husband and had no understanding about his actual care-taking responsibilities and the impact of his wife’s chronic illness on their relationship. The physician encouraged his patient to bring her husband to her next appointment. During that visit, conducted with the couple, the physician learned more about their devotedness and heard his confusion regarding her various illnesses and his consequent feelings of anxiety and helplessness. An in-depth discussion and medical educational session provided crucial information and tremendous relief for the patient’s

husband. Additionally, he expressed some of his own difficulty coping with his wife’s condition and she in turn shared her ap- preciation for his consistent support. The husband continues to attend his wife’s medical appointments and participate fully in her care. While the patient’s physi- cal condition has not improved, their ability to share the experience and express their love for each other inspires both to continue their battle together.

A literature search yielded 139 articles and reviews of caregivers of chronically ill persons, including previous reviews and controlled studies from 1996- 2010.6 There are very few well-designed randomized controlled quantitative studies documenting the outcomes of interventions for the caregivers.7

The effect on family caregivers across most chronic illnesses can be grouped into changes in social, economic, physi- cal and mental status.7-10 The burden of care is one of the main consequences for family caregivers with chronic or progres- sive illness.11-14 This burden may lead the caregiver to postpone his/her own needs.15 The patient’s close family mem- bers may experience poor psychological well-being (depression, anxiety), decreased satisfaction in relationships, caregiver bur- den and poorer physical health.7 A recent large retrospective cohort study concluded that male partners of women breast cancer patients had a significant increase in major depression, resulting in psychiatric hos- pitalization. This study emphasized the importance of screening for depression and providing psychological treatment for the caregivers of breast cancer patients, and may have implications for family caregivers of people with other chronic illnesses.16 Poor self-esteem, difficulty with intimacy, criti- cism and over-protective or solicitous be- haviors have been linked with consequent changes in the family structure when a family member has a chronic illness. These have been observed in heart disease and stroke.5 In patients with cardiovascular disease, hypertension, myocardial infarc-

42

MEDICINE & HEALTH/RHODE ISLAND

tion, dementia or stroke, Campbell and Patterson found that the most promising family interventions were psychosocial ap- proaches. In patients with dementia and stroke, caregiver interventions may help the mental health of caregivers and delay nurs- ing home placement.17 Other reviews have been descriptive not quantitative, focusing on family member outcomes of frail adults and patients with dementia. Quantitative reviews have generally revealed minimal effect on reducing caregiving burden and negative mood.5

In a literature review from 1997- 2007, Glasdam et al looked at caregiv- ers for adults with strokes, diabetes, cardiovascular disease and cancer; they found 32 controlled studies with 29 of them randomized. In 10 of the 32, the interventions had no effect. In 22 the interventions had some effect on burden reduction, increased knowledge and mas- tering skills.7 In another review, family members felt less burdened, depressed and anxious when the intervention focused on the relationship between the patient and the caregiver. 5 The vast majority of fam- ily interventions combined psychosocial or behavioral approaches. The most com- mon combinations were education with emotional support and emotional support combined with skills training. 5,7 Overall, more work is necessary to track longi- tudinal outcomes for family members, including the greater risk for mortality in caregivers.18 In each illness studied, the impact on the female caregivers was greater than on male caregivers,7,10 per- haps because men more readily accepted help from family members and also relied on community resources.11,19

Without the multitude of unpaid family caregivers, many people would live in institutions. How can we as a society provide education and support for these caregivers? We’d like to propose some inter- vention tools to assist the medical team in assessing the needs of family caregivers.

First, the team should include the patient and her/his support system as ac- tive members. Initiating a discussion with the patient regarding the specifics of her/ his care out of the office setting and en- couraging the patient to include identified family/friend caregivers in future visits can be a first step. It may also be impor- tant to assess the patient and caregiver’s cultural and spiritual connections and

beliefs, community organizations she/he’s involved with, and hobbies. Conducting family meetings, referring to community support groups, web-based education, computerized chat rooms and referral for concrete resources (e.g. financial, medica- tions, respite, etc.) as well as suggesting basic relaxation techniques, visualization, massage, or a referral to psychotherapy should also be considered.

In the many instances where the fam- ily physician also treats the caregiver, that physician may already know about the caregiver’s support network and coping strategies. But what should the physician’s role be with the caregiver who is not his/ her patient? By asking the caregiver how she/he’s doing (coping, managing) the physician demonstrates empathy and ac- knowledges the role of the caregiver. The physician needs to help the caregiver iden- tify the importance of maintaining her/ his own well-being by learning effective self-care techniques, to reduce caregiver burden, stress and burnout.

The shortcomings regarding the evidence-based studies should drive future research for randomized controlled de- signs, but should not diminish the body of qualitative and observational studies that do address the impact of illness on caregivers. The current studies are inconclusive about what interventions are most effective for caregivers. The most common interven- tions described combine education with emotional support, emotional support with skills training, and education with emo- tional support and skills training. Other approaches have been health care planning, structured exercise programs and temporary transfer of patient care to a community care setting, home visits by nurses or social workers, telephone contact, education and teaching, counseling and videotaped information about community resources and coping techniques.8 Clearly, however, for as many different diseases, family con- stellations and situations, there are at least as many options for intervention.

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ily Health Psychology. Washington, DC Hemi- sphere, 1992.

2. Turk DC, Kerns RD, (Eds). Health, Illness and Families: A Life Span Perspective. New York: Wiley, 1985.

3. Burg MM, Seeman TE. Families and health. An- nals Behavior Med 1994;16:109-15.

4. Lyons RF, Sullivan MJL, et al. (Eds). Relation- ships in Chronic Illness and Disability. Thousand Oaks, CA: Sage, 1995.

5. Martire LY, Lustig AP, et al. Is it beneficial to involve a family member. Health Psy- chol 2004;23:599-611.

6. PubMed US National Library of Medicine National Institutes of Health.

7. Glasdam S, Timm H, Vittrup R. Support efforts for caregivers of chronically ill per- sons. Clin Nurs Res 2010;19:233-65.

8. Johansson S Fahlstršm G. Good inten- tions. Vardi Norden 1993;13:15-22.

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Arnold Goldberg, MD, is Medical Di- rector, Family Care Center, Memorial Hos- pital of RI, and Associate Professor of Family Medicine (Clinical) at The Warren Alpert Medical School of Brown University.

Kim Salloway Rickler, MSW, is Clini- cal Teaching Associate of Family Medicine, Memorial Hospital of Rhode Island.

Disclosure if Financial Interests The authors and/or spouses/signifi-

cant others have no financial interests to disclose.

CORRESPONDENCE Arnold Goldberg, MD Department of Family Medicine Memorial Hospital of Rhode Island 111 Brewster St. Pawtucket, RI 02860 Phone: (401) 729-2237 e-mail: Arnold_Goldberg@mhri.org

Many different coping strategies can help family members deal with the stresses of chronic

illness. But when coping strategies aren’t enough, help should be sought.

The Impact of Chronic Illness on the FamilyBy Erika Lawrence, PhD

21June-July 2012 www.IGLiving.com IG Living!

Afamily develops a kind of homeostasis — a normaldynamic and routine — that is disrupted when amember of that family develops a chronic illness. Indeed, chronic illness changes family members’ roles, responsibilities and boundaries. It disrupts their self- images and self-esteem. It results in uncertain and unpre- dictable futures. And it triggers distressing emotions — anxiety, depression, resentments, feelings of helplessness, as well as illness-related factors such as permanent changes in physical appearance or bodily functioning. How a family responds to chronic illness varies based on

the age and developmental stage of the ill individual, the strength and coping mechanisms of the family, and the family life-cycle stage. There are many different ways that a chronic illness can affect a family. The person who is chronically ill may feel guilty about the demands his or her illness makes on the family. He or she may resent the change in roles and responsibilities caused by the limitations imposed by the illness, and he or she must deal with the threat to his or her autonomy and the need to depend on healthy family members. The spouse or partner of a person with a chronic illness

can be faced with dual challenges: 1) as the primary provider of support to the ill partner and 2) as a family member who needs support in coping with the illness- related stresses he or she is experiencing. The burdens of being the primary caregiver may take their toll. The spouse may feel trapped while trying to balance dependence and autonomy of the patient with his or her own needs. He or she may feel tired or emotionally drained by the long duration of the illness or the extent of the caregiver workload. The spouse may struggle with feeling powerless when his or her partner is in pain, or by the pressure to be emotionally strong. There may be concerns about the consequences of the illness for the spouse, his or her partner and, if relevant, the children. And, he or she may have to restructure family roles and responsibilities as the disease progresses or presents new challenges. Having a child with a chronic illness affects the parents

in unique ways as well. Some studies suggest that having a child with a chronic illness has a negative impact on the relationship, including lack of time with the spouse, communication problems, higher divorce rates, increased relationship conflict, increased role strain, and decreased relationship satisfaction. Yet, other studies indicate that there are no effects, and still others have found positive effects including increased closeness, greater cohesion and increased support. Indeed, rates of divorce are lower

among couples who have a child with a chronic illness. However, the impact that having a child with a chronic illness has on the adult relationship depends on the severity, course and prognosis of the illness, as well as on the quality of the relationship before the child became ill. Given all of these adjustment demands, one might expect

that the presence of a chronic illness would inevitably result in significant emotional difficulties and breakdown in family functioning. But, despite the presence of conditions and situations that are clearly traumatic and disruptive, a substantial proportion of families make satisfactory if not magnificent adjustments.

Effective Ways for Couples to Cope Most people talk about coping as problem-focused

(taking care of what needs to get done) or emotion- focused (trying to reduce emotional distress). However, there is a third type of coping that is critical for couples or families faced with a chronic illness: “relationship-focused coping.” Relationship-focused coping means focusing on maintaining the quality of the relationship as part of the coping process. When faced with a stressful situation, each partner may attend to the other’s emotional needs in order to maintain the integrity of the relationship. Partners endeavor to manage their own distress without creating upset or problems for the other partner. Relationship- focused coping involves a balance between self and other, with the goal of maintaining the integrity of the relationship above either spouse’s needs. Effective strategies include negotiating or compromising, considering the other person’s perspective and being empathic. Specific strategies include: View the illness as a couple or family problem: If both

partners take a relationship perspective, they see the illness as a problem for the relationship, rather than just a problem

The person who is chronically ill may feel

guilty about the demands his or her illness makes

on the family.http://www.IGLiving.com

22 June-July 2012 www.IGLiving.com IG Living!

for one individual. They talk about the relationship as a way to cope and maintain the relationship. Couples who become aware of and discuss the relationship implications of a partner’s illness can anticipate how their relationship may change and prepare for the difficulties they may face. Couples who are resilient when faced with a chronic illness believe that they are in it together and serve as each other’s confidante, advisor and sounding board. Therefore, their attention should focus on the relationship as its own entity. For example, if the caregiver is thinking about how diffi- cult it must be for his or her partner to be ill, then the focus is on the partner within the relationship but not on the relationship itself. With “relationship awareness,” the caregiver focuses on the relationship by telling his or her partner that the difficulties posed by the illness are ”their” difficulties, thereby taking a relationship perspective in dealing with the illness.

Use similar or complementary coping strategies: The goal of couple coping is to maximize the fit between part- ners’ coping styles in order to most effectively cope as a couple. Strategies that work in direct opposition or cancel out each other lead to poorer family dynamics. Couples’ coping strategies can be effective if they are similar or complementary, though. If partners use similar coping strategies, it might be easier to contend with stress. Coping efforts are coordinated and mutually reinforcing — that is, one partner’s efforts do not impede the other’s efforts. Complementary coping styles can be effective when they work together to reach a desired goal, e.g., by filling a coping “gap.” In fact, complementary strategies may be more effective than similar strategies because the couple, as a unit, has a broader coping repertoire. What if each partner has very different coping strategies?

Partners need to be aware of and talk about their own and their partner’s coping styles. The goal is to understand and respect each other’s ways of coping. Also, given that each has different coping styles, it is especially important to compromise, communicate about feelings to each other,

give each other time alone, and reassure each other of their love and concern. One relationship-focused coping strategy is protective

buffering, which involves “hiding concerns, denying worries and yielding to the partner to avoid disagreements.” Although protective buffering is ostensibly used to avoid disagreements and “protect” the relationship, it can negatively affect the person using it because the partner may feel constrained in expressing negative emotions or worries. However, protective buffering doesn’t appear to harm the partner being “protected.” In general, it is necessary to balance taking care of oneself and the partner — for both the individuals and for the relationship.

Effective Ways for the Whole Family to Cope Communicate with each other: Family members should

communicate constructively about the illness and treatment. They should use active and empathic listening skills and consider other family members’ perspectives. When sharing something sensitive, they should be mindful of what is being communicated, how it is being said, and when it is communicated in relation to the others’ level of reception. They need to talk openly about the chronic illness, but not allow talk of the illness to dominate the family members’ daily lives. Support each other: Effective support in a family

involves more than just “being supportive.” First, different people want different types of support: Some people want practical help, others want to be listened to, and still others want to know that the other family members think they are strong enough or capable enough to handle things. More support is not necessarily better. What kind of support the family member wants needs to be understood and then provided. Second, family members need to learn to ask for the kind of help or support that is wanted. Each member of the family wants some kind of support. Others tend to provide the kind of support they would want, but they may not know what the others want. It shouldn’t be assumed that family members can read each other’s minds. Increase and lean on social support outside of the

family. It is well-known that having a social support network outside of the family benefits all members of the family, both physically and psychologically. Sometimes, just knowing they are available if needed — even if they are not turned to — can be helpful. Integrate tasks of illness into the family’s daily routine.

This will help the family develop a coordinated, cooperative

Couples’ coping strategies can be effective if they are similar or complementary.http://www.IGLiving.com

25June-July 2012 www.IGLiving.com IG Living!

approach to dealing with the multiple demands of the illness and its treatment. Take care of family members’ physical and psychological

health. This is important for every family member. They need to learn relaxation or mediation techniques, exercise regularly, take some time alone, take time to get away from it all as a family, take walks and plan fun activities. Find the new normal: The goal is to move from crisis

management to incorporating the illness into the family’s daily lives. The fact is that life will never be exactly the same as it was before. Therefore, family members should challenge themselves to define what a “normal” family life is now. They should struggle to find ways to understand and make meaning of the experience.

When Should Help Be Sought? If a significant amount of time has passed (a year or

more), and “yes” can be said to one of the following, it may be time for a family to seek help: • When the chronic illness colors every aspect of a

family’s interactions. • When partners have different coping strategies and

cannot find common ground regarding the many demands of the illness. • When one or more family members routinely withdraws

into silence. This may or may not be helpful for the person, but it will not be helpful for the couple’s relationship or for the family. • When one or more family members routinely takes on a

reactive, anxiety-driven, tell-all communicative style of coping. • When a family is still stuck in the “crisis phase” and

not the ongoing process of adapting to a “new normal.” There are many different kinds of help out there. Family

therapy is particularly helpful early on. It has been shown to promote positive adjustment for families. It can help educate families about the person’s specific chronic illness and teach family members effective coping skills. Child or adolescent therapy can be used to educate

a child about his or her illness, and to teach stress-

management techniques to promote healthy coping skills and create a buffer against stress. Child therapy also is recommended to help children or adolescents express and learn to cope with their emotions (fear, anger, sadness) when a parent is ill. Group therapy or support groups can help caregivers,

patients or parents of children with a chronic illness by reducing stress. Certain types of couple therapy have been shown to be

very effective at improving couples’ coping skills, at helping couples learn to engage in relationship-focused coping strategies, and at improving communication and support skills. Couple therapy has been shown to improve patients’, caregivers’ and couple health and functioning. Make sure to find someone who is specifically trained in

the type of therapy that is being sought — not someone who “does it all.” Also, ask if the therapist is specifically qualified to work with families in which one member is chronically ill. You have unique challenges to face and need an expert.

Coping Is Possible Chronic illness can be extremely disruptive to family life.

But, it can be possible to maintain a homeostasis by using the many coping strategies available, as well as seeking help when necessary.

ERIKA LAWRENCE, PhD, is an associate professor in the department of psychology at the University of Iowa.

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3. Revenson, TA, et al. Couples Coping with Chronic Illness: What’s Gender Got to Do With It? In TA Revenson et al. (eds.), Couples Coping with Stress: Emerging Perspectives on Dyadic Coping (pp. 137-155). Washington, DC: American Psychological Association, 2005.

4. Kayser, K. Enhancing Dyadic Coping During a Time of Crisis: A Theory- Based Intervention with Breast Cancer Patients and Their Partners. In TA Revenson et al. (eds.), Couples Coping with Stress: Emerging Perspectives on Dyadic Coping (pp. 175-194). Washington, DC: American Psychological Association, 2005.

5. Coyne, JC, and Smith, DAF. Couples Coping with a Myocardial Infarction: A Contextual Perspective on Wives’ Distress. Journal of Personality and Social Psychology, 61, 404-412, 1991.

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Family therapy is particularly helpful

early on.http://www.IGLiving.com