Families, Systems, & Health 2014, Vol. 32, No. 3, 291–302
© 2014 American Psychological Association 1091-7527/14/$12.00 DOI: 10.1037/fsh0000018
Including the Family in Research Evaluating Integrated Care: A Call for Expanding Investigators’ Scope Beyond Single-Person Measures Tai J. Mendenhall, PhD, LMFT and Jaime E. Ballard, MS
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University of Minnesota As providers across the fields of behavioral- and biomedical- care advance efforts to include patients’ families in the care that they provide, we must also include families in the research that we conduct. Additional knowledge about families in treatment could help us screen families at risk for poor outcomes, design more appropriate family based interventions, and more completely assess the impact(s) of interventions on both patients and their families. In this account, we outline assessments that are useful in responding to this call. We consider tools that target general family functioning, that are sensitive to change and progress, and that are adaptable to common time- and administrative- constraints within medical settings. We highlight strengths and weaknesses within the pool of measures that are currently available, and offer suggestions and next-steps in instrument-design and development. Keywords: collaborative family health care, family measures, instrument design, health care research, integrated care
Providers across the fields of mental health (e.g., Psychology, Medical Family Therapy, Pastoral Counseling, Social Work) and biomedical care (e.g., Internal Medicine, Family Practice, Pediatrics) have been increasing their efforts to collaborate with each other since the early 1990s. This movement is, in large part, a response to our ever-increasing knowledge about how patients’ respective “parts”—like their minds and their bodies—are more connected than our respective disciplines’ training programs originally prepared us for. More than 70% of patients attending primary care visits do so with some kind of psychosocial comorbidity; it is thereby easy to understand how satisfaction with care correlates with the collaborative nature of the services that we provide (Linderman, Koff, Freitag, Min, & Vandivier, 2011; Miller, Kessler, Peek, & Kallenberg, 2010).
This article was published Online First April 21, 2014. Tai J. Mendenhall, PhD, LMFT and Jaime E. Ballard, MS, Department of Family Social Science, College of Education & Human Development, University of Minnesota. Correspondence concerning this article should be addressed to Tai J. Mendenhall, PhD, LMFT, University of Minnesota, Department of Family Social Science, 290 McNeal Hall, 1985 Buford Avenue, Saint Paul, MN 55108. E-mail: [email protected]
This natural development in our field(s) has evolved in synchrony with our increasing understanding of the reciprocal influences between family functioning and health. Physical illness takes a toll on both patients and their families. Family characteristics and support have a significant impact on patients’ emotional coping, adherence to treatment regimens, and appropriate health behaviors. Across multiple illnesses, several family characteristics (including family closeness, caregiver coping skills, mutually supportive relationships, clear family organization, and direct communication) are all linked to effective disease management (Weihs, Fisher, & Baird, 2002). Illness also impacts the families of the patient. Partners of adults with chronic diseases, for example, have an increased risk of certain illnesses and poor health behaviors (Fisher, 2006). Family interventions have significant positive effects for both the identified patient and their family. Empirical evidence has repeatedly demonstrated how purposeful attention to families within medical and/or psychotherapeutic interventions can lead to targeted improvements in identified patients’ physiological well-being. For example, family interventions have led to significant decreases in pain severity in patients suffering chronic pain, blood pressure and cardiovascular functioning in patients with hyper-
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tension, and joint swelling in those diagnosed with rheumatoid arthritis (Campbell & Patterson, 1995; Tyndall, 2010; Whitney et al., 2012). Family interventions also have significant positive effects on patients’ stress and self-efficacy (Martire, 2005; Northouse et al., 2013). A review of randomized, controlled trials including a family intervention revealed that although family interventions did not additionally decrease patients’ depression, anxiety, or physical disability, mixed family interventions did decrease patient mortality. Additionally, family interventions have positive impacts on the family members, decreasing their depression and overall sense of family burden (Martire, Lustig, Schulz, Miller, & Helgeson, 2004; Niemelä, Hakko, & Räsänen, 2010; Northouse et al., 2013). Our efforts to extend collaboration to actively include patients’ families in the care we provide, however, are considerably ahead of our efforts to evaluate the processes in which families affect clinical outcomes. Also lagging are our efforts to understand the impacts that our collaborative and integrated care has on families themselves. Calls have been made nationally and internationally to advance empirical support for the work that we do (e.g., Hodgson, Lamson, Mendenhall, & Crane, 2012; Mendenhall, Pratt, Phelps, & Baird, 2012). However, most research to-date has framed treatment outcomes within individually oriented contexts of dependent variables that are unique to identified patients alone. A recent review of more than one hundred integrated care studies confirmed this, wherein only a single investigation was recognized for its consideration of family outcomes (Martin, 2012). Integrating Family and Relationship Measures Into Health Care Research As we work to include patients’ families in the care that we provide, we must also include families in the research that we conduct. Additional knowledge about families in treatment could help screen families at risk for poor outcomes, design more appropriate family based interventions, and more completely assess the impact of interventions on both patients and their families. There are two types of assessments that could be helpful in integrated care assessments. The
first category includes assessments that identify general family strengths, areas of concern, and improvements in relationships. The second category includes assessments that can track family stress and coping over time. Assessments that identify general family strengths, areas of concern, and improvements in relationships can help practitioners customize care to the family. Several of these assessments also have screening functions to identify relationships in distress, and these could be adapted to medical care settings. There are many such assessments grounded in general principles of family functioning. In accord with extant literature regarding measures with well-established reliability and validity, Table 1 displays instruments that we could begin to integrate into our evaluations of integrated care. For a more detailed summary of these measures, see Alderfer et al. (2008) and Walsh (2011). The second category of assessments, those to effectively track family stress and coping, must meet several criteria to be effective in evaluating family interventions in medical settings. First, these assessments must be grounded in or adapted to theories sensitive to illness. An assessment that was not adapted to illness could fail to recognize the normative nature of stress associated with illness. Researchers are beginning to advance relational measures specifically designed to target family functioning within systems living with chronic illness. They assess content areas that include family members’ interpersonal cooperation and coping, social support and psychological stability, and understanding the health care system with which they are interacting. Relevant theoretical models could include stress vulnerability models (e.g., Zubin & Spring, 1977; Wallander, Thompson, & Alriksson-Schmidt, 2003; Trute, HiebertMurphy, & Levine, 2007), family caregiving and care receiving models (e.g., Newsom, 1999; Fletcher, Miaskowski, Given, & Schumacher, 2012), or family coping models (e.g., Bodenmann, 2005). Second, these assessments must be sensitive to change to track progress. Finally, they must meet time and administration constraints to be effectively implemented in medical settings. Such assessments are described in Table 2. More recent measures with preliminary validity evidence are outlined in the 2011 special issue of the Journal of Pediatric Psychology (Volume 36, Issue 5), which is devoted to
.75–.85 (interrater)
.67–.88
Family system as a whole
Families of young children
Circumplex Model of Marital and Family Systems
McMaster Model of Family Functioning
Circumplex Clinician Rating Scale (Olson, 1990; Olson, Russell, & Sprenkle, 1989). Mealtime Interaction Coding System (Dickstein et al., 1994; Spieth et al., 2001)
Task Accomplishment, Communication, Affective interaction, interpersonal involvement, behavior control, roles, overall functioning
n/a
.55–.85
Families (Children age 2 through young adult)
Social interactional, behavioral, and social contextual theories
n/a
n/a
n/a
.68–.87
Families (individuals currently living together)
McMaster Model of Family Functioning
Problem solving, communication, roles, affective responsiveness, affective involvement, behavior control, general functioning Individual characteristics, dyadic interaction, dyadic relationship, group interaction, parenting, individual problem-solving, group problem-solving Cohesion, adaptability, communication
Iowa Family Interaction Rating Scales (Melby et al., 1998)
n/a
.88–.94
Families
Family relationship functioning, observational Beavers System Model
Reliability
Family Competence and Family Style
Intended audience
Beavers Interactional Scales (Beavers & Hampson, 2000, 2003; Lee, Jager, Whiting, & Kwantes, 2000) McMaster Clinical Rating Scale (Miller et al., 1994)
Theoretical base
Domains assessed
Instrument title
Table 1 Instruments Grounded in Theories of Family Functioning Items
Variable (videotape 3 family meals)
3–4 hours (Clinician meets with family 3–4 times)
5–35 (By interaction type: discussion, activity, parentchild, family, couple, or siblings)
Not Stated
10
Time to complete (min)
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“Easy to learn and use”
Clinician
(table continues)
To acceptable level of reliability
200–240 hours
Trained interviewer
AV equipment
1.5–5 hours minimum
To acceptable level of reliability
Training to score
Trained interviewer
Administrator
Administered by
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE 293
Dyadic consensus, dyadic satisfaction, affectional expression, dyadic cohesion
Dyadic adjustment
.89–.95 for adults, .86–.94 for kids
Families
Process model of Task Accomplishment, family communication/affective functioning expression, role performance, control, values and norms
Dyadic Adjustment Scale (Spanier, 1976)
0.78
Families
Process model of family functioning
Cohesiveness, conflict, and expressiveness
.69–.86
Dyadic couples (Primary relationship in adults living together)
.73–.96
Romantic relationship functioning
All family members 12 and older
Family relationship functioning, self-report McMaster Model of Family Functioning
Reliability
Problem solving, communication, roles, affective responsiveness, affective involvement, behavior control, general functioning
Intended audience
Family Assessment Device (Epstein, Baldwin & Bishop, 1983; Kabacoff, Miller, Bishop, Epstein, & Keitner, 1990) Family Relationship Index of the Family Environment Scale (Holahan & Moos, 1983; Coty & Wallston, 2010) Family Assessment Measure-III (Skinner, Steinhaur, & Santa-Barbara, 1983)
Theoretical base
Domains assessed
Instrument title
Table 1 (continued)
32
42–50 per scale
27
60
Items
10
20–30
Not stated (approx. 10)
15–20
Time to complete (min)
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Self
Self
Self
Self
Administered by
Minimal
Moderate
Minimal
Moderate
Training to score
294 MENDENHALL AND BALLARD
Married couples
Marital adjustment
Inventory of Parent and Peer Attachment (Armsden & Greenberg, 1987) Issues Checklist (Robin & Foster, 1989; Alderfer et al., 2008) Revised Children’s Report of Parental Behavior Inventory (Schludermann & Schluddermann, 1988; Marsac & Alderfer, 2011) Parents and adolescent
Children & Parents
Bowlby’s attachment theory
Behavioral Family Systems
Conceptual model for parental behavior along dimensions of love v. hostility and autonomy v. control
Degree of mutual trust, quality of communication, extent of anger and alienation
Topics that stimulate conflict
Acceptance/rejection, psychological autonomy/control, firm/lax control
Later adolescent and influential peers or parents
.69–.89 for child, .60–78 for mother, .25–.75 for father
.82–.91
.86–.91
Parent–child relationship functioning
0.9
.72–.90
Couples who have been married or living together for at least half a year
Comprehensive model including cognitive, affective, communication/ interpersonal, structural/ developmental, and control domains
Affective, role orientation, problemsolving, aggression, family history of distress, time together, dissatisfaction with children, finances disagreement, child rearing conflict, sexual dissatisfaction, global distress Marital adjustment
Marital Satisfaction InventoryRevised (Snyder, 1997; Negy & Snyder, 2000)
Lock-Wallace Marital Adjustment Scale (Locke & Wallace, 1959)
Reliability
Intended audience
Theoretical base
Domains assessed
Instrument title
Table 1 (continued)
Not reported (approx. 20)
Not reported (approx. 10)
30
Not reported (approx. 10 per parent/ peer)
Not reported (Approx. 5–10)
25
Time to complete (min)
44
25 for each parent/ peer
15
150
Items
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Minimal
Moderate; Computerized reports available
Training to score
Self (Children & Parents)
Administrator
(table continues)
Minimal
Minimal
Self Minimal (Adolescent)
Self
Self
Administered by
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE 295
MENDENHALL AND BALLARD
Minimal
recent instruments that could meet the criteria outlined here.
20–25
Self (Parent or child)
Future Directions
Most researchers advocate the use of both observational and self-report measures. Note.
Weiss’ theory of social provisions Rivalry, conflict, relative power and status, and warmth/closeness. Sibling Relationship Questionnaire (Furman & Buhrmester, 1985; Derkman, Scholte, Van der Veld, & Engels, 2010)
Sibling relationship functioning Siblings age 9 or .58–.86 older
Theoretical base Domains assessed Instrument title
Table 1 (continued)
Intended audience
Reliability
45
Items
Time to complete (min)
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Administered by
Training to score
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Instruments grounded in theories sensitive to illness are still limited in number. We note three key deficiencies: instruments are lacking that address a) ill adults, b) health delivery systemfamily interactions, and c) impact(s) of mental health. First, few instruments are designed for the families of adults with illness. The majority of the measures in Table 2 are designed for families with an ill child. There is a lack of well-developed assessment tools for families that include caregivers for aging parents (Mulligan & Carpenter, 2010), couples with an ill partner, or children of an ill parent. The existing scales may be appropriate among these populations, but “lack depth in previous use” (Mulligan & Carpenter, 2010, p. 18). Second, the instruments in Table 2 focus primarily on family members’ interactions with each other, but not their interactions with and between others in the health delivery system. Additional research is needed on instruments in this area. A few instruments have been developed to assess caregivers’ satisfaction with the medical care provided for their family. One recent example is the CaregiverAssessed, Patient-Centered, Family-Focused Care Scale (Rose et al., 2007), which was designed for caregivers of frail, elderly veterans. However, such instruments primarily address satisfaction (with no other dimensions of interaction). Finally, these assessments may not address the roles of mental health in physical health care. Mental and physical illnesses are frequently comorbid (Dickey et al., 2002), and individual patients’ mental health has significant impacts on the family (Wang, Mansfield, Zhao, & Keitner, 2013). It is therefore important that integrated care researchers consider the roles of mental health within families. Current instruments need to be updated or augmented to reflect these relational phenomena. For example, few observational tools have been designed for or tested with parents with serious mental illness (Ostler, 2010).
46
n/a
.47–.93
.06–.99
Patients with medical illness
Health Care, Vocational, Domestic, Sexual Relationships, Extended Family, Social Environment, Psychological Distress Narrative coherence, narrative interaction, relationship beliefs Narrative Framework
Individual or multiple family members (of all varieties)
40
.50–.90 across scales
Mothers of children with physical disabilities (i.e., spina bifida, cerebral palsy)
Family Narrative Consortium Coding Scheme (Fiese et al., 1999)
42
.80–.96 across scales
Caregivers for children with illness
Communication, emotional functioning, medical care, role function
Pediatric Inventory for Parents (Streisand, Braniecki, Tercyak, & Kazak, 2001) Parents of Children with Disability Inventory (Noojin & Wallander, 1996) Psychosocial Adjustment to Illness Scale (Derogatis & Lopez, 1983) Risk and resilience factors influencing adaptation in mothers of children with disabilities Psychosocial adjustment to medical illness
33
.46–.90 across scales
Families of children with chronic illness or disability
Normative family behavior changes (positive or negative) in response to child’s illness Illness-specific measure of multidimensional parent stress
Familial-Social Impact, Personal Strain, Financial Impact, Mastery
Impact on Family (Stein & Jessop, 2003)
Concerns for: medical/legal needs, child, family, self
Items
Reliability
Intended audience
Theoretical base
Domains assessed
Instrument title
Table 2 Instruments Grounded in Theories Sensitive to Chronic Illness
Varies; any family interview
20–25
Not reported (approx. 10–15)
Not reported (approx. 20–25)
10
Time to complete (min)
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(table continues)
40 hours
Trained administrator.
Minimal
Self (Caregiver)
Minimal
Minimal
Self (Caregiver)
Self (Patient)
Minimal
Training to score
Self (Caregiver)
Administered by
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE 297
n/a
Families involved in palliative care
Wynne’s epigenetic model of family relational functioning
.52–.96
45
.71–.79
Total family perspective in treatment of cystic fibrosis, parental coping as a target for health-care professionals
Family integration, cooperation, optimistic definition; Social support, selfesteem, psychological stability; Understanding medical situation through communication Attachment, communication, decision making, and overall functioning
Coping Health Inventory for Parents (McCubbin et al., 1983)
Checklist of Family Relational Abilities (Wilkins, Quill, & King, 2009).
n/a
“Favorable”
Families of adolescents with chronic illness where onset disrupted normal activities Families of children with serious or chronic illness
Family coping (of family as a unit; Reiss & Oliveri, 1980)
Appraisal, ProblemSolving, Emotion Management
Family Coping Coding System (Hauser et al., 1988)
Items
Reliability
Intended audience
Theoretical base
Domains assessed
Instrument title
Table 2 (continued)
60
15–20
30–60
Time to complete (min)
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Clinician
Self (Caregiver)
Trained interviewer
Administered by
Not stated
Minimal
Trained coder
Training to score
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INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE
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Concluding Thoughts and Next Steps As we advance research regarding integrated care across clinical, operational, and financial arenas, we must remember to include patients’ families within our efforts. We must advance research using qualitative, quantitative, and mixed methods designs that include the family. Assessing dyadic and/or family functioning will better inform how to engage the people that are most important in our patients’ lives to support the benchmarks that we seek. Conversely, it is important to understand how integrated care that includes family members impacts the family members. Not attending to their needs along the way could translate into a variety of other problems down the road if patients’ support systems erode or fall apart. The good news here is that we do not have to invent a new wheel. The field of Family Studies and the practice of Medical Family Therapy have been evolving alongside the field of Collaborative Family Health Care (and within it, Integrated Primary Care and—more recently— the Health Care Home Movement). Established family and dyadic measures are already in place, and efforts to integrate these into understanding the intersections of relationships and health have been going on now for quite some time. As we mobilize this natural evolution to bridge advancements in health care (i.e., intervening—not just understanding) to tools and instruments in family studies like those outlined herein, we will create knowledge that further informs the systemically sensitive and innovative practices that drive us.
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INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE
Niemelä, M., Hakko, H., & Räsänen, S. (2010). A systematic narrative review of the studies on structured child-centered interventions for families with a parent with cancer. Psycho-Oncology, 19, 451– 461. doi:10.1002/pon.1620 Noojin, A., & Wallander, J. L. (1996). Development and evaluation of a measure of concerns related to raising a child with a physical disability. Journal of Pediatric Psychology, 21, 483– 498. doi:10.1093/ jpepsy/21.4.483 Northouse, L., Mood, D., Schafenacker, A., Kalemkerian, G., Zalupski, M., Lorusso, P., . . . Kershaw, T. (2013). Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. PsychoOncology, 22, 555–563. doi:10.1002/pon.3036 Olson, D. H. (1990). Family Circumplex Model: Theory, assessment, intervention. Japanese Journal of Family Psychology, 4, 55– 64. Retrieved from http://www.researchgate.net/journal/00215236_Shinrigaku_kenkyu_The_Japanese_journal_ of_psychology Olson, D. H., Russell, C. S., & Sprenkle, D. H. (1989). Circumplex model: Systemic assessment and treatment of families. Haworth Press: Binghmaton, NY. Ostler, T. (2010). Assessing parenting risk within the context of severe and persistent mental illness: Validating an observational measure for families with child protective service involvement. Infant Mental Health Journal, 31, 467– 485. doi:10.1002/ imhj.20267 Reiss, D., & Oliveri, M. E. (1980). Family paradigm and family coping: A proposal for linking the family’s intrinsic adaptive capacities to its responses to stress. Family Relations, 29, 431– 444. Robin, A. L., & Foster, S. L. (1989). Negotiating parent-adolescent conflict: A behavioral-family systems approach. New York, NY: Guilford Press. Rose, J. H., Bowman, K. F., O’Toole, E. E., Abbott, K., Love, T. E., Thomas, C., & Dawson, N. V. (2007). Caregiver objective burden and assessments of patient-centered, family-focused care for frail elderly veterans. The Gerontologist, 47(1), 21–33. Schludermann, E., & Schludermann, S. (1988). Questionnaire for Children and Youth (CRPBI30). Unpublished manuscript, University of Manitoba, Winnipeg, Canada. Skinner, H. A., Steinhauer, P. D., & Santa-Barbara, J. (1983). The Family Assessment Measure. Canadian Journal of Community Mental Health, 2, 91– 105. Retrieved from http://www.cjcmh.com/ journal/cjcmh Snyder, D. K. (1997). Manual for the Marital Satisfaction Inventory - Revised. Los Angeles, CA: Western Psychological Services.
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to inpatient care for adults with anorexia nervosa. European Eating Disorders Review, 20, 142–150. doi:10.1002/erv.1076 Wilkins, V. M., Quill, T. E., & King, D. A. (2009). Assessing families in palliative care: A pilot study of the Checklist of Family Relational Abilities. Journal of Palliative Medicine, 12, 517–519. doi: 10.1089/jpm.2009.0021
Zubin, J., & Spring, B. (1977). Vulnerability: A new view of schizophrenia. Journal of Abnormal Psychology, 86, 103–126. doi:10.1037/0021-843X.86 .2.103 Received July 10, 2013 Revision received December 5, 2013 Accepted December 14, 2013 䡲
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© 2014 American Psychological Association 1091-7527/14/$12.00 DOI: 10.1037/fsh0000018
Including the Family in Research Evaluating Integrated Care: A Call for Expanding Investigators’ Scope Beyond Single-Person Measures Tai J. Mendenhall, PhD, LMFT and Jaime E. Ballard, MS
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University of Minnesota As providers across the fields of behavioral- and biomedical- care advance efforts to include patients’ families in the care that they provide, we must also include families in the research that we conduct. Additional knowledge about families in treatment could help us screen families at risk for poor outcomes, design more appropriate family based interventions, and more completely assess the impact(s) of interventions on both patients and their families. In this account, we outline assessments that are useful in responding to this call. We consider tools that target general family functioning, that are sensitive to change and progress, and that are adaptable to common time- and administrative- constraints within medical settings. We highlight strengths and weaknesses within the pool of measures that are currently available, and offer suggestions and next-steps in instrument-design and development. Keywords: collaborative family health care, family measures, instrument design, health care research, integrated care
Providers across the fields of mental health (e.g., Psychology, Medical Family Therapy, Pastoral Counseling, Social Work) and biomedical care (e.g., Internal Medicine, Family Practice, Pediatrics) have been increasing their efforts to collaborate with each other since the early 1990s. This movement is, in large part, a response to our ever-increasing knowledge about how patients’ respective “parts”—like their minds and their bodies—are more connected than our respective disciplines’ training programs originally prepared us for. More than 70% of patients attending primary care visits do so with some kind of psychosocial comorbidity; it is thereby easy to understand how satisfaction with care correlates with the collaborative nature of the services that we provide (Linderman, Koff, Freitag, Min, & Vandivier, 2011; Miller, Kessler, Peek, & Kallenberg, 2010).
This article was published Online First April 21, 2014. Tai J. Mendenhall, PhD, LMFT and Jaime E. Ballard, MS, Department of Family Social Science, College of Education & Human Development, University of Minnesota. Correspondence concerning this article should be addressed to Tai J. Mendenhall, PhD, LMFT, University of Minnesota, Department of Family Social Science, 290 McNeal Hall, 1985 Buford Avenue, Saint Paul, MN 55108. E-mail: [email protected]
This natural development in our field(s) has evolved in synchrony with our increasing understanding of the reciprocal influences between family functioning and health. Physical illness takes a toll on both patients and their families. Family characteristics and support have a significant impact on patients’ emotional coping, adherence to treatment regimens, and appropriate health behaviors. Across multiple illnesses, several family characteristics (including family closeness, caregiver coping skills, mutually supportive relationships, clear family organization, and direct communication) are all linked to effective disease management (Weihs, Fisher, & Baird, 2002). Illness also impacts the families of the patient. Partners of adults with chronic diseases, for example, have an increased risk of certain illnesses and poor health behaviors (Fisher, 2006). Family interventions have significant positive effects for both the identified patient and their family. Empirical evidence has repeatedly demonstrated how purposeful attention to families within medical and/or psychotherapeutic interventions can lead to targeted improvements in identified patients’ physiological well-being. For example, family interventions have led to significant decreases in pain severity in patients suffering chronic pain, blood pressure and cardiovascular functioning in patients with hyper-
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tension, and joint swelling in those diagnosed with rheumatoid arthritis (Campbell & Patterson, 1995; Tyndall, 2010; Whitney et al., 2012). Family interventions also have significant positive effects on patients’ stress and self-efficacy (Martire, 2005; Northouse et al., 2013). A review of randomized, controlled trials including a family intervention revealed that although family interventions did not additionally decrease patients’ depression, anxiety, or physical disability, mixed family interventions did decrease patient mortality. Additionally, family interventions have positive impacts on the family members, decreasing their depression and overall sense of family burden (Martire, Lustig, Schulz, Miller, & Helgeson, 2004; Niemelä, Hakko, & Räsänen, 2010; Northouse et al., 2013). Our efforts to extend collaboration to actively include patients’ families in the care we provide, however, are considerably ahead of our efforts to evaluate the processes in which families affect clinical outcomes. Also lagging are our efforts to understand the impacts that our collaborative and integrated care has on families themselves. Calls have been made nationally and internationally to advance empirical support for the work that we do (e.g., Hodgson, Lamson, Mendenhall, & Crane, 2012; Mendenhall, Pratt, Phelps, & Baird, 2012). However, most research to-date has framed treatment outcomes within individually oriented contexts of dependent variables that are unique to identified patients alone. A recent review of more than one hundred integrated care studies confirmed this, wherein only a single investigation was recognized for its consideration of family outcomes (Martin, 2012). Integrating Family and Relationship Measures Into Health Care Research As we work to include patients’ families in the care that we provide, we must also include families in the research that we conduct. Additional knowledge about families in treatment could help screen families at risk for poor outcomes, design more appropriate family based interventions, and more completely assess the impact of interventions on both patients and their families. There are two types of assessments that could be helpful in integrated care assessments. The
first category includes assessments that identify general family strengths, areas of concern, and improvements in relationships. The second category includes assessments that can track family stress and coping over time. Assessments that identify general family strengths, areas of concern, and improvements in relationships can help practitioners customize care to the family. Several of these assessments also have screening functions to identify relationships in distress, and these could be adapted to medical care settings. There are many such assessments grounded in general principles of family functioning. In accord with extant literature regarding measures with well-established reliability and validity, Table 1 displays instruments that we could begin to integrate into our evaluations of integrated care. For a more detailed summary of these measures, see Alderfer et al. (2008) and Walsh (2011). The second category of assessments, those to effectively track family stress and coping, must meet several criteria to be effective in evaluating family interventions in medical settings. First, these assessments must be grounded in or adapted to theories sensitive to illness. An assessment that was not adapted to illness could fail to recognize the normative nature of stress associated with illness. Researchers are beginning to advance relational measures specifically designed to target family functioning within systems living with chronic illness. They assess content areas that include family members’ interpersonal cooperation and coping, social support and psychological stability, and understanding the health care system with which they are interacting. Relevant theoretical models could include stress vulnerability models (e.g., Zubin & Spring, 1977; Wallander, Thompson, & Alriksson-Schmidt, 2003; Trute, HiebertMurphy, & Levine, 2007), family caregiving and care receiving models (e.g., Newsom, 1999; Fletcher, Miaskowski, Given, & Schumacher, 2012), or family coping models (e.g., Bodenmann, 2005). Second, these assessments must be sensitive to change to track progress. Finally, they must meet time and administration constraints to be effectively implemented in medical settings. Such assessments are described in Table 2. More recent measures with preliminary validity evidence are outlined in the 2011 special issue of the Journal of Pediatric Psychology (Volume 36, Issue 5), which is devoted to
.75–.85 (interrater)
.67–.88
Family system as a whole
Families of young children
Circumplex Model of Marital and Family Systems
McMaster Model of Family Functioning
Circumplex Clinician Rating Scale (Olson, 1990; Olson, Russell, & Sprenkle, 1989). Mealtime Interaction Coding System (Dickstein et al., 1994; Spieth et al., 2001)
Task Accomplishment, Communication, Affective interaction, interpersonal involvement, behavior control, roles, overall functioning
n/a
.55–.85
Families (Children age 2 through young adult)
Social interactional, behavioral, and social contextual theories
n/a
n/a
n/a
.68–.87
Families (individuals currently living together)
McMaster Model of Family Functioning
Problem solving, communication, roles, affective responsiveness, affective involvement, behavior control, general functioning Individual characteristics, dyadic interaction, dyadic relationship, group interaction, parenting, individual problem-solving, group problem-solving Cohesion, adaptability, communication
Iowa Family Interaction Rating Scales (Melby et al., 1998)
n/a
.88–.94
Families
Family relationship functioning, observational Beavers System Model
Reliability
Family Competence and Family Style
Intended audience
Beavers Interactional Scales (Beavers & Hampson, 2000, 2003; Lee, Jager, Whiting, & Kwantes, 2000) McMaster Clinical Rating Scale (Miller et al., 1994)
Theoretical base
Domains assessed
Instrument title
Table 1 Instruments Grounded in Theories of Family Functioning Items
Variable (videotape 3 family meals)
3–4 hours (Clinician meets with family 3–4 times)
5–35 (By interaction type: discussion, activity, parentchild, family, couple, or siblings)
Not Stated
10
Time to complete (min)
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“Easy to learn and use”
Clinician
(table continues)
To acceptable level of reliability
200–240 hours
Trained interviewer
AV equipment
1.5–5 hours minimum
To acceptable level of reliability
Training to score
Trained interviewer
Administrator
Administered by
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE 293
Dyadic consensus, dyadic satisfaction, affectional expression, dyadic cohesion
Dyadic adjustment
.89–.95 for adults, .86–.94 for kids
Families
Process model of Task Accomplishment, family communication/affective functioning expression, role performance, control, values and norms
Dyadic Adjustment Scale (Spanier, 1976)
0.78
Families
Process model of family functioning
Cohesiveness, conflict, and expressiveness
.69–.86
Dyadic couples (Primary relationship in adults living together)
.73–.96
Romantic relationship functioning
All family members 12 and older
Family relationship functioning, self-report McMaster Model of Family Functioning
Reliability
Problem solving, communication, roles, affective responsiveness, affective involvement, behavior control, general functioning
Intended audience
Family Assessment Device (Epstein, Baldwin & Bishop, 1983; Kabacoff, Miller, Bishop, Epstein, & Keitner, 1990) Family Relationship Index of the Family Environment Scale (Holahan & Moos, 1983; Coty & Wallston, 2010) Family Assessment Measure-III (Skinner, Steinhaur, & Santa-Barbara, 1983)
Theoretical base
Domains assessed
Instrument title
Table 1 (continued)
32
42–50 per scale
27
60
Items
10
20–30
Not stated (approx. 10)
15–20
Time to complete (min)
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Self
Self
Self
Self
Administered by
Minimal
Moderate
Minimal
Moderate
Training to score
294 MENDENHALL AND BALLARD
Married couples
Marital adjustment
Inventory of Parent and Peer Attachment (Armsden & Greenberg, 1987) Issues Checklist (Robin & Foster, 1989; Alderfer et al., 2008) Revised Children’s Report of Parental Behavior Inventory (Schludermann & Schluddermann, 1988; Marsac & Alderfer, 2011) Parents and adolescent
Children & Parents
Bowlby’s attachment theory
Behavioral Family Systems
Conceptual model for parental behavior along dimensions of love v. hostility and autonomy v. control
Degree of mutual trust, quality of communication, extent of anger and alienation
Topics that stimulate conflict
Acceptance/rejection, psychological autonomy/control, firm/lax control
Later adolescent and influential peers or parents
.69–.89 for child, .60–78 for mother, .25–.75 for father
.82–.91
.86–.91
Parent–child relationship functioning
0.9
.72–.90
Couples who have been married or living together for at least half a year
Comprehensive model including cognitive, affective, communication/ interpersonal, structural/ developmental, and control domains
Affective, role orientation, problemsolving, aggression, family history of distress, time together, dissatisfaction with children, finances disagreement, child rearing conflict, sexual dissatisfaction, global distress Marital adjustment
Marital Satisfaction InventoryRevised (Snyder, 1997; Negy & Snyder, 2000)
Lock-Wallace Marital Adjustment Scale (Locke & Wallace, 1959)
Reliability
Intended audience
Theoretical base
Domains assessed
Instrument title
Table 1 (continued)
Not reported (approx. 20)
Not reported (approx. 10)
30
Not reported (approx. 10 per parent/ peer)
Not reported (Approx. 5–10)
25
Time to complete (min)
44
25 for each parent/ peer
15
150
Items
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Minimal
Moderate; Computerized reports available
Training to score
Self (Children & Parents)
Administrator
(table continues)
Minimal
Minimal
Self Minimal (Adolescent)
Self
Self
Administered by
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE 295
MENDENHALL AND BALLARD
Minimal
recent instruments that could meet the criteria outlined here.
20–25
Self (Parent or child)
Future Directions
Most researchers advocate the use of both observational and self-report measures. Note.
Weiss’ theory of social provisions Rivalry, conflict, relative power and status, and warmth/closeness. Sibling Relationship Questionnaire (Furman & Buhrmester, 1985; Derkman, Scholte, Van der Veld, & Engels, 2010)
Sibling relationship functioning Siblings age 9 or .58–.86 older
Theoretical base Domains assessed Instrument title
Table 1 (continued)
Intended audience
Reliability
45
Items
Time to complete (min)
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Administered by
Training to score
296
Instruments grounded in theories sensitive to illness are still limited in number. We note three key deficiencies: instruments are lacking that address a) ill adults, b) health delivery systemfamily interactions, and c) impact(s) of mental health. First, few instruments are designed for the families of adults with illness. The majority of the measures in Table 2 are designed for families with an ill child. There is a lack of well-developed assessment tools for families that include caregivers for aging parents (Mulligan & Carpenter, 2010), couples with an ill partner, or children of an ill parent. The existing scales may be appropriate among these populations, but “lack depth in previous use” (Mulligan & Carpenter, 2010, p. 18). Second, the instruments in Table 2 focus primarily on family members’ interactions with each other, but not their interactions with and between others in the health delivery system. Additional research is needed on instruments in this area. A few instruments have been developed to assess caregivers’ satisfaction with the medical care provided for their family. One recent example is the CaregiverAssessed, Patient-Centered, Family-Focused Care Scale (Rose et al., 2007), which was designed for caregivers of frail, elderly veterans. However, such instruments primarily address satisfaction (with no other dimensions of interaction). Finally, these assessments may not address the roles of mental health in physical health care. Mental and physical illnesses are frequently comorbid (Dickey et al., 2002), and individual patients’ mental health has significant impacts on the family (Wang, Mansfield, Zhao, & Keitner, 2013). It is therefore important that integrated care researchers consider the roles of mental health within families. Current instruments need to be updated or augmented to reflect these relational phenomena. For example, few observational tools have been designed for or tested with parents with serious mental illness (Ostler, 2010).
46
n/a
.47–.93
.06–.99
Patients with medical illness
Health Care, Vocational, Domestic, Sexual Relationships, Extended Family, Social Environment, Psychological Distress Narrative coherence, narrative interaction, relationship beliefs Narrative Framework
Individual or multiple family members (of all varieties)
40
.50–.90 across scales
Mothers of children with physical disabilities (i.e., spina bifida, cerebral palsy)
Family Narrative Consortium Coding Scheme (Fiese et al., 1999)
42
.80–.96 across scales
Caregivers for children with illness
Communication, emotional functioning, medical care, role function
Pediatric Inventory for Parents (Streisand, Braniecki, Tercyak, & Kazak, 2001) Parents of Children with Disability Inventory (Noojin & Wallander, 1996) Psychosocial Adjustment to Illness Scale (Derogatis & Lopez, 1983) Risk and resilience factors influencing adaptation in mothers of children with disabilities Psychosocial adjustment to medical illness
33
.46–.90 across scales
Families of children with chronic illness or disability
Normative family behavior changes (positive or negative) in response to child’s illness Illness-specific measure of multidimensional parent stress
Familial-Social Impact, Personal Strain, Financial Impact, Mastery
Impact on Family (Stein & Jessop, 2003)
Concerns for: medical/legal needs, child, family, self
Items
Reliability
Intended audience
Theoretical base
Domains assessed
Instrument title
Table 2 Instruments Grounded in Theories Sensitive to Chronic Illness
Varies; any family interview
20–25
Not reported (approx. 10–15)
Not reported (approx. 20–25)
10
Time to complete (min)
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(table continues)
40 hours
Trained administrator.
Minimal
Self (Caregiver)
Minimal
Minimal
Self (Caregiver)
Self (Patient)
Minimal
Training to score
Self (Caregiver)
Administered by
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE 297
n/a
Families involved in palliative care
Wynne’s epigenetic model of family relational functioning
.52–.96
45
.71–.79
Total family perspective in treatment of cystic fibrosis, parental coping as a target for health-care professionals
Family integration, cooperation, optimistic definition; Social support, selfesteem, psychological stability; Understanding medical situation through communication Attachment, communication, decision making, and overall functioning
Coping Health Inventory for Parents (McCubbin et al., 1983)
Checklist of Family Relational Abilities (Wilkins, Quill, & King, 2009).
n/a
“Favorable”
Families of adolescents with chronic illness where onset disrupted normal activities Families of children with serious or chronic illness
Family coping (of family as a unit; Reiss & Oliveri, 1980)
Appraisal, ProblemSolving, Emotion Management
Family Coping Coding System (Hauser et al., 1988)
Items
Reliability
Intended audience
Theoretical base
Domains assessed
Instrument title
Table 2 (continued)
60
15–20
30–60
Time to complete (min)
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Clinician
Self (Caregiver)
Trained interviewer
Administered by
Not stated
Minimal
Trained coder
Training to score
298 MENDENHALL AND BALLARD
INCLUDING THE FAMILY IN EVALUATING INTEGRATED CARE
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Concluding Thoughts and Next Steps As we advance research regarding integrated care across clinical, operational, and financial arenas, we must remember to include patients’ families within our efforts. We must advance research using qualitative, quantitative, and mixed methods designs that include the family. Assessing dyadic and/or family functioning will better inform how to engage the people that are most important in our patients’ lives to support the benchmarks that we seek. Conversely, it is important to understand how integrated care that includes family members impacts the family members. Not attending to their needs along the way could translate into a variety of other problems down the road if patients’ support systems erode or fall apart. The good news here is that we do not have to invent a new wheel. The field of Family Studies and the practice of Medical Family Therapy have been evolving alongside the field of Collaborative Family Health Care (and within it, Integrated Primary Care and—more recently— the Health Care Home Movement). Established family and dyadic measures are already in place, and efforts to integrate these into understanding the intersections of relationships and health have been going on now for quite some time. As we mobilize this natural evolution to bridge advancements in health care (i.e., intervening—not just understanding) to tools and instruments in family studies like those outlined herein, we will create knowledge that further informs the systemically sensitive and innovative practices that drive us.
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