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Do perceptions of family-centered care differ in older and younger family/caregivers of U.S. veterans?

Introduction: Family-centered care (FCC) involves partnering with patients and family/caregivers ("caregivers"), engaging them in decisions, and providing support. FCC may be measured across 3 dimensions: respect, collaboration, and support and needs likely vary by caregiver age. The objective was to examine and compare caregiver perceptions of FCC by age. Method: We mailed surveys to family/caregivers of Veterans. We collected demographics and measured respect, collaboration, and support using the Family-Centered Care Survey (FCCS). We calculated mean values and conducted bivariate comparisons, dichotomized by caregiver age ([greater than or equal to] 60 vs. <60), of demographics and FCC constructs. We completed thematic analysis on open-ended text. Results: Caregivers (n = 2,111) aged [greater than or equal to] 60 versus <60 were more likely to be spouses (81% vs. 62%, p < .0001) and White (74% vs. 50%, p < .0001). Overall FCC subscales values were high: respect (3.30), collaboration (3.07), and support (2.99). Older caregivers reported higher respect (3.36 vs. 3.22, p < .001), collaboration (3.12 vs. 2.98, p < .0001), and support (3.06 vs. 2.88, p < .0001). Qualitative analysis revealed collaboration, communication, hospital climate, and physical environment as important to FCC and supplemented quantitative findings on age. Examples highlighted both positive perceptions of FCC and areas of concern, such as feeling "unheard" and "like I am bothering providers," and needing "more comfortable seating" and "better parking." Discussion: Caregivers perceived high FCC levels at VA facilities, reporting highest on respect and lowest on support. Older caregivers perceived better FCC compared with younger caregivers. Several concerns identified can be used to target improvements to FCC including: improved support, collaboration between patient/ family/provider, and climate/environmental enhancements.

Keywords: family-centered care. Veterans, collaboration, caregivers, health care delivery

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In recent years more value has been placed on patient and family experiences with health care delivery (Institute for Healthcare Improvement [IHI], 2012). Exemplary delivery involves partnering with patients and family/caregivers as part of the health care team, engaging them in decisions, providing opportunities for communication and collaboration (Luxford, Safran, & Delbanco, 2011; Warren, 2012), and providing needed support (LaVela, Johnson, Miskevics, & Weaver, 2012). Family/caregivers (hereafter referred to as "caregivers") are typically family members or friends who provide unpaid assistance and participate in the care of a patient/ loved one in many ways (such as: accompanying to appointments, being present for procedures; Family Caregiver Alliance [FCA], 2012; Institute for Patient-and Family-Centered Care, 2010). Caregivers are positioned to have an intimate understanding of the patients' needs (Agency for Healthcare Research and Quality [AHRQ], 2015) and often have insight on contextual factors (Weiner et al., 2010) that can serve as practical barriers (such as lack of transportation or financial concerns), making their involvement in the health care delivery process vital. As such, efforts to involve caregivers, improve their experience with the health care system, and maintain their well-being need attention (LaVela & Ather, 2010).

In family-centered care (FCC), the patient and family are considered as a single unit of care (Shields & Tanner, 2004). FCC is defined as a mutually beneficial partnership based on (a) respect: individuals are acknowledged and valued; (b) collaboration: partnering in health care decisions; and (c) support: assisting with patient/caregiver dyad needs (Mitchell, Chaboyer, Burmeister, & Foster, 2009; Shields, Pratt & Hunter, 2006). Caregiver involvement in health care and decisions about their loved one helps support the caregiver while they pursue the best care for the patient and promotes sustainable commitment to the role, because burden is lessened when caregivers are a welcomed part of the health care team. Key features to caregiver engagement include: shared information and decision making, self-efficacy in health communication, negotiation, accessible care providers, recognizing caregivers' needs, and having the care provided fit well within the context of the family (Creasy, Lutz, Young, Ford, & Martz, 2013; Hoerger et al., 2013; Kuo et al., 2012a; Masters et al., 2012). These factors work together to provide better caregiver experiences and better patient health outcomes. FCC may lead to safer, better quality health care (Johnson, Abraham, & Shelton, 2009) and reduced health care costs (Shields et al., 2012).

There may be differences in experiences and perceptions of FCC among older and younger caregivers. Research has found older age to be a predictor of satisfaction with health care services (Bowling et al., 2012). A greater proportion of younger caregivers report having unmet needs within the health care system, including getting information about the patient's medical care and receiving less support than older caregivers (Girgis, Lambert, & Lecathelinais, 2011; Kim, Kashy, Spillers, & Evans, 2010; Potter et al., 2010; Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013). Understanding the perceptions of older and younger caregivers is important in order to meet the needs of increasingly diversified age groups of family/caregivers of Veterans (National Center for Veterans Analysis and Statistics [NCVAS], 2014). In this article, we use a mixed methods design to explore FCC in the VA. The objectives are: (a) to examine family/caregiver perceptions of FCC in VA facilities in which their Veteran loved one receives health care, and (b) to understand differences in, and compare perceptions of, FCC by caregiver age. This project was conducted as a quality improvement project (classified by VA Central IRB) to evaluate and understand patient- and FCC delivery in the VA health care system.

Method

Design

This was a national cross-sectional survey design in which we mailed a survey (containing closed- and open-ended questions) to caregivers of Veterans receiving health care at one of eight geographically dispersed VA health care facilities.

Participants

The family member, friend, or informal caregiver was identified by a Veteran patient as someone who helps them with their care in any way, such as providing transportation and/or attending appointments. Veterans were asked to provide the survey to their caregiver to complete. Caregivers were provided with a self-addressed, postage-paid envelope to return their survey.

Data Collection Instrument

Our survey instrument included FCC constructs, caregiver demographic characteristics, and an open-ended question about the caregiver experience in VA.

FCC Constructs

We modified the caregiver version of the Family-Centered Care Survey (FCCS) to measure respect, collaboration, and support (Aggarwal et al., 2009) in caregivers of veteran primary care patients. The FCCS is a publically available, reliable 20-item instrument developed by Shields and Tanner (2004). Early versions were used in pediatric settings (Shields & Tanner, 2004) and adult critical care (Mitchell et al., 2009). We modified the language slightly for relevance in an adult primary care setting, for example: "The staff includes my family in the care of my child" was changed to "The staff includes my family in the care of my loved one."

Measurement of FCC was comprised of three subscales: (a) respect (six items, such as "I feel like a visitor rather than a relative when I attend the unit"); (b) collaboration (nine items, such as "The staff give me honest information about the care that my relative may need"); and (c) support (five items, such as "All team members listen to my concerns"). A 4-point Likert scale (1 = never to 4 = always) was used to assess how often a stated event occurred. Fligher mean scores indicated perceptions of higher (better) levels of FCC.

Demographic Characteristics

We collected demographic characteristics of the caregiver, including: gender (male, female); race/ethnicity (White, Black/African American, Asian, Hispanic/Latino, Native Hawaiian/Other Pacific Islander, American Indian, or Alaska Native); highest level of education attained (did not complete elementary school, elementary (Grades 1-8), some high school (Grades 9-11), high school graduate (Grade 12 or GED), some college or technical school, college graduate (4 years or more); relationship to the patient (Veteran is my: spouse, child/grandchild, parent/ step parent/parent-in-law, other family member/ relative, partner/significant other/member of unmarried relationship, sibling, grandparent, friend, other), and age (continuous variable, dichotomized as less than 60 years of age [younger caregivers] vs. 60 years of age and older [older caregivers]). We dichotomized our caregiver group by the age of 60 to understand age differences; based on "older population" defined as aged 60 and older (World Health Organization [WHO], 2015), and individuals aged 60 and older classified as "older caregivers" (Lindberg, Owen, & Ulstad, 2013).

Free Text Item

To qualitatively examine FCC perceptions of caregivers of Veteran patients, we asked an open-ended question about the general VA experience: "We are interested in knowing more about your general experience with the VA, as the family member of a VA patient, in your own words."

Analyses

Quantitative. We examined demographic information and perceptions of FCC descriptively: overall and by age categories. We used chi-square and t tests to examine differences in demographics, mean individual FCC items, and FCC construct scores (respect, collaboration, and support) between older and younger caregivers. In addition, to assess potential differences in older/younger participant's perceptions of FCC when considering race, we ran three regression models, one for each FCC subscale, looking at the main effects of: age, race, and the Age X Race interaction term.

In absence of literature describing the handling of missing data for FCCS scoring, we established criteria for analysis of each subscale. Responses were required for at least four out of six questions for the respect scale; six out of nine for the collaboration scale; and three out of five for the support scale. If criteria were not met, responses were omitted from that subscale analysis. We used an alpha level of 0.05 to determine statistical significance. We performed statistical analyses on quantitative data using SAS, version 9.3 (SAS Institute Inc., Cary, NC).

Qualitative. We analyzed free text data using thematic analysis for each age group (60 and older vs. less than 60 years). Two qualitative researchers completed content coding on 25% of the sample (n = 388) to develop a preliminary codebook. Once the codebook was modified and coding reached saturation, overall interrater reliability was established by comparing a sample of independently coded responses (n = 100); agreement was 92%. Further, interrater reliability was calculated for each code using the same sample (n = 100), yielding an average Cohen's Kappa of 0.88. A third coder acted as a tiebreaker to make determinations in the few cases of disagreements; the three coders met and discussed until 100% agreement was achieved. We coded the remaining responses using the established codebook. Final analysis was completed using NVivo version 10 qualitative data analysis software (QSR International, Doncaster, Victoria, Australia).

Results

Participation

We received 2,261 surveys from caregivers. Because not all veteran patients needed or identified a caregiver who regularly assists them with their health care, a true denominator was not ascertainable. We limited analyses to respondents with completed age data (n = 2,111); 93% had data available for quantitative analyses. Of the 2,111 caregivers for whom quantitative analyses were conducted, 60% were aged 60 years and older (n = 1,264) and the remaining 40% were less than 60 years of age (n = 847).

Of the 2,111 with age data, 1,555 provided a free text response to the open-ended general caregiver experience question (74% participation rate). Of these 1,555 caregivers for whom qualitative data analyses were conducted, 61% were aged 60 years and older (n = 944) and the remaining 39% were less than 60 (n = 611; see Figure 1).

Caregiver Demographic Characteristics

Overall, most caregivers were female (81%), White (64%), and had at least some college education (66%). A greater proportion of caregivers aged 60 years and older (vs. less than 60) were White (74% vs. 50%, p < .0001); did not attend college (36% vs. 31%, p = .0099), and were a spouse/partner/significant other to the Veteran (81% vs. 62%, p < .0001; see Table 1).

Family-Centered Care Survey Constructs

For most FCCS individual items, older caregivers had significantly higher scores compared with their younger counterparts (see Table 2). There were two exceptions that showed no differences by age; these also happened to be the lowest scoring items across all individual FCCS items. The items, each scoring lower than 2.5 (on 1-4 scale) included: "I feel like a visitor rather than a caregiver when attending the hospital/outpatient clinic" (M = 2.46) and "I feel overwhelmed by the information given to me about my loved one" (M = 2.13).

Survey Subscales

Overall mean subscale values were 3.30 for respect (n = 2,058), 3.07 for collaboration (n = 1,981), and 2.99 for support (n = 1,923). Older caregivers, compared with younger, reported higher values of FCC across all three subscales: respect (3.36 vs. 3.22, p < .0001); collaboration (3.12 vs. 2.98, p < .0001); and support (3.06 vs. 2.88, p < .0001). FCC scores did not differ by race for respect and support and although those who were white had lower perceptions of collaboration--the Age X Race interaction was not statistically significant for any of the three subscales, indicating that age effects were not dependent upon race for any of the FCC constructs. (see Figure 2)

Open-Ended Text

Responses to the item asking participants about their general experience with the VA as the family member/caregiver of a Veteran patient, analyzed by age categories, yielded the following major themes in both age groups: collaboration and communication, and several subthemes associated with each. Due to the dynamic relationship between collaboration and communication, there were some commonalities across themes and subthemes. Two additional themes emerged about general FCC experience focused on hospital climate and physical environment. Table 3 shows the frequency of responses mentioned by participants for themes and subthemes for both age categories along with example quotes.

[FIGURE 1 OMITTED]

Collaboration

Collaboration was a common theme identified by caregivers. Within collaboration, two subthemes emerged from participant responses: shared information and shared decision making.

Shared information. Across both age groups, participants provided examples of negative and positive experiences about information sharing. Respondents expressed a desire to be informed at different points before, during, and after the patient's encounters, each representing times at which caregivers need to feel informed and need support.

Caregivers of all ages noted that sharing information should be a mutual effort between provider and caregiver. Participants stressed the importance of the health care team listening to, and actually hearing the caregiver out, including providers inquiring about the patient from the caregiver's perspective. This was viewed as an opportunity to learn about patient needs, that caregivers felt was sometimes missed.

Younger caregivers stressed the importance of having information shared with them about the patient's general health care and treatment plans. Younger caregivers also expressed the need for health providers to acknowledge and understand their level of involvement and commitment. Older caregivers discussed shared information in the context of specific surgeries and hospital discharges more than their younger counterparts. The experiences they described, in general, were positive when thorough and detailed information was shared. There were, however, a few examples where older caregivers stressed the desire for more information. The older cohort also stressed the importance of feeling listened to.

Shared decision making. Shared decision making was recognized across age categories as an important and necessary component of successful collaboration.

Communication

The communication theme had several important subthemes emerge; these included general interactions with staff, feelings of exclusion, and feeling welcomed.

General interactions with staff were discussed by caregivers across age categories as hospital staff being "usually friendly," "professional," while sometimes encountering "very busy people who are trying their best." Fewer mentioned encountering "unfriendly people" or "uncaring" staff. Negative interactions with staff typically referred to a specific person or clinic with which the caregiver had a bad experience.

Both younger and older cohorts similarly reported interactions with staff positively, using descriptions such as: helpful, understanding, and informative. Likewise, the younger and older caregivers shared the same general frustrations such as occasionally facing unfriendly staff (usually nonmedical) and encountering staff that are not helpful/sympathetic when waiting room delays are long.

Communication with the care team was recognized as necessary for patient/family inclusion in the delivery of care. Feelings of exclusion were discussed by several respondents. This involved a lack of rapport created primarily by lack of comfort in approaching providers with questions as well as in providers asking caregivers for feedback on the patient's needs. Younger and older caregivers described feelings of exclusion in similar ways, describing health providers as not being interested in: "my questions, understanding my perspective, or listening to my opinion." Participants also described encounters with medical staff that made them feel "not as important" as their loved one.

However, feeling welcomed also emerged as an important component of communication. Caregivers in both age groups mentioned feeling welcomed more frequently than feeling excluded. They also shared similar sentiments of how this can be expressed such as: staff addressing the caregiver specifically and listening to concerns, inviting the caregiver into the room, and communicating information to both the caregiver and the patient.

Hospital Climate

Caregivers discussed the hospital climate as the overall atmosphere in the facility, including how they and their loved one are treated as individuals, the overall disposition of staff, and the ongoing improvements to the facility.

The younger cohort noted how hospital climate influenced their experience as a caregiver. They focused on issues with staff being busy and its effect on treatment:
   Residents [are] so over-worked, some are less effective
   when dealing with patients--even condescending and
   rude, wouldn't listen to my concerns, not impressed!


The older cohort discussed the impact of the hospital climate on their general experience as a caregiver. They focused on the importance of VA cultivating a caring environment:
   They have really treated my son with the utmost of care
   and respect. They care deeply for him and for me as his
   mother.


Physical Environment

Although fewer participants mentioned the physical environment, when discussed, the focus was on (a) the overall aesthetics of the facility, including design and layout; and (b) accessibility, in general and specific things such as parking. Topics addressed by the younger cohort included waiting areas and facility layout; while the older cohort focused on things such as: parking issues, cleanliness, and comfort.

Discussion

The mixed methods data from this study offer a novel perspective on perceptions of FCC within a large integrated health care system. We found that caregivers reported high perceptions of key components of FCC (Shields et al., 2012) in their VA primary care experiences; specifically with regard to respect and collaboration, but additional attention may be warranted in the provision of support. Understanding the support needs for caregivers is necessary to maximize their role as caregiver (Pickard, 2004), yet providing this support is an area that has not been successfully addressed (Bastawrous, 2013).

Our findings show that caregivers would benefit from interactions with a health care team that is familiar with their loved one's special needs, listens to their concerns, understands what the family is going through, and provides care continuity. Literature indicates that caregivers who are active in their loved one's care have higher perceptions of FCC (Mitchell et al., 2009). Similarly, a FCC culture may improve caregivers' participation in care planning and decision making, sharing of medical information by caregivers, and may augment perceptions that health providers are actively listening and showing respect (Kuo et al., 2012b).

Older caregivers of Veterans reported higher perceptions of respect, collaboration, and support than their younger counterparts (independent of race). It is possible that younger caregivers of veterans have lower perceptions of health care delivery experiences due to the influence that providing informal care has on their well-being. Previous research suggests that caregivers aged 60 or younger reported needing more support (McNamara & Rosenwax, 2010).

Caregivers' free text responses supplemented and enhanced our understanding of their FCC perspectives. These qualitative data provided examples highlighting collaboration and communication as key factors influencing FCC culture, and identified hospital climate and physical environment as influences of FCC perceptions, although to a lesser degree.

Previous studies have reported the desire of both patients and caregivers to be involved in the health providers' efforts to collaborate and coordinate across settings and services (Bechtel & Ness, 2010). Information sharing and shared decision making are recommended components of FCC (Johnson et al., 2008), but family perspectives have not been widely studied. Our caregiver cohort stressed the importance of shared information, being involved in decision making, having pleasant interactions with staff, and feeling welcomed and not excluded for successful collaboration and communication. Prior literature has identified collaboration and communication as important to caregiver needs and overall perceptions of FCC, but is often lacking (Bamm & Rosenbaum, 2008; Davidson et al., 2007; Shields & Tanner, 2004).

In our cohort, younger caregivers focused on the need for general health information and needing to feel acknowledged for their involvement and commitment. Older caregivers focused more on specific details about treatment and discharge plans, and the positive influence that listening and being listened to has on their satisfaction. This is consistent with literature indicating older individuals are generally more satisfied with health care services and complain less (Rahmqvist & Bara, 2010). Collectively, our findings suggest efforts to improve collaboration and communication as part of FCC may be enhanced thorough information sharing, shared decision making, and positive (welcoming) interactions with health care staff that may need to be tailored to the distinct needs of caregivers of varying ages.

Qualitative findings also revealed caregivers' perceptions of hospital climate and elements of the physical environment as contributing factors to FCC. Navigating a complex facility was cited as a source of frustration, and older caregivers, specifically, expressed concerns with parking and the need for comfort while in the hospital setting. Although the physical environment is emphasized as an important component of patient-centered care (Becker & Douglass, 2008), it has received less attention with regard to FCC delivery for caregivers of adult primary care patients.

Our self-reported study data may result in recall and nonresponse bias which may produce imprecise FCC values. As not all veterans have caregivers who assist their care, we do not have a true denominator/response rate. Data may have been collected from a caregiver who plays a minor role in the patient's care and may not be exposed to FCC in the health care setting. We adapted the FCCS to fit the adult study cohort, but validity was not tested. Despite these limitations, our study highlighted some unmet needs and a disparity between older and younger caregiver FCC perceptions.

Acknowledging the contribution of caregivers of Veterans, VA has made efforts to provide help (financial assistance, training, respite care) through different initiatives (Glynn, 2013), such as the "Caregivers and Veterans Omnibus Health Services Act of 2010" (Veteran Affairs, 2015). Although VA is doing very well in the provision of FCC, additional efforts may be aimed toward younger caregivers, addressing issues related to "support," and expanding efforts for better information sharing, collaboration between patient/family/providers, and climate/environmental enhancements. Additional support should be provided to caregivers of veterans, with targeted efforts in more vulnerable groups (McNamara & Rosenwax, 2010), such as younger caregivers. Efforts to develop and expand partnerships between health care providers, patients, and caregivers are warranted. Future research may focus on collecting family perspectives of FCC components, such as information sharing and shared decision making, and using this information to develop tailored health care services to meet the needs of diverse caregiver groups, such as those of varying age.

http://dx.doi.org/10.1037/fsh0000173

Sherri L. La Vela, PhD. MBA. MPH

Hines VA Hospital, Hines, Illinois, and Feinberg School of Medicine, Northwestern University

Stephanie Turcios, MPH, Alex Malhiot, MS, Bella Etingen, MA, Jennifer N. Hill, MA, and Scott Miskevics, BS

Hines VA Hospital, Hines, Illinois

This article was published Online First March 17, 2016.

Sherri L. LaVela, PhD, MBA, MPH, Center of Innovation for Complex Chronic Healthcare, Health Services Research & Development, Department of Veterans Affairs, Hines VA Hospital, Hines, Illinois; Center for Evaluation of Practices and Experiences of Patient-Centered Care (CEPEP), Department of Veterans Affairs, Hines VA Hospital; Center for Healthcare Studies, Institute for Public Health and Medicine, General Internal Medicine and Geriatrics, Feinberg School of Medicine, Northwestern University; Stephanie Turcios, MPH, Alex Malhiot, MS, Bella Etingen, MA, Jennifer N. Hill, MA, and Scott Miskevics, BS, Center of Innovation for Complex Chronic Healthcare, Health Services Research & Development, Department of Veterans Affairs, Hines VA Hospital, and Center for Evaluation of Practices and Experiences of Patient-Centered Care (CEPEP), Department of Veterans Affairs, Hines VA Hospital.

This material is based on work supported by the Department of Veterans Affairs. Veterans Health Administration, Office of Research and Development, Health Services Research and Development, Quality Enhancement Research Initiative & Office of Patient-Centered Care and Cultural Transformation (PEC 13-002; PI: LaVela). The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

Correspondence concerning this article should be addressed to Sherri L. LaVela, PhD, MBA, MPH, Center of Innovation for Complex Chronic Healthcare, Health Services Research & Development, Department of Veterans Affairs, Edward Hines, Jr. VA Hospital, 151 -H, Building 1, Office D-312, 5th Avenue & Roosevelt Road, Hines, IL 60141. E-mail: Sherri.LaVela@va.gov

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Received April 28, 2015

Revision received October 2, 2015

Accepted October 8, 2015
Table 1
Family/Caregiver Demographics/Characteristics (n = 2,111)

Family/Caregiver              Overall %     Family/caregivers
Demographic/Characteristic   (n = 2,111)   aged < 60 (n = 847)
Variables

Relationship to care
recipient (n = 2,051)
  Spouse/partner/               73.33             62.37
    significant other
  All other                     26.67             37.63
    relationships (1)

Gender (n = 2,090)
  Female                        80.86             80.12

Race (n = 2,086)
  White                         64.38             49.94
  Black                         19.42             28.83
  Hispanic                      12.18             15.80
  Other (2)                     4.03              5.43

Education (n = 2,103)
  No college (3)                34.14             30.88
  Some college/college          65.86             69.12
    graduate

Family/Caregiver             Family/caregivers    p-value
Demographic/Characteristic   aged [greater than
Variables                     or equal to] 60
                                (n = 1,264)

Relationship to care                              <.0001
recipient (n = 2,051)
  Spouse/partner/                  80.89
    significant other
  All other                        19.11
    relationships (1)

Gender (n = 2,090)                                  .48
  Female                           81.36

Race (n = 2,086)                                  <.0001
  White                            73.91          <.0001
  Black                            13.21          <.0001
  Hispanic                          9.79          <.0001
  Other (2)                         3.10            .01

Education (n = 2,103)                              .0099
  No college (3)                   36.32
  Some college/college             63.68
    graduate

(1) All other relationships: child/grandchild, parent/step
parent/parent-in-law, other family member/relative, sibling,
grandparent, friend. (2) Other: Asian, Native Hawaiian-Other
Pacific Islander, American Indian, or Alaska Native. (3) No
college: did not complete elementary school, elementary (Grades
1-8), some high school (Grades 9-11), high school graduate (Grade
12 or GED).

Table 2
Family-Centered Care Survey (FCCS) (Individual Items) * (n = 2,111)

Mean (Standard Deviation)              Overall %    Family/caregivers
                                      (n = 2,111)       aged < 60
                                                        (n = 847)

Respect

When I come to the hospital or        3.41 (.86)       3.25 (.91)
outpatient clinic, I feel I am
welcome as an informal caregiver
to be there, (n = 2,051)

Other members of my family are        3.47 (.85)       3.38 (.88)
welcome to attend with me at
the hospital or outpatient clinic.
(n = 1,940)

I am able to be with my loved one     3.44 (.84)       3.36 (.85)
(the patient) through all
assessments. (n = 2,033)

I have the right to question          3.43 (.88)       3.30 (.94)
medical and allied health
recommendations about my
loved one as much as I want.
(n = 2,035)

I feel like a visitor rather than a   2.46(1.20)       2.51 (1.14)
caregiver when attending the
hospital/outpatient clinic, (n =
1,973)

Did you feel your loved one's         3.58 (.73)       3.50 (.78)
assessments were carried out
with privacy and
confidentiality? (n = 2.041)

Collaboration

I feel prepared for discharge/        3.21 (.91)       3.10 (.91)
referral to other community
services after my loved one's
discharge from the hospital/
outpatient department. (n = 1,872)

The staff gave me honest              3.35 (.90)       3.27 (.90)
information about the care that my
loved one may need. (n = 1,969)

I know whom to call after 1 get       3.14(1.04)       3.04(1.07)
home if I need help or
reassurance. (n = 1,974)

When decisions are being made         3.10(1.03)       2.97 (1.03)
about care, the statt includes me.
(n = 1.963)

I am being taught what I need to      3.06 0.03)       2.97(1.04)
know about the care my loved
one may need. (n = 1,934)

I know the name of the physician/     3.21 (.99)       3.07 (1.03)
surgeon with primary
responsibility for my loved one's
care, (n = 1,970)

I can easily understand the written   3.31 (.86)       3.20 (.91)
material that has been given to
me. (n = 1,940)

The staff includes my family in the   3.12(1.02)       3.05(1.02)
care of my loved one. (n = 1,881)

I feel overwhelmed by the             2.13(1.09)       2.15 (1.07)
information given to me about
my loved one. (n = 1,935)

Support

Are all team members familiar with    3.06 (.92)       2.96 (.94)
your loved one's special needs?
(n = 1,912)

All team members listen to my         3.11 (.96)       2.99 (.98)
concerns. (n = 1,927)

Whenever possible I get to see the    2.97 (.99)       2.85 (1.02)
same team member for each area
of care. (n = 1,906)

The staff knows who my important      2.82(1.07)       2.74 0.09)
support people are. (n = 1,869)

The staff understand what my          2.97(1.01)       2.84(1.03)
family and I are going through.
(n = 1,898)

Mean (Standard Deviation)               Family/caregivers      p-value
                                        aged [greater than
                                         or equal to] 60
                                           (n = 1,264)

Respect

When I come to the hospital or              3.52 (.80)         <.0001
outpatient clinic, I feel I am
welcome as an informal caregiver
to be there, (n = 2,051)

Other members of my family are              3.53 (.81)          .0001
welcome to attend with me at
the hospital or outpatient clinic.
(n = 1,940)

I am able to be with my loved one           3.49 (.82)          .0005
(the patient) through all
assessments. (n = 2,033)

I have the right to question                3.52 (.82)         <.0001
medical and allied health
recommendations about my
loved one as much as I want.
(n = 2,035)

I feel like a visitor rather than a         2.43(1.23)          .1252
caregiver when attending the
hospital/outpatient clinic, (n =
1.973)

Did you feel your loved one's               3.64 (.68)         <.0001
assessments were carried out
with privacy and
confidentiality? (n = 2.041)

Collaboration

I feel prepared for discharge/              3.29 (.90)         <.0001
referral to other community
services after my loved one's
discharge from the hospital/
outpatient department. (n = 1,872)

The staff gave me honest                    3.41 (.90)          .0006
information about the care that my
loved one may need. (n = 1,969)

I know whom to call after 1 get             3.22(1.01)          .0001
home if I need help or
reassurance. (n = 1,974)

When decisions are being made               3.19(1.01)         <.0001
about care, the statt includes me.
(n = 1.963)

I am being taught what I need to           3.13 (1.02)          .0009
know about the care my loved
one may need. (n = 1,934)

I know the name of the physician/           3.30 (.95)         <.0001
surgeon with primary
responsibility for my loved one's
care, (n = 1,970)

I can easily understand the written         3.38 (.81)         <.0001
material that has been given to
me. (n = 1,940)

The staff includes my family in the         3.17(1.02)          .0096
care of my loved one. (n = 1,881)

I feel overwhelmed by the                  2.11 (1.11)          .3971
information given to me about
my loved one. (n = 1,935)

Support

Are all team members familiar with          3.12 (.89)          .0001
your loved one's special needs?
(n = 1,912)

All team members listen to my               3.20 (.93)         <.0001
concerns. (n = 1,927)

Whenever possible I get to see the          3.05 (.95)         <.0001
same team member for each area
of care. (n = 1,906)

The staff knows who my important           2.88 (1.05)          .0076
support people are. (n = 1,869)

The staff understand what my                3.06 (.99)         <.0001
family and I are going through.
(n = 1,898)

* Scale range 1.00-4.00.

Table 3
Thematic Coding and Illustrative Example Quotes by Theme and
Overall and by Age Group

Theme/Subtheme            # of          Age
(definition)           Respondents     Group        Sample Quotes

Collaboration              159
(Between caregivers
and providers)

Shared information                   All ages    "... [Provider] has
(Provider keeps                                  caused me much
caregiver informed                               anger. frustration,
on patient health/                               and anxiety with the
care needs).                                     care ... not
                                                 provided for my
                                                 loved one and
                                                 refuses to listen to
                                                 anything I try to
                                                 tell about the man I
                                                 have loved, lived
                                                 with, and cared for
                                                 in the past 21 years
                                                 ..."

                                     <60 years   "Overall, I feel
                                                 like they do a
                                                 pretty good job
                                                 including me in
                                                 sharing important
                                                 information about
                                                 what is going on.

                                                 "I feel like I'm not
                                                 included in all
                                                 aspects of his plan
                                                 of care and at times
                                                 have been talked to
                                                 and had information
                                                 withheld ... I
                                                 totally understand
                                                 how busy the RN[']s
                                                 are, but they need
                                                 to take that extra
                                                 minute to evaluate
                                                 the caregiver's
                                                 level of commitment/
                                                 understanding to
                                                 their family members
                                                 care."

                                     [greater    "There are areas
                                     than or     where information
                                     equal to]   (tests, etc.) is not
                                     60 years    explained for
                                                 sometimes months ...
                                                 this leaves you
                                                 worried ... even if
                                                 we call, we may not
                                                 hear for days,
                                                 weeks, or not until
                                                 next appointment."

                                                 "During my husband's
                                                 illnesses, I felt
                                                 really enlightened
                                                 about what was going
                                                 on, what to expect,
                                                 and what to do after
                                                 surgery. So far I'm
                                                 perfectly
                                                 satisfied."

                                                 "The VA hospital has
                                                 always taken time
                                                 and explained every
                                                 step when my husband
                                                 had his surgeries
                                                 and took so much
                                                 care of him during
                                                 and after surgery."

Shared decision                      All ages    "VA needs to be more
making (Caregiver                                patient with
involvement in the                               caregiver or love[d]
decision-making                                  ones when explaining
process for                                      and include them in
treatment                                        decision-making."
decisions).
                                     <60 years   "All doctors were
                                                 very nice and
                                                 explained everything
                                                 before it happened.
                                                 Let us know how
                                                 things were as
                                                 tests[s] were
                                                 performed. Answered
                                                 all our questions."

                                                 "I imagine because
                                                 of privacy issues,
                                                 family is not
                                                 consulted with for
                                                 patients with mental
                                                 health concerns. I
                                                 don't know the
                                                 extent of treatment
                                                 ... except what my
                                                 spouse tells me."

                                     [greater    "I have always been
                                     than or     treated with respect
                                     equal to]   and I feel
                                     60 years    comfortable asking
                                                 questions and giving
                                                 my opinion about
                                                 decisions."

                                                 "When [my loved one]
                                                 is in surgery, it
                                                 would [be] nice to
                                                 be advised ... how
                                                 all is going or did
                                                 patient go to
                                                 recovery room. Did
                                                 you forget someone's
                                                 waiting?"

                                                 "The staff listen[s]
                                                 and cares about my
                                                 input. It gives me
                                                 the confidence and
                                                 help needed for 24
                                                 [hour] caregiving
                                                 ..."

Communication              266
(Between caregivers
and providers)

Interactions with                    All ages    "Visits with my
staff (Includes                                  husband have been
interaction with                                 positive. The staff
providers.                                       is helpful and
volunteers, front-                               friendly."
line staff).
                                                 "The staff are
                                                 friendly and
                                                 informative when it
                                                 comes to my
                                                 husband's needs ...
                                                 learned from staff
                                                 how I can better his
                                                 health ..."

                                                 "Had a very bad
                                                 experience at the
                                                 clinic in [VA
                                                 facility]. Staff was
                                                 rude and uncaring."

                                     <60 years   "I'm glad the VA
                                                 takes care of my
                                                 husband; [it is a]
                                                 great facility;
                                                 thorough care and
                                                 treatment; polite,
                                                 professional staff/
                                                 employees."

                                                 "Mostly see smiles
                                                 from employees, but
                                                 you also see a lot
                                                 of indifference and
                                                 treating the vets
                                                 basically as a
                                                 number!"

                                     [greater    "... a positive
                                     than or     experience. Staff
                                     equal to]   and others are
                                     60 years    sincere, caring and
                                                 knowledgeable."

                                                 "I have much more
                                                 confidence in the
                                                 radiology
                                                 department, where
                                                 communication was
                                                 excellent and the
                                                 staff caring and
                                                 compassionate."

                                                 "The clerks are
                                                 courteous enough,
                                                 but some of the
                                                 doctors are very
                                                 short and seem to
                                                 ignore the problem
                                                 of the patient."

Feeling excluded                     All ages    "... the doctors
(Caregiver not                                   never want to hear
informed; nor asked                              what I have to say
for their feedback).                             ... When I try to
                                                 ask questions they
                                                 make me feel like I
                                                 am bothering them
                                                 ..."

                                     <60 years   "He was admitted to
                                                 the substance abuse
                                                 ward to detox. I
                                                 feel he got great
                                                 help from the
                                                 doctors and nurses,
                                                 but they, not one
                                                 time, advised me
                                                 (the wife)."

                                     [greater    "At first I was
                                     than or     treated as a second
                                     equal to]   class citizen, like
                                     60 years    I was not there, and
                                                 they talk to my
                                                 spouse and act like
                                                 I was not there."

Feeling welcomed                     All ages    "I never had problem
(Caregiver feels                                 when I came with my
welcomed as a                                    husband to his
participant in                                   appointments
patient care).                                   everybody is always
                                                 nice to me. I feel
                                                 welcome."

                                     <60 years   "All of the team
                                                 members make feel
                                                 welcomed every time
                                                 I go."

                                     [greater    "I have always had a
                                     than or     good experience with
                                     equal to]   the staff at the VA.
                                     60 years    I have been asked
                                                 what they can do for
                                                 me to be
                                                 comfortable."

Hospital climate           91        <60 years   "Excellent caring
                                                 atmosphere with
                                                 caring compassionate
                                                 team members!"

                                                 "The patient care
                                                 team members do
                                                 really listen to
                                                 patient's concerns,
                                                 visits seem very
                                                 rushed. I think the
                                                 system is
                                                 overwhelmed."

                                     [greater    "They are so
                                     than or     overworked; they can
                                     equal to]   only give so much of
                                     60 years    their time."

                                                 "I'm always
                                                 impressed by the
                                                 staffs friendly
                                                 attitude and
                                                 concerns for not
                                                 only my loved one
                                                 but for all patients
                                                 and Veterans."

Physical environment       78        <60 years   "There needs to be
                                                 more available
                                                 seating, often there
                                                 is standing room
                                                 only for very long
                                                 waits."

                                                 "The layout of the
                                                 hospital is a little
                                                 confusing ..."

                                                 "... clinic is too
                                                 congested; they need
                                                 to rearrange the
                                                 waiting room ... it
                                                 seems as though it
                                                 is a safety hazard."

                                                 "... the zig-zag
                                                 through the hospital
                                                 to make all
                                                 [appointments] can
                                                 be trying on me and
                                                 hard on my dad."

                                     [greater    "I can't believe you
                                     than or     are doing away with
                                     equal to]   valet parking."
                                     60 years
                                                 "It is a clean and
                                                 attractive facility
                                                 ..."

                                                 "We need more
                                                 parking areas,
                                                 finding a space for
                                                 parking is difficult
                                                 to do."

                                                 "The facility is
                                                 physically pleasant
                                                 and comfortable."

Figure 2. Family-Centered Care Subscales (a,b): Perceptions of Older
and Younger Family/Caregivers. (a) Graph displays subscales Respect,
Collaboration and Support of the Family-Centered Care Survey. The
scale range is 1.00-4.00, with higher scores indicating better
perceptions of FCC; mean values are presented. Findings for regression
models for each FCC sub-scale looking at the main effects of: age,
race, and the Age X Race interaction term are presented (c, d, e) (to
assess potential differences in older/younger participant's FCC
perceptions). (b) Differences in mean values for the younger vs. older
family/caregiver groups for Respect, Collaboration and Support are
significant at the <0.0001 level. (c) Respect sub-scale: There was a
main effect of age on participant's average reported perceptions of
respect (B = -0.08, 95% CI:-0.11-.0.04,p < 0.0001), but there was no
significant main effect of race, and the Age X Race interaction was
not significant. This indicates that participants less than 60 years
of age had lower perceptions of the FCC construct 'respect,' but
perceptions did not differ by race (white vs. all other), nor were age
effects dependent on racial category. (d) Collaboration sub-scale:
There was a main effect of age on participant's average reported
perceptions of collaboration (B = -0.08, 95% CI:-0.13-.0.04, p =
0.0003). There was also a significant main effect of race on
participant's average reported perceptions of collaboration (B = 0.08,
95% CI: 0.003-0.14, p = 0.0422). The Age X Race interaction was not
significant. This indicates that participants less than 60 years of
age and those who were white had lower perceptions of the FCC construct
'collaboration,' but age effects were not dependent on racial category.
(e) For the Support sub-scale: There was a main effect of age on
participant's average reported perceptions of support (B = -0.11, 95%
CI:-0.16-.0.06, p < 0.0001), but there was no significant main effect
of race, and the Age X Race interaction was not significant. This
indicates that participants less than 60 years of age had lower
perceptions of the FCC construct 'support', but perceptions did not
differ by race (white vs. all other), nor were age effects dependent on
racial category. See the online article for the
color version of this figure.

                              Age <60   Age [greater than
                                        or equal to] 60

Respect (c) (n=2,058)          3.22           3.36
Collaboration (d) (n=1,981)    2.98           3.12
Support (e) (n=1,923)          2.88           3.06

Note: Table made from bar graph.
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Author:La Vela, Sherri L.; Turcios, Stephanie; Malhiot, Alex; Etingen, Bella; Hill, Jennifer N.; Miskevics,
Publication:Families, Systems & Health
Article Type:Survey
Date:Jun 1, 2016
Words:8151
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