Improving health behaviours of Latina mothers of youths and adults with intellectual and developmental disabilities.

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Journal of Intellectual Disability Research 397

doi: 10.1111/jir.12139

volume 59 part 5 pp 397–410 may 2015

Improving health behaviours of Latina mothers of youths and adults with intellectual and developmental disabilities S. Magaña,1 H. Li,1 E. Miranda2 & R. Paradiso de Sayu2 1 University of Illinois at Chicago, Chicago, IL, USA 2 University of Wisconsin-Madison, Madison, WI, USA

Abstract Background Latina mothers who care for children with intellectual and developmental disabilities (IDD) over the lifespan struggle to take care of their own health needs in the context of their caregiving experience. Services are typically aimed at the persons with IDD and not their family caregivers. Yet, attending to family caregiver needs may contribute to better long-term care of persons with IDD who remain at home. To address this unmet need, we developed a culturally sensitive health education intervention for Latina mothers who care for youth and adults with IDD. The aim of the intervention is to improve maternal health-related self-efficacy and health behaviours, and to reduce stress. Method A randomised control design was employed to determine preliminary efficacy of the intervention. Paired sample t-tests were conducted to examine within-group changes from baseline to 3-month post-test. Repeated-measures analysis of covariance was used to examine the group-by-time interaction effects. Correspondence: Prof. Sandy Magaña, Disability and Human Development, University of Illinois at Chicago, Chicago, IL 60608, USA (e-mail: [email protected]).

Results Intervention participants showed greater increases between pre- and post-test in healthrelated self-efficacy; self-care, nutrition and overall health behaviours. Both groups reported decreases in depressive symptoms and caregiver burden. Conclusions While additional research is needed to determine long-term effects and to replicate findings, our results suggest that this culturally sensitive health intervention is a promising way to increase health behaviours which may lead to overall good health for Latina mothers who care for children with IDD across the lifespan. Keywords health education, intellectual and developmental disability, Latinos, promotoras, self-efficacy

Introduction In this paper we examined the efficacy of a culturally sensitive health education intervention for Latina mothers of youths and adults with intellectual and developmental disabilities (IDD). Researchers who study caregiver outcomes among Latina mothers of children and adults with IDD have found that while these mothers may experience high levels of social support and quality of life

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

Journal of Intellectual Disability Research

volume 59 part 5 may 2015

398 S. Magaña et al. • Health education for Latina mothers

(Cohen et al. 2014), they are often in poor physical health and have high rates of depressive symptoms (Blacher et al. 1997; Eisenhower & Blacher 2006; Magaña & Smith 2006a; Magaña et al. 2006). Compared with same-aged Latina mothers who do not have caregiving responsibilities, older Latina mothers of children with IDD have more chronic health conditions, higher rates of depressive symptoms, and are less likely to see a doctor (Magaña & Smith 2006a, 2008). Furthermore, Latina mothers of children with IDD are more likely to live with their child throughout his or her lifespan than nonLatina White mothers (Magaña & Smith 2006b; Kraemer & Blacher 2008). Contributing to potentially poor health outcomes, mothers of children with IDD often focus on the needs of their children at the expense of their own needs, which may be particularly relevant for Latina mothers who often identify their caregiving role as their primary responsibility (Rueda et al. 2005; Magaña & Smith 2006b). In addition to the caregiving challenges these mothers face, Latina mothers are more likely to be immigrants, have lower socio-economic status, language barriers and differing cultural views than non-Latina White caregivers (Blacher et al. 1997; Rueda et al. 2005; Magaña & Smith 2006b). While caring for their adult children with IDD at home may reduce public costs for long-term care of people with IDD, the effects of life-long caring on the health of maternal caregivers is generally not considered. Supportive services are primarily aimed at the child or adult with IDD and do not include services for the caregiver with the exception of respite care (McConkey et al. 2011). Therefore, interventions that help Latina mothers focus on their own health are needed in order to support them in their efforts to care for their child. Caregiver interventions can also be cost-effective by allowing these mothers to continue in-home caregiving if they wish, and thus reducing costs to the state of their own health care. The primary focus of our intervention was on midlife and older Latina mothers of children with IDD because research shows that their physical and mental health warrants special attention (Blacher et al. 1997; Magaña & Smith 2006a). Other researchers have found that midlife and ageing female caregivers of adults with IDD who were from various ethnic and racial backgrounds were

more likely to have arthritis, high blood pressure and obesity than same aged women in general population (Yamaki et al. 2009). Therefore we chose to focus on midlife and older mothers in our study. In choosing the type of health education programme from which we would base our intervention, it was important to select one that was culturally sensitive. Bernal & Sáez-Santiago (2006) argue that because poverty, lack of access to services, and language and cultural differences are part of the experience for minorities and immigrants, it is important to incorporate these issues in interventions designed for them. We found the research and practice of using promotores de salud, or community health workers to be compelling with respect to their incorporation of culture and their success in working with Latino populations (Elder et al. 2005; Balcázar et al. 2009; WestRasmus et al. 2012). Below we describe the research related to promotores de salud.

Promotores de Salud Model A promotor/a is a peer leader who receives training on health education, is indigenous to the target community, and serves as a bridge between the target community and the service system (Elder et al. 2005; Reinschmidt et al. 2006). Promotores are most often women and are natural helpers who are insiders in their communities, and can help motivate other community members around a specific topic or problem (Reinschmidt et al. 2006). Equipped with training on aspects of health care specific to the project they are working on, promotores provide education to groups and individuals in their communities. The Promotores de Salud Model has been used successfully in a variety of health-related projects including increasing chronic disease screening (Hansen et al. 2005; Reinschmidt et al. 2006), education about nutrition and dietary practices (Elder et al. 2005), improving heart healthy behaviours (Balcázar et al. 2009) and learning about environmental health (Ramos et al. 2001). In a study that examined the role of the promotora in a diabetes education programme, participants described the promotora as being an effective teacher because she understood them and their culture (Deitrick et al. 2010). The promotoras in





this project also had diabetes and as a result, participants felt they made good role models who understood what they were going through with respect to the health issues (Deitrick et al. 2010). Lastly, because of recent health policy decisions, there is potential for promotora interventions to be funded under the Affordable Care Act as Congress has included specific language recognising the importance of their role (Spinner & Alvarado 2012). We have not found research documenting the Promotores de Salud Model for Latina mothers of children with IDD; however, we believed it would be a good fit for this population. Latina mothers of children with IDD may be more likely to respond to an intervention delivered by members of their community who understand their experiences culturally and as mothers of children with IDD. Similar to the diabetes study, we required that the promotoras in our study be mothers of children with IDD. This was important because research has found that Latina mothers with children with IDD tend to put their child and family first, sometimes believing that their most important role in life is caring for their child (Rueda et al. 2005; Magaña & Smith 2006b). As a result of valuing their role as caregiver, these mothers may not see it as a priority to take care of their own health. Promotoras who understood the parenting experience in the context of these cultural values could serve as role models and be more persuasive in emphasising the need to focus on maternal health. They could help participants reframe their tendency to ignore their own health in the context of better serving their family members. We chose to use a home-visit model in which promotoras that were Spanish speaking and from the same geographic and cultural community would conduct the session in the home of the participant. The home-visit model addresses several barriers that are common with low-income populations including transportation and the need to obtain child care.

at least two community health worker studies (Martin et al. 2009; Swider et al. 2010). Self-efficacy theory has also been used in health education research as a way to understand the mechanisms by which health education programmes may lead to positive health behaviours and ultimately better health outcomes (Lorig & Gonzalez 1992; Lorig et al. 2003). Another attractive aspect of self-efficacy theory is that it fits well with empowerment approaches to interventions (Gutierrez 1990; Cohen 2013). Many argue that using empowerment approaches are important to populations that have limited power in their lives (Gutierrez 1990; Lee 2001; Cohen 2013). Gutierrez (1990) maintains that self-efficacy is an important way to increase personal empowerment; and Cohen makes a case for using self-efficacy building approaches with Latino parents of children with IDD. Studies aimed at changing health behaviours have shown that those who demonstrate higher levels of self-efficacy – the belief that they are able to engage confidently in behaviours and activities that promote better health – demonstrate improved health outcomes (Lorig & Gonzalez 1992; Lorig et al. 2003). Bandura (2007) stressed the difference between the belief that one can carry out a healthy behaviour, especially in the context of difficult conditions, and the ability to carry it out. For example, maternal caregivers may not be confident in their ability to carry out positive health behaviours in the context of their busy schedule and stress resulting from their caregiving role and this may result in not engaging in healthy behaviours. Therefore, selfefficacy must be developed and reinforced before expecting to see sustained behavioural change. According to Bandura (1977) self-efficacy develops from four main mechanisms: performance accomplishment, vicarious experience, verbal persuasion and emotional states. We will describe how promotoras engage in these mechanisms in the intervention description section.

Linking the Promotores de Salud Model to theory The literature on promotoras de salud provides important descriptions of a successful socioculturally based intervention model, but is limited in discussions of theory. We chose to incorporate self-efficacy theory as it closely fits the activities of the promotora model and has been used in

Intervention description and hypotheses Taking into account the challenges that Latina mothers of children with IDD face, self-efficacy theory and the Promotoras de Salud Model, we developed an 8-week, manualised health education intervention, By Caring for Myself, I Can Care



Journal of Intellectual Disability Research 400 S. Magaña et al. • Health education for Latina mothers

Table 1 Content of By Caring for Myself I Care Better for my Family

Session topic

Details of session

Taking Care of Yourself

Introduction to programme and content; discussion about what it means to care for oneself in the context of caring for a child with IDD; setting goals Exploration of the importance of regular health visits and age appropriate tests to be aware of; role play of asking health provider questions; making plan for scheduling healthcare visit Discussion of the meaning of physical and emotional well-being; practice a well-being activity (i.e. a guided drawing activity) Discussion of the importance of eating healthy and how to eat healthy in the context of cultural tradition and family Discussion of the importance of exercise and how to exercise while caring for a child with IDD; promotora engages participant in a stretching activity Discussion about the signs of stress and case study of a parent in a stressful situation; discuss symptoms of depression and when to seek help; breathing exercise Discussion about including others in household chores and caring for child with IDD; work on an ecomap to identify people and resources that can provide support Review of materials covered and discussion about what goals were accomplished and what new goals will be set

Health Care for You

Well-being activities Nutrition Exercise Reducing stress and understanding depression Including others and social support

Sustaining personal growth

IDD, intellectual and developmental disabilities.

Better for My Family, designed to help Latina mothers of children with IDD increase their confidence in engaging in healthy behaviours, and subsequently, engage in activities that may improve health and reduce stress (see Magaña 2011) for a description of the pilot study conducted to develop the intervention). The content of the 8-week manual included the following topics: (1) taking care of yourself; (2) health care for you; (3) wellbeing activities; (4) nutrition; (5) exercise; (6) reducing stress and depression; (7) including others; and (8) personal growth (see Table 1 for more details). Each unit lasted approximately 1–2 h and was delivered weekly by a promotora at the participant’s home during a time that fit the schedules of both the promotora and the participant. In our pilot study conducted to determine feasibility and acceptability of the intervention (Magaña 2011), we met with all of the promotoras as a group after they completed one to two cases. With their input, we made changes to the content and protocol to incorporate cultural issues. For example, at the recommendation of the promotoras, we added the use of short stories or cuentos as an ice breaker or to end the

session. The promotoras reported that using cuentos was a good cultural fit for participants. The promotoras helped identify cuentos that came from Spanish-speaking communities and were related to disabilities, and we added these to our manual. The intervention draws on all four sources of self-efficacy as outlined by Bandura (1977). The promotora guides each activity providing modelling, role playing and performance accomplishment. As a parent of a child with IDD, she offers vicarious experiences or examples in her life of how she engages in healthy behaviours in a similar context to the participant. She uses verbal persuasion by setting goals through homework assignments with the participants and encouraging them to accomplish them. Lastly, the promotora helps participants to reduce stress by practising breathing and relaxation techniques and providing support by listening to the participants as they describe their experiences and challenges thereby helping participants to take control over their own emotional states. The promotora delivers the content using a guided curriculum; however, the materials are not delivered in a didactic manner; rather promotoras




engage the participants in a dialogue by presenting content, providing examples from their own lives and asking questions. The purpose of this study was to test the efficacy of the intervention aimed at increasing healthrelated self-efficacy and positive health behaviours, and reducing stress among Latina mothers of youths and adults with IDD. We hypothesised that participants enrolled in Caring for Myself would report (1) greater increases in the level of healthrelated self-efficacy; (2) greater improvements in health behaviours (exercise, self-care and nutrition); and (3) greater reductions in depressive symptoms and lower levels of caregiver burden than control group participants.

Methods Study approach and design We used a community-based research approach; working with a community-based organisation (CBO) as a research partner. The CBO was selected because they are a well-established nonprofit organisation that serves people with developmental disabilities and their families, and have a strong record of working with Latino families. We provided funding to the CBO to hire a promotora co-ordinator and to compensate the promotoras. A randomised two-group pre- and post-test design was used to test the efficacy of the Caring for Myself intervention. The promotora co-ordinator completed the informed consent and pre-test with participants. Case numbers were assigned and the case numbers were randomised into two groups by the first and third authors using a random-digit table. Pre-test data were not viewed by study staff until the randomisation was complete. The control group received participant manuals with the intervention content, but did not receive the home visits with promotoras that the intervention group received during the 3-month period.

Participants With the help of the CBO, we recruited 100 mothers of youths and adults with IDD to participate in the study. Potential participants were consumers of the CBO’s programming and were asked

by CBO staff if they were interested in participating. Participants were included if they were mothers of a child with IDD and of Latin American descent. In addition, because our focus was on mothers who were midlife or older, we included mothers either who were 40 years old and older, or who had a child who was at least 8 years old. Ten participants did not complete the study resulting in 42 intervention and 48 control group participants, representing a 10% rate of attrition. Of the eight attrition cases in the intervention group, three indicated that they knew the material and were not interested in continuing, two had scheduling problems, one was too ill (had cancer), one wanted the programme in English (we did not have an English-speaking promotora), and we lost contact with one because of a change of address and phone number. In the control group, we had two cases that did not complete the post-test; one who went to Mexico for an unspecified period; and the other with whom we lost contact. We compared the 10 attrition cases to the final sample, and did not find differences in any of the demographic variables. Demographic variables for participants are described in the results section.

Procedure The study was approved by the University Institutional Review Board. Interested participants were invited to the CBO office to learn more about the study. Those who agreed to participate signed informed consent forms after learning the nature of the study and intervention, and the randomisation process. They then completed a 30-min demographics questionnaire and pre-test in interview format with the CBO project co-ordinator who was trained by the research team. The CBO then submitted the materials to the principal investigator who randomised and assigned participants to the intervention and control groups (see Fig. 1 for flow chart of randomisation of participants). After completing the post-test, control group participants were offered the intervention voluntarily. While not part of the present analysis, 40 out of 48 control group participants (83%) asked to receive it, and engaged in the intervention after the completion of the post-test.





Figure 1 Flow chart of study participants.




Training procedures Promotoras were Latina mothers caring for a child with IDD, fluent Spanish speakers and living in the same geographic area as participants. The CBO identified mothers who met these criteria and who possessed leadership skills and/or were recognised as emerging community leaders. Those mothers who expressed interest were invited to an informational meeting in which questions about the programme were answered, and the actual training meetings were scheduled with those who wanted to participate as promotoras. Seven mothers elected to be promotoras and were trained for the present study. The promotora training was conducted in a group format during three structured half-day training sessions. The training sessions were conducted in Spanish, and the promotoras were given a stipend for their time. During the training sessions, promotoras took the role of the participant by completing pre- and post-test evaluations identical to those administered to programme participants and by engaging in discussions with study staff as they delivered the content. This allowed them to get a feel for what participants might experience. Promotoras were also provided with training on research and human subjects as required by the IRB. Through this process, promotoras reviewed the programme manual in detail; learned tools and techniques to guide programme sessions; and asked questions about the implementation of the sessions that were discussed.

Implementation procedures After the training sessions, promotoras were given one or two cases to complete and were asked to report back to the CBO project co-ordinator after each completed session. Participants received a participant version of the manual and a folder containing information about local resources in addition to the home visits. The promotora conducted eight home visits with each participant delivering the curriculum described in the manual. The project manager at the university was available to answer questions and problem-solve with the CBO co-ordinator and promotoras if needed. Promotoras received a stipend for each case they completed that covered the eight sessions and travel time. Requir-

ing the promotoras to report back after each visit helped to maintain fidelity to the programme. Post-test questionnaires were completed by both intervention and control group participants after 8 weeks with the CBO co-ordinator. Additionally, semi-structured focus groups of the participants who received the intervention were held after completion which provided data on the consistency of delivery and acceptability of the programme. Responses in the qualitative data were overwhelmingly positive and provided insights into why the role of the promotora is important. Analysis of this qualitative data will be reported in a forthcoming manuscript.

Study instruments The pre-test included a demographic questionnaire with questions about the mothers’ date of birth, education, employment status, income, ethnicity, language preferences, marital status and physical health status. Also included were date of birth, gender and primary disability of the child. The preand post-test included measures of health-related self-efficacy, positive health behaviours, depressive symptoms and caregiver burden which are described below. All study instruments were already available in Spanish with the exception of caregiver burden. The study team used the forward and back translation method to translate this measure. Health-related self-efficacy was measured by an adaptation of the Chronic Disease Self-Efficacy Scales (Lorig et al. 1996). There are 10 items that ask respondent how confident she is in doing specific activities that were discussed during the programme, with response categories ranging from (1) not at all confident to (10) totally confident. Sample items include, that you can find time for yourself, that you can prepare healthy and nutritious foods for yourself and your family, and that you exercise at least half an hour 4 or 5 times a week. Items were summed; higher score indicates greater levels of self-efficacy. Cronbach’s alpha for present sample was 0.81. Positive health behaviours were measured by an adaptation of the Family Habits Scale which was developed for the Health for your Heart Promotora Intervention (Balcázar et al. 2005). This measure was created specifically for Spanishspeaking Latino participants in a promotora




project. There are 36 items that ask, ‘How often do you do the following?’ followed by items on self-care (8 items), nutrition (18 items) and exercise behaviours (10 items). Sample items include, set goals for myself to improve my own health and well-being, cool soups and remove the layer of fat that rises to the top, and work in the garden. We created sub-scales for each of these three categories. Response categories range from (0) never to (3) always. Items were summed within each sub-scale and for an overall healthy behaviours score; higher scores indicate more healthy behaviours. The overall scale and sub-scales were rescored on a 0 to 100 scale for ease of interpretation. Content validity and reliability were established by Balcázar et al. (2005; Cronbach’s alpha >0.60). For the present sample, Cronbach’s alphas were: overall scale 0.79; self-care behaviours 0.62; nutrition behaviours 0.68; and exercise behaviours 0.67. Depressive symptoms were measured by the Center for Epidemiologic Studies Depression Scale (CES-D; Radloff 1977), which has been established as a valid and reliable measure of depressive symptoms in different ethnic groups including Latinos (Guarnaccia et al. 1989; Cho et al. 1993). The CES-D consists of 20 items that rate the frequency of depressive symptoms over the last week with response categories range from (0) rarely to (3) most of the time. Items were summed; higher score indicates greater levels of depressive symptoms. A score of 16 or higher indicates risk for depression. Cronbach’s alpha was 0.83 for the present sample. Caregiver burden was measured by a caregiver appraisal measure adapted by Heller et al. (1999) based on a multilevel assessment instrument developed by Lawton et al. (1982). This measure has 15 items and three sub-scales (caregiver self-efficacy, burden and satisfaction) with response categories ranging from (0) strongly disagree to (3) strongly agree. However, we only present results for the burden sub-scale because the others did not have adequate reliability scores. Sample items for caregiver burden included, caring for my child hurts my job, and caring for my child leaves little time to be me. The items were translated and back translated by the research team. Items were summed; higher scores indicate greater levels burden. Cronbach’s alpha for the present study was 0.83.

Analysis The research questions were tested through a threestep process. First, group differences at baseline were examined on demographic characteristics and outcome variables. In the case of any significant differences on Chi-squared test or t-test results, the respective variables were entered as a covariate in step three. Next, paired-samples t-tests were performed on the intervention and control group separately to assess within-group mean differences between baseline and 3-month post-test. We used paired-sample t-tests in step 2 in order to generate means and standard deviations to calculate effect sizes. Effect sizes were calculated using Morris & DeShon’s (2002) method to adjust for the dependence between pre- and post-test scores. Finally in step three, we used a more conservative method of determining change from pre- to post-test that adjusted for demographic variables that were different between the two groups, and included whether pre- and post-test changes were significantly different across groups. Outcome variables, group (intervention vs. control) and time (baseline vs. 3 months) were entered into a repeated-measures analysis of covariance (RM-ANCOVA) to study the group-by-time interaction effect. Data analysis was performed using IBM SPSS Statistics version 19. Alpha was set to P < 0.05.

Results Baseline participant demographic characteristics are presented in Table 2. All participants received the programme in Spanish, their primary language. The majority of the mothers were in their 40s, married, foreign born, of Mexican descent, had less than high school education, and reported to be in poor or adequate health. The intervention group participants had lower rates of employment (24.5% vs. 46.9%), but were otherwise similar to the control group participants. As such, a dichotomous (0, 1) variable, employed was used as a covariate in our analysis with 1 representing participants who were employed full or part-time and 0 representing participants who were not employed outside the home. Paired-sample t-test results showed significant within-group over-time improvements in all




Mother characteristics Mean age (standard deviation, SD) Married or living together (%) Level of education (%) Less than high school High school or more Years of education (SD) Annual household income (%) 0 to $19 999 $20 000 and up Employed Foreign born Ethnicity (%) Mexican descent Other Latino Good/excellent health Child characteristics Mean age (SD) Per cent male Diagnosis (%) Autism Downsyndrome Cerebralpalsy Intellectualdisability Other

Intervention

Control

43.9 (9.4) 38 (76.0%)

45.1 (8.3) 41 (82.0%)

36 (78.3%) 10 (21.7%) 8.1 (3.2)

40 (80.0%) 10 (20.0%) 6.9 (2.8)

21 (43.8%) 27 (56.3%) 24.5% 92.0%

15 (30.0%) 35 (70.0%) 46.9% 96.0%

47 (94.0%) 1 (6.0%) 38.0%

49 (98.0%) 1 (2.0%) 22.0%

16.9 (7.6) 58.0%

18.0 (8.8) 64.0%

12 (28.6%) 7 (16.7%) 15 (35.7%) 6 (14.3%) 2 (4.8%)

Test value†

Table 2 Comparison of demographics characteristics at baseline

−0.9 0.5 0.04

1.7 2.0

5.4* 0.7 2.0

3.0 −0.4 0.4 1.8

5 (19.2%) 7 (26.9%) 10 (38.5%) 3 (8.3%) 1 (3.8%)

* P < 0.05. † T-test or Chi-square values.

outcomes for intervention group participants, compared with fewer and smaller improvements in control group participants (see Table 3). Additionally, in Table 3 we present effect sizes to better interpret the meaning of differences. Consistent with hypothesis 1, intervention participants reported significant improvements in their level of healthrelated self-efficacy, while the control group did not improve in this area. The effect size was large for the intervention group, and there was no real effect size for the control group. Consistent with hypothesis 2, intervention participants reported significant increases in health behaviours including exercise, self-care, nutrition and overall behaviours. The control group did not show significant improvements in these outcomes. Here the effect sizes were large for the intervention group and small for the control group with respect to exercise, self-care and overall behaviours, and no effect sizes were found for nutrition behaviours. Figure 2 provides a

graphic depiction of the results for the positive health behaviours scale and sub-scales which are scored on a 0–100 scale for ease of interpretation. Regarding hypothesis 3, both intervention and control group participants reported reductions in depressive symptoms and burden. There was a large effect size on caregiver burden for the intervention group, and a medium effect size on this measure for the control group. The effect sizes for depressive symptoms were low to moderate in both groups. In the RM-ANCOVA analysis, we added the covariate employed because as reported earlier, this was significantly different between the two groups. Our main goal in this analysis was to determine whether changes in scores were significant between groups. Consistent with our hypotheses, significant group-by-time interaction effects were observed across all measures (F = 6.6, df = 8.80, P < 0.001).




Table 3 Within-group differences and effect sizes for study outcomes (means ± standard deviations displayed)

Intervention (n = 42)

Health-related self-efficacy Exercise behaviours Self-care behaviours Nutrition behaviours Overall behaviours Caregiver burden Depressive symptoms

Control (n = 48)

Pre-test

Post-test

t†

Effect size‡

74.24 ± 15.8 31.47 ± 14.6 45.34 ± 17.1 61.33 ± 12.4 50.65 ± 10.9 14.77 ± 6.8 15.14 ± 9.8

89.40 ± 9.7 48.45 ± 18.7 68.20 ± 16.8 75.20 ± 15.1 68.07 ± 13.8 9.96 ± 6.0 10.07 ± 10.1

−6.2*** −6.4*** −7.2*** −6.3*** −8.7*** 5.4*** 2.8**

1.0 1.0 1.1 1.0 1.4 0.8 0.4

Pre-test

Post-test

t†

Effect size

74.17 ± 13.2 29.39 ± 14.6 47.66 ± 15.8 64.51 ± 14.7 52.10 ± 11.3 14.90 ± 7.1 18.98 ± 11.9

74.63 ± 15.1 35.14 ± 45.6 51.56 ± 17.0 63.39 ± 14.4 54.21 ± 18.0 12.35 ± 6.5 14.31 ± 10.8

−0.2 −1.0 −1.7 0.6 −1.0 3.1** 2.4*

0.03 0.2 0.2 0.09 0.2 0.5 0.3

* P < 0.05, ** P < 0.01, *** P < 0.001. † Paired-sample t-test values. ‡ Cohen’s d, which are interpreted as 0.2 = small, 0.5 = medium, 0.8 = large (Cohen 1988).

100

80

60

40

75.2

68.2 48.5

20 31.5

0

Intervention-Exercise

47.7

45.3 29.4

61.3

64.5

63.4

51.6

35.1

Control-Exercise

Intervention-Self-Care Pre-test

Control-Self-Care

Intervention-Nutrition

Control-Nutrition

Post-test

Figure 2 Comparison of intervention and control group on exercise, self-care and nutrition habit scores (re-scaled to 0–100).

The intervention group participants reported significantly higher change scores between pre- and post-test than the control group in the levels of health-related self-efficacy (F = 20.8, df = 1.87, P < 0.001), confirming hypothesis 1 (see Table 4). With respect to hypothesis 2, we found significantly higher change scores for the intervention group in

self-care, nutrition and overall health behaviours. However, the difference in change scores of exercise behaviours was not significant between groups (F = 1.7, df = 1.87, P = 0.19). Hypothesis 3 was rejected as no difference was observed in the degrees to which depressive symptoms decreased across the two groups.




Table 4 Pre- and post-test change scores and repeated-measures analysis of covariance (RM-ANCOVA) results for study outcomes

Intervention (n = 42) Health-related self-efficacy Exercise behaviours Self-care behaviours Nutrition behaviours Overall behaviours Caregiver burden Depressive symptoms

Control (n = 48)

F†

15.2 ± 15.8

0.5 ± 14.4

20.8***

17.0 ± 17.1 22.9 ± 20.6 13.9 ± 14.4 17.4 ± 12.9 −4.8 ± 5.8 −5.1 ± 12.4

5.76 ± 41.6 3.9 ± 16.1 −1.1 ± 13.1 2.1 ± 15.1 −2.5 ± 5.7 −4.7 ± 13.7

1.7 19.5*** 23.2*** 21.4*** 3.2 0.03

*** P < 0.001; means ± standard errors displayed. † Repeated-measures ANCOVA with employed (0 or 1) as covariate.

Discussion In this paper, our goal was to test the efficacy of a culturally sensitive health education programme for Latina mothers of youths and adults with IDD. Research has shown that the health of midlife and older Latina mothers of children with IDD requires attention from service providers. As a result, we developed an 8-week promotora-based home visit programme to attend to this unaddressed need. This intervention has the potential to be costeffective because it can prevent reliance on expensive emergency care among a population that is underserved (Koskan et al. 2013). Furthermore, by focusing attention on caregiver health, it may reduce long-term care costs for persons with IDD who would otherwise be placed in residential settings if the family caregivers were not longer able to provide care because of poor health. It is important to note that most IDD agencies or CBOs do not provide services to family caregivers of persons with IDD (McConkey et al. 2011), thus this type of programme would not replace or displace professionals or other workers. Overall, we found that intervention group participants improved in important areas related to their own health compared with control group participants. The intervention was successful in helping participants increase their health-related self-efficacy. Participants reported feeling more confident after the intervention in being able to carry out the healthy behaviours. According to Bandura

(2007), this is a prerequisite to actual behavioural change. We believe that the promotora model addresses elements of self-efficacy as outlined by Bandura including vicarious experiences provided by the promotoras through examples from their own experiences, assisting participants through performance accomplishment, using verbal persuasion to encourage positive health behaviours, and providing emotional support through listening and demonstrating concern. These activities may have contributed to the greater levels of confidence participants reported. This finding was consistent with those found in a project that used community health workers to improve asthma self-efficacy among African American adults with asthma (Martin et al. 2009). Other studies on family caregivers of persons with Alzheimer’s disease have found a relationship between self-efficacy, health behaviours and health risk (Rabinowitz et al. 2007, 2011) which highlights the importance of these connections for caregivers. We also found that intervention group participants did in fact report behavioural change – they reported increases in self-care behaviours, nutrition behaviours and overall healthy behaviours compared with the control group. They also reported significant increases in exercise behaviours. However, the control group reported slight, non-significant increases with a large standard deviation in post-test scores in exercise behaviours and the difference in change between the two groups was not significant. Overall, our findings are consistent with a study from which we borrowed our positive health behaviours measure (Balcázar et al. 2005; Spinner & Alvarado 2012). This study used a multisite one group design to examine a promotora-based cardiovascular health education programme for Latinos and found improved health behaviours and improvements in blood pressure and cholesterol levels between pre- and post-tests (Balcázar et al. 2005, 2009), demonstrating a relationship between the healthy habits measure and clinical outcomes. We found that intervention group participants reported significantly lower depressive symptoms between pre- and post-test; however, the control group also reported lower depressive symptoms. This was an important target of change for our intervention, because of previously reported high rates of depressive symptoms among this population




(Blacher et al. 1997; Eisenhower & Blacher 2006; Magaña et al. 2006). Our intervention included a session on reducing stress and identifying depression, and stress reduction was emphasised throughout the intervention. It is possible that increased interaction with the CBO and project staff in administering the pre- and post-test, and receipt of the participant manual impacted the level of distress of control group participants in a positive way. Additionally, the anticipation of receiving the educational programme in the future may have had an impact on the affect of control group participants as the majority of them volunteered to receive the intervention after the study. Both groups reported reductions in how burdened they felt by their caregiving duties. The reduction of burden between pre- and post-test was greater for the intervention group than the control group; however, the between-group difference was not significant. While it is possible that intervention group participants reported lower caregiver burden because the promotoras and participants often discussed their children and strategies for caring for them it is also possible that the control group experienced a decrease in burden because of the increased contact with the CBO. Through this increased contact, they may have learned more about activities and strategies to care for their son or daughter. The study presented in this paper has several limitations. First, the intervention (treatment) and control group assignment was transparent to all (double-blind assignment was impractical). Second, the self-reporting of health behaviours and depressive symptoms could be subject to social desirability bias, although the use of a treatment and control group helps to mitigate the effects. In other words, participants may report that they are engaged in more positive health behaviours than they actually are. However, this potential inflation of reported health behaviours would likely occur in both groups as questionnaires were administered in the same way. Third, because the majority of our sample was of Mexican descent, and were primarily immigrants, we do not know how the intervention would work for mothers from other Latin American countries and Latina mothers who are born in the USA. Finally, as employment status was not equal in intervention and control groups we used it as a

covariate in all of the analyses. When a covariate is correlated with outcome variables, the risk of Type I error is increased. However, we found that employment status was only correlated with the nutrition behaviours outcome and at a relatively low level (r = 0.27), decreasing the likelihood of contributing to Type I error rates. Despite the limitations, this initial efficacy study has found that participants who received the programme delivered by a promotora significantly increased their health-related self-efficacy and positive health behaviours compared with those who only received a copy of the content manual. The next step for this programme is to conduct an effectiveness study in which the programme would be conducted across multiple sites and with multiple community partners to determine if the programme is effective across different settings. In order to sustain the programme and disseminate it more widely, we plan to develop train-the-trainer materials that include instructions on how to set up such a programme, train promotoras and apply for community grant funding. Funding has been noted as the largest barrier to sustaining promotora programmes (Koskan et al. 2013). However, promotora programme planners have identified strategies that have the potential to contribute to sustainability including the use of a community’s pre-existing resources and partnerships between CBOs and academics or state agencies (Koskan et al. 2013). The CBO we collaborated with has applied for funding to continue the programme by tapping into new state initiatives that arose from the Affordable Care Act implementation. Another CBO that worked with us on a group model of the programme has received additional small grant funding to carry out additional groups, demonstrating the potential for programme growth and sustainability.

Conclusion Our findings demonstrated preliminary efficacy of an intervention designed to increase self-efficacy and positive health behaviours among Latina mothers of youths and adults with IDD. Because the study was conducted in a community setting, and not in a controlled research environment, our findings also contribute to establishing the





effectiveness of the intervention under real-world conditions. Future research should include follow-up time points to determine whether results are sustained overtime. Future studies should be conducted in different community settings, with different ethnic and cultural groups, and should examine the impact on the children with IDD. This culturally appropriate intervention has the potential to increase the level of health among this population which in turn could extend the quality of life of persons with IDD and their families.

Acknowledgements Support for this study was provided by Rehabilitation Research and Training Center on Aging with Developmental Disabilities Lifespan Health and Function through a grant from the National Institute on Disability and Rehabilitation Research (Grant # H133B080009). We wish to thank El Valor for their collaboration on this project and all of the families who participated in the study.

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Accepted 21 March 2014


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