Abstract
This article provides support for the feasibility and preliminary effectiveness of the novel Healthy Mothers Healthy Families–Health Promoting Activities Coaching (HMHF–HPAC) intervention for mothers of children with disabilities, which can be embedded in existing family services to improve participation in healthy activities and mental health and to evaluate outcome measures.
Research indicates that mothers of children with disabilities can experience mental and physical heath disparities compared with parents of typically developing children (Masefield et al., 2020). Mothers manage the substantial caregiving role for children with disabilities, shouldering multifaceted responsibilities. Pediatricians have likened their workload to a permanent full-time job and highlighted that it continues over the child’s lifetime and thus is “something that they will have to deal with well into the future” (Bourke-Taylor et al., 2010, p. 132).
The daily lives of mothers of children with disabilities include more complex daily patterns of occupations because of the multiplicity of tasks associated with direct care, the associated organization and orchestration of services to meet their child’s needs (Ranger et al., 2021), and the need to accommodate an unpredictable daily schedule when their child’s needs are complex (Erlandsson & Eklund, 2006). A study of 100 mothers of typically developing children found a correlation between more complex daily patterns of occupation and lower mental health and well-being (Erlandsson & Eklund, 2006). Occupational imbalance is associated with mothers’ abilities and resources and the value and meaning they assign to the complexity of their daily pattern of occupations (Eklund et al., 2017). Research has indicated that mothers with a child with disabilities experience challenges in self-care, leisure, and health-promoting activities in their weekly routines as a result of their competing responsibilities, and they experience reduced health and well-being as a consequence (Bourke-Taylor, Grzegorczyn, & Joyce, 2021; Bourke-Taylor, Joyce, Morgan, et al., 2021).
Qualitative interviews with mothers have revealed that they are aware of the impact of caring responsibilities and time pressures and want to recover their own health after their child’s early years (Bourke-Taylor et al., 2010; Dehghan et al., 2021), but they point to a lack of available services to support their own health (Bourke-Taylor, Grzegorczyn, & Joyce, 2021; Gilson, Davis, et al., 2018; Lee et al., 2020).
Hence, research with mothers of children with disabilities suggests that five key elements should guide the content and aims of an intervention to benefit the health of mothers. Intervention should (1) validate the complexity of caregiving and its impact on health and well-being, (2) promote insight into ways to reduce the complexity of daily occupations, (3) empower mothers to find their own occupational balance, (4) demonstrate and support mothers in increasing healthy behaviors, and (5) direct mothers to seek help for themselves.
To guide the development of the current adapted Healthy Mothers Healthy Families (HMHF) coaching intervention, Bourke-Taylor, Lee, et al. (2021) conducted a systematic review of interventions to improve the mental health of mothers of children with disabilities. Thirty-one articles were retrieved and the interventions analyzed. Twenty-six interventions were delivered via groups, and five were delivered one-to-one. Only one intervention was delivered by the child’s therapist (Feinberg et al., 2014). Feinberg et al. (2014) used a cognitive–behavioral approach to support mothers to identify a goal and make changes over six sessions with the child’s early intervention allied health provider. The integration of health coaching for mothers into the child’s intervention was deemed suitable for mothers, aligning with other research that advocates for the development of enfolded services (Gilson, Davis et al., 2018).
In the current study, we sought to extend the availability of an evidence-based intervention by integrating the intervention for mothers into occupational therapy sessions being provided to their child with disabilities. HMHF aims to empower mothers to improve their own health and well-being. Codesigned through preliminary research (Bourke-Taylor et al., 2010) and evaluated by the mothers who participate, the program is delivered online and in face-to-face day workshops to groups of mothers. The website (https://healthymothers-healthyfamilies.com/) offers a self-paced course that includes multimedia and is freely available to mothers to complete by themselves. Initially designed and delivered in evening or full-day workshops led by an occupational therapist (Helen Bourke-Taylor) and a general practitioner (physician) who specializes in women’s health, the program was upscaled in 2018, and mothers of children with disabilities were trained to deliver the face-to-face and online group programs (Bourke-Taylor, Grzegorczyn, & Joyce, 2021). The workshops have been found to be effective when facilitated by professionals (Bourke-Taylor et al., 2019) and by credentialled mothers (Bourke-Taylor et al., 2022a).
The effectiveness of implementing the principles and the HMHF program in an individual coaching model with pediatric occupational therapists is unknown. A recent qualitative study investigated the opinions of occupational therapists who were interviewed about their role in family-centered practice. The therapists believed that responsibilities such as supporting parents could cause role confusion, insecurity in skills, and the risk of working outside of their scope of practice (Pereira & Seruya, 2021). Hence, research into the program’s applicability and acceptability was necessary.
We implemented a feasibility study to pilot an individually delivered HMHF coaching package, HMHF–Health Promoting Activities Coaching (HPAC), for mothers and to determine whether delivery by the child’s occupational therapist enabled investigation of acceptability to participants. A mixed-methods design allowed exploration of participant experiences in a qualitative study (Harris et al., 2022) and a positivist approach to objectively measuring the outcomes for participants involved in the intervention with the outcomes for those who were not. The combination of philosophical perspectives, types of data, methods, and design enabled an investigation of the HMHF–HPAC’s feasibility (Shan, 2022). The qualitative study (Harris et al., 2022) included interviews with the first 7 participants and investigated the program’s acceptability to participants. The research questions for the current quantitative study were as follows: How effective is HMHF–HPAC at improving scores on the Depression Anxiety Stress Scale–21 Items (DASS–21) and Health Promoting Activities Scale (HPAS) and supporting changes in the health of mothers of children with disabilities, compared with no intervention? How applicable are the DASS–21 and HPAS as outcome measures to detect mental health and health behavior changes for the participants over six sessions of one-to-one HMHF–HPAC, compared with no intervention?
Method
A mixed-methods embedded design (Creswell & Plano Clark, 2017) enabled us to investigate the HMHF–HPAC’s acceptability (qualitative study; see Harris et al., 2022) and its effectiveness and outcomes (current nonrandomized controlled pilot study).
Research Design
Feasibility studies guide the development of interventions for the purpose of future larger trials. In this pilot feasibility study, we used a quantitative, nonrandomized controlled trial to explore instruments and preliminary effectiveness of the HMHF–HPAC intervention, which enabled us to compare the outcomes of participants who received the intervention with those of participants who did not and to investigate suitability of outcome tools (Eldridge et al., 2016). This project was approved by Monash University Human Research Ethics Committee (Project No. 26271).
The nonrandomized design enabled two groups to be configured: Group 1 (the intervention group) received HMHF–HPAC and Group 2 (the control group) did not. Both groups continued to receive standard occupational therapy service for their child.
Participants
Inclusion criteria required participants to be (1) the mother of a child with disabilities receiving occupational therapy at the partnership organization; (2) willing to participate in coaching sessions; and (3) willing to engage with the program, including 6 hr of online content over 12 wk. Eligible mothers of children currently receiving occupational therapy were identified by the occupational therapists.
Instruments
Online questionnaires, administered via the Qualtrics Research Platform, were used to collect demographic characteristics, health service use, and changes mothers hoped to achieve in the next 3 mo and included two scales to measure subjective mental health and participation in healthy behavior—the DASS–21 (Lovibond et al., 1995) and the HPAS (Bourke-Taylor et al., 2012). The HPAS was specifically designed as an outcome tool for the HMHF group programs and had not been evaluated for one-to-one coaching.
The scales were scored according to published directions. Health-promoting behaviors were measured by including questions about changes participants aimed and managed to achieve (healthy eating, physical activity). Health professional help seeking was measured by asking participants what new health services they had connected with to improve their health and well-being. Table 1 outlines the construct measured by and a concise description of each instrument and its relevant psychometric information and reliability.
Description of Instruments and Reliability of the Measures Using Cronbach’s α
Note. DASS–21 = Depression Anxiety Stress Scale–21 Items; HPAS = Health Promoting Activities Scale.
Intervention
Description
The HMHF–HPAC intervention was delivered by an occupational therapist familiar with the families: Eight mothers received coaching from their child’s occupational therapist as part of their child’s therapy session or via telehealth, depending on the mother’s preference, and 3 mothers received coaching via phone from a senior occupational therapist who had more than 20 yr of experience with families because the family’s occupational therapist resigned before HMHF–HPAC commenced and the mother elected to proceed. Each mother received six coaching sessions. Supplementary information, including the frequency, duration, intensity, and format of intervention delivery, is provided in the Template for Intervention Description and Replication (TIDieR; see Table A.1 in the Supplemental Appendix, available online with this article at https://research.aota.org/ajot). The HMHF–HPAC had three main components: (1) the coaching intervention, which included six set sessions; (2) a workbook provided to the mother in electronic or paper format that provided evidence-based information and worksheets to complete in Sessions 1–6; and (3) the self-paced online package with a 10-module online learning package.
The coaching conversations were anchored around the HPAS (Bourke-Taylor et al., 2012, 2014) and small changes to emotional well-being, physical activity, and healthy eating. Coaching also included supporting mothers to identify supports they could use to assist them with making these changes.
Training Occupational Therapists to Deliver the Intervention
The first author (Bourke-Taylor) initially trained 11 occupational therapists added to the training before the trial commenced. All occupational therapists worked for Everyday Independence, a therapy services provider, making inclusion possible for all Australians through the social model of disabilities. All occupational therapists identified with a strengths-based, goal-directed, family-centered approach to practice. The occupational therapists were located in Melbourne, Victoria; regional Victoria; and Sydney, New South Wales, Australia. Training in the HPAC intervention included two 2.5-hr online webinars that included handouts, information on the project’s research design, research into the physical and mental health of mothers of children with disabilities, the development and psychometrics of the HPAS, the content of the HMHF program, and ways to coach mothers to engage with the six-session plan available in the workbook, the website, and instruction on the structure of the HMHF–HPAC. Two more hour-long online webinars provided support and debrief opportunities.
Fidelity
Fidelity was specifically addressed though equivalent training of the interventionists (occupational therapists) and provision of the three main components of the intervention. Furthermore, the detailed TIDieR was explained and provided to all interventionists, thus guiding replicability of the HMHF–HPAC between and within interventionists’ work with mothers (see the How Well section of Table A.1 in the Supplemental Appendix for more explanation).
Data Collection
Occupational therapists offered the opportunity to participate in HMHF–HPAC to mothers in person or via email. Participation in the research was voluntary. If a mother was interested, the occupational therapist emailed the explanatory statement and online prequestionnaire link. Mothers provided informed consent via the online embedded consent form. They were assured that they could withdraw from the study at any point and this would not affect the occupational therapy services provided to their child and family. Mothers completed the postintervention questionnaire an average of 10 wk after the initial questionnaire (see Figure 1). Hence, all data collection was submitted directly by participants using online technology.
Participant flow diagram for recruitment and data collection for the HMHF–HPAC.
Data Analysis
We analyzed the data using Excel 2016 and IBM SPSS Version 28. Little’s (1988) Missing Completely At Random test was used to determine whether scale data were missing at random or missing systematically (nonrandom); this test was not significant, χ2(110) = 87.47, p = .944. As a result, all data were treated as missing at complete random. Listwise deletion was applied to conduct the main analyses. Descriptive statistics were computed for all scales and variables of interest, including changes participants aimed for or achieved and health professional access. Data measured on continuous scales of measurement were examined for kurtosis and skew to identify potential violations of the assumption of normality of distribution using the Shapiro–Wilk test before use of parametric statistics based on the normal distribution.
The intervention effect was evaluated by comparing the intervention and control groups across time. Preliminary analyses were performed to explore the assumptions of normality, equality of variances, and sphericity for the mixed-design analysis of variance (ANOVA). All assumptions were met. Mixed-design ANOVA, with time (pretest and posttest) as the within-subject variable and group (intervention group and control group) as the between-subjects variable, was used to detect effects of time and Time × Group interactions for each of the outcome measures (DASS–21 subscale scores and HPAS total score). Follow-up analyses were conducted by splitting the file on the basis of group (Group 1, intervention, and Group 2, control) to investigate the effects of time (preintervention and postintervention). Partial η2 (η2 p) was used to calculate the size of the effect (η2 p = .01 indicates a small effect; η2 p = .06 indicates a medium effect; and η2 p = .14 indicates a large effect; Tabachnik & Fidell, 2019). A two-tailed α significance criterion of .05 was used for all tests.
Results
Twenty-three participants enrolled in the study and completed the preintervention questionnaire (see Figure 1). Eleven participants enrolled and completed the intervention (Group 1); 12 were allocated to the control group and did not (Group 2). Seven participants from Group 2 withdrew after completing the prequestionnaire as a result of personal circumstances, including children’s needs, changes in services, and family issues related to the coronavirus disease 2019 (COVID-19) pandemic. Mothers (n = 16) retained in the study described children ages 2 to 12 yr (M age = 5.7 yr, SD = 2.7). Three mothers had three children with disabilities, and 20 mothers had one child with disabilities. The mothers reported multiple disabilities for the 29 children described; the most common were autism (n = 14; 48%), followed by attention deficit hyperactivity disorder (n = 8; 28%), and developmental delay (n = 6; 21%). Thirty-five percent of mothers had been diagnosed with a mental health condition. Other characteristics of the participants in Groups 1 and 2 are compared in Table 2, including areas for intended changes over the next 12 wk.
Characteristics of Participants at Time 1 (Preintervention; N = 23)
Percentages may not total 100 because of rounding.
Percentages do not add up to 100 because the participants selected all that applied.
Feasibility of the HMHF–HPAC Intervention
We conducted mixed-design ANOVAs to explore changes in scores (from before to after participation in the HMHF–HPAC intervention) across the outcome variables of interest: the three DASS–21 subscales (DASS–Stress, DASS–Depression and DASS–Anxiety) and the HPAS. We expected that scores on these scales would improve for the Group 1 participants and stay relatively the same for Group 2. The mean pre- and postintervention scores for the DASS–Stress, DASS–Depression, DASS–Anxiety, and HPAS scales across groups are shown in Figure 2.
Mean pre- and postintervention scores on the outcome variables (DASS–Stress, DASS–Depression, DASS–Anxiety, and HPAS) for intervention and control groups.
A total of four mixed-design ANOVAs were conducted on the data: one on each DASS–21 subscale (DASS–Stress, DASS–Depression, and DASS–Anxiety) and one on the HPAS. For two DASS–21 subscales, the Time × Group interaction was significant: DASS–Stress, F(1, 13) = 8.95, p = .010, η2 p = .41, and DASS–Depression, F(1, 13) = 6.59, p = .023, η2 p = .34. A similar trend was found for DASS–Anxiety, but it did not reach statistical significance, F(1, 13) = 1.37, p = .262. However, as can be seen in Figure 2, this decrease in mean scores was only apparent for Group 1. Group 2’s scores either remained unchanged or slightly decreased. A further mixed-design ANOVA was conducted on the HPAS data. The Time × Intervention interaction was not significant, F(1, 13) = 3.34, p = .091. However, there was a significant difference in the mean scores on the HPAS across time, F(1, 13) = 6.65, p = .023, η2 p = .34, with a similar decrease in mean scores only for Group 1 (see Figure 2).
After the intervention, all mothers in Group 1 reported changes that improved their health and well-being in at least one area they had identified on the preintervention questionnaire: changes to my mental health and well-being (n = 6; 55%); changes to the way I manage stress in daily life (n = 4; 36%); changes to my family’s leisure routine (n = 2; 18%); changes to the way we manage stress in my family (n = 3; 27%); changes to the people that I spend time with (n = 2; 18%); changes to my leisure routine and participation in healthy activity (n = 6; 55%); changes to my physical activity (n = 5; 46%); changes to my diet (n = 5; 46%); changes to how I view myself (n = 6; 55%); and changes to my sleep quality (n = 3; 27%). After the HMHF–HPAC intervention, 8 mothers increased their health services use and accessed the following services: lifeline (n = 1; 9%), general practitioner (n = 5; 46%), psychologist (n = 2; 18%), mental health practitioner or counselor (n = 3; 27%), physiotherapist (n = 2; 18%), dietitian (n = 1; 9%), and medical specialist (n = 2; 18%).
Feasibility of the Outcome Measures
Separate within-group ANOVAs were conducted on the DASS–Stress and DASS–Depression data to investigate the effect of time for Groups 1 and 2. For Group 1, there was a significant decrease across time in scores on the DASS–Stress subscale, F(1, 9) = 20.93, p = .001, η2 p = .69, and DASS–Depression subscale, F(1, 13) = 13.61, p = .005, η2 p = .60. For Group 2, there was no significant main effect for time on the DASS–Stress subscale, F(1, 4) = 1.19, p = .338, and DASS–Depression subscale, F(1, 4) = 1.16, p = .714. As can be seen in Figure 2, on average the mean HPAS scores for Group 1 increased significantly, F(1, 9) = 10.30, p = .011, η2 p = .53. For Group 2, there was no significant difference across time, F(1, 4) = 4.26, p = .108.
Discussion
This study evaluated the feasibility of the HMHF–HPAC, a short, packaged mental health and health promotion intervention for mothers of children with disabilities. The HMHF–HPAC intervention significantly improved symptoms of depression and stress and the frequency of health-promoting behaviors. All mothers in Group 1 reported positive changes in their lifestyle, and 8 of 11 mothers reported accessing a health service after the intervention. In the overall mixed-methods study, we determined that the HMHF–HPAC is a feasible intervention. Findings from this nonrandomized pilot study are congruent with those of the qualitative study, which concluded that mothers found the delivery of the program (being coached by their child’s occupational therapist) and the content, website, and program workbook to be acceptable (Harris et al., 2022).
The outcome tools were suitable for the individually delivered HMHF–HPAC. The DASS–21 and HPAS both detected significant changes in Group 1, compared with Group 2, over the same period. The DASS–21 detected significant reductions in stress and depressive symptoms. The HPAS was specifically designed for the HMHF health lifestyle design program, based on the premise that reduced mental health and well-being are associated with infrequent participation in healthy occupations such as leisure, connecting with others, and being physically active (Bourke-Taylor, Law et al., 2012, 2022b). Past research has indicated that a change of 5 points in HPAS total score is indicative of significant change in positive health behaviors (Muskett et al., 2017), whereas in the current study the intervention group achieved a statistically significant 9-point change. Hence, future HMHF–HPAC studies should retain the HPAS as an outcome measure sensitive to healthy behavior change.
The previous qualitative study (Harris et al., 2022) provided insight into the experience of the first seven mothers to complete the intervention. Mothers felt recognized and motivated to participate in a program tailored to them and empowered to set goals and action change using the tools provided in the workbook and on the website and through the encouragement of their occupational therapists. Mothers also reported improved mood and energy levels, reduced stress and anxiety, greater self-awareness, and increased engagement in leisure activities with their children.
Merging the results of the qualitative study and the current study indicates that the research design and intervention were feasible and contained the following workable elements: Training of occupational therapists involved 6 hr of group training using video technology by Bourke-Taylor; occupational therapists were able to recruit mothers; mothers participated in both the pre- and postintervention questionnaires regardless of whether they received HMHF–HPAC within the study period; outcome tools were quick to complete and there were few missing data. In future studies, the period for recruitment and intervention should be extended for 1 to 2 yr to provide mothers with a longer period to enroll in the intervention.
High stress and health disparity are universal phenomena for mothers of children with disabilities, who are reluctant to seek help for themselves. As many as 75% of mothers of a child with disabilities perceive a need for support for their own mental health, although 42% do not seek out this support (Gilson, Johnson, et al., 2018). In the current study, most mothers made positive health behavior changes and accessed health services to enlist professional health services for themselves.
In sum, both the qualitative study (Harris et al., 2022) and this nonrandomized pilot study point to the feasibility of the HMHF–HPAC intervention.
Pediatric occupational therapy practitioners have been implementing coaching approaches to working with children with disabilities and their mothers in a one-to one capacity in face-to-face interactions (Graham et al., 2014), and using telehealth (Little et al., 2018), for some time. Such approaches usually enlist mothers to address parenting occupations (Lim et al., 2022) through problem solving and implementing changes that will facilitate their child’s occupational performance or change the family routine and family functioning (Foster et al., 2013; Graham et al., 2009). The HMHF–HPAC is unique because the program started as a group program delivered by professionals and then credentialled mothers of children with disabilities, and this feasibility study further extends the program’s reach. The current study provides preliminary effectiveness evidence supporting pediatric occupational therapists to collaborate with mothers and deliver the program one to one, embedded in pediatric practice.
Limitations
Limitations of the study include the short recruitment period for this unfunded study. These factors resulted in the loss of 7 participants before they began the intervention program. Randomization was not possible because participants were recruited to the project to participate in HMHF–HPAC. Another limitation was that mothers self-reported their current status, which left open the possibility of positive reporting, even though the interventionists were shielded from data collection and analysis. Last, although this feasibility study showed positive effects, the small sample size limits the generalizability of the results, and future studies with appropriately powered sample sizes are needed.
Future Research
Future research might include a larger clinical trial that uses a wait-list control group and randomization based on mothers’ availability to start the intervention. In this study, start times were flexible because the intervention was delivered individually across the 16-wk block available for the study. However, this time period included the recruitment, intervention, and data collection periods. In future funded, larger scale studies, mothers’ start times should be flexible to accommodate mothers’ schedules and over an extended period to enable more participants to enroll. Future studies might compare telehealth coaching and face-to-face coaching within the pediatric therapy service. Future studies may also investigate occupational therapists’ experiences while delivering the HMHF–HPAC intervention.
Implications for Occupational Therapy Practice
The current study identified a new specific intervention to provide support to mothers of children with disabilities. This study has the following implications for occupational therapy practice: Detecting intervention points is important to enable an entry point for appropriate and responsive occupational therapy services to be developed. Intervention points that align with the needs, usual behavior, and occupational patterns of the target group increase the likelihood of uptake and program success. This pilot study provides an example. HMHF–HPAC provides occupational therapists with an intervention that is family focused, is of value to mothers, and may be key in better supporting the health of mothers. The field of occupational therapy asserts practitioners’ position as mental health advocates and mental health promotion and prevention providers (American Occupational Therapy Association, 2020). In pediatrics, occupational therapists have the skills to support parents who seek better health and well-being (Catalano et al., 2018), and HMHF–HPAC is a promising intervention for the profession that can now be trialed in a larger study.
Conclusion
The HMHF–HPAC program is a viable occupational therapy coaching intervention when embedded in existing pediatric occupational therapy practice. The research design and instruments used in this study are feasible for a larger trial to further evaluate the effectiveness of the HMHF–HPAC intervention for mothers of children with disabilities. Given that children with disabilities are clients of occupational therapy services throughout their childhood, HMHF–HPAC provides occupational therapists with an intervention that is family focused, is of value to mothers, and may be key in better supporting the health of mothers. The downstream benefits of being cared for by a healthy empowered mother is immeasurable to children with disabilities. The occupational therapy profession is well placed to fill this current service gap in providing better support to mothers.
Supplemental Material
Supplementary material for Feasibility of Health Promoting Activity Coaching for Mothers of Children With Disabilities: Pilot Nonrandomized Controlled Trial
Supplementary material, sj-pdf-1-aot-10.5014_ajot.2023.050116.pdf for Feasibility of Health Promoting Activity Coaching for Mothers of Children With Disabilities: Pilot Nonrandomized Controlled Trial by Helen Bourke-Taylor, Monica Leo, Vanessa Harris and Laura Tirlea in The American Journal of Occupational Therapy
Footnotes
Acknowledgments
We gratefully acknowledge the contribution of Everyday Independence, the occupational therapists trained to provide HMHF–HPAC, and all participating mothers.
References
Supplementary Material
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