CHILDREN of parents with intellectual disabilities (ID)* are at risk for neglectful care that leads to health, developmental, and behavioural problems (Feldman, 1997, 2002a; Feldman & Walton-Allen, 1997). Most of these problems can be traced to parenting skill deficiencies, rather than purposeful abuse or neglect. Many of these parents (who come to the attention of social service and child protection agencies) lack critical knowledge and skills in providing adequate instrumental child-care (Feldman, 1998b; Feldman, Case, & Sparks, 1992), a safe home environment (Barone, Greene, & Lutzker, 1986; Feldman & Case, 1999; Tymchuk, Hamada, Andron, & Anderson, 1990b; Watson-Perczel, Lutzker, Greene, & McGimpsey, 1988), proper nutrition (Feldman, Garrick, & Case, 1997; Sarber, Halasz, Messmer, Bickett, & Lutzker, 1983), and nurturing interactions (Feldman, Sparks, & Case, 1993; Slater, 1986; Tymchuk & Andron, l992). Parents with ID also have difficulties in problem-solving (Tymchuk, Yokota, & Rahbar, 1990), recognizing and treating medical emergencies (Feldman & Case, 1999; Tymchuk, Hamada, Andron, & Anderson, 1990a), and understanding basic child development information (Tymchuk, Andron, & Tymchuk, 1990).
Fortunately, many of these problems can be rectified through parent education and supports (Feldman, 1994). Effective parent training typically involves frequent (eg, weekly) instruction in the home (or a home-like setting) by specially trained parent educators. Skills are trained individually by direct instruction methods including task analysis, illustrations, prompting, modelling, feedback, and reinforcement (Feldman, 1998b). This training enhances child health and development and dramatically decreases the need for child custody intervention (Feldman et al., 1992, 1993, 1997).
Despite the existence of an evidence-based parent educational technology for this population, few specialized programs exist. Many family support and early intervention programs are not equipped to commit to the intensive and long-lasting supports these families require. Workers often do not have the unique (broad) set of knowledge and skills needed to effectively function as parent educators. These competencies comprise knowledge of child development, health, safety, and nutrition, as well as effective teaching methods for adults with cognitive and literacy limitations. In addition, a parent educator should be unbiased, nonjudgmental, empathic, and offer competency-enhancing support (Espe-Scherwindt & Kerlin, 1990; Feldman, 2002b; Tucker & Johnson, 1989).
More cost-effective and disseminable parent education approaches are needed to reach as many of these families as possible to reduce the incidence of child neglect due to parenting skill deficits. A promising efficient approach is self-directed learning using specially designed audiovisual materials. Several studies have added illustrations to full training packages to function as memory aides in between training sessions and after training was completed (Feldman, Case, Garrick, et al., 1992; Feldman et al., 1992, 1997; Sarber et al., 1983; Tymchuk et al., 1990a, 1990b). It occurred to us that perhaps inexpensive, easily distributed audiovisual materials could be designed for independent self-instruction of parenting skills, thereby eliminating the need for intensive training by specially trained parent educators (at least for some parents). The materials could remain with the parents, serving as permanent prompts to encourage generalization and maintenance of child-care skills (Wacker, Berg, Berrie, & Swatta, 1985). Successful experiences in self-directed learning may have the added benefit of promoting parental empowerment, self-confidence, and self-esteem (Christensen & Jacobson, 1994). Before describing the development, use, and evaluation of self-directed child-care training for parents with ID, I will briefly summarize the literature on self-directed parent training for parents without ID and the use of self-instructional audiovisual materials to teach skills to persons with ID.
Self-directed parent education for parents without ID
Many more people read self-help books than seek professional counselling for psychological problems (Christensen & Jacobson, 1994) and parenting is no exception; self-help parenting books abound and many bookstores have a dedicated section. Meta-analysis supports the effectiveness of self-administered parent training (Scogin, Bynum, Stephens, & Calhoon, 1990). Instructional parenting manuals and videotapes have been shown to be more effective than wait list controls, and as effective (and more cost-effective) than therapist-led training for parents of children with a variety of issues including behaviour problems at home and in the community (Bauman, Reiss, Rogers, & Bailey, 1983, Clark et al., 1977; Connell, Sanders, & Markie-Dadds, 1997; Ergon-Rowe, Ichinose, & Clark, 1991; Sanders, Markie-Dadds, Tully, & Bor, 2000; Webster-Stratton, Kolpacoff, & Hollingsworth, 1988), sleep problems (Seymour, Brock, During, & Poole, 1989), fears (Giebenhain & O'Dell, 1984), enuresis (Besalal, Azrin, Thienes-Hontos, & McMorrow, 1980), and self-care skill deficits (Kashima, Baker, & Landen, 1988).
Self-directed learning for persons with ID
While the use of self-directed approaches for parents without ID is supported, it is not clear whether parents with cognitive limitations would respond as well. Research shows that persons with ID can learn relatively complex repertoires, such as domestic (Alberto, Sharpton, Briggs, & Stight, 1986; Wacker et al., 1985), cooking (Johnson & Cuvo, 1981; Robinson-Wilson, 1977), computer use (Frank, Wacker, Berg, & McMahon, 1985), Internet access (Davies, Stock, & Wehmeyer, 2001), academic (Van Luit & Naglieri, 1999), self-care (Stephan, 1987; Thinesen & Bryan, 1981), and vocational skills (Agran & Moore, 1994; Alberto et al., 1986; Connis, 1979; Davies, Stock, & Wehmeyer, 2002; Davis, Brady, Williams, & Burta, 1992; Sowers, Verdi, Bourbeau, & Sheehan, 1985; Wacker & Berg, 1983; Wacker et al., 1985) via self-instruction involving audio or visual cues. Thus, there is reason to believe that parents with ID could learn a set of specific parenting skills via self-learning.
SELF-DIRECTED PARENTING EDUCATION FOR PARENTS WITH ID
The parent education assessment and intervention model that includes the self-directed approaches described herein was developed in 1981 at Surrey Place Centre, Toronto, Canada. Surrey Place Centre is funded by the provincial government to provide a variety of community outreach professional services to persons with ID. The Parent Education Program (PEP) started as a demonstration project and was funded by internal service and external research grants until 1987 when the program became part of the center's internal operating budget. Over the years, PEP has provided services to hundreds of families. From 1982 to 1994, I was director of the program and principal investigator on all research grants (totalling over Can $300,000). PEP therapists have had undergraduate and graduate degrees in psychology, nursing, and early childhood education. PEP works closely with other agencies in Toronto providing services to families headed by parents with ID, including child protection, public health nurses, adult support workers, case coordinators, and daycares. Today, PEP (now called the Parent Enhancement Program) remains one of the few services in the world dedicated exclusively to these families.
We designed child-care checklists that are task analyses of important basic child-care, health, safety, and interactional skills (particularly for newborn to preschool age range), based on current validated source materials. Pediatric health care professionals (eg, pediatricians, public health nurses, nutritionists) reviewed the content of the checklists and recommended changes that we incorporated into the final versions. We have used these checklists in numerous studies to evaluate full training (Feldman, Case, Garrick, et al., 1992; Feldman et al., 1992, 1997, self-learning (Feldman & Case, 1997, 1999; Feldman, Ducharme, & Case, 1999), and skills of parents without ID (Feldman, 1998a). The checklists have good content validity, baseline stability, and high interobserver agreement (mean percentage agreement was 90.8%, 91.5%, and 95%, respectively, in the 3 published self-learning studies). The checklists differentiate the (pretraining) child-care performance of parents with and without ID (Feldman, 1998a) and detect short-term and long-term changes in parenting skills due to training. Table 1 illustrates the preparing the bath child-care checklist used in our work
Development of manuals and audiotapes
The self-instructional materials cover the contents of the child-care checklists. The pictorial manuals illustrate each checklist item for 25 basic parenting skills relevant for children aged 0 to 5 years old. We have compiled the checklists and manuals (and additional materials) into a 230 page, parenting handbook (Case & Feldman, 1993) available from the author at cost. Table 2 presents the list of skills for which manuals are available.
The pictures in the manuals are line drawings traced from photographs, ranging in size from 7.3 cm × 9.6 cm to 10 cm × 12.5 cm. As seen in Fig 1, each picture depicts a step of the task analysis (no more than 2 pictures per page). We experimented with different images (actual photos, cartoon drawings), but we found that parents with low literacy skills preferred and best understood the line drawings. The line drawings are easy to reproduce; they allow us to control how much information is illustrated and emphasize the most important elements in the picture. We recognized that most of the pictures were not self-explanatory; hence, we added short titles above, and brief descriptions, beside, each picture. The text and format of all the manuals were guided by research with persons who have below average literacy skills (Doak, Doak, & Root, 1995). The reading level of the manuals average grade 3, and is no higher than grade 6 (based on Fry formula, in Doak et al., 1995). Pediatric health care professionals reviewed and approved the manuals prior to extensive field-testing by parents with and without ID
Not all skills lent themselves to task analysis, so some manuals were set up as discrimination tasks. For instance, as seen in Fig 2, the home safety manuals have 2 pictures side-by-side on each page. The one on the left (titled, “Find”) illustrates a safety hazard (eg, a plastic bag within reach of the child) and the picture on the right (titled, “Fix”) shows the “parent” putting the hazard out of reach of the child (eg, putting the bag on the top shelf of a cupboard). Below these 2 pictures are illustrations of generalization items (ie, different types of bags). As seen in Fig 3, the medical emergencies manuals consists of illustrations of various childhood ailments and accidents, one to a page (or card) for “When to Call the Doctor” or “When to Call 911.” After reviewing the manuals, the parents sort a shuffled deck of these pictures into 2 piles—whether the condition is serious enough to call 911 (eg, child was unconscious) or calling the family physician (or telemedicine information) is sufficient (eg, mild diaper rash).
Some of the parents were unable to read even the simple text in the manuals, so we recorded supplementary audiotapes. The audiotapes consist of a woman with a clear voice slowly reading the written contents of each manual. The voice provides instructions on where to look on the page and when to turn the page. The audiotapes are standard size cassettes suitable for portable cassette players. We provided players and batteries to the parents involved in our studies.
After obtaining informed consent, and making several home visits to develop rapport and make informal observations, we observe the parent caring for the child on a typical day or at different times over several days. We ask the parent to “do what you usually would do.” As the parent performs a particular task (eg, diapering), we fill out the relevant child-care checklist. If toward the end of the visit, the parent has not performed a skill that we wish to observe, then we ask them to do so (if it is not too disruptive to the child or family routine). To check home safety, we inspect the home for hazards, along with the parent (to determine the parent's ability to identify household hazards). We also orally administer several checklists of knowledge and skills that cannot be readily observed during a home visit (eg, responding to medical emergencies; treatment of common childhood ailments) and we document the parent's verbal responses.
Correct and incorrect responses are noted on each step of the checklist. A correct score means that the step is performed as specified, without trainer instruction, prompting, or assistance while the parent attempts the task. Not performing the step independently (or at all) is scored as incorrect. Steps can be completed in a different sequence than in the task analysis as long as this order does not compromise the otherwise correct (and safe) task performance. We calculate the percentage correct score on the whole task as the number of steps performed correctly divided by the total number of steps times 100%. Unless we need to fix something immediately (eg, the bath water is too hot), we offer no instruction during the assessment, baseline or subsequent self-learning phase. Following the assessment, we inform the parents which skills they performed adequately—same as the mean performance of a group of known competent parents (Feldman, 1998a)—and which skills could be improved. If the parent needs training on more than 1 skill, we give them a choice of which one they want to try first. This skill assessment is the same whether we plan to use self-directed learning or full training (Feldman, 1998a, 1998b).
After completing the parenting skills assessment, we schedule several home visits to monitor baseline performance. To ensure that skill performance is consistently below criteria, we prefer to obtain approximately 3 baseline points over several weeks before starting training (if a skill needs to be trained quickly—eg, diaper rash treatment—we usually start training immediately after 1 baseline session). We ask the parent to perform the to-be trained skill usually at a time when the parent would naturally be performing the skill (eg, when the baby's diaper needs changing). We provide no further instructions, training, or feedback. An individual baseline session lasts as long as it takes the parent to demonstrate the skill being observed (eg, 5–10 min). We also monitor baseline performance on other skills that also need training.
Training the use of the manuals
Most parents with whom we have worked quickly learn how to use the self-instructional manuals and audiotapes. First, we read the manual together. We ask the parent to describe each picture and read the accompanying text to the best of her/his ability. We record oral reading errors and immediately correct them. We then ask some comprehension questions to determine if the parent fully understands the contents of the manual (eg, “What do you do after you finish changing the baby's diaper?” Answer: “Put the diaper in the garbage and wash my hands.”). If the parent did not answer a comprehension question correctly, we would review the relevant section of the manual and provide further remediation as needed. This instruction takes about half hour. Note that this training is only done once, when the manual is introduced for each skill needing training.
Training the use of the audiotapes
We routinely offer the parents audiotapes that orally present the manual text. We show them how to install the tape, plug in and wear the headphones, operate the tape player, and change the batteries (most parents already knew how to operate a cassette player). We then ask them to listen to the tape while reading along (silently), and pointing to the picture being described on the tape. Using a dual headphone jack, we listen on a second set of headphones to be sure that the parent is following the directions on the tape (eg, when to turn the page). We originally suggested that the parent use the manual (and listen to the tape) while they performed the task. Parents informed us, however, that they found it cumbersome to do so. Now we recommend that they review the materials just before needing to do the task.
Monitoring use of the manual
Several days after leaving the materials with the parent (and sometimes in between subsequent home visits), we call to ask whether (and how often) the parent used the materials during the interim period. Regardless of the response, we do not say anything specifically about the skills or using the manual. We schedule weekly home visits to observe the parent performing the designated child-care skills (ones that have or would receive the self-instructional materials). As in the assessment, we again use the child-care checklists to monitor performance and we (initially) do not provide any prompting or feedback.
If the parent does not make substantial progress after about 3 or 4 visits, we institute a 2-level least-to-most prompting procedure over several weeks. In the first level, we gently remind the parent to use the materials. If no improvement is noted on the next visit, we may repeat the level 1 prompt or give a level 2 prompt in which we ask the parent to read the manual out loud in our presence (we always bring extra copies of the manual and tapes in case the parent claims that he/she lost the materials); with level 2 prompts, the trainer more assertively recommends that the parent review the materials each time he/she needs to perform the task.
We continue weekly monitoring visits until the parent meets criterion on that skill (80% over 2 consecutive visits); we then gradually fade observations of that skill from once a week to once a month, every 3-months, to every 6-months. If the parent needs training on another skill, we offer another set of materials, usually on the same visit when the parent met criterion on the first skill.
If the parent fails to meet criterion by about the seventh monitoring visit and did not respond to the prompts, then we offer full training. Full training consists of supplementing the self-directed learning with trainer-directed teaching including verbal prompting, modelling (of the specific steps the parent is performing incorrectly), praise for correct responses, and corrective feedback (see Feldman, 1998a, 1998b, for more details).
EVALUATION OF SELF-DIRECTED LEARNING FOR PARENTS WITH ID
We have conducted a series of controlled field-tests of our self-directed parenting training protocols using multiple baseline across skills and participants and alternating treatment designs Barlow & Hersen, 1984). The alternating treatments study compared self-directed instruction on different skills (of similar difficulty) with the manual plus audiotape to that with the manual alone or to no training within the same participant (Feldman & Case, 1997). The no training skills were subsequently trained using either the manual alone or the manual plus audiotape, but monitoring sessions were conducted monthly rather than weekly. Here, I summarize the results across the 3 published studies involving 30 mothers and 3 fathers with ID (Feldman & Case, 1997, 1999; Feldman et al., 1999).
Details of the 33 families who participated are found within the respective publications. Briefly, the parents were all considered to have ID, based on recent eligibility assessments for government funding and services reserved for persons with ID. In Ontario, the definition of ID is synonymous with the DSM-IV definition of mental retardation (American Psychiatric Association, 1994). Most participants received this diagnosis when they were in school, but we were aware that some of the parents had adult IQ scores between 70 and 80. Nonetheless, they continued to receive ID services, including ours; we found that these “borderline” IQ participants in fact demonstrated parenting skill deficits similar to that of parents with IQs <70. In addition to the parent education service described herein, many of the parents received additional services such as a support worker (who helped with aspects of daily living such as budgeting, finding accommodations, and employment), public health nurse (available to all high-risk families), and a visiting homemaker (to keep the home clean and teach domestic skills). All parents were able to give their own informed consent to (voluntarily) participate (we read the program information and consent forms to them and the parents signed the consent form in front of a witness of their choice).
Child protection services were supervising 79% of the families and some children had been placed in care at different times. All of the families were living independently in the community below the poverty line (30% were living in subsidized housing), 82% received welfare or disability allowance or both. The mean age of the parents was 26.3 years, range: 19 to 40 years, and 73% were married. Although up-to-date IQ scores were unavailable for most of the parents, their mean reading grade level was 4.1, range: 1.25 to 8.25, based on the Wide Range Achievement Test (Jastak & Wilkinson, 1984). The mean age of the target children (17 females, 16 males) was 9.9 months, range: 2 to 51 months.
The starred items in Table 2 are the 21 skills for which training was given across the 33 participants. Table 3 summarizes pertinent findings from each study. Note that in Feldman and Case (1997) there were 4 within-subject training conditions with different skills: manual and audiotape (weekly or monthly monitoring) and manual alone (weekly or monthly monitoring); in total, 50 of 61 skills (82%) reached criterion in a mean of 3.5 trials. These results are comparable to our full training outcomes with similar parents and skills (Feldman, Case, Garrick, et al., 1992; Feldman et al., 1992, 1997; Tymchuk et al., 1990a, 1990b). Figure 4 illustrates the combined results across the 3 studies. Note that performance continued to increase in the follow-up period (mean = 7 months; range: 0.4 to 43.4 months).
Across all studies, 96% of the skills that met criteria via self-learning maintained above 80% in follow-up without further training. Skills were maintained despite monitoring being reduced to once every 6-months and most of the parents telling us that they no longer needed to refer to the manual to remember to perform the tasks correctly. Of the 33 parents, only 2 failed to reach criterion on at least 1 skill via self-learning and another parent required full training in follow-up to regain criterion levels.
We gave level 1 and level 2 prompts to 9 and 3 parents, respectively. These parents were prompted because they informed us that they had not been using the materials (usually saying that they had misplaced them) and/or their performance remained low or dropped back to baseline levels. Only 2 parents did not improve to criterion with prompting (they subsequently met criterion with full training).
We detected no meaningful differences in response to the self-directed approach: (a) between mothers and fathers (although having only 3 fathers limits conclusions), (b) when visits were monthly rather than weekly (for the original no training skill) (Feldman & Case, 1997), or (c) when another agency used our self-directed parent training protocols and materials for 2 parents (Feldman & Case, 1999). Although there were no significant differences between the manual plus audiotape and the manual alone conditions in Feldman and Case (1997), 3 of 4 skills that failed to meet criterion in the manual alone condition did so when an audiotape was added (see Table 3). Finally, consumer satisfaction was uniformly high across studies. Interestingly, in the study using an alternating treatment design, parents who had experienced both the manuals alone and the manuals plus audiotape (for different skills) tended to have no preference or preferred the manuals alone (Feldman & Case, 1997).
Predictors of success
We examined (a) baseline measure of reading and (b) acceptance of the self-learning materials as 2 potential predictors of successful self-directed parent training. The trainer (who recorded and corrected oral reading and comprehension errors) rated the parent's reading of the first manual presented to the parent. Reading ratings ranged from 1 (read and understood the manual very poorly) to 5 (read and understood manual very well). To measure acceptance of the manual, the trainer filled out a Likert-type scale based on the parent's response to being offered the first manual. Scores ranged from 1 (parent accepted the materials very poorly) (ie, parent was reluctant, or refused, to accept the materials) to 5 (parent accepted the materials very well) (ie, parent enthusiastically accepted the materials, and used them at the first opportunity). Across the 3 studies, we found a significant correlation between the trainer's rating of reading (mean = 1.59) and mean percentage score during training (mean = 83.1%), r = 0.42, p < .03. There were no significant correlations between reading scores and baseline or follow-up percentage correct, or trials to criterion. These results suggest that reading abilities may affect overall scores during training; perhaps using supplemental audio or video aides may allow those parents with low literacy skills to benefit from self-directed learning. Indeed, 3 parents who failed to reach criterion with the manual alone, did so, after receiving the complementary audiotape (although the research design did not allow us to conclude with certainty that the improvement was due to the addition of the audiotape) (Feldman & Case, 1997). We also found a significant correlation between the acceptance score (mean = 3.3) and the follow-up score (mean = 87.8%), r = 0.34, p = .05; no other correlations were significant. Only one parent (Katherine in Feldman & Case, 1999) initially refused to accept the manual (saying it reminded her of school work), but with some encouragement, she did agree to give it a try (and failed). The relationship between the acceptance ratings and follow-up scores suggests that (although most of the parents willingly accepted the materials) parents who are initially enthusiastic about using the materials may maintain their skills better. These correlational findings should be interpreted cautiously because of the small sample size and different skills taught.
Self-directed learning appears to be a feasible and easily disseminable way of providing, low-cost, low-tech, highly satisfying child-care training to parents with cognitive limitations. Almost all the parents rapidly met criterion on the trained skills (based on the performance of known competent parents) that were maintained over many months. The results obtained closely resemble those achieved with full training packages provided by specially trained parent educators (Feldman, 1994). Many parents improved their skills using just the visual materials, although some parents did not benefit until an audiotape was added. Several parents needed prompting to remind them to use the materials, but these prompts were quite simple and could easily be issued by anyone involved in supporting the family (eg, support worker, family member).
Future research is needed to clarify the content validity, efficacy, and clinical utility of self-directed learning for parents with ID. Although we found comparable results to full training, a multisite, randomized clinical trial that directly compares different instructional strategies (and control groups) with a large sample is still needed. The effects of self-learning of child-care skills on the parent's self-esteem and confidence as well as on the child's health and development require closer examination. Does the use of the treating diaper rash manual result in elimination of the rash in the child (we have one affirmative case in Feldman et al., 1999)? Would use of nutrition and feeding pictorial prompts alone increase rate of weight gain in low-weight infants as when they are combined with full training (Feldman et al., 1997)?
The clinical utility of the materials needs to be systematically studied. Two parents who received the materials and monitoring from another agency did just as well as our participants. Anecdotally, we have sent the manuals to hundreds of services around the world supporting parents with ID, and some of these agencies have provided unsolicited testimonials of success with the materials. It would be worthwhile to evaluate audiovisual materials (particularly videotapes) designed to teach positive parent-child interactions because many parents with ID have difficulty in this area (Feldman et al., 1993). Importantly, more field-testing is needed to evaluate the effectiveness of routine distribution of self-instructional parenting materials, prenatally or postnatally (eg, at prenatal classes, hospital discharge, newborn check-ups) by home visitors, nurses, family physicians, and pediatricians. Ultimately, mass dissemination of self-learning child-care guides may have a significant impact on the incidence of child neglect due to parenting skill deficiencies.
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*In this article, intellectual disability is synonymous with the DSM-IV definition of mental retardation (American Psychiatric Association, 1994).
Keywords:©2004Lippincott Williams & Wilkins, Inc.
parenting; parent training; parents with intellectual disabilities; self-directed learning