Validity and Reliability of the Life Transition Scale in Parents of Disabled Children Across the Life Transition Process

1. Need for Study

Raising a child with a disability has a tremendous influence on the lives of all family members. Among the 2.49 million people with disabilities in Korea, 89,646 (3.6%) are children under 19 years of age [1]. Intellectual disability affects approximately half (49.5%) of disabled individuals, followed by autism spectrum disorder (17.5%), brain lesions (13.7%), and visual/auditory/speech disabilities (12.7%) [1].

Common response behaviors of parents whose child is born with a disability or who recognize their child's disability include being shocked and emotionally disturbed [2]. In some cultures and societies, the pain of the parents of disabled children is often exacerbated by negative societal perceptions and religious convictions that disability is a type of punishment [3,4]. Although taking care of a child is a natural responsibility of a parent, raising a long-term dependent child with a disability involves heavy burdens, such as confronting the child's health problems (related or unrelated to the disability) in the long-term parenting process [5]. Parents may not feel the joy of life while raising disabled children who are susceptible to various health problems, such as pain and sleep disorders [6].

Parental distress may vary depending on the type of disability or the behavioral problems of the child [7-12]. Mothers commonly experience negative feelings toward children with intellectual disabilities who lack social skills compared to normal children. Furthermore, mothers are at risk of stress and depression due to their child's behavioral problems [7,8]. Children with cerebral palsy, who are classified as having brain lesions, struggle with limitations in their activities of daily living, sensory problems, difficulties of communication, and low intelligence. It was reported that mothers of children with cerebral palsy were commonly blamed for their children's disability. The mothers felt ashamed and stigmatized or experienced overt discrimination and rejection. Thus, they purposely avoided social gatherings, preferring to remain at home [9]. It was also reported that children with learning disabilities were emotionally unstable and subject to low self-esteem [10,11]. A recent study also demonstrated that depression in parents and emotional instability in disabled children may affect each other in a bidirectional relationship [12]; thus, disabled children may be at an elevated risk of abuse or neglect [13,14].

Parental reactions or coping patterns may vary depending on the growth of disabled children across the developmental process [15]. The process of accepting and adapting to children's disabilities also varies [16,17]. Lee et al. [18,19] divided the life of parents of children with autism into five phases of transition: denying, wandering, devoting, mind controlling, and finally accepting. Lee, Hong, and Ju [20] modified the process of transition into four phases through confirmatory factor analysis: denying, wandering, despairing, and accepting, and developed a tool for measuring the process of life transition, the Life Transition Scale (LTS). The characteristics of the denying phase are ignorance and disbelief. In this phase, parents desire to hide their child's disability because they are self-conscious and intimidated. The wandering phase is the most stressful, marked by feelings of unfairness, fear, anxiety, sadness, shock, disappointment, depression, and guilt. The despairing phase involves being worn out and feeling helpless because there are no improvements in the symptoms of their child's disability. Eventually, in the accepting phase, parents reorganize their lives to care for their children with a disability, and this period is marked by feelings of acceptance, gratitude, and mutual dependence. Once they reach the accepting phase, parents can easily move beyond the emotions they initially felt, even if a new crisis emerges and reverts them to the wandering or the despairing phase, and accept that they have done their best even if the disability does not improve despite all their efforts. Therefore, the accepting phase acts as a mediating factor between the behavior of the child and the mental health of the parent, and it is an important factor for parents in coping with the behaviors of children with disabilities [21].

Parents of autistic children who face substantial burdens of care often follow an adjustment process throughout the lifecourse of their children's illness trajectory. Likewise, the parents of children with other types of disabilities, such as cerebral palsy, also undergo substantially distressful circumstances caused by their children's disability. Thus, hypothetically, parents of children with other types of disabilities are likely to follow the same adjustment process throughout the child's illness trajectory as do the parents of autistic children. Although specific aspects of the process of parents accepting a child's disability vary by the type of disability [16,17], it is necessary to acquire information about how parents cope with the impact of their child's disability and how they perceive their circumstances. The phase of transition needs to be identified to help children with disabilities and their families live a healthy life, by facilitating the parents' progress from the denying, wandering, and despair phases to the accepting phase. It is also necessary to measure the transition process of individual parents raising a child with a disability and to identify differences and factors that influence each phase of the transition process depending on the characteristics of the child and the parent.

Accordingly, the feasibility of the LTS developed by Lee et al. [20] was tested among parents of children with various disabilities, other than autistic spectrum disorder, by examining whether the transition processes fit the adjustment of parents of children with other disabilities. Specifically, this study was aimed to examine the validity and reliability of the LTS in parents of children with a wide spectrum of disabilities and to identify differences in the life transition process according to parents' socio-demographic characteristics. It is expected that this process will provide a basis for determining specialized nursing interventions at each phase for the parents of children with disabilities.

1. Study Design

This was a validation study to examine whether the LTS developed by Lee et al. [20] could be applied to parents of children with different types of disabilities and to test the validity and reliability of the scale.

2. Data Collection and Procedures

This study was approved by the Institutional Review Board of Wonkwang Health Science University (WKIRB-201603-SB-011). Data were collected from May 20 to August 31, 2016 through self-report questionnaires. Participants were recruited from daycare centers for children with disabilities, lifelong education centers, and local children's centers for the disabled. Before data collection, a questionnaire with a letter explaining the purpose of this study was sent to the head of the institutions. After obtaining approval from the institution, questionnaire booklets with a stamped envelope for their return were distributed to the parents of children with disabilities. Each envelope contained a letter guaranteeing the anonymity and confidentiality of the data, an informed consent form, instructions, and a token of appreciation. The sample size of 183 was estimated with ⍺= .05, a medium effect size of .30, and a power of .90 using G*Power version 3.1.7. To account for the potential for a high drop-out rate [20], 320 questionnaires were mailed out, and of the 282 returned questionnaires (response rate=88.1%), 22 were incomplete. Thus, 260 responses were used for the data analysis.

3. Measurements

4. Data Analysis

Descriptive statistics were calculated to represent the general characteristics of the sample. Confirmatory factor analysis using a structural equation model was performed to test the theoretical fit of the subscales of the LTS. In this study, the maximum likelihood method was used to estimate the parameters. The goodness-of-fit test to evaluate whether a measurement model is suitable for a certain dataset uses several fit indices. In this study, the x² test (x²), degrees of freedom (df), goodness-of-fit index (GFI), root mean square error of approximation (RMSEA), non-normed fit index (NNFI), comparative fit index (CFI), parsimonious normed fit index (PNFI), and Q (normed x²; x²/df) were used. The internal consistency of the LTS and its subscales was assessed by Cronbach's ⍺. Differences in the life transition process according to the socio-demographic characteristics of the children and parents were analyzed using the t-test and one-way analysis of variance with the Scheffépost hoc test for group comparisons. The collected data were analyzed using SPSS for Windows version 22.0 and AMOS version 22.0 (IBM Corp., Armonk, NY, USA) with the level of significance set at a p-value of .050.

1. Participants' Socio-demographic Characteristics

The participants were 114 fathers (43.8%) and 146 mothers (56.2%). The mean age of the participants was 41.9 years (SD=7.1). By age category, 106 (40.8%) were 39 years old or younger, 120 (46.1%) were 40~49 years old, and 34 (13.1%) were 50 years or older. The distribution of educational levels was fairly even, as 132 (50.8%) participants had a high school education or lower, and 128 (49.2%) had a college education or higher. More than half reported religious affiliations (56.2%) and had a job (53.1%). The household income levels among the participants were as follows: 101 (38.8%) earned 3 million Korean won per month or more, 86 (33.1%) earned between 2 and 2.99 million Korean won per month, and 73 (28.1%) earned less than 2 million Korean won per month (Table 1).

Table 1.

Socio-demographic Characteristics of Children and Parents (N=260)

The mean age of the children with a disability was 11.0 years (SD=6.5). The children consisted of 80 preschoolers (≤6 years old) (30.8%), 102 elementary school students (7~12 years old) (39.2%), 39 adolescents (13~18 years old) (15.0%), and 39 adults (≥19 years old) (15.0%). There were 159 male (61.2%) and 101 female (38.8%) children. With respect to birth order, 128 (49.2%) children were first-born, followed by 106 (40.8%) who were second-born, and 26 (10.0%) who were third- or later-born. Approximately half (48.8%) of the children had intellectual disabilities, followed by 86 (33.1%) with brain damage, and 47 (18.1%) with visual/auditory or other disabilities. The disability levels of the children were as follows: 159 (61.1%) in the first degree, 47 (18.1%) in the second degree, and 54 (20.8%) in the third degree or over (Table 1).

2. Validity and Reliability Analysis

Exploratory factor analysis was performed to test whether the 24 items of the LTS developed for parents of autistic children by Lee et al. [20] could be applied to parents of children with different types of disabilities, and confirmatory factor analysis was performed to test the theoretical fit of the subscales of the LTS. Cronbach's ⍺ was analyzed to assess the internal consistency of LTS and its subscales.

1) Exploratory factor analysis

The sample size was confirmed to be appropriate for the factor analysis because the values of the Keiser-Meyer-Olkin test and Bartlett's test for sphericity of the 24 questions were .94 and x²=3,720.57 (p<.001), respectively. Four factors were extracted by principal component analysis based on eigenvalues greater than 1.0 and by a scree plot and were classified as wandering (8 items), accepting (6 items), denying (6 items), and despairing (4 items). The number of items comprising each factor was 4 to 8, and the factor loading of each item was distributed between .30 and .80. Although the factor loading of the 'I want to give up my child' item was .57 in the denying phase and .30 in the wandering phase, this item was included in the wandering phase because it was classified accordingly at the time of tool development. Factor 1, the denying phase, explained 43.96% of the variance; factor 2, the wandering phase, explained 9.55%; factor 3, the accepting phase, explained 6.02%; and factor 4, the despairing phase, explained 4.52%. The cumulative proportion of variance explained was 64.05% (Table 2).

Table 2.

Factor Analysis of Items (N=260)

2) Confirmatory factor analysis

As a result of evaluating the model's goodness of fit for the four structures (the 24-item instrument), the absolute fit index was x²=640.0 (p<.001), GFI was .81, RMSEA was .07, NNFI was .89, CFI was .89, the PNFI was .74, and Q (x²/df) was 2.60. Thus, the measured model was found to be appropriate (Table 3, Figure 1).

Table 3.

Fitness Statistics of the Current and Original Models (N=260)

Figure 1.

The path diagram of the current measured model.

3. Differences in the Life Transition Process According to Socio-demographic Characteristics

Statistically significant differences were found among the scores for the denying phase depending on household income, but no differences were found among the groups. That is, participants with the lowest category of household income (less than 2 million Korean won per month) had a higher score for the denying phase than those with an income of 3 million Korean won per month or higher (F=5.76, p=.004).

Statistically significant differences were found in the scores of the wandering phase depending on the parent's gender (t=3.44, p=.001), educational level (t=2.89, p=.038), employment status (t=3.39, p=.001), and household income (F=12.42, p<.001). Mothers had higher scores than fathers (t=3.44, p=.001). Respondents without a job, with a lower educational level, and in the lowest category of household income (less than 2 million Korean won) had a higher score in the wandering phase than the other respondents.

A statistically significant difference was found in the scores of the despairing phase depending on household income (F= 3.46 p=.033). Respondents with a household income in the lowest category (less than 2 million Korean won) showed higher scores of the despairing phase than those with a household income in the highest category (3 million Korean won per month or higher).

Statistically significant differences were found in the accepting phase depending on the child's age (F=9.06 p<.001) and type of disability (F=5.21 p=.006); the parent's age (F= 5.70, p=.004), educational level (t=2.13, p=.033), and religion (t=3.60, p<.001); and household income (F=6.39, p=.002). Parents who had a child who was 12 years of age or younger or with brain damage scored higher in this phase than the other respondents. Respondents who were 39 years of age or younger and who had a religious affiliation, higher educational level, and a household income in the highest category scored higher for the accepting phase than the other respondents (Table 4).

Table 4.

Differences in the Life Transition Process According to the Socio-demographic Characteristics of Children and Parents (N=260)