Family-centered practice in pediatric occupational therapy involves working with parents, families, and the child with special needs to facilitate participation in life through engagement in occupation (American Occupational Therapy Association [AOTA], 2008; Rosenbaum, King, Law, King, & Evans, 1998). Occupational therapy practitioners frequently interpret family-centered practice as parental involvement in establishing and facilitating child-related goals (Fingerhut, 2005; Jaffe, Humphry, & Case-Smith, 2010). However, family-centered practice goes beyond child-related goals to incorporate changing the quality of life for the whole family (Rosenbaum et al., 1998). Families are interdependent, and intervention with the child can have an important impact on life participation for the entire family, especially the parents. Raising a child with special needs can influence a parent’s time use, health, and choice of activities (Crowe, 1993; Jones & Passey, 2005; Kuhaneck, Burroughs, Wright, Lemanczyk, & Darragh, 2010; Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011). To provide best-practice family-centered intervention, practitioners need to understand individual barriers to life participation for the child, parents, and other family members (Hinojosa, Sproat, Mankhetwit, & Anderson, 2002; Roberts & Lawton, 2001; Rosenbaum et al., 1998).

Occupational therapists frequently use assessment instruments to measure a child’s ability to participate in chosen occupations (Stewart, 2010). However, to date, no valid and reliable tools exist for pediatric therapists to use in measuring parents’ ability to participate in chosen occupations (Fingerhut, 2005). The Life Participation for Parents (LPP; Fingerhut, 2005) is an assessment instrument to facilitate family-centered pediatric practice by measuring the ability of parents to participate in life occupations while raising a child with special needs.

Assessment tools have a variety of purposes, including screening to determine whether evaluation is warranted, evaluation to plan intervention, evaluation to determine eligibility or diagnostic criteria, reevaluation to measure intervention outcomes, and research to evaluate the efficacy of types of intervention (Stewart, 2010). The study described in this article is part of the ongoing development of the LPP, which was designed for two of these purposes: evaluation to plan intervention and reevaluation to measure intervention outcomes.

A previous study (Fingerhut, 2009) developed the LPP test items through a literature review and feedback from pediatric occupational therapists and parents of children with special needs. Interviews with the parents and therapists also established that the items and questions were understood, were relevant to the construct being measured, and captured a range of responses providing evidence of response processes. A Cronbach’s α of .85 indicated good internal consistency. The current study continued the process of LPP development through further investigation of reliability and construct validity. Study questions were as follows:

1. 1.Do the items on the LPP demonstrate a range of responses and good internal consistency?
2. 2.What is the factor structure of the LPP (internal structure)?
3. 3.Does the LPP correlate with the Parenting Stress Index–Short Form (PSI–SF; Abidin, 1995) as hypothesized (relations with other variables)?
4. 4.Are LPP scores predicted by child’s diagnoses, child’s age, or time since initiation of therapy (relations with other variables)?
5. 5.Is the LPP stable over the short term (test–retest reliability)?

Participants were 162 parents or caregivers whose children received occupational therapy at 15 private practice clinics in Texas and who completed the LPP. All participants read and spoke English.

Data collection occurred in three waves. First, I obtained 29 complete LPPs through in-person recruitment at a private practice clinic for the initial study (Fingerhut, 2009). In the second wave, I distributed 400 LPP questionnaire packets to 13 private practice pediatric clinics. The occupational therapists in the clinics recruited the parents and caregivers for the study. Those who agreed to participate received a packet containing a description of the study, an informed consent form, the LPP questionnaire, and two addressed stamped envelopes. The cover letter instructed the parents to complete the questionnaire and sign the consent form. Parents mailed the coded questionnaires and consent forms back to me in separate envelopes to ensure confidentiality. Finally, I collected the remaining data (n = 30) at a 15th pediatric clinic in person, allowing me to collect test–retest data; it was unreliable to control the timing of the retest administration through clinicians and a mail-back procedure.

Included in a random subset of the LPP packets was the PSI–SF along with instructions to complete and return it with the LPP. Institutional review board approval was obtained from the University of Texas Medical Branch, and clinic approval was obtained from the participating sites. The participants provided written informed consent.

The LPP questionnaire consists of 22 questions that ask parents about their ability to participate in life occupations while raising a child with special needs. The questions are answered on a 5-point Likert scale ranging from strongly agree to strongly disagree, with a lower score indicating less satisfaction with occupational participation. Questions are worded both positively and negatively; therefore, responses from positively worded questions are reverse scored. Space is available after each question for comments, because this qualitative information guides the occupational therapist to inquire further into specific areas of concern.

The LPP was designed using the occupational adaptation (OA) frame of reference (Schkade & Schultz, 1992; Schultz & Schkade, 1992). Schultz and Schkade (2003)  stated that within the OA frame of reference, a client’s quality of life is measured byLPP questions focus on parents’ perceived satisfaction with the efficiency and effectiveness of participation in life occupations. Because this instrument was developed for use in pediatric practice, effectiveness questions focus on occupations related to child care for which consultation or teaching from an occupational therapist would contribute to the overall family-centered intervention. Efficiency questions relate to occupations commonly engaged in by parents because raising children with special needs affects time, energy, and resources available for participation (Crowe, 1993; Jaffe et al., 2010; Raina et al., 2005). Improved child performance skills, parental skills for child management, and awareness of community resources can all have a positive impact on parental satisfaction with time spent (Fingerhut, 2005).

A new instrument is frequently correlated with the gold standard for that construct to provide evidence of relations with other variables. To determine the gold standard for the construct of parents’ satisfaction with participation in life occupations, I conducted an extensive literature review and determined that no instruments were currently available to measure this construct (Fingerhut, 2005). The most commonly measured construct in studies of parents raising children with special needs is stress (Butcher, Wind, & Bouma, 2008; Raina et al., 2005). I hypothesized that parents who are dissatisfied with their participation in life occupations might be experiencing stress; however, the two constructs are different and should not correlate more than moderately. To evaluate this, I correlated the LPP with the PSI–SF.

The PSI–SF is a 36-item questionnaire that measures stress within the parent–child system. Items are measured on a 5-point Likert scale and yield a total stress score as well as subscale scores. Subscales include Parent Distress, Parent–Child Dysfunctional Interaction, and Difficult Child. Because a larger score on the PSI–SF indicates more stress and a lower score on the LPP indicates more dissatisfaction with participation, correlations between the two scales should be negative.

The data were analyzed using Predictive Analytics Software (Version 18; IBM, Armonk, NY). LPP total scores across diagnostic groups, age groups, and time since initiation of therapy provided information on relations to other variables. Nonparametric Kruskal–Wallis one-way analysis of variance was used because the LPP data are ordinal (Portney & Watkins, 2000). Spearman rank order analysis was used for measuring test–retest reliability and LPP association with the PSI–SF. Total LPP scores were correlated with total PSI–SF scores and each of the three subscales. Because this was a preliminary comparison of the relations between variables, I did not correct for multiple correlation analyses (Field, 2009).

Portney and Watkins (2000)  stated that correlations <.50 are considered poor, .50–.75 moderate, and >.75 good. The possible dimensions of the items were explored using principal components analysis (PCA) of the 22 items of the LPP. A PCA with Promax rotation (oblique) was used because the items were expected to be somewhat correlated (Field, 2009). The items were examined by determining factors having an eigenvalue greater than Kaiser’s criterion of 1 and through use of a scree plot (Portney & Watkins, 2000).

A total of 162 completed LPPs were obtained, 29 from the pilot study, 103 through mail-in responses (25.75% response rate), and 30 in person (93.75% response rate). Descriptive statistics appear in Table 1. White mothers ages 30–50 completed the majority of the LPPs. All participants had resources to obtain private therapy. The diagnoses of the child, as identified by the participants, were coded in five categories: (1) autism spectrum disorder (ASD; n = 48), to include autism, Asperger syndrome, or pervasive developmental disorder; (2) cerebral palsy (CP; n = 26), to include all types of CP; (3) Down syndrome (n = 11); (4) motor (n = 39), to include sensory integrative disorder (SID), developmental coordination disorder (DCD), mild motor impairment, or motor dyspraxia; and (5) other (n = 38), which included a wide variety of syndromes, speech disorders, feeding issues, mental retardation, attention deficit disorder, orthopedic conditions, and muscular dystrophy. Many caregivers checked multiple diagnoses for their child. Motor was coded only when SID, DCD, mild motor impairment, or motor dyspraxia were indicated without a diagnosis of CP, ASD, Down syndrome, or other primary condition such as a syndrome. Similarly, other was coded only when CP, ASD, or Down syndrome was not present. Many children in all categories were additionally diagnosed with attention deficit disorder; attention deficit disorder was coded as other if it was the only diagnosis given.

PCA was conducted on the 22 items with oblique rotation (Promax). No two items correlated higher than .67, indicating that there was no redundancy of items. Kaiser–Meyer–Olkin and Bartlett’s test of sphericity indicated sampling adequacy for PCA (Field, 2009). An initial analysis obtained five factors with eigenvalues greater than Kaiser’s criterion of 1; those factors explained 59.99% of the variance. The focus of the factors was described through content of the items.

The first factor (7 items, 35% of variance) related to satisfaction with time spent on personal occupations (e.g., doing chores; socializing with friends, family, spouse; attending community activities). The second factor (4 items, 8% of variance) related to issues with finances, health, and the ability to pursue employment or education. The third factor (5 items, 6% of variance) related to satisfaction with time and effectiveness of performance of child care–related occupations (managing physical, social, and emotional needs of child) and also effectiveness of time spent with friends and family with the child present. The fourth factor (3 items, 6% of variance) also related to satisfaction with time spent on child care–related occupations (time spent obtaining services, doing activities a teacher or therapist might do, physical care). The fifth factor (3 items, 5% of variance) related to satisfaction with effectiveness in providing developmental opportunities for the child (obtaining services, arranging social activities, doing things a teacher or therapist might do).

Two items showed mixed loading; sleep loaded significantly on Factors 1 and 2, and managing a child’s emotional needs loaded on Factors 3 and 5. Examination of the scree plot provided evidence for retention of a 5-, 4-, or 2-factor structure (Field, 2009). The data were further analyzed to determine the factor structure that best described the data in a way that could be clinically useful. Were there possible subscales that could assist clinicians in designing intervention or measuring outcomes?

The LPP was developed using an OA model with items to describe satisfaction with efficiency of participation (time spent) and effectiveness of participation (goal achievement). Using this conceptual model, it was hypothesized that these two aspects of the overall construct of life participation for parents might provide useful subscales, thus providing impetus for the two-factor model. The PCA with oblique rotation (Promax) was repeated, specifying two factors that explained 43.81% of the variance. All the items loaded as expected, with items loading on Factor 1 (16 items, 35% of variance) relating to satisfaction with efficiency in participation and items loading on Factor 2 (6 items, 9% of variance) relating to satisfaction with effectiveness of participation. LPP items and the PCA loadings for the two-factor model appear in Table 2.

The LPP total score correlated moderately with the PSI–SF total score (r = −.51) and the PSI–SF Difficult Child subscale (r = −.54). Correlations between the LPP and PSI–SF Parent Distress (r = −.46) and Parent–Child Dysfunctional Interaction subscales (r = −.36) were poor. Correlations appear in Table 3.

Total LPP scores of the parent participants were compared on the variables of child’s diagnoses, child’s age, and time child had been receiving therapy. No differences were found between groups by child’s age. A significant difference was found between groups by child’s diagnoses, H(4) = 13.49, p < .01, and time since beginning therapy, H(3) = 19.07, p < .01. Interactions between diagnosis and time in therapy indicated that the differences were restricted to children with motor diagnoses, H(3) = 12.89, p < .01, or other diagnoses, H(3) = 9.25, p < .05. Time in therapy did not predict LPP scores for the parents of children with diagnoses of ASD, CP, or Down syndrome.

All 22 items obtained the full range of responses (Likert scale 1–5) with the exception of Item 2, “I am able to manage my child’s physical and personal hygiene needs,” for which no parent responded with strongly disagree. Cronbach’s α was calculated for the total score and both subscale scores from the 2-factor solution of the factor analysis (total α = .90, Efficiency α = .90, Effectiveness α = .70), suggesting internal consistency within the total scale and within the subscales (Portney & Watkins, 2000).

Test–retest reliability for total LPP scores was good (r = .89). The two subscales identified by the factor analysis were also analyzed for test–retest reliability; the r for the Efficiency subscale was .78, and for the Effectiveness subscale, .74. All of these correlations were significant (p < .01).

Initial studies using the LPP contributed evidence of construct validity for test content and response processes (Fingerhut, 2005, 2009). This study provides further evidence of construct validity by examining internal structure and relations to other variables. Additionally, this study provides evidence of test–retest reliability.

The internal structure of the instrument was explored using PCA. Although the data could be explained in either a 5-factor or a 2-factor solution, the 2-factor solution appeared to be a more clinically relevant representation of the data for several reasons. The 2-factor solution had clear delineation between the factors, with each item loading strongly (>.4) on only one factor (Field, 2009). The item relating to effectively doing errands showed some mixed loading, with .418 on Factor 2 and .333 on Factor 1. Some qualitative comments indicated that errands could be accomplished effectively but that it took more time, which could explain the mixed loading. The 5-factor solution had 2 items with mixed loading. The 5 factors did not appear to represent separate subscales that made valuable clinical distinctions. The small number of items in Factors 4 and 5 would provide little more information than would analyzing each item individually. The subscales of the 2-factor solution combined larger numbers of items (16 for Efficiency and 6 for Effectiveness). Additionally, the constructs represented by the factors in the 2-factor solution (satisfaction with efficiency and satisfaction with effectiveness) were consistent with the OA frame of reference that was used to develop the instrument (Schkade & Schultz, 1992; Schultz & Schkade, 1992).

The 2-factor solution describing satisfaction with efficiency and satisfaction with effectiveness of parental occupational participation appears to be the best fit for the data. However, further study is necessary to determine whether subscale scores for the LPP provide more relevant information than the total score alone. The rationale for using subscale scores depends on the expectation that intervention planning and intervention outcomes could specifically target each area. If parents reported low scores on satisfaction with effectiveness (Items 2, 4, 6, 8, 10, and 12), intervention could be focused on teaching techniques for accomplishing the task, providing equipment and resources, and modifying home programs. If a parent recorded low scores on satisfaction with efficiency, the therapist might focus intervention on providing information and resources for respite services or support groups or reconsider the expectations of home programming. Separate subscales for measuring satisfaction with efficiency and effectiveness might provide more focused direction for intervention.

The LPP correlated with the PSI–SF, as predicted. Moderate correlations indicate that as parental satisfaction with participation went up, stress scores went down, but the instruments are not measuring the same construct. Although occupational therapists in pediatric practice are concerned about the stress felt by parents, the focus of occupational therapy intervention is at the level of activity and participation (AOTA, 2008). Occupational therapists need an efficient tool to evaluate participation issues that can be ameliorated by intervention and subsequently a way to measure the outcome of that intervention. The LPP provides this information through a self-report questionnaire that can be completed by the parent in <10 min with both quantitative and qualitative information. The occupational therapist can use this information to focus further discussion with the parents to create family-centered intervention.

Additionally, LPP scores were related to the variables of child diagnoses, age of child, and time since beginning therapy. I wanted to know whether these variables could predict which parents were experiencing the most participation issues to inform the therapist when to use the LPP. Analysis showed that scores on the LPP were not related to age of the child. Significant differences existed between groups on the basis of the child’s diagnoses and time receiving therapy, with parents of children receiving therapy for less than 1 yr having higher satisfaction with participation. On further analysis, this finding was true only for parents of children with diagnoses in the motor or other categories. Level of child disability varies widely in both of these categories, which include children with mild handwriting or sensory issues. This variability could account for parents of children with mild disabilities who were receiving short-term therapy scoring higher (more satisfaction) on the LPP.

The literature identifies increased levels of stress for parents raising children with special needs that differ by child’s diagnoses (Cadman, Rosenbaum, Boyle, & Offord, 1991; Kasari & Sigman, 1997; Sloper & Turner, 1993). However, studies measuring family functioning, a construct hypothesized to be related to, but not the same as, parental participation, have suggested that disordered family functioning cannot be predicted by a child’s diagnoses (Cadman et al., 1991; Magill-Evans, Darrah, Pain, Adkins, & Kratochvil, 2001).

Similarly, the results of this study indicate that issues with parental participation are individual and cannot be predicted by child factors. Occupational therapy practitioners will be able to understand parental participation issues only by asking parents individually. Currently, this type of information is usually obtained through informal parent interviews or short postintervention discussions. However, these methods are time intensive, do not provide scores to measure change, and are often conducted in environments such as waiting rooms that are distracting and lack privacy (Fingerhut, 2005). The LPP was developed to obtain both quantitative and qualitative information in a time-efficient manner.

Evidence of internal consistency of the 22 LPP items (α = .85) was previously established and replicated with the current data (α = .90). Respondents used all five choices on the Likert scale for each question except for Item 2, also a replication of previous results (Fingerhut, 2009). Additionally, the two proposed subscales indicating satisfaction with Efficiency (α = .90) and with Effectiveness (α = .70) were internally consistent (Portney & Watkins, 2000). The LPP is designed to be given and interpreted as a total score with possible subscores for Efficiency and Effectiveness. Change scores are not calculated on individual items. The LPP demonstrated good test–retest reliability (r = .89). Test–retest reliability demonstrates that the instrument is stable in the short term, necessary to interpret a change of scores at posttest as true change rather than error of measurement.

The small sample size for the LPP (n = 162) is a limitation to the generalizability of the study results. In addition, the sample was fairly homogeneous, consisting of White mothers ages 30–50 living in Texas and with resources to pay for private therapy services. Results cannot be generalized beyond this group.

The LPP continues to be developed; the psychometric property of ability to measure change is not yet established. Evidence of sensitivity to change is necessary to establish validity for using the LPP as a reevaluation instrument. Further studies are needed to examine instrument sensitivity to change, the clinical utility of subscale scores, and the types of intervention that have the most positive effect on family-centered outcomes. These studies will further establish construct validity through more evidence of internal structures and relations to other variables (Brown, 2010). The preliminary data on how parental participation is affected by raising a child with special needs is intriguing. More investigation of qualitative responses is needed to better establish when and how the LPP can best be used to enhance family-centered practice.

This study indicates that the LPP can be a useful assessment tool in pediatric occupational therapy practice:

• Families are interdependent, and intervention with the child can have an important impact on life participation for the entire family, especially the parents. Intervention needs to be designed to meet the needs of the family as well as the child.

• The LPP provides an efficient and effective tool for assessment of family issues and provides a vehicle for further dialogue on these issues.

• The LPP has the potential to provide valid and reliable measurement of family-centered outcomes.

Studies have demonstrated that the LPP is a reliable and valid instrument for evaluating parental satisfaction with life participation while raising a child with special needs. The LPP measures the intended construct, is easily understood and used by parents, captures a variety of responses, covers the breadth of the construct domain, and provides information that can assist occupational therapists in designing family-centered intervention. Evidence of construct validity is demonstrated through relation to other variables such as PSI–SF scores and client groups by child diagnoses, age, and time in therapy. A 2-factor structure for the instrument emerged that is consistent with OA theory; these two subscales may prove valuable in interpreting assessment results. Good test–retest reliability provides confidence in the stability of the responses.

Therapists need reliable and valid tools that are easily used to provide best practice intervention. The LPP measures satisfaction with the efficiency and effectiveness of the parent’s life participation, allowing practitioners to focus interventions to meet the needs of the parent as well as the child.

I thank the participants for their time and information and the therapists who assisted in collecting the data. I also thank Tim Reistetter, Tara Patterson, Suzanne Peloquin, and Amit Sethi of the University of Texas Medical Branch for their editorial comments in the preparation of this article.