The Life Participation for Parents as an Outcome Measure
Condition: Parents
Study type: Observational

Summary: 
      Data was collected from Parents of children who were receiving occupational therapy services.
      Three assessment tools were used: 1. Life Participation for Parents, 2. Infant Toddler
      Sensory Profile, and 3) Child Behavior Checklist. Data was used to pursue 2 investigations.

        1. Is the Life Participation for Parents responsive to change after intervention?

        2. Are there correlations between child behavior, child sensory processing, and parental
           participation in their own lives while raising a child with special needs.
    

Detailed description: 
      Introduction and Purpose:The Life Participation for Parents is an assessment tool designed to
      measure a parent's ability to participate in daily life while raising a child with special
      needs. Previous studies have established the effectiveness of the instrument in providing
      valuable information for designing family-centered goals and intervention. Further
      investigation is needed to determine if the instrument is sensitive enough to measure change
      after intervention. This study is designed to further develop the LPP as an assessment for
      providing family-centered intervention for children with special needs and their families and
      to investigate child characteristics leading to issues in parental participation.

      Background: Parents raising children with special needs encounter many challenges in their
      daily lives. However, the initial studies using the LPP determined that these challenges
      cannot be predicted by age, gender, or diagnoses of the child, the time the child has been in
      therapy, or the age, gender, or marital status of the parent. These challenges are unique to
      each individual and therefore an instrument is needed to assess individual parental needs to
      facilitate family-centered intervention.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. Occupational therapy
      practitioners frequently interpret family-centered practice as parental involvement in
      establishing and facilitating child- related goals. However, family-centered practice goes
      beyond child-related goals to incorporate changing the quality of life for the whole family.
      Families are interdependent, and intervention with the child can have a significant impact on
      life participation for the entire family, especially the parents. Raising a child with
      special needs can influence a parent's time usage, health, and choice of activities. To
      provide best-practice family-centered intervention, therapists need to understand individual
      barriers to life participation for the child, parents, and other family members. The LPP is a
      22 item self-report questionnaire using a 5 point Likert scale. Each item also has space for
      a qualitative comment regarding the response. It is designed to be used by clinical
      practitioners such as occupational therapists, physical therapists, or speech and language
      pathologists in determining issues parents are having in participating in their daily lives.
      The issues identified by the LPP can then initiate further conversations between parent and
      clinician and assist with developing family-centered intervention goals. The LPP was
      developed using an Occupational Adaptation frame of reference providing items on both the
      efficiency and the effectiveness of a parent's ability to participate in life activities
      effected by raising a child with special needs. A preliminary principle component analysis
      revealed evidence for the two subscales. The LPP takes approximately10 minutes to complete by
      the parent and is scored easily by the therapist. Two other questionnaires (Infant Toddler
      Sensory Profile and Child Behavior Checklist) will be used to further investigate the impact
      of child behaviors on parent participation. Occupational therapists treat numerous young
      children with sensory processing abnormalities due to developmental delays. Sensory
      processing is commonly understood to mean the process by which the brain receives and makes
      use of all forms (tactile, auditory, visual etc.) of sensations to generate behavioral
      responses to the environment. Research shows that between 45% and 96% of children with Autism
      Spectrum Disorders (ASDs) and other developmental disorders present with sensory
      abnormalities, and sensory-related behaviors often drive referrals to occupational therapy.
      The majority of research in this area focuses on school-age children with ASDs. The parents
      of these children identify increased levels of stress and disruption to family life and
      participation in routines as a result. Since family members are interdependent, each member's
      ability to participate in occupations affects their own health and the health of the others.
      There is virtually no research on how sensory abnormalities and sensory-driven behavior of
      young children (0-3 years-old) affect parent participation in occupations. This is a critical
      factor to occupational therapy intervention for young children and their families.3. Summary
      of Project:The proposed study will use a pretest - intervention - posttest longitudinal
      design to assess the sensitivity of the LPP to measure change. A previous study established
      that the responses on the LPP were static over the short term (2-3 weeks) when there was no
      focused intervention between pretest and posttest (Fingerhut, 2013). At pretest, parent
      participants with children under the age of 3 will also be asked to complete the Infant
      Toddler Sensory Profile (ITSP) and Child Behavior Checklist (CBCL). This information will be
      correlated with parent participation on the LPP to investigate the effect of these child
      characteristics on parent participation.4. Study Procedures:Occupational therapist
      participants will be recruited from pediatric occupational therapy clinics and early
      intervention programs throughout Texas. Occupational Therapists (OTs) (n=30) will be
      approached by the investigators to ask 2 parents from their current clients to complete the
      LPP (n=60). If these parents identify issues that the therapist believes would be amenable to
      family-centered intervention in a 3 month time frame the parents will be enrolled into the
      longitudinal study. If not the therapist will continue to recruit until they enroll 2
      parents. Parents with children under the age of 3 will also be asked to complete the ITSP and
      CBCL at this initial stage. This information will be used to investigate the effect of
      measured child characteristics on parental participation. The parents with children under the
      age of 3 may also be enrolled into the longitudinal aspect of the study depending on the
      issues they describe on the LPP. Parents with children under the age of 3 will continue to be
      recruited until there are 50 participants.For parents recruited for the longitudinal aspect
      of the study, the therapist will use the information from the LPP to further explore the
      responses with the parents and then collaboratively establish one family-centered goal
      related to an item or items on the LPP. The therapist will then design intervention to
      address this goal in addition to the established intervention he or she was providing for the
      child and family. The study researchers will provide information on family-centered
      intervention, training, and strategies to assist the therapists in providing effective
      family-centered intervention.Intervention will be provided for three months or until the
      child's therapy is discontinued. At this point (3 months or discontinuation), the parent will
      complete the LPP again. The therapist will complete a short survey including the goal
      established, the intervention provided, and the observed outcome of the intervention.
      Therapists will also be interviewed regarding their experience using the LPP to facilitate
      family-centered intervention.

      Data Analysis/ Study Questions1. Is there a significant positive change on the overall LPP
      score for those parent participants whose intervention outcome was described as positive by
      the therapist? (Wilcoxon signed ranks test). 2. Is there a significant positive change on the
      LPP Items most closely related to the established goals for those parent participants whose
      intervention outcome was described as positive by the therapist?(Wilcoxon signed ranks
      test).3. Do levels of sensory processing as measured by the Infant Toddler Sensory Profile
      (ITSP) correlate with parent participation as measured by LPP?4. Do levels of maladaptive
      behavior, as measured by the Child Behavior Checklist (CBCL) correlate to levels of parent
      participation as measured by the LPP?5. Does the pattern of sensory presentations as measured
      by the ITSP correlate with maladaptive behaviors as measured by CBCL?Study data (demographics
      and data) from LPP completion (pretest only for those in the longitudinal study) will be
      added to data from previous studies (n= 162 + 60plus) for confirmatory principle component
      analysis (oblique rotation).
    

Intervention name(s): occupational therapy
Intervention type(s): Behavioral
Intervention description(s): Family-centered occupational therapy services
Observational model: Case-Only
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Parents of children with disabilities receiving occupational therapy services.
      
Keywords: Parents of children with disabilities