Sibling Participation in Occupational Therapy for Children with Physical Disabilities: A Case Report

Abstract

This case report describes the implementation of participation-based occupational therapy for children with physical disabilities and their siblings in two families. Case 1 was a girl with myelomeningocele spina bifida and her brother, and case 2 was a boy with cerebral palsy and his sister. Goals targeted joint participation in play. The Sibling Participation in Occupational Therapy (SPOT) approach adapted the Collaborative Process for Action Plans to Achieve Children’s Participation Goals in order to assess goal-related factors and develop actionable steps to achieve the goal. Corresponding interventions addressing performance skills differed across cases and related to all children’s ages, interests, and functional abilities. The Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS) measured sibling dyad’s achievement of their family’s goal, and participants completed an experiential questionnaire. Parent COPM ratings demonstrated a meaningful increase in performance and satisfaction, and the therapist and parent ratings of the GAS met or exceeded expected achievement. Parents and sibling dyads reported positive experiences in SPOT. The outcomes support the use of a participation-based approach inclusive of siblings that is consistent with family-centered practice to facilitate participation in meaningful joint sibling activities with families who have a child with a physical disability.

1. Introduction

Play and social participation are early childhood activities influenced by environmental and personal contextual factors. The family unit provides practical physical and emotional support, and assistance in early childhood to promote the child’s engagement in play and social participation [1]. Early childhood opportunities for play, social, and emotional skill development occur within the family context as children relate to their caregivers and siblings [2,3] while engaging in everyday childhood activities. Siblings have a unique role in the family, serving as social partners, playmates, role models, and opponents for one another [2]. According to family systems theory, children are inseparably bonded in the larger family system and understanding a child’s roles is impossible outside of the family context [4]. The family’s personal factors (family culture and family dynamics as well as each child’s capacities and characteristics) influence sibling relationships and roles [3,5,6]. Attention to the interplay of familial and environmental factors affecting sibling interactions, including a child’s ability or disability [6], is necessary to establish individualized occupational therapy services that support the entire family when one sibling has a disability [6,7].

Research into the experiences of siblings who have typical development and who live with a brother or sister with a disability yield varied results. Variability in findings is largely explained by the many factors that contribute to family wellbeing when one child presents with a disability, and one does not. Heightened parent stress levels or caregiver burden [6,8,9], low socio-economic status [10,11,12], and lower parent psychological well-being [9,13] were related to increased risk of poor adjustment and lower quality of life of the sibling with typical development. When the children were close in age, the sibling with typical development experienced an increased risk of emotional problems [14] and depression [15], and in families where the child with a disability was much older, the sibling dyad had increased frequency of challenging sibling interactions [16]. In mixed gender dyads, the sibling with typical development experienced more negative effects of having a brother or sister with a disability, compared to same gender dyads [17], and sisters had greater odds of depression compared to brothers [15,18]. The presentation of the disability also considerably influences the sibling with typical development. When a communication impairment existed, creating intimate connections between siblings was more difficult [19] and greater problem-solving was needed to develop sibling relationships [20,21]. Siblings had more difficulty adjusting and coping with life circumstances when their brother or sister displayed aggressive or behavioral outbursts [5,13,17,22,23,24] and often these outbursts contributed to increased family stress [25].

Although most sibling studies focus on children who are diagnosed with autism or an intellectual disability [18], there are a few studies that explore how physical disability influences the sibling with typical development. When the child had cerebral palsy, their siblings reported lower psychosocial health than the siblings of children without health conditions or with other chronic conditions (e.g., celiac disease or diabetes) [26]. Siblings’ enjoyment in doing things with their brother or sister with a physical disability and overcoming activity barriers was more challenging when the impairment affected multiple developmental areas and was more severe [21]. Higher severity of the disability correlated with experiences of poor sibling relationships and high levels of behavioral [18,27] and emotional difficulties in the sibling with typical development [15,18,27], demonstrating a need for support to facilitate sibling interactions during daily life. Several researchers have concluded that no single factor can predict sibling adjustment [6,8,11,12,18]. Having a holistic perspective of siblings adjusting to their experience of living with a brother or sister with a disability is critical in supporting families who have a child with a disability [11,15,28].

The availability of social support has been positively associated with the well-being of the sibling with typical development and their coping abilities, as well as a positive sibling relationship [13,28,29]. Support services for siblings with typical development have been predominantly offered in a group format for siblings who are 6 to 12 years old, and for families who have a child with cancer, autism spectrum disorder, or Down syndrome, rather than physical disability [8,22,30,31,32]. A few studies that have described interventions supporting sibling interactions in the family context have been limited to siblings acting as peer models for their brother or sister with a disability [33] and the effects of behavioral therapy to decrease aggression between a child with autism and their sibling [34,35]. Providers aiming to support the sibling and the child with a physical disability have little guidance on implementing interventions inclusive of siblings. Studies should provide clinical guidance in designing sibling interventions that are developmentally appropriate [18], family-centered, and in the natural environment. Families desire goals that include sibling interactions and education to support sibling play when one child has a disability [36]. Family-centered occupational therapy optimizing parent involvement and decision-making and targeting intentional occupational outcomes of sibling play participation would meet family priorities and support sibling interactions during the occupation of play.

Delivering occupational therapy that is family-centered, collaborative, and values participation outcomes aligns with participation-based therapy approaches. Palisano et al. [37] detail a five-phase participation-based therapy model to guide therapists in the implementation of participation-based therapy. These five phases are: (1) developing a collaborative relationship between the family, child, and the therapist based upon reciprocal respect, (2) determining a mutually agreed upon participation goal, (3) assessing child, family and environmental factors contributing to the goal by using the Collaborative Process for Action Plans to Achieve Children’s Participation Goals [38], (4) developing and implementing a treatment plan or actionable steps to address the goal, and (5) evaluating the outcome using self-report measures for the family and child to reflect upon the achievement of the goal. The model is flexible and adaptable to individual contexts and needs [37,39] including a guide for occupational therapists in addressing social participation for sibling dyads in families where one child has a physical disability.

The purpose of this case report was to describe the development and implementation of participation-based occupational therapy through the novel application of the five-phased participation model including the Collaborative Process for Action Plans to Achieve Children’s Participation Goals [38], by involving the child with a physical disability, their sibling with typical development, and parents to support social participation of a young child with a physical disability and their brother or sister during play. Case comparison of factors influencing siblings’ social participation in play, provide a detailed interpretation of a family-centered sibling intervention for families who have a child with a physical disability and addresses a gap in the sibling literature that currently has focused on autism and intellectual disability. The cases may help guide practitioners to include siblings in a participation-based model with outcomes targeting social participation of both siblings during play activities in the natural home environment.

2. Materials and Methods

This study applied a case report design to provide detailed descriptions of the clinical decision-making process used in working with two families who have a child with a physical disability and a child with typical development [40]. This case report was prepared following the CARE Guidelines [41]. This design permitted the illustrative description of family, child, sibling, and environmental factors throughout the collaborative occupational therapy process. Drexel University’s Institutional Review Board approved the study protocol. Pseudonyms were used in the write-up of the case report.

2.1. Participants

Participants were recruited through convenience sampling and met the eligibility criteria of a child between 2 and 12 years old with a physical disability and a sibling between 4 and 8 years old with an age gap of no more than 4 years between the siblings. Siblings who have a larger age difference are likely to have fewer interests in play activities and spend less time together [25], which is contrary to the aim of this study. The participants were two children with developmental physical disabilities, their siblings, and their families. The study took place in each family’s home. At the initial participant meeting, parental consent was obtained, and in case two, the children were at sufficient age to assent for participation.

2.2. Measures

The Functional Independence Measure for Children (WeeFIM II) [42] was used to describe the functional level of the children with physical disabilities across child-specific activities. It is an ordinal rating scale from total assist (1) to independent (7) in six domains: self-care, sphincter control, mobility, locomotion, communication, and social cognition. Summation of the ratings yields a functional performance score ranging from 18 to 126, indicating full assistance to independence in all areas, respectively. The WeeFIM II is for children ages 6 months to 7 years old but can be applied to older children who have disabilities [43]. It has high internal consistency (ICC = 0.93) [44] and strong construct validity in measuring children’s functional performance when compared with the Pediatric Evaluation of Disability Inventory [43]. At the start of the study, the WeeFIM II was completed by interviewing the parent to gather information about the independence level of the child with a disability

The parent also completed a demographic questionnaire, developed by the researchers, to report information about the family background, family structure, and participants to add to the richness of case descriptions.

The Canadian Occupational Performance Measure (COPM) is a client-centered, criterion measure that uses a semi-structured interview to identify goals in areas of occupational performance [45]. The COPM was used as an outcome measure of the sibling dyad’s social participation in a joint play activity. The occupational performance level and satisfaction with their performance on the goal is rated on a scale from 1 (completes with great difficulty or not satisfied) to 10 (completes with no difficulties or completely satisfied) [45]. The COPM has been completed by parents when children are under 8 years old; the total performance and satisfaction scores have good internal consistency (α = 0.86 and 0.88, respectively) and construct validity has been established [46]. Verkerk et al. [47] found that children who are 8 years old or slightly younger are developmentally appropriate to self-rate their performance and satisfaction on the COPM, and each child’s capacity to self-rate the COPM was considered in this study.

Goal Attainment Scaling (GAS) is a method to develop and evaluate progress in individualized goals [48] and was used as a second joint outcome measure of the siblings’ social participation in play. The GAS measures attainment of a goal using a 5-level interval rating scale ranging from −2 (representing baseline performance) to +2 (representing well above the expected level of achievement), with 0 representing the expected level of achievement [49]. GAS can be used with children of various ages, and disabilities, and in various settings. GAS is responsive to changes in performance and has good content validity [50]; in children with cerebral palsy, the GAS had good to excellent inter-rater reliability (_K, 0.64–0.83) [51]. The OT collaborated with each parent to define GAS levels for the sibling dyad and the levels were reviewed by the second author to confirm the scale met GAS criteria [48]. Prior to intervention and post intervention the OT and parent rated the GAS.

An experience questionnaire, developed for this study, consisted of open-ended questions and a rating scale to assess the parent, child with a disability, and sibling’s views of the therapy approach. The parent survey and a child-friendly survey, adapted with pictures illustrating levels of enjoyment, assessed the participants’ overall experiences in participation-based therapy approach post intervention

2.3. Procedures

The first author, an occupational therapist (OT) with over 15 years of experience serving children and families, provided the intervention. Prior to the start of the study, the first two authors independently bracketed and discussed their assumptions and beliefs related to family-centered care, siblings of children with disabilities, and play. Throughout the implementation, the OT journaled to describe the clinical reasoning process and self-reflect on experiences collaborating with family members during the therapeutic process.

This study applied the phases of participation-based therapy [37,38] for families and children with physical disabilities and their siblings in the home environment. Siblings were included in all phases of the participation model as seen in Figure 1.

An adapted version of the Collaborative Process for Action Plans to Achieve Children’s Participation Goals [38] was used to provide a systematic method for the OT and family to assess the attributes related to the participation goal. The tool’s content validity and utility have been established via consensus agreement and pilot testing [52]. The tool was adapted to integrate siblings: guiding questions addressed sibling, child, family, and environmental attributes, and responses were documented in the sibling participation in occupational therapy (SPOT) guide (See Supplementary File S1 for adapted sibling section). The steps to achieve the goal and responsible party were then detailed in an action plan. The SPOT action plan, identifying what needs to happen to achieve the goal, focused on the sibling, the sibling dyad, the parents, and the child with a disability. The OT partnered with the family to complete the SPOT guide and action plan prior to intervention.

SPOT Intervention

The SPOT intervention phase was individualized and intended to provide one to two at home sessions per week for a maximum of 12 sessions. The SPOT session frequency was collaboratively determined by the parents, children, and OT based upon goal assessment and the family’s preferences. Siblings of the child with a physical disability were included in all therapy sessions. The OT documented interventions on the intervention log and recorded clinical assessment on the log notes. The intervention log, developed by the primary author, listed intervention strategies, the recipient of the intervention, the OT’s notes, and the OT’s assessment of each participant’s engagement level. Engagement level, defined as active participant involvement, was rated from 1 (not at all) to 4 (great). The intervention log (See Supplementary Table S1) provided documentation of SPOT services used with each child, sibling, and family. Interventions focused on activity and environmental adaptations, supporting application of abilities, addressing child/sibling-specific skills within the context of social play, and progress monitoring by addressing questions, discussing social play activity participation, and/or parent concerns. Tallying the frequency of intervention strategies used for each family enabled a descriptive analysis of interventions.

After six SPOT sessions, the families rated the COPM, and the parent and OT independently rated the GAS. Discussion of progress and continued actions to meet the goal occurred to facilitate family decision-making on continuation of therapy. At the end of the SPOT intervention phase, families rated the COPM, completed the experience questionnaire, and the parent and OT rated the GAS to evaluate outcomes at discharge.

2.4. Data Analysis

Data analysis was a narrative description and comparison of the comprehensive details of the SPOT guide, action plan, and descriptive data from the intervention logs and journal entries for the two cases. The first two authors evaluated the gathered information and collaborated in discussing the sibling dyad’s social participation in play by considering factors, such as age, disability characteristics, and family characteristics, described in the available literature. Outcomes, using COPM ratings, GAS scores, and participant experience questionnaires, were appraised with consideration of child, sibling, and family characteristics, interventions, and study limitations of the case report. Attention was given to ensure that the narrative description and comparisons were grounded by the data and that information across data sources was consistent.

3. Results

Two families were recruited to participate in the study.

Table 1. Family Demographic Information.

Child	Maura	Kye
Age	3 years	8 years
Gender	Female	Male
Diagnosis	Myelomeningocele spina bifida	Cerebral palsy, unspecified
Comorbidities	Neurogenic bowel and bladder Asthma Premature lung disease h/o prematurity	Cortical visual impairment h/o prematurity
Prior therapy services	Early intervention OT a, PT b, ST c	Early intervention OT a, PT b, ST c Outpatient PT b between 4 and 7 years of age
Current therapy services	School-based OT a, PT b, ST c. Outpatient OT a, PT b, aquatic therapy, and a referral to ST c	School-based OT a, PT b, ST c, orientation and mobility, and vision therapy
School grade	Preschool	2nd grade
WeeFIM II Total Score (18 full assistance to 126 independent)	Total 31 Selfcare Sub score 11 Mobility Sub score 10 Cognition Sub score 10	Total 88 Selfcare Sub score 30 Mobility Sub score 33 Cognition Sub score 25
Sibling	Greg	Zoe
Age	4 years	6 years
Gender	Male	Female
School grade	Preschool	1st grade
Number of children in home	3	2
Number of adults in home	3	3
Age of mother d	26	37
Race/Ethnicity d	Hispanic American	White
Highest level of education d	Bachelor’s degree	Bachelor’s degree
Employment d	Not employed	Employed full time
Relationship status d	Married	Married
Total family income	$20,000–$39,999	$60,000–$79,999

Note. ^a OT = Occupational therapy; ^b PT = Physical therapy; ^c ST = Speech therapy; ^d The parent who completed the questionnaire.

presents demographic information for each family.

3.1. Case Descriptions

Maura and Family. Maura was a 3-year-old girl with myelomeningocele spina bifida with type II Chiari malformation. She lived with her mother, father, two brothers, and maternal great-grandmother. Maura was born prematurely at 26 weeks’ gestation and received therapy services throughout infancy. At the start of the study, she transitioned from early intervention services to school-based special education preschool services and was also participating in outpatient therapy services. Maura smiled to greet others and often played on the floor with balls, cause-and-effect toys, or dolls. Maura expressed herself by using her hands to approximate signs (‘more,’ all done’) and was learning ‘my turn’ and ‘your turn.’ She expressed frustration through moaning, covering her ears with her hands, and self-injuring actions (hitting her head on the table/floor or hitting her face with her hand). She was crawling independently and wore modified ankle foot orthoses. She also used a stander and transport stroller at home and at school. Her total score on the WeeFIM II was 31/126, indicating she required assistance from caregivers with all activities, and eating and comprehension were rated as her strengths.

Maura’s older brother Greg was 4 years old and attended a preschool for children with typical development. Greg liked to dress up in costumes, play with dinosaur figures, and do physical activities. Luke, the younger brother, was present for most of the intervention sessions and included in the activities. Luke was 2 years old and was at home during the day with a parent or caregiver. He enjoyed listening to music, watching television, and playing with dinosaur figures.

The play space was in the living room and toys were stored in uncovered containers along the wall for the children to access. A toddler-sized table and chairs were used for tabletop play activities, and Maura sat in a chair with the use of a non-skid chair pad.

Maura’s mother and great-grandmother cared for the children during the day while her father worked. Their daily routine began with assisting the two older children in getting ready for and being transported to school. The children were at home together after school and during the weekends. Their cousin, a toddler, also visited periodically during the week. He was present at a few of the sessions and participated in the structured play activities.

Kye and Family. Kye was an 8-year-old boy with cerebral palsy and cortical visual impairment (CVI). He lived with his sister, mother, father, and his paternal great-grandmother. Kye was born prematurely at 25 weeks’ gestation and was hospitalized for the respiratory syncytial virus at 3 years of age. Kye received early intervention throughout infancy and outpatient physical therapy between the ages of 4 and 7 years old. Kye was in an inclusive second grade classroom, received special education, and support from a one-to-one aide. He received school-based therapy services and participated in the extended school year program at the time of the study. Kye was sociable, and he liked to play with vehicles, blocks, and character figures while seated on the floor. Kye expressed himself verbally using one-word or short phrases and a soft voice. He expressed frustration by yelling, turning away, throwing objects, and kicking, or tackling others. Kye ambulated short distances independently and preferred to scoot on his bottom in the house. He used a gait trainer to ambulate long distances. He wore a stabilizing pressure input orthosis vest and modified ankle foot orthoses to school. His total score on the WeeFIM II was 88/126, indicating he needs some assistance in some tasks, and his memory and getting in and out of a chair were rated as strengths.

Zoe, Kye’s sister, was 6 years old and was in first grade. She attended the same elementary school as her brother. Zoe enjoyed arts and crafts and physical sports. Zoe and Kye often played in the living room. Kye liked to play on the floor and Zoe sat on the furniture or stood at a table. The toys were stored in containers around the perimeter of the room. Zoe accessed the toys independently and Kye accessed toys with assistance to visually search for items.

Kye’s mother and father were the primary caregivers. His mother worked remotely four days and one day in the office. His father was a student with a varied schedule. The children were home together every day in the morning, after school, and during the weekends. During the summer, Zoe attended a day camp for one week while Kye attended summer school.

3.2. Goal Development

Maura and Greg’s Goal. The OT met with Maura’s mother at a parent preferred location to discuss the social participation in play goal. They discussed the children’s interests and Maura’s skills for an activity to do with her brother Greg. Her mother described valuing sibling modeling skills for each other and how Maura developed motor skills by imitating her younger brother Luke. She identified the toddler table as a setting where the children frequently sit together; therefore, a table-top activity of building with blocks was selected as the social play activity for the sibling dyad outcome.

Kye and Zoe’s Goal. The OT met with Kye’s parents, Kye, and his sister at his home to discuss their goal. The parents asked Kye and his sister what their ideas were regarding an activity to do together. The initial activity ideas from Kye and Zoe were those they preferred and participated independently in. After collectively brainstorming as a family and trialing a joint drawing task, Kye’s mother decided on a joint craft project as the social play activity for the sibling dyad outcome. The therapist initiated further discussion regarding the desired outcome and the children’s performance during the joint craft project to develop the measurable goal.

Table 2. Social Participation in Play COPM and GAS Outcomes.

	Maura and Her Family		Kye and His Family
COPM	The child and her two brothers, while seated at an activity table, cooperatively play with blocks for 10 minutes by taking turns and with no more than 1 social outburst a.		The child and his sister cooperatively play together, taking turns to craft a project, with adult assistance for coping skills no more than 1 time.
GAS	Children cooperatively play with blocks while seated at the table, with modeling of the sign “my turn,” and		The child and his sister cooperatively play together, taking turns to craft a project, with
−2 Current level (baseline)		verbal cues 6/6 turns and displays social outbursts no more than 5/6 turns.		adult assistance for coping skills 3 times to decrease behavioral outbursts b.
−1 Less than expected		verbal cues 6/6 turns and displays social outbursts no more than 3/6 turns.		adult assistance for coping skills 2 times to decrease behavioral outbursts.
0 Expected		verbal cues 6/6 turns and displays social outbursts no more than 1/6 turns.		adult assistance for coping skills no more than 1 time to decrease behavioral outbursts.
+1 More than expected		verbal cues 4/6 turns and displays social outbursts no more than 1/6 turns.		1 verbal reminder from an adult and 0 behavioral outbursts.
+2 Much more than expected		verbal cues 2/6 turns and displays social outbursts no more than 1/6 turns.		adult supervision c and 0 behavioral outbursts.

Note. ^a Social outburst defined as banging head, covering ears with hands, or moaning; ^b Behavioral outburst defined as crying, pushing, tumbling; ^c Supervision provided by an adult to ensure safety. COPM = Canadian Occupational Performance Measure; GAS = Goal Attainment Scaling.

lists the COPM goal and GAS for each case that was mutually agreed upon by the parent, sibling dyad, and the OT. The goals focused on cooperative play, and GAS progress was reflected by a decreased frequency in sibling dyad outbursts and reduced adult support. Outbursts and adult assistance were individually operationalized and agreed upon to establish meaningful and developmentally appropriate goals in both families. The child and sibling were invited to rate a child friendly COPM, if their comprehension was no more than a mild difficulty, per WeeFIM II scores, age of child, and parent attestation. For case two, both children were invited to rate the COPM since they were older and demonstrated comprehension per parent attestation and WeeFIM II ratings.

3.3. SPOT Guide

The SPOT guide, an adapted Collaborative Process for Action Plans to Achieve Children’s Participation Goals [38], detailing the sibling, child, family, and environmental attributes related to the participation goals, was completed with each family (See Supplementary Table S2 for completed SPOT guide for case 1 and case 2). A SPOT action plan,

Table 3. The Sibling Participation in Occupational Therapy (SPOT) Action Plan to Prioritize Areas of Focus.

Summary of Outcomes to Achieve Goal	Actions, Strategies, and Procedures
Maura and Her Family
Knowledge and understanding of turn-taking during the play activity	Explain what will happen during the activity with the use of first, second, next steps Provide structured adult-led group activities: Activity will afford turn-taking Model, use gestures, and verbalize turns Develop roles for children during the activity Reinforce and praise turn-taking Determine Maura’s understanding of turn-taking by using a sign for ‘my turn’
Sibling relationship: opportunities for playing together	Maximize opportunities for siblings to play together Plan activities for children to do together Adult led groups Include interests of Greg and Maura (movement, dinosaurs, balls) in the activity Use 1 step commands during play to support Maura Develop routine of joint play time
Sibling cognitive skills to judge activity and problem-solve	Discuss Maura’s strengths and limitations Provide developmentally appropriate information to Greg Point out Maura’s actions and ask Greg to reflect
Communication between siblings	Share information with Greg regarding Maura’s signs and communication style by practicing using the signs during activities and praising when signs used without prompts Find out what communication strategies Maura is using at school
Social emotional regulation to express frustration and decrease outbursts	Identify calming strategies for Maura, Greg, and the younger sibling Use calming strategies during play activity to decrease outbursts Model words for Greg to use to express his frustration Acknowledge feelings during activities
Kye and His Family
Knowledge and understanding of play activity and expectations	Explicit description of activity prior to start Use of first, second, next steps Use of timer to increase attention to task Rewards at planned intervals to reinforce attention Ask Kye about what he is doing/making so he can verbalize/label it Anticipate physical assistance needed during activity Prepare materials prior to activity Discuss anticipated needs with Kye prior to activity and brainstorm solutions Ask Kye’s permission to help him prior to initiating help
Sibling relationship: opportunities for playing together	Plan activities for siblings to play together. Develop routine of joint play time Encourage use of play space together. Seated next to each other Permit Zoe to give 2–3 choices for activity, and Kye chooses the activity Reinforce turn-taking during activity
Sibling cognitive skills to judge activity and problem-solve	Prior to activity, discuss with Zoe what may be challenging for Kye during the activity Discuss with Kye before he becomes upset Identify solutions prior to challenge Prior to activity, encourage children to ask for help, not get upset Remind children during activity to ask for help
Communication between siblings	Give feedback/praise throughout the activity Model praising, encouraging with specific descriptions Use specifics, such as Kye’s circle or Kye’s coloring not just general “I like it” Praise given to children when they communicate with each other Give Kye examples questions to ask Zoe about the activity Model words for Zoe to use to express herself and compassion for Kye
Social emotional regulation to express frustration and decrease outbursts	Identify coping strategy for Kye Intermittent emotional checks during the activity, e.g., every 2 turns Model the emotional checks for children Trial with redirecting, setting limits, communication of needs Acknowledge feelings during activities Take activity breaks if emotions are escalating

, developed by the family and OT prioritized focus areas, and specific strategies to achieve the social participation in play goal for each case [38].

SPOT Guide and Maura’s Family. Maura, her two brothers, and both of her parents participated in completing the SPOT guide. Maura’s key strengths were her emerging use of sign language to communicate “more,” “all done,” and nodding her head for yes or no responses. She enjoyed playing and liked stacking blocks. She could follow a one-step direction. Her areas of need were initiating the use of communication signs, physical assistance to navigate in and out of chairs in the play space, and abilities to self-regulate and calm herself, especially with elevated noise levels.

Greg was able to answer some questions on his own, and his parents clarified his answers or provided additional input after his response. Greg’s attributes contributing to the goal were his self-expression of needs, wants, and emotions. Greg liked pretend and physical play, and he was developing comprehension of turn-taking during play. His areas of need related to the participation goal were an understanding of Maura’s strengths and abilities, initiation of communication with Maura, and coping during sibling conflicts.

Maura’s key family attributes were their strong interest in their children playing together and the family’s availability to assist during the activity. The family’s needs were developing a routine of joint play time by selecting play activities that were meaningful to all the children and providing support to the children in understanding the play activity sequence and expectations. The environment included an appropriately sized table and chairs and an open play space inside the house to support the children’s play participation. The play space was quiet unless the sound was from a toy or one of the children who may have become upset. Minimal environmental needs were identified and included increasing accessibility of preferred toys and managing occasional high noise levels.

The SPOT action plan for Maura and her family consisted of strategies to address the children’s knowledge of turn-taking, creating opportunities for sibling play, communication between siblings, social emotional regulation, and helping Greg develop cognitive skills to judge the activity and problem-solve. Apart from the parent’s role to identify effective calming strategies for Greg and Maura, the OT and parents had shared responsibility in applying the actions to support the children’s social participation in play.

SPOT Guide and Kye’s Family. Kye, his sister, mother, and father participated in the SPOT guide completion. Kye and Zoe answered questions to describe their understanding of the activity, and their parents elaborated when needed to clarify their responses. Kye’s key strengths were his ability to grasp tools for drawing, independence with sitting, and interest in playing with his sister. Kye described Zoe as “smart,” and he reported that he is happy “when [Zoe] plays with me.” Kye’s areas of needs were emotional regulation and development of calming strategies when he becomes upset, communication during activities, and physical safety due to recent falls.

Zoe’s key attributes related to the goal were her interest in the craft activity and independence in completing similar activities. She described Kye as being “playful, kind, smart, and bossy” and with verbal cues, she anticipated how his visual limitations may impact the activity. Her areas of need included increasing her understanding of his involvement in the activity, communication with her brother during activities, and learning sibling conflict resolution strategies.

The family’s main attributes were their strong desire for Kye and Zoe to participate in interactive and less isolated play activities, existing routines for family activities, and availability of adult support for the children’s social-emotional and physical needs during activities. The family’s needs included structuring joint play activities of interest to Kye and Zoe, learning strategies that maximize Kye and Zoe’s participation, and consistently applying strategies during joint play. Accessibility of the play space was an environmental strength, and the primary need was anticipatory task and environmental setup to optimize Kye’s physical participation.

The SPOT action plan included strategies to enhance the children’s understanding of play activities, communication with each other, social emotional regulation, problem-solving skills, as well as provision of opportunities for the children to play together. The OT was responsible for suggesting activities to the family that supported Kye and Zoe’s social participation in play. The parents and OT had shared responsibility to support the children’s participation during activity sessions. The parents were also responsible for preparing materials and the space for the activity, brainstorming calming strategies for Kye, and examining their family schedule for incorporating joint play times.

3.4. SPOT Interventions

Occupational Therapy and Maura’s Family. Maura’s family participated in eight therapy sessions over 13 weeks rather than eight consecutive weeks due to conflicts in family schedule. The total direct time of therapy intervention was 405 minutes and social play time accounted for 46% of this time. A holistic approach that collectively supported interrelated performance skills was used 100% of all sessions. Six of 14 intervention strategies listed in

Table 4. Intervention Strategies Implemented during Occupational Therapy (OT).

Intervention Strategy	Maura and Family	Kye and Family
Progress Monitoring	75% a	50%
Collaborating for Task/Object Adaptation	50%	66.7%
Collaborating for Environmental Adaptation	87.5%	33.3%
Collaborating to Apply Abilities	100%	100%
Coaching/Guided Practice on Skills:
● Cognitive skills	37.5% b	66.7%
● Communication skills	87.5%	100%
● Social skills	75%	100%
● Emotional regulation skills	50%	100% c
● Sensory processing skills	12.5% c	33.3% c
● Physical skills	50% c	66.7% c
Encouragement	100% d	100% d
Sharing Resources	25%	0%
Health Promotion	0%	16.7% c
Accessed materials	25% a	50% a

Note. Percentage of OT sessions in which intervention applied; ^a intervention applied solely to parent; ^b applied solely to the sibling; ^c applied solely to the child with a disability; ^d jointly applied to family unit more than 80%.

were applied in more than 50% of sessions. Encouragement and collaboration with the family to apply abilities was implemented 100% of sessions, coaching and/or guided practice of communication and collaboration to adapt the environment was applied 87.5% of sessions, and progress monitoring and coaching and/or guided practice of social skills was utilized 75% of sessions. The OT’s average rating of parent, child, and sibling’s level of engagement in therapy sessions on a scale of 1, "not at all” to 4, “great” was 4, 3.6, and 3.1, respectively.

Occupational Therapy and Kye’s Family. Kye’s family participated in six therapy sessions over seven weeks. The total direct time of therapy intervention was 365 minutes and social play time accounted for 80%. A holistic approach was used 100% of all sessions. Table 4 shows that eight of 14 intervention strategies were applied in more than 50% of sessions. Encouragement, collaboration with the family to apply abilities, and coaching and/or guided practice of communication, social, and emotional regulation skills were implemented 100% of sessions. Collaboration with the family for activity adaptations and coaching and/or guided practice of cognitive skills and physical skills were utilized 66.7% of sessions. The average level of parent, child, and sibling engagement across all therapy sessions, rated from 1 to 4 by the OT, was 4, 4, and 3.8, respectively.

Examples of specific activities completed with each family during SPOT interventions are described in

Table 5. Sample Activities in Occupational Therapy Sessions.

	Maura and Family	Kye and Family
Sample Activity 1	Seated at the toddler table, blocks are divided amongst the children, each child uses “my turn” sign before placing a block on the tower	Seated on the floor, children listen to activity directions, take turns to measure ingredients to make cloud dough, and create shapes/letters with dough
Sample strategies used to support participation	Verbalized and modeled “my/your turn” each turn and praised children for turn-taking	Provided verbal cues to structure reciprocal communication between Kye and Zoe
Sample Activity 2	Seated on the floor, children take turns to bowl with small ball, and use signs for “my/your turn” and give each other high-fives	Seated on the floor, children share blocks to build a castle, working on features together, and using words to describe their actions
Sample strategies used to support participation	Adapted bowling lane with boundaries, assigned helper role to Greg to retrieve/place pins	Questioned Kye and Zoe’s actions to encourage verbal descriptions of what they were building, used soft voices to de-escalate frustration

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3.5. Evaluation of Outcomes

3.5.1. Goal Attainment

Figure 2 illustrates the increase in parent COPM ratings of the children’s performance for both families.

Maura’s Family. Parent COPM performance ratings increased from 4 to 6 after six sessions, and finally to 8 at discharge after eight sessions. The parent’s COPM satisfaction of the children’s performance increased from 1 to 8 to 10, respectively. Maura’s mother and the OT independently rated and discussed the GAS after 6 sessions as 0 (expected level of achievement) and as a +1 (more than expected) after the final session, two weeks later. The children played cooperatively together with less frequent adult modeling and cues and minimal social outbursts. In describing the children’s achievement of the goal, Maura’s mother documented “Maura’s brothers view her as more of a playmate now than before.”

Kye’s Family. Parent COPM ratings after six sessions (also the time of discharge) of performance increased, from 4 initially to 7, and the satisfaction rating from 5 to 7, respectively. Likewise, Kye’s self-rating of his performance rose from 5 to 8 and the satisfaction rating improved from 3 to 10 on the COPM. His sibling rated the final COPM performance as 8 and satisfaction as 8 but had negated to rate the initial COPM due to a decreased interest. After six sessions (also the time of discharge), Kye’s mother and the OT independently rated the GAS as a 0 (expected level of achievement). The children played cooperatively in a joint craft activity with no more than 1 adult cue.

3.5.2. Participant Experiences

Parent, child, and sibling ratings of the experience questionnaire are displayed in

Table 6. Participants’ Ratings of Their Experiences in SPOT.

Parent Questions	Maura’s Mother		Kye’s Mother
Satisfaction w/SPOT	5		4
Extent SPOT successful for children’s participation	5		3
Extent OT collaborated in meeting the goal	5		4
Extent SPOT enhanced parent confidence	5		3
Extent children enjoyed participating in SPOT	3		5
Helpfulness of SPOT process:
ID goal	5		4
ID strengths/outcomes	5		4
Developing action plan	5		4
Sibling inclusion in OT sessions	5		4
Child and Sibling Questions	Maura	Greg	Kye	Zoe
How much fun in SPOT	5	4	5	5
Like being with sibling in OT	5	5	5	5
Learn new ways to play with sibling	x	x	5	4
Like being included in talks with family and OT	x	x	5	3
Likelihood to do it again	5	x	5	4

Note. SPOT = sibling participation in occupational therapy program; OT = occupational therapy; ID = identification; x = participant did not respond to question. Scale: 5 = completely satisfied/very great extent/extremely helpful/lots/Big Yes; 4 = very satisfied/great extent/very helpful/some/somewhat/okay; 3 = moderately satisfied/moderate extent/somewhat helpful/a little/maybe; 2 = slightly satisfied/small extent/slightly helpful/not a lot/not too bad/rather not; 1 = not at all satisfied/not at all/not at all helpful/none/never; 0 = unsure.

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Maura’s Family. Maura’s mother rated the therapeutic process as ‘extremely helpful’ and the extent the OT collaborated in meeting the children’s goal as a ‘very great extent.’ Her rating of satisfaction was ‘completely satisfied’ and the extent that occupational therapy inclusive of both children enhanced her own confidence was a ‘very great extent.’ She documented it was “easy to incorporate activities daily within regular routines.” Parent rating of the extent Maura and her brother enjoyed participating was a ‘moderate extent.’ Maura and Greg, with parent support, rated ‘lots’ when asked if they liked being with their sibling in occupational therapy, and they had ‘some’ to ‘lots’ of fun in the therapeutic activities.

Maura’s mother documented what her children learned from their participation in SPOT. Maura “learned how to play with her brothers, communicate better with them, and play skills such as taking turns.” Greg “learned that he can still play with her despite her disabilities.” Maura’s mother also stated what she learned: “I’ve learned that Maura can in fact have a fully loving, capable, and fun relationship with her fully able siblings…I now better understand that Maura’s activities with her siblings can be fun and inclusive, I just need to give the activities more thought and time.” She noted that using the toddler table was the biggest facilitator to the children’s social participation in play as it provided each of them with a “level playing field.” More sign language and back-up activities to engage the children were described as aspects to improve upon. Her final comment describing her overall experience was “I never thought to improve communication between Maura and her siblings, because frankly I didn’t think my sons would understand…It is amazing to see how much their relationships have grown.”

Kye’s Family. Kye’s mother completed the experience questionnaire and rated the therapeutic process as ‘very helpful’ and the extent the OT collaborated as ‘great extent.’ Her satisfaction with occupational therapy inclusive of Kye and his sister was ‘very satisfied’ and the extent her children enjoyed participating was ‘very great extent.’ The extent SPOT enhanced her own confidence and was successful in supporting the children’s social participation in play was ‘moderate.’ With parent support to read the questions, Kye gave the highest ratings in all questions. Zoe reported having ‘lots’ of fun and rated ‘lots’ when asked if she liked being with Kye in therapy.

Kye’s mother documented what he and his sister learned or gained from SPOT. Kye “is a bit more open to actively playing with his sister and peers,” and Zoe learned “to be more patient with her brother; to ask his permission before helping; and to try to include him more.” Kye’s mother indicated that she gained new tools and verbal cues to support the kids playing together. The biggest facilitator that she noted was encouraging Kye to verbally express himself and ask for help. Her final comment about the family’s participation in SPOT was “I feel more confident that they can play together without a ton of assistance from me…they [are] a bit more confident in their abilities to play independently and resolve conflict.”

4. Discussion

The process of implementing a participation-based approach [37] inclusive of siblings as seen in Figure 1, prioritized parent, child, and sibling perspectives and used the SPOT guide to assess the participatory attributes of each family member and the environment [38]. Enabling children to self-express views of their own performance is valued by children and their parents [47] and was a strength of this approach as it maximized their involvement and applied family-centered care during all phases [37]. The capacity for the children to respond during completion of the SPOT guide and outcome evaluation were reflective of age-related and developmental differences between the children and are consistent with age-related findings of sibling’s awareness of their brother or sister’s disability where older children have more understanding [53]. The two oldest children (Kye and Zoe), who could comprehend the question, indicated that they liked being included in the talks with the OT and family. Being included in the therapeutic process can be perceived as social support, an important consideration in sibling adjustment when one child has a disability [28]. In both cases, the parents reported the therapeutic process as being helpful.

Based upon the assessment of child, family, and environmental attributes, the OT executed specific practices individualized to each family and sibling dyad in therapy sessions. Sensory-processing and physical skills interventions were solely provided to the children with disabilities, illustrating the therapist’s clinical reasoning and discernment of the children’s needs. Emotional regulation interventions to prevent or de-escalate outbursts were applied frequently to the sibling dyad in both families, as would be expected given the families’ goals. In Maura’s family, social interventions included guidance on turn-taking, expressing frustrations, learning sign language, and reading non-verbal communication cues. Kye and Zoe benefited from guidance in respecting each other’s choice to receive help, verbal communication of wants and needs, and coping strategies. Addressing physical limitations, such as manual abilities, was less frequent than interventions for communication and social skills. A possible explanation for this is that the OT and parent adapted physical aspects of the activity and environment to support the social participation of the children. The adapted physical play space, using the toddler table or sitting on the floor, was influential for Maura and Greg and their family to scaffold and enable the children to play with each other. Increasing proximity of the siblings in the play environment was also an environmental intervention used in Kye’s family to support opportunity for sibling interaction, as they cooperatively played.

The interventions provided for each case were family-centered as the OT partnered with the parent to develop inclusive activities for the child with a physical disability and their sibling. Collaboration to apply abilities and encouragement or cultivating hope and offering positive reinforcement were the most common intervention strategies and have been described as modes of therapeutic communication in early intervention [54]. In both families, the mother was highly engaged, participating in preparing an activity, setting up the environment, describing the activity to the children, and sitting alongside the children during the activities while the OT encouraged the parent’s actions. These interventions most likely impacted the parent’s report of how SPOT enhanced their confidence, and both mothers reported learning new ways to support their children. The children’s engagement varied between the cases given the children’s characteristics, such as ages, interests, and caregiver roles and responsibilities. The time needed to encourage the younger children, in Maura’s family, to engage, follow directions, and perform the activity plus time to attend to the young children’s self-care needs was reflected in the difference in total social play time between siblings during intervention sessions and consistent with family-centered practices.

Utilizing SPOT yielded positive outcomes for both cases. In both families, the parent’s ratings of COPM performance and satisfaction were an increase of 2 or more, from pre-intervention to the end of the care episode, and this degree of change is described as a meaningful improvement by Law et al. [55] and an important outcome indicator to parents [47]. The meaningful increases in COPM ratings were also relayed by parents in their subjective feedback that described positive experiences in SPOT and in the children socially participating in play together. The sibling dyads in both families performed at or above expected levels in the GAS, making positive gains in their abilities to interact and regulate social-emotional skills during play. The use of the COPM and GAS for outcome evaluation was reportedly helpful to both families, and the OT valued these measures for their adaptability, capacity for specificity, and simple scoring to address social participation in play goals.

The OT journaled that the Collaborative Process for Action Plans to Achieve Children’s Participation Goals [38] was an easily adaptable tool to address the participation of siblings in a joint play activity. The adapted tool, the SPOT guide, helped the OT structure a more comprehensive and systematic assessment of numerous participatory factors than her standard practice. The families’ responses to the questions helped the OT to prioritize treatment and identify facilitators and barriers to participating in the desired goal. The children with physical disabilities had additional impairments in other developmental areas that were explored while completing the SPOT guide. Subsequently, constructing a SPOT action plan was beneficial to the OT and both families as it assimilated each family member’s attributes and detailed strategies to support the sibling dyad’s joint participation. The plans for both families described creating developmentally appropriate opportunities for the siblings to play together, a strategy recommended to help siblings build social communication and practice prosocial behaviors [7]. Journaling helped the OT to review the therapeutic process of each session and subsequently adapt her therapeutic use of self in working with the sibling dyad and parents.

Applying the five phases of participation-based therapy, adapted for siblings, structured the interaction between the OT and the family, and has potential to increase therapist’s competency in facilitating parent participation, a noted barrier by OTs in early intervention [56]. The mothers’ comments regarding learning skills and gaining tools align with building capacity, an aim of the participation-based approach, to empower parents to develop solutions to challenges on their own [37]. Social support that focuses on problem-solving in the family context is considered higher level support that benefits the sibling and family [28]. The positive gains in the children’s participation and their skill development alludes to building their own capacity, but this remains undetermined since some questions were unanswered by the children. The gains do reflect an interdependence or co-occupational performance in the sibling dyads where the children’s interactions are intimately connected during a play activity and demonstrate the effectiveness of SPOT to achieve meaningful goals in these cases [1].

4.1. Limitations

The findings from this case report are not generalizable as they reflect therapeutic processes specific to these families, their established outcomes, and their natural environments. The parents had interests in community-based therapy to address sibling participation, which may have influenced their level of engagement and responsiveness to therapy. However, the aim was to implement a participation-based approach to address the family’s goal, and findings are consistent with the intended plan. With case-based research, there is potential for bias. The primary authors controlled this by bracketing assumptions prior to the study, and the OT journaled her own reflections after each family session. Both cases experienced gaps in the schedule (i.e., child illness, parent illness, planned vacations) which may have interrupted rapport building, especially with the siblings who are less adept in therapy routines.

4.2. Implications for Practice

This case report demonstrated that a participation-based occupational therapy approach inclusive of siblings can provide family-centered and individualized care to support sibling social participation in a joint play activity. Siblings of children with disabilities traditionally receive support via groups aimed at increasing knowledge and peer support [8,30,32] rather than promoting developmentally appropriate occupational performance in social participation and play. This case report illustrated that including siblings in the therapy process explicitly values their role within the family unit, their relationship with their brother or sister with a disability, and the childhood occupation of sibling social participation in play and is consistent with family systems theory [4]. Developmental maturation will impact the children’s occupations and influence their sibling relationship which further emphasizes sibling inclusion in therapy with progress monitoring across childhood. The GAS and COPM complemented the participation-based approach by allowing the OT to collaborate with the parents and children in establishing a meaningful occupational performance goal. The Collaborative Process for Action Plans to Achieve Children’s Participation Goals [38] was easily adapted to include siblings and individualized to the family’s goal and was useful in systematically supporting siblings, parents, and the OT through the identification of attributes and actions relevant to participation.

4.3. Recommendations for Future Research

Many attributes contribute to sibling participation in play, and further research of these attributes would benefit therapists in supporting family outcomes. Expanding the target population to children who have a newly acquired disability and examining the inclusive sibling approach with children at varying ages will aid rehabilitation practitioners in facilitating sibling participation in occupations across childhood. This approach may be particularly useful during transitions between service programs to support the family’s adjustments and address sibling dyad participation in new routines. The demands of the activity also influence sibling dyad participation and research contrasting the application of the participation-based therapy approach across different activities would support families in different contexts and add value to the approach’s utility. Further research exploring the application of SPOT has the potential to create collaborations between pediatric practitioners and families inclusive of siblings in the delivery of occupational therapy services for children with disabilities.

5. Conclusions

Occupational therapists can apply a participation-based model to address sibling participation in the occupations of social participation and play to support families who have a child with a disability. SPOT included the child, family, and sibling in all phases of the participation model and used a systematic assessment of attributes of participation in sibling play for two families who have a child with a physical disability. Encouragement and collaboration were intervention strategies used most frequently. Parents were satisfied with the sibling dyad’s changes in performance and found the therapeutic process to be helpful. Including siblings in the therapy process was beneficial to supporting the social participation of siblings in play together and achieving family-centered goals for families who have a child with a physical disability.