Abstract
Keywords
In today’s society, the concept of family includes traditional and nontraditional groups of individuals who have a sense of unity and identity that provides all members with a sense of belonging (Honaker, Rowe, & Davis, 2008). Family occupations contribute to this identity, and these occupations provide emotional support, socialize members for participation in occupations within and outside the family, promote health and independence, support readiness for education, and develop potential productivity (Case-Smith, 2004). Ultimately, family occupations prepare children for their future (Segal, 1999).
This unique identity or sense of togetherness that evolves through family occupations is sometimes challenged in families with a child with special needs (DeGrace, 2004; Humphry & Corcoran, 2004). Typical family routines and rituals may be altered or become nonexistent because of the demands of caring for a child with special needs, and these changes may, in turn, affect the identity of the family (Fiese, Foley, & Spagnola, 2006; Segal, 1999). DeGrace (2004) found that families who had a child on the autism spectrum filled their day with “doing” occupations to busy and pacify the child to control his or her behavior. However, Honaker, Huttel, and Thornton (2009) found that some families saw these changes in routines and rituals as positive adaptations to parenting a child with special needs and that the adaptations led to families seeing their lifestyle changes as ordinary.
Although families’ response to a child with special needs may differ, identifying desired family occupations that families want to improve or restore holds value. Honaker, Santore, and Unger (2006) found that families of children with special needs were most interested in eating together as a family, participating in bedtime routines, going out as a family, and going on family vacations. In therapy, engaging the whole family can have a far-reaching impact (Dunst, 2002), particularly in facilitating a sense of being a family. Thus, the focus in evaluation and intervention should not be solely on the child but should also include the family. Meaningful family occupations should be included as part of a comprehensive assessment and intervention plan. Participation in these occupations should be measured and may prove beneficial in establishing efficacy of occupational therapy services.
Family L.I.F.E. (Looking Into Family Experiences) is an occupation-based assessment that engages families and therapists in a collaborative partnership to identify unique and relevant family occupations, evaluate these occupations, and measure perceived success in these occupations. The purpose of our study was to examine the test–retest reliability of Family L.I.F.E. for consistency in identifying desired family occupations for families who have a child with an autism spectrum disorder (ASD). We also examined the relationship among the effectiveness, efficiency, and satisfaction mean scores of the originally identified family occupations when assessed twice by the same therapist.
Method
Participants
Inclusion criteria for this correlational study were a family of any structure, race, or culture with English as the primary language and with a child between ages 3 yr and 12 yr who had a diagnosis on the autism spectrum. In addition, the child with ASD had to have at least one sibling. We deemed this criterion necessary because the dynamics of a family with one child may differ from those of families with multiple children. Participants were a self-selected convenience sample of 15 families from four venues: an outpatient private practice clinic in Maryland and two autism support groups and a specialty autism private consultation company in Pennsylvania. Although all caregivers were invited, 15 mothers were the respondents. The first two families were used to establish consistency in administration of Family L.I.F.E. Results from those two families were not used for test–retest reliability data collection, but they were used in descriptive statistics.
The children with ASD included 4 with autism, 5 with Asperger syndrome, and 6 with pervasive developmental disorder–not otherwise specified. Six children had a diagnosis in addition to ASD. Four children were female, and 11 were male. The children’s age ranged from 4 yr, 0 mo, to 11 yr, 2 mo. Although families of all races were invited to participate in this study, all respondents were White, and all were nuclear families, except one that was experiencing a separation. Two families had 3 children, one family had 3 children but 1 sibling lived with the family part time in a shared-custody situation, and 12 families had 2 children. Seven families were from Maryland, and 8 were from Pennsylvania. Of the sample, 60% were receiving occupational therapy services.
Instrument
Family L.I.F.E. engages families and therapists in a collaborative partnership to identify, evaluate, and measure perceived success in unique and relevant family occupations. The instrument, grounded in the tenets of Occupational Adaptation (Schkade & Schultz, 1992; Schultz & Schkade, 1992), includes a demographic section; a time diary of a typical weekday and a typical weekend day to help identify routines and rituals; and eight interview questions that focus on family togetherness, child rearing, and impact on family occupations. The therapist assists the family in identifying up to five key family occupations and limiting factors. The family then rates each occupation on perceived effectiveness, efficiency, and satisfaction using a Likert scale. The sum of the scores is tallied for each factor and divided by the number of occupations to achieve a separate overall score. Face content, construct validity (Honaker et al., 2006, 2008, 2009), and convergent validity (DeLizzio & Lane, 2008) have been explored, but quantitative reliability has not been established.
Procedure
Two occupational therapists with 13 and 16 yr of pediatric experience administered Family L.I.F.E. to two families. To ensure that Family L.I.F.E. was administered consistently by each therapist, each therapist’s first interview was videotaped, reviewed, and then critiqued under the guidance of DeLana Honaker, Family L.I.F.E.’s author. The answers given were examined jointly by the therapist and Honaker. After this training, 13 additional families participated in the study, with each family providing an initial and a second interview. The average length of time between interviews was 7.08 days. The 1-wk test–retest period was deemed a sufficient interval on the basis of studies of a similar instrument, the Canadian Occupational Performance Measure (Cup, Scholte op Reimer, Thijssen, & van Kuyk-Minis, 2003; Sewell & Singh, 2001). The trained therapists scored the Family L.I.F.E. assessments according to protocol.
Results
Family Occupations
Each of the 13 families identified five family occupations for improvement. Of those occupations, 92% were reidentified on retest. The occupations were categorized according to the Occupational Therapy Practice Framework: Domain and Process (2nd ed.; American Occupational Therapy Association, 2008). Social participation accounted for 45% of the reidentified occupations, which included family mealtimes and community outings. Activities of daily living (ADLs) accounted for 18% of family occupations and included challenges in routines for dressing, showering, toileting, and hygiene. Leisure accounted for 15% of occupations and included vacationing, alone time for couples, or exploration of extracurricular activities for children. Instrumental activities of daily living (IADLs) accounted for 8% of occupations; they included child rearing or parent need for more education about strategies. Play accounted for 7% of occupations and included playing with other children or siblings and sharing or playing games. Rest and sleep accounted for 3% of family occupations, and education and work each accounted for 2%.
Relationships Among Effectiveness, Efficiency, and Satisfaction Scores
Using the Family L.I.F.E. rating scales, the respondent for each family rated perceived effectiveness, efficiency, and satisfaction with family performance in the identified occupations. We analyzed only those occupations identified initially and again on retest. These results are noted in Table 1.
Wilcoxon Signed-Rank Test and Spearman’s ρ Correlation Coefficients
α = .05.
Discussion
The families were consistent in their identification of family occupations they considered relevant and in which they desired a positive change. The 92% reidentification rate suggests that desired family occupations as measured by Family L.I.F.E. remain stable over 1 wk’s time. Social participation (45%), ADLs (18%), leisure (15%), IADLs (8%), and play (7%) accounted for most of the occupations identified. Of particular interest, social participation was cited more than twice as often as any other category.
We found moderate positive relationships between initial and retest values for efficiency and strong positive relationships for effectiveness and satisfaction. Occupations identified as more problematic at initial testing held that position on retest, suggesting that these performance scores are stable constructs of Family L.I.F.E.
The ratings of each family’s perception of how effective and efficient family members believed they were in their engagement in the desired occupations also did not change appreciably, suggesting that the families felt as effective and efficient 1 wk later as they did initially. However, the families’ satisfaction with their engagement in the identified occupations decreased over the 1-wk period. It may be that discussing problematic areas raises awareness and that dissatisfaction may become more apparent with further reflection.
Family L.I.F.E. is an assessment tool that identifies unique and relevant family occupations the family considers important to improve or restore. The results of this study suggest that the occupations identified by families using Family L.I.F.E. are stable over time. In addition, the ratings of effectiveness and efficiency are reliable over a period of 1 wk. The findings indicate that satisfaction with performance on the identified occupations is variable. When using Family L.I.F.E., therapists need to note that changes in satisfaction may not be the best indicator of progress or regression. Family L.I.F.E. potentially provides occupational therapists with essential information by ascertaining desired family occupations and whether those family routines, rituals, and occupations are absent, hindered, or flourishing.
Limitations
Results of this study were limited to one small diagnostic group, one race, and two regional locations; in addition, all respondents were mothers. We did not examine cultural factors in this study. Because of these limitations, this study’s results cannot be generalized to the entire population of families with a child with ASD or other diagnoses. However, the results do support replication with a larger national population to determine consistency across races, cultures, various diagnoses, other single diagnostic categories, or more than one caregiver respondent. Further research is warranted to determine whether satisfaction scores continue to decrease on further reflection or remain stable in families with children with other diagnoses.
Implications for Occupational Therapy Practice
The results of this study have the following implications for occupational therapy practice:
The Family L.I.F.E. assessment tool reliably identifies unique and relevant family occupations the family considers important to improve or restore.
Social participation was identified more than twice as often as ADLs, suggesting the importance of addressing social challenges in therapeutic interventions with children on the autism spectrum and their families. Assessment and intervention for children with ASD must be considered within the greater domain of the family and the occupations valued by the family as a whole.
By nature of its design, Family L.I.F.E. embodies family-centered care. Thus, by identifying family occupations, it serves as a guide for occupational therapists to fully engage the family as partners in facilitating positive outcomes for the child with ASD and for the entire family.
Conclusion
Given the test–retest results from this study and exploration of validity in past studies (DeLizzio & Lane, 2008; Honaker et al., 2006, 2008, 2009), occupational therapy practitioners can use Family L.I.F.E. as a tool with relative confidence. By nature of its design, Family L.I.F.E. embodies family-centered care and thus serves as a guide for occupational therapists to fully embrace the family as partners in hopes of achieving promising outcomes in family occupations.
Footnotes
Acknowledgments
We give our most heartfelt gratitude to Noelle Welch, owner of Coordinated Movements, Inc., for her invaluable contribution to this study and her strong commitment to the Family L.I.F.E. research team. We give our most sincere appreciation to all the families of children with special needs who gave their time to this study.