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Association Between Participation in Life Situations of Children With Cerebral Palsy and Their Physical, Social, and Attitudinal Environment: A Cross-Sectional Multicenter European Study

      Abstract

      Colver A, Thyen U, Arnaud C, Beckung E, Fauconnier J, Marcelli M, McManus V, Michelsen SI, Parkes J, Parkinson K, Dickinson HO. Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study. Arch Phys Med Rehabil 2012;93: 2154-64.

      Objective

      To evaluate how participation of children with cerebral palsy (CP) varied with their environment.

      Design

      Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child's impairments and pain.

      Setting

      European regions with population-based registries of children with CP.

      Participants

      Children (n=1174) aged 8 to 12 years were randomly selected from 8 population-based registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study.

      Interventions

      Not applicable.

      Main Outcome Measure

      Participation in life situations.

      Results

      For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities—mealtimes, health hygiene, personal care, and home life—was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School participation was associated with attitudes of teachers and therapists. Environment explained between 14% and 52% of the variation in participation.

      Conclusions

      The findings confirmed the social model of disability. The physical, social, and attitudinal environment of disabled children influences their participation in everyday activities and social roles.

      Key Words

      List of Abbreviations:

      CFI (comparative fit index), CHIEF (Craig Hospital Inventory of Environmental Factors), CP (cerebral palsy), ECEQ (European Child Environment Questionnaire), ICF-CY (International Classification of Functioning, Disability and Health for Children and Youth), RMSEA (root mean square error of approximation), SPARCLE (Study of PARticipation of Children with cerebral palsy Living in Europe), UN (United Nations)
      PARTICIPATION IS an important outcome for all children, but little is known about participation of disabled children.
      The International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)
      World Health Organization
      International Classification of Functioning, Disability and Health: Children and Youth Version: ICF-CY.
      (P9,15) defines participation as “involvement in life situations,” impairments as “problems in body structure or function,” and contextual factors as “external environmental factors in the social, physical and attitudinal environment or personal factors such as gender, age, personality.” The ICF-CY considers disability to result from an interaction between a person's impairment and their context. Thus, participation restriction is presumed to result at least in part from a failure of the environment to adjust to the individual—a view consistent with the social model of disability.
      • Oliver M.
      The politics of disablement.
      Two United Nations (UN) conventions emphasize the importance of participation: Article 23 of the UN Convention on the Rights of the Child
      United Nations
      Convention on the rights of the child.
      states that “a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community”; Article 9 of the UN Convention on the Rights of Persons with Disabilities
      United Nations
      Convention on the rights of persons with disabilities.
      asserts the obligation of states “to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, transportation, information and communications.”
      If resources are to be directed to implementing these UN resolutions, governments need evidence from large quantitative studies of children about whether environmental adjustments do promote participation of disabled children. There is little such evidence, a recent systematic review
      • Imms C.
      Children with cerebral palsy participate: a review of the literature.
      finding only 4 small quantitative studies on the relationship of children's participation to their environment.
      The Study of PARticipation of Children with cerebral palsy Living in Europe (SPARCLE)
      • Colver A.
      SPARCLE Group
      Study protocol: SPARCLE - a multi-centre European study of the relationship of environment to participation and quality of life of children with cerebral palsy.
      examines how participation of children with cerebral palsy (CP) relates to their environment in 9 European regions. Children with CP were studied, because CP is the most common cause of significant motor impairment in childhood (occurring in 1 in 500 births), and such children often have other impairments of learning, communication, and epilepsy in addition to their motor impairments and therefore are exemplars of the wider population of disabled children. In the SPARCLE study, we found that European countries vary in the environmental adaptations they make for disabled children
      • Tisdall K.
      National contextual factors affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland). Volume 1.
      • Tisdall K.
      National contextual factors affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland). Volume 2.
      and that, for children with CP, both participation
      • Fauconnier J.
      • Dickinson H.O.
      • Beckung E.
      • et al.
      Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study.
      and environmental access
      • Colver A.F.
      • Dickinson H.O.
      • Parkinson K.
      • et al.
      Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European study.
      vary by region. By environmental access we are referring to the social, attitudinal, and physical environment in the home, school, and community such as adapted toilet at home, encouragement by teachers to reach potential, and well-integrated health care in the community. Furthermore, regions where children experienced above average participation generally had better environmental access. However, such relationships must be confirmed at an individual level in order to support the argument that environmental adjustment promotes participation.
      • Morgenstern H.
      Ecologic studies.
      The objective of this article is to evaluate the principal hypothesis of SPARCLE, which states that for children with similar severity of impairment, participation varies depending on their environment.

      Methods

      Participants and Procedures

      The SPARCLE protocol, sampling strategy, response rates, and potential for sample bias have been reported in detail
      • Colver A.
      SPARCLE Group
      Study protocol: SPARCLE - a multi-centre European study of the relationship of environment to participation and quality of life of children with cerebral palsy.
      • Dickinson H.
      • Parkinson K.
      • McManus V.
      • et al.
      Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy.
      and are summarized below.
      Children were eligible if born between July 31, 1991 and April 1, 1997 and on registries of children with CP that cover 8 regions of 6 European countries (southeast France, southwest France, southwest Ireland, west Sweden, north England, Northern Ireland, east Denmark, and central Italy). The 1884 eligible children were randomly sampled after stratification by walking ability, as recorded when the children were originally recruited to the registries: no functional consequences but walking may not be normal; walking restricted but unaided; walking limited and needs aids; unable to walk.
      • Evans P.
      • Alberman E.
      • Johnson A.
      • Mutch L.
      Standardisation of recording and reporting cerebral palsy.
      There were 1,174 families included in the target sample, and 743 (63%) took part. A further region in northwest Germany recruited 75 children from multiple sources.
      • Dickinson H.
      • Parkinson K.
      • McManus V.
      • et al.
      Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy.
      Thus, there were 818 children in total who were visited at home in 2004 through 2005 by researchers who administered questionnaires to parents to assess their child's environment, participation in everyday activities, and social roles, pain, impairments, and sociodemographic characteristics.

      Impairment and Pain

      Parents and researchers completed questionnaires together about the child's impairments. These impairments and their severity (gross motor function,
      • Palisano R.
      • Rosenbaum P.
      • Walter S.
      • Russell D.
      • Wood E.
      • Galuppi B.
      Development and reliability of a system to classify gross motor function in children with cerebral palsy.
      fine motor skills,
      • Beckung E.
      • Hagberg G.
      Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy.
      intellectual ability, seizures, feeding, communication) are shown in table 1. Intelligence quotient was classified in 3 categories: >70, 50 to 70, and <50 according to the intelligence quotient assessment if one was available in the last year and, if not, by a cognitive estimation completed by asking parents about their child's understanding, learning, and friendships. Frequency and severity of pain in the previous week were recorded using the 2 items from the Child Health Questionnaire,
      • Landgraf J.
      • Abetz L.
      • Ware J.E.
      The CHQ: a user's manual (Second Printing).
      but with the time frame changed from 4 weeks to 1 week to be consistent with that used in other instruments in SPARCLE. The distribution of sociodemographic characteristics, impairment, and pain is summarized in table 1.
      Table 1Summary of Distribution of Sociodemographic Characteristics, Impairment, and Pain (N=818)
      Child Characteristicsn%
      Country: region
       France: southeast France678
       France: southwest France779
       Germany: northwest Germany759
       Ireland: southwest Ireland9812
       Sweden: west Sweden8310
       UK: north England11614
       UK: Northern Ireland10212
       Denmark: east Denmark11514
       Italy: central Italy8510
      Sex
       Boys48459
       Girls33441
      Age (y)
       7132
       817121
       915819
       1016620
       1115919
       1212415
       13273
      Impairment
       Gross motor function
        I: walks and climbs stairs, without limitation25731
        II: walks with limitations16420
        III: walks with assistive devices13917
        IV: unable to walk, limited self-mobility11314
        V: unable to walk, severely limited self-mobility14518
       Fine motor skills
        I: without limitation28134
        II: both hands limited in fine skills20525
        III: needs help with tasks13116
        IV: needs help and adapted equipment9111
        V: needs total human assistance11013
       Intellectual impairment
        None or mild (IQ>70)38547
        Moderate (IQ 50–70)18623
        Severe (IQ<50)24230
        Information not available51
       Seizures
        No seizures in previous year65079
        Seizures in previous year16720
        Information not available10
       Feeding
        No problems58371
        Feeds orally with difficulty17622
        Partial or complete feeding by tube587
        Information not available10
       Communication
        Normal speech46357
        Difficulty but uses speech13316
        Uses nonspeech for formal communication9812
        No formal communication12315
        Information not available10
      Parental report of child pain in the previous week
       Severity of pain
        None24029
        Very mild or mild35343
        Moderate, severe, or very severe21326
        Information not available121
       Frequency of pain
        None of the time23729
        Once or twice or a few times41451
        More often1559
        Information not available121
      Abbreviation: IQ, intelligence quotient.

      Measure of Child Environment

      The availability of needed environmental features was assessed using the European Child Environment Questionnaire (ECEQ),
      • Dickinson H.O.
      • Colver A.
      Quantifying the physical, social and attitudinal environment of children with cerebral palsy.
      which originally included 60 items. The ECEQ asks about environmental features that are important to families of children with CP, and which had been identified by a literature review,
      • Mihaylov S.I.
      • Jarvis S.
      • Colver A.
      • Beresford B.
      Identification and description of environmental factors that influence participation of children with cerebral palsy.
      qualitative study,
      • Lawlor K.
      • Mihaylov S.
      • Welsh B.
      • Jarvis S.
      • Colver A.
      A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in northeast England.
      and focus group work
      • McManus V.
      • Michelsen S.
      • Parkinson K.
      • et al.
      Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment.
      in each country participating in SPARCLE. Factor analysis suggested that 51 items could be combined into 9 domains,
      • Dickinson H.O.
      • Colver A.
      Quantifying the physical, social and attitudinal environment of children with cerebral palsy.
      which are set out in table 2. For 37 items (marked with * in table 2), parents were first asked if the item was needed by the child and, if it was, whether the item was available. The remaining 14 items were assumed to be needed by all children. Responses to items were coded as binary variables: needed and not available = 0 and needed and available = 1. If the item was not needed, its availability was imputed using multiple imputation (see Statistical Methods section).
      Table 2Summary of Distribution of Responses to ECEQ Items (N=818)
      ECEQ Domains and ItemsNo. (%) of RespondentsNo. (%) Responders in Each Category
      Not Needed (coded as missing)Needed and Not Available (coded as 0)Needed and Available (coded as 1)
      Physical environment
       Home
        1. Enlarged rooms at home
      Includes question on need.
      815 (100)399 (49)172 (21)244 (30)
        2. Adapted toilet at home
      Includes question on need.
      815 (100)476 (58)132 (16)207 (25)
        3. Modified kitchen at home
      Includes question on need.
      817 (100)584 (71)190 (23)43 (5)
        17. Walking aids
      Includes question on need.
      815 (100)395 (48)24 (3)396 (48)
        18. Hoists at home
      Includes question on need.
      817 (100)578 (71)134 (16)105 (13)
        19. Communication aids at home
      Includes question on need.
      818 (100)611 (75)76 (9)131 (16)
       School
        47. Ramps at school
      Includes question on need.
      803 (98)390 (48)46 (6)367 (45)
        48. Adapted toilets at school
      Includes question on need.
      803 (98)394 (48)51 (6)358 (44)
        49. Lifts at school
      Includes question on need.
      802 (98)526 (64)99 (12)177 (22)
        50. Communication aids at school
      Includes question on need.
      798 (98)499 (61)47 (6)252 (31)
       Community
        4. Ramps in public places
      Includes question on need.
      816 (100)366 (45)220 (27)230 (28)
        5. Adapted toilets in public places
      Includes question on need.
      813 (99)445 (54)188 (23)180 (22)
        6. Lifts in public places
      Includes question on need.
      815 (100)272 (33)136 (17)407 (50)
        8. Suitable doorways in public places
      Includes question on need.
      817 (100)359 (44)165 (20)293 (36)
        9. Room in public places to move around
      Includes question on need.
      816 (100)341 (42)197 (24)278 (34)
        10. Smooth pavements in town or village center
      Includes question on need.
      815 (100)203 (25)319 (39)293 (36)
        11. Adequate vehicle
      Includes question on need.
      818 (100)210 (26)124 (15)484 (59)
        12. Accessible car parking
      Includes question on need.
      816 (100)293 (36)171 (21)352 (43)
       Transport
        13. Adequate bus service
      Includes question on need.
      814 (100)478 (58)157 (19)179 (22)
        14. Accessible buses
      Includes question on need.
      814 (100)476 (58)164 (20)174 (21)
        15. Accessible train services
      Includes question on need.
      813 (99)523 (64)153 (19)137 (17)
        16. Accessible taxis
      Includes question on need.
      816 (100)431 (53)82 (10)303 (37)
      Social support
       Home
        20. Receive grants for equipment
      Includes question on need.
      816 (100)280 (34)56 (7)480 (59)
        21. Receive grants for home modifications
      Includes question on need.
      805 (98)430 (53)186 (23)189 (23)
        22. Receive grants for holidays
      Includes question on need.
      814 (100)348 (43)296 (36)170 (21)
        23. Information about financial benefits
      Includes question on need.
      815 (100)90 (11)400 (49)325 (40)
        36. Helper or assistant at home
      Includes question on need.
      817 (100)505 (62)164 (20)148 (18)
       Community
        24. Suitable leisure facilities781 (95)0 (0)362 (44)419 (51)
        29. Child receives physical help from people in public places
      Includes question on need.
      812 (99)318 (39)206 (25)288 (35)
        33. Health service staff coordinate work well803 (98)0 (0)213 (26)590 (72)
        34. Social services coordinate work well
      Includes question on need.
      799 (98)460 (56)147 (18)192 (23)
        35. Child looked after elsewhere for few days
      Includes question on need.
      816 (100)495 (61)155 (19)166 (20)
        38. Parent support groups in area
      Includes question on need.
      810 (99)426 (52)255 (31)129 (16)
        39. Counseling available
      Includes question on need.
      805 (98)264 (32)269 (33)272 (33)
        42. People in public places have positive attitude toward child803 (98)0 (0)181 (22)622 (76)
      Attitudes
       Family and friends
        26. Emotional support from wider family/friends811 (99)0 (0)85 (10)726 (89)
        28. Physical help from wider family/friends
      Includes question on need.
      813 (99)187 (23)162 (20)464 (57)
        31. Child allowed extra time at home
      Includes question on need.
      813 (99)153 (19)52 (6)608 (74)
        37. Family/friends look after child for a few hours
      Includes question on need.
      817 (100)248 (30)224 (27)345 (42)
        41. Wider family and friends have positive attitude toward child810 (99)0 (0)37 (5)773 (94)
        44. Child encouraged to reach potential from wider family/friends809 (99)0 (0)125 (15)684 (84)
       Teachers and therapists
        30. Teachers/doctors listen to your views811 (99)0 (0)84 (10)727 (89)
        46(a.) Child has school placement s/he needs798 (98)0 (0)68 (8)730 (89)
        51. Special staff help child in school
      Includes question on need.
      805 (98)127 (16)43 (5)635 (78)
        52. Child allowed extra time at school
      Includes question on need.
      773 (94)120 (15)98 (12)555 (68)
        53. Child encouraged to reach potential from teachers/therapists794 (97)0 (0)55 (7)739 (90)
        55. Child receives emotional support from teachers/therapists774 (95)0 (0)63 (8)711 (87)
        60. Teachers have understanding of medical condition788 (96)0 (0)147 (18)641 (78)
       Classmates
        54. Child encouraged to reach potential from classmates727 (89)0 (0)164 (20)563 (69)
        56. Child receives emotional support from classmates724 (89)0 (0)149 (18)575 (70)
        59. Classmates have positive attitude toward child758 (93)0 (0)58 (7)700 (86)
      low asterisk Includes question on need.

      Measure of Child Participation

      Participation was assessed using Assessment of Life Habits,
      • Noreau L.
      • Lepage C.
      • Boissiere L.
      • et al.
      Measuring participation in children with disabilities using the Assessment of Life Habits.
      which has been validated in disabled children,
      • Noreau L.
      • Lepage C.
      • Boissiere L.
      • et al.
      Measuring participation in children with disabilities using the Assessment of Life Habits.
      including those with CP.
      • Lepage C.
      • Noreau L.
      • Bernard P.M.
      • Fougeyrollas P.
      Profile of handicap situations in children with cerebral palsy.
      It comprises 62 items grouped into 11 domains covering daily activities and social roles. The 9 domains we use in this article are set out in table 3, the other 2 domains being communication and community life. We also omitted 1 question about sexual relationships, because it was inappropriate to this age group. For 15 items that concern nondiscretionary participation regarded as essential to a child's daily life, the parent is asked if the child achieves it with or without difficulty. For the other 47 items, the parent is asked if the child achieves it and, if yes, whether with or without difficulty. Responses are coded as ordinal variables (performed without difficulty, performed with difficulty, not performed because too difficult, missing if not performed for other reasons).
      Table 3Distribution of Responses to Assessment of Life Habits Items (N=818)
      Assessment of Life Habits Domains and ItemsNo. (%) of RespondentsNo. (%) Responders in Each Category
      Item AchievedItem Not Achieved
      Without Difficulty (coded as 0)With Difficulty (coded as 1)Too Difficult (coded as 2)Other Reasons (coded as missing)
      Daily activities
       Mealtimes
        1. Eating meals
      Nondiscretionary item, assumed to be achieved by all children.
      815 (100)518 (63)297 (36)0 (0)0 (0)
        16. Selecting the type and amount of food desired802 (98)548 (67)94 (11)94 (11)66 (8)
        17. Taking part in preparing meals810 (99)267 (33)148 (18)230 (28)165 (20)
        18. Eating out at restaurants, cafes, or fast food outlets810 (99)508 (62)208 (25)70 (9)24 (3)
       Health hygiene
        2. Getting in and out of bed
      Nondiscretionary item, assumed to be achieved by all children.
      818 (100)563 (69)255 (31)0 (0)0 (0)
        19. Getting a good sleep801 (98)567 (69)107 (13)111 (14)16 (2)
        20. Doing physical exercise for health810 (99)366 (45)310 (38)90 (11)44 (5)
        21. Doing leisure pursuits for relaxation811 (99)690 (84)82 (10)12 (1)27 (3)
       Personal care
        3. Attending to personal hygiene
      Nondiscretionary item, assumed to be achieved by all children.
      815 (100)391 (48)424 (52)0 (0)0 (0)
        4. Toileting at home
      Nondiscretionary item, assumed to be achieved by all children.
      812 (99)495 (61)317 (39)0 (0)0 (0)
        5. Toileting away from home
      Nondiscretionary item, assumed to be achieved by all children.
      805 (98)430 (53)375 (46)0 (0)0 (0)
        6. Dressing and undressing upper half of body
      Nondiscretionary item, assumed to be achieved by all children.
      815 (100)358 (44)457 (56)0 (0)0 (0)
        7. Dressing and undressing lower half of body
      Nondiscretionary item, assumed to be achieved by all children.
      813 (99)338 (41)475 (58)0 (0)0 (0)
        8. Taking part in their own health care
      Nondiscretionary item, assumed to be achieved by all children.
      805 (98)476 (58)329 (40)0 (0)0 (0)
        9. Using services provided by the local doctor, hospital, or rehabilitation center
      Nondiscretionary item, assumed to be achieved by all children.
      799 (98)522 (64)277 (34)0 (0)0 (0)
        22. Putting on and taking off his/her own aids812 (99)233 (28)100 (12)265 (32)214 (26)
       Home life
        10. Entering and leaving home
      Nondiscretionary item, assumed to be achieved by all children.
      815 (100)560 (68)255 (31)0 (0)0 (0)
        11. Moving around the home
      Nondiscretionary item, assumed to be achieved by all children.
      816 (100)619 (76)197 (24)0 (0)0 (0)
        31. Helping with housework817 (100)301 (37)145 (18)259 (32)112 (14)
        32. Helping in the garden or backyard816 (100)228 (28)110 (13)264 (32)214 (26)
        33. Managing common household things, eg, tables, light switches, cupboards, doors812 (99)522 (64)116 (14)169 (21)5 (1)
        34. Moving about just outside the home813 (99)517 (63)223 (27)65 (8)8 (1)
       Mobility
        12. Moving about on streets and pavements
      Nondiscretionary item, assumed to be achieved by all children.
      811 (99)410 (50)401 (49)0 (0)0 (0)
        35. Moving about on slippery or uneven surfaces813 (99)261 (32)355 (43)193 (24)4 (0)
        36. Riding a bicycle, tricycle, scooters, rollerblades, wheelchair for pleasure, etc814 (100)385 (47)223 (27)174 (21)32 (4)
        37. Traveling as a passenger in vehicles814 (100)615 (75)183 (22)8 (1)8 (1)
      Social roles
       Responsibilities
        38. Recognizing money and using it correctly816 (100)314 (38)118 (14)306 (37)78 (10)
        39. Managing pocket money818 (100)291 (36)74 (9)302 (37)151 (18)
        40. Using a bank or post office account815 (100)101 (12)25 (3)278 (34)411 (50)
        41. Shopping or doing errands812 (99)300 (37)88 (11)307 (38)117 (14)
        42. Respecting other people's property and rights808 (99)547 (67)88 (11)159 (19)14 (2)
        43. Taking responsibility for him/herself814 (100)372 (45)118 (14)282 (34)42 (5)
        44. Supporting family members as needed815 (100)513 (63)87 (11)177 (22)38 (5)
       Relationships
        45. Maintaining a loving relationship with parents814 (100)760 (93)45 (6)8 (1)1 (0)
        46. Maintaining a loving relationship with other members of family living at home815 (100)635 (78)57 (7)7 (1)116 (14)
        47. Maintaining a loving or social relationship with other relatives811 (99)729 (89)45 (6)17 (2)20 (2)
        48. Maintaining friendly links with other young people at school or at leisure810 (99)626 (77)127 (16)43 (5)14 (2)
        49. Maintaining friendly links with other adults813 (99)719 (88)71 (9)19 (2)4 (0)
       School
        13. Getting to school, entering and moving about within the school and yard
      Nondiscretionary item, assumed to be achieved by all children.
      804 (98)539 (66)265 (32)0 (0)0 (0)
        14. Taking part in lessons, assignments and assessments at school
      Nondiscretionary item, assumed to be achieved by all children.
      801 (98)434 (53)367 (45)0 (0)0 (0)
        15. Using school facilities
      Nondiscretionary item, assumed to be achieved by all children.
      796 (97)518 (63)278 (34)0 (0)0 (0)
        52. Taking part in a range of extra classes including physical education, music, etc755 (92)270 (33)144 (18)154 (19)187 (23)
        53. Doing homework807 (99)295 (36)285 (35)75 (9)152 (19)
        54. Taking part in activities organized by the school806 (99)517 (63)252 (31)15 (2)22 (3)
       Recreation
        55. Playing sports or outdoor games811 (99)326 (40)233 (28)174 (21)78 (10)
        56. Playing nonsporting games816 (100)472 (58)177 (22)138 (17)29 (4)
        57. Going and watching sports events813 (99)246 (30)81 (10)128 (16)358 (44)
        58. Taking part in artistic, cultural, or craft activities806 (99)329 (40)167 (20)139 (17)171 (21)
        59. Going and watching artistic or cultural events814 (100)472 (58)186 (23)93 (11)63 (8)
        60. Taking part in tourist activities812 (99)455 (56)292 (36)44 (5)21 (3)
        61. Getting to and moving about within local recreational facilities801 (98)399 (49)167 (20)148 (18)87 (11)
        62. Taking part in the activities in local recreational facilities799 (98)285 (35)135 (17)189 (23)190 (23)
      low asterisk Nondiscretionary item, assumed to be achieved by all children.
      All items in Assessment of Life Habits also ask whether the child needs assistance to participate. Our analysis ignored the questions about assistance, because we wanted to assess participation without incorporating any influence of environmental factors.
      • Fauconnier J.
      • Dickinson H.O.
      • Beckung E.
      • et al.
      Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study.

      Prior Hypotheses

      We hypothesized associations between specific domains of participation and environment, as shown in the first and second columns of tables 4 and 5. We hypothesized that children's physical environment at home influenced their participation in most home-based daily activities; that transport and the physical environment in the community influenced their mobility outside the home; and that specific environmental domains influenced specific social roles.
      Table 4Relationship Between Participation in Daily Activities and Environment
      Participation Domain (Life-H)Environmental Domain (ECEQ)Standardized Regression Coefficients Relating Participation to:RMSEACFI% Variance Explained by Environment
      Percent change in variance between models with and without ECEQ domain, constraining Life-H measurement model without ECEQ to be identical to model with ECEQ.
      EnvironmentImpairment b (95% CI)
      Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment and pain.
      Pain b (95% CI)
      Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment and pain.
      b (95% CI)
      Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment and pain.
      P
      MealtimesPhysical environment: home0.22 (0.12 to 0.32)0.001−0.92 (−0.87 to −0.96)Omitted (not significant)0.0480.99224%
      Health hygienePhysical environment: home0.22 (0.05 to 0.38)0.011−0.77 (−0.69 to −0.84)−0.17 (−0.25 to −0.09)0.0480.98614%
      Personal carePhysical environment: home0.33 (0.22 to 0.43)<0.001−0.64 (−0.57 to −0.71)−0.13 (−0.20 to −0.05)0.0500.98818%
      Home lifePhysical environment: home0.30 (0.19 to 0.41)<0.001−0.82 (−0.77 to −0.88)−0.14 (−0.24 to −0.04)0.0490.99030%
      MobilityTransport0.52 (0.27 to 0.76)<0.001−0.53 (−0.45 to −0.62)Omitted (not significant)0.0460.99025%
      MobilityPhysical environment: community0.51 (0.29 to 0.74)<0.001−0.59 (−0.51 to −0.67)Omitted (not significant)0.0470.98316%
      Mobility related simultaneously to both transport and physical environment in community:
      MobilityTransport0.35 (0.19 to 0.50)<0.001−0.56 (−0.49 to −0.64)Omitted (not significant)0.0400.98129%
      Physical environment: community0.16 (0.02 to 0.30)0.025
      Abbreviations: CI, confidence interval; Life-H, Assessment of Life Habits.
      low asterisk Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment and pain.
      Percent change in variance between models with and without ECEQ domain, constraining Life-H measurement model without ECEQ to be identical to model with ECEQ.
      Table 5Relationship Between Participation in Social Roles and Environment
      Participation Domain (Life-H)Environmental Domain (ECEQ)b
      Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in environment. Positive values of b indicate that participation increases with greater availability of environmental items.
      (95% CI)
      PRMSEACFI
      ResponsibilitiesPhysical environment: home0.20 (0.11 to 0.28)<0.0010.0500.991
      Attitudes: family and friends0.13 (0.06 to 0.19)<0.0010.0440.991
      Attitudes: teachers and therapists0.06 (−0.01 to 0.12)0.1220.0560.985
      Attitudes: classmates0.09 (0.02 to 0.16)0.0080.0600.988
      Social support: home0.35 (0.19 to 0.50)<0.0010.0420.993
      Social support: community0.18 (0.07 to 0.29)0.0010.0640.976
      RelationshipsAttitudes: family and friends0.22 (0.10 to 0.33)<0.0010.0370.989
      Attitudes: teachers and therapists0.08 (−0.04 to 0.19)0.1850.0470.981
      Attitudes: classmates0.35 (0.25 to 0.46)0.0020.0470.988
      SchoolPhysical environment: school0.19 (−0.07 to 0.44)0.1480.0720.964
      Attitudes: teachers and therapists0.32 (0.23 to 0.41)<0.0010.0630.961
      Attitudes: classmates0.12 (0.02 to 0.220.0200.0760.964
      RecreationTransport0.26 (0.16 to 0.36)<0.0010.0570.982
      Attitudes: family and friends0.14 (0.06 to 0.23)0.0010.0480.984
      Social support: home0.35 (0.20 to 0.50)<0.0010.0450.987
      Social support: community0.30 (0.19 to 0.41)<0.0010.0640.967
      Abbreviations: CI, confidence interval; Life-H, Assessment of Life Habits.
      NOTE. Models considered each environmental domain independently. All models included impairment and pain.
      low asterisk Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in environment. Positive values of b indicate that participation increases with greater availability of environmental items.

      Statistical Methods

      We treated both participation and environment as latent variables. Thus, we assumed that each of the domains of participation and environment could be summarized by a single factor that could not be observed directly, but which determined the parents' responses to the items.
      • Kline R.B.
      Principles and practice of structural equation modeling.
      • Streiner D.
      • Norman G.
      Health measurement scales: a practical guide to their development and use.
      These factors were estimated from the parents' responses to the items in the relevant domain, using structural equation modeling. As with all latent variables, arbitrary constraints were introduced in order to define the scale of the environmental and participation factors: we constrained the loading of the first item of each factor to be equal to 1.
      The structural equation models
      • Kline R.B.
      Principles and practice of structural equation modeling.
      related specific domains of participation to specific environmental domains, according to our prior hypotheses, while allowing for impairment and pain. We used multiple imputation
      • Schafer J.L.
      Analysis of incomplete multivariate data.
      to impute environmental data that were missing due either to a lack of response or because the feature was not needed. Within each region, missing data for each item were assigned after randomly sampling from a distribution with the observed proportion of available items. Hence, the data for each item—and the latent variables estimated from these data—reflected the availability or nonavailability of environmental items and did not reflect the child's need (or lack of need) for the item. Five imputed datasets were generated. Confidence intervals reflected the uncertainty in each model because of both ordinary sampling variation and imputation of missing data. Statistical analysis was performed using Mplus.a
      The structural equation model for the hypothesized association between the child's physical environment at home and participation in home life is shown in figure 1; models for hypothesized associations between other domains of participation and environment were similar, using the items from the relevant Assessment of Life Habits and ECEQ domains. Our main objective was to estimate the magnitude of the regression coefficient (labeled b in fig 1) relating participation to environment, while adjusting for impairment and pain. Impairment was modeled as a factor expressed through the observed impairments
      • Yeend E.
      Child and family determinants of self-reported quality of life in children with cerebral palsy.
      gross motor function, fine motor skills, intellectual ability, seizures, feeding, communication, and with a correlation between gross and fine motor skills. Pain was modeled as a factor expressed through the observed frequency and severity of pain. The covariance matrix was analyzed using mean and variance-adjusted weighted least squares with robust SEs and pairwise deletion of missing data. Covariates that were not statistically significant (Wald P>.05) were dropped from the model. Model fit was assessed using the root mean square error of approximation (RMSEA) and the Comparative Fit Index (CFI). Models were adjusted until the fit indices were satisfactory, by inspecting modification indices and omitting items (ECEQ or Assessment of Life Habits responses) or adding correlations between items, or between items and factors, as appropriate (see appendix 1).
      Figure thumbnail gr1
      Fig 1Structural equation model used for the hypothesized association between the child's physical environment at home and participation in home life. Circles represent latent variables. Rectangles represent observed variables: Assessment of Life Habits items, ECEQ items, types of impairments, and pain measures. Straight arrows connecting circles and/or rectangles represent linear relations. The variable at the tail of the arrow is assumed to influence the variable at the head of the arrow. Curved arrows represent correlations. Short arrows pointing at rectangles represent residual variability. b is the regression coefficient relating participation to environment; it is the main parameter of interest. The estimated values of b for the hypothesized associations of participation domains and environmental domains are reported in Table 4, Table 5, Table 6. Abbreviation: Life-H, Assessment of Life Habits.
      Where several environmental domains were significant predictors of the same domain of participation, we used a stepwise procedure to assess which environmental domains were independently significant. We selected the most significant domain and built further models that included this domain and each of the remaining domains in turn; we again selected the most significant additional domain and repeated this procedure until no further domains were significant. To avoid spurious significance consequent to multiple hypothesis testing, we regarded Wald P<.01 as statistically significant. The final models excluded children with missing data on impairment and pain.
      We report results as standardized regression coefficients (b coefficients), which allow within-study comparison of the effects of different predictors,
      • Kline R.B.
      Principles and practice of structural equation modeling.
      in particular comparison of the effects of environment and impairment. They estimate the change in participation, in standard deviation units, consequent to a change of 1SD in the independent variable (environment, impairment, or pain).
      As an indicator of the variation in participation explained by environment, we noted the percentage increase in the residual variance of participation consequent to removing environment from the model, while constraining the measurement model for participation to remain unchanged. It was not possible to separate the percentage of total variance that was explained by pain and impairment, because we knew from earlier analysis
      • Parkinson K.N.
      • Gibson L.
      • Dickinson H.O.
      • Colver A.F.
      Pain in children with cerebral palsy: a cross-sectional multicentre European study.
      that these factors were correlated, unlike environment, which was not expected to be correlated with either explanatory latent variable.

      Ethics

      Ethics committee approval was obtained in each country. The study was performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All parents gave written consent. All children with sufficient cognitive capacity gave written consent or communicated consent if unable to write.

      Results

      A total of 818 families joined the study. The distribution of the types and levels of the children's impairments and the parents' reports of their child's pain is shown in table 1. Six children (0.7%) had missing data on any type of impairment; 12 (1.5%) had missing data on parent-reported pain. For the ECEQ, the proportion of missing responses ranged from zero for items 11 and 19 to 11% for item 56 (see table 2). The proportion of ECEQ items that were not needed ranged from zero (for items 24, 26, 30, 33, 41, 42, 44, 46, 53–56, 59, 60, which were assumed to be needed by all children) to 75% for item 19 (communication aids at home). For Assessment of Life Habits, the proportion of missing responses ranged from zero for item 2 to 8% for item 52 (see table 3). Responses to Assessment of Life Habits were additionally coded as missing if the child did not perform the task because s/he was not interested or the activity was not relevant to their age; the proportion of such responses varied from zero for item 45 to 50% for item 40.

      Daily Activities

      More severe impairment was associated with lower participation on all domains considered (see table 4). More pain was significantly associated with lower participation in health hygiene, personal care, and home life. After allowing for impairment and pain, a better physical environment at home was significantly (P<.01) associated with higher participation in mealtimes, personal care, and home life; the association with health hygiene was of marginal statistical significance (P=.011). Better mobility was associated with both better transport and a better physical environment in the community, but after allowing for the former association, the latter was of marginal statistical significance (P=.025). Comparison of regression coefficients indicated that environment had less impact on these domains of participation than impairment, but more impact than pain. Environment explained between 14% and 30% of the variation in participation. The fit of all models was satisfactory (RMSEA≤.05, CFI>.95).

      Social Roles

      As shown in table 5, most but not all of the hypothesized associations between environment and participation in social roles were statistically significant (P<.01). The following hypothesized associations remained significant: between participation in responsibilities and the physical environment at home, attitudes of family and friends, attitudes of classmates, social support at home, social support in the community; between participation in relationships and attitudes of family and friends, attitudes of classmates; between participation at school and attitudes of teachers and therapists; and between participation in recreation and transport, attitudes of family and friends, social support at home, social support in the community. However, some environmental domains that significantly predicted participation when considered individually were not included in our final models, because they were highly correlated with other environmental domains. For example, in the model of participation in responsibilities, the correlations between the physical environment at home, attitudes of family and friends, attitudes of classmates, and social support in the community with social support at home were .81, .26, .23, and .82 respectively; therefore, the former domains were not significant if social support at home was included in the model. In the model of participation in relationships, the correlation between attitudes of family and friends and attitudes of classmates was .42, and therefore the former was not significant if the latter was included in the model. In the model of recreation, the correlations of transport and attitudes of family and friends with social support at home were .59 and .44, respectively, and therefore social support at home was not significant when both transport and attitudes of family and friends were included in the model. Similar but lower correlations resulted in exclusion of social support in the community; however, the correlation between transport and attitudes of family and friends was .22, and therefore both these factors remained in the model. Hence, social support in the home was the strongest independent predictor of participation in responsibilities, attitudes of classmates were the strongest predictor of participation in relationships, attitudes of teachers and therapists were the strongest predictor of participation in school life, and both transport and attitudes of family and friends independently predicted participation in recreation. Pain was removed from the final models because it was not statistically significant and correlations were added as appropriate (see appendix 1). This yielded the final models shown in table 6. Environment explained between 15% and 52% of the variation in participation. The fit of the models for all domains, except that of relationships, was satisfactory (RMSEA≤.05, CFI>.95).
      Table 6Relationship Between Participation in Social Roles and Environment: Final Models
      Participation Domain (Life-H)Environmental Domain (ECEQ)Standardized Regression Coefficients Relating Participation to:RMSEACFI% Variance Explained by Environment
      Percentage change in variance between models with and without ECEQ domain, constraining Life-H measurement model without ECEQ to be identical to model with ECEQ.
      EnvironmentImpairment b (95% CI)
      Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment.
      b (95% CI)
      Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment.
      P
      ResponsibilitiesSocial support: home0.35 (0.19 to 0.50)<0.001−0.96 (−0.88 to −1.03)0.0440.99452%
      RelationshipsAttitudes: classmates0.36 (0.24 to 0.48)<0.001−0.51 (−0.42 to −0.59)0.0510.99019%
      SchoolAttitudes: teachers and therapists0.33 (0.24 to 0.43)<0.001−0.55 (−0.48 to −0.63)0.0480.98215%
      RecreationTransport0.24 (0.14 to 0.34)<0.001−0.73 (−0.66 to −0.77)0.0430.98625%
      Attitudes: family and friends0.11 (0.03 to 0.19)0.011
      NOTE. Models included environmental domains that were simultaneously significant. Pain was not significant in any models.
      Abbreviations: CI, confidence interval; Life-H, Assessment of Life Habits.
      low asterisk Standardized regression coefficient (and 95% CI), indicating the change in participation, in SD units, consequent to a change of 1SD in the independent variable. Positive values of b indicate that participation increases with greater availability of environmental items, negative values indicate that participation decreases with increasing severity of impairment.
      Percentage change in variance between models with and without ECEQ domain, constraining Life-H measurement model without ECEQ to be identical to model with ECEQ.

      Discussion

      Summary of Main Findings

      Our findings support the principal hypothesis of SPARCLE that, among children with similar severity of impairment, higher participation is associated with the availability of a better environment. More favorable attitudes—of family and friends, of teachers and therapists, and of classmates—were an important component of the environment, being associated with better participation in several aspects of social roles. For participation in daily activities, a more accessible physical environment was associated with better participation.
      Child environment, as measured by the ECEQ, accounted for between 14% and 52% of the variation in participation between children.

      Comparison With Other Studies

      Two quantitative studies found geographical variation in the participation of children with CP,
      • Welsh B.
      • Jarvis S.
      • Hammal D.
      • Colver A.
      How might districts identify local barriers to participation for children with cerebral palsy?.
      • Hammal D.
      • Jarvis S.
      • Colver A.
      Participation of children with cerebral palsy is influenced by where they live.
      but they did not examine which were the relevant environmental features.
      Forsyth et al
      • Forsyth R.
      • Colver A.
      • Alvanides S.
      • Woolley M.
      • Lowe M.
      Participation of young severely disabled children is influenced by their intrinsic impairments and environment.
      found in a national study that the participation of severely disabled children was influenced by their environment, especially by social support, physical access, and transport. King et al
      • King G.
      • Law M.
      • Hanna S.
      • et al.
      Predictors of the leisure and recreation participation of children with physical disabilities: a structural equation modeling analysis.
      undertook a study of leisure and recreation participation in children with physical impairments, using the instrument Craig Hospital Inventory of Environmental Factors (CHIEF)
      • Whiteneck G.G.
      • Harrison-Felix C.L.
      • Mellick D.C.
      • Brooks C.A.
      • Charlifue S.B.
      • Gerhart K.A.
      Quantifying environmental factors: a measure of physical, attitudinal, service, productivity, and policy barriers.
      to measure environment. Using a structural equation model, the authors found that family cohesion, supportive relationships, and environmental access had only small indirect effects on participation; the indirect effect being mediated through personal factors such as the child's preferences and emotional state. However, the small effect detected may be partly because the CHIEF generates a score based on the frequency and extent of perceived environmental barriers and therefore yields a subjective measure of the influence of environment on participation rather than a direct measure of the environment; this measure may reflect differing expectations of participation rather than actual environmental barriers.
      • Whiteneck G.
      • Dijkers M.
      Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.
      A study of adults with spinal cord injury found that environment, as measured by the CHIEF, explained 4% or less of the variation in domains of participation.
      • Whiteneck G.
      • Meade M.
      • Dijkers M.
      • Tate D.
      • Bushnik T.
      • Forchheimer M.
      Environmental factors and their role in participation and life satisfaction after spinal cord injury.
      A study of adults with mobility limitations
      • Hollingsworth H.
      • Gray D.B.
      Structural equation modeling of the relationships between participation in leisure activities and community environments by people with mobility impairments.
      found a moderate relationship between participation in leisure activities and the community environment; however, the environmental questionnaire used (Facilitators and Barriers Survey/Mobility)
      • Gray D.B.
      • Hollingsworth H.H.
      • Stark S.
      • Morgan K.A.
      A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations.
      was similar to the CHIEF in that it generated a subjective measure of environment.
      Our study is a cross-sectional analysis, and therefore the association between environment and participation cannot be interpreted as a causal relationship without other supporting evidence, ideally, a longitudinal study that assesses the impact on participation of environmental change. However, the consistency between the results of our study and those of other quantitative and qualitative studies
      • Imms C.
      Children with cerebral palsy participate: a review of the literature.
      suggests that the statistically significant associations we have found may indeed reflect a causal effect of environment on participation. Furthermore, considering the independence of our measures of environment and participation, and our adjustment for individual-level factors, we think our estimates of the magnitude of this effect improve on previous studies.

      Implications for Practice

      While both severity of impairment and lack of needed environmental features are associated with reduced participation,
      • Forsyth R.
      • Colver A.
      • Alvanides S.
      • Woolley M.
      • Lowe M.
      Participation of young severely disabled children is influenced by their intrinsic impairments and environment.
      there is speculation about whether environment or impairment should be the target for change—addressing the former assumes a social model of disability, whereas addressing the latter is consistent with a medical model. Our results suggest that, at the very least, the effects of such interventions should be compared. It is now being seriously questioned
      • Katalinic O.M.
      • Harvey L.A.
      • Herbert R.D.
      Effectiveness of stretch for the treatment and prevention of contractures in people with neurological conditions: a systematic review.
      whether medical therapies, such as stretching, improve a child's function, let alone their participation. The first randomized controlled trial in this field suggests that environmental adjustment for children with physical impairment is at least as effective (as judged by self-help skills and mobility) as conventional therapeutic interventions that aim to change the child.
      • Darrah J.
      • Law M.C.
      • Pollock N.
      • et al.
      Context therapy: a new intervention approach for children with cerebral palsy.
      • Law M.C.
      • Darrah J.
      • Pollock N.
      • et al.
      Focus on function: a cluster, randomized controlled trial comparing child- versus context-focused intervention for young children with cerebral palsy.

      Implications for Research

      The concepts of participation and environment, the instruments for measuring them, and the methods of modeling them are still being refined but already offer improved opportunities to understand which components of the environment most influence participation. To ensure an objective assessment of the relationship between participation and environment, it is essential that separate instruments are used to measure these concepts. Although we used structural equations to assess relationships between latent variables, some domains of participation and environment might be better if defined explicitly rather than representing them as latent variables. This would involve value judgments, which should ideally be made by parents and young people and would therefore have meaning to them in their daily lives.

      Study Strengths

      We have addressed recent recommendations
      • Noreau L.
      • Boschen K.
      Intersection of participation and environmental factors: a complex interactive process.
      regarding the investigation of the relationship between participation and environment: we undertook analyses based on domains, used multivariable models that included personal factors—such as pain and impairment—influencing participation, and used instruments that captured participation and environment separately. In using the ECEQ, we analyzed whether an item was available or not, hence avoiding incorporating aspects of participation. We modified the scoring of the Assessment of Life Habits; therefore, whether assistance was needed or not, it did not influence the participation score.
      The findings of the study are likely to be generally valid for children with CP, because we sampled from population-based registries of children with CP and included children with all levels of impairment. Furthermore, such children often have other associated impairments of learning, communication, and epilepsy, and therefore are exemplars of the wider population of disabled children.

      Study Limitations

      It is an intrinsic feature of structural equation modeling that different models are likely to fit the data
      • Kline R.B.
      Principles and practice of structural equation modeling.
      ; for example, some environmental domains were highly correlated and therefore it is possible that different domains could have generated equally valid models. We encountered statistical difficulties modeling some environmental domains (eg, the physical environment at home, as discussed in appendix 1). Thus, the use of formative (cause) indicators to measure environment should be considered, because some elements of environment may not reflect an underlying factor and might be better viewed as cumulatively defining an environmental domain.
      • Kline R.B.
      Principles and practice of structural equation modeling.
      • Whiteneck G.
      • Dijkers M.
      Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors.
      However, the statistically significant relationships between participation and environmental domains correspond to hypotheses that were stated prior to statistical analysis; and the multiple imputations generate confidence intervals that reflect the uncertainty because of missing data. Hence, we have confidence that the significant associations are unlikely to be chance findings.

      Conclusions

      While the UN conventions, ICF-CY, and social model of disability previously discussed emphasize the need to adjust the environment, the evidence that this might help was limited. Our study supports the view that environmental adjustment does indeed promote participation.
      • a
        Muthén L, Muthén B. Mplus. 6th ed. 1998. Muthén & Muthén, 3463 Stoner Ave, Los Angeles, CA 90066.

      Acknowledgments

      We thank the study's research associates—Kerry Anderson, BSc, Barbara Caravale, MD, Malin Carlsson, MD, Eva Lise Eriksen, BSc, PhD, Delphine Fenieys, PhD, Bettina Gehring, MD, Louise Gibson, MD, Heidi Kiecksee, BSc, Ann Madden, BSc, and Ondine Pez, PhD—for their enthusiasm and dedication in contacting families and collecting high quality data.

      Appendix 1. Further Details of Statistical Methods

      Variable Types

      The following variables were treated as ordered categorical variables: ECEQ responses (2 categories), Assessment of Life Habits responses (2 or 3 categories), levels of walking ability (5 categories), fine motor function (5 categories), intelligence quotient (3 categories), feeding ability (3 categories), seizures (5 categories), and communication ability (4 categories). Frequency and severity of pain were treated as continuous variables, because this resulted in a better model fit.

      Model Modifications

      Models were adjusted until the fit indices were satisfactory, by inspecting modification indices and omitting items or adding correlations as appropriate. The modification indices give the expected drop in chi-square if the parameter is freely estimated. Items associated with very high modification indices were considered for omission from the models; for all such items, responses for nearly all children were in 1 category and therefore the items contributed very little information to the model. Parameters with modification indices over 30 were considered for inclusion in the model only if they were pragmatically justified, for example correlation of the Assessment of Life Habits items: dressing and undressing upper half of body with dressing and undressing lower half of body, and if they helped to improve the model fit such that the RMSEA was ≤.05 and the CFI was >.95. These model modifications are subsequently described in detail.

      ECEQ: Physical Environment at Home

      When this domain was based on all relevant items (1 (enlarged rooms), 2 (adapted toilet), 3 (modified kitchen), 17 (walking aids), 18 (hoists), 19 (communication aids)), item 2 had a negative residual variance. We therefore omitted items 17 and 18, because they captured little information—walking aids (item 17) were available to almost all children who needed them and hoists (item 18) were needed by less than one third of the children. An alternative analysis, basing the measure of the physical environment at home on items 1, 3, 17, 18, and 19 yielded similar results.

      Assessment of Life Habits

      Item 22 (putting on and taking off his/her own aids) was omitted from the domain of personal care. This was the only discretionary item in this domain.
      Item 46 (maintaining a loving relationship with other members of family living at home) was omitted from the domain of relationships.

      Correlations Between Items and Factors

      The model assumed correlations between the latent factors, that is, between pain and impairment, pain and environment, impairment and environment, and environmental domains if more than 1 such domain was included.
      The following correlations were added to improve the fit of models, where lh* refers to Assessment of Life Habits items and eceq* refers to ECEQ items.
      Model of health hygiene × physical environment home: lh2 (getting in and out of bed) was correlated with walking ability;
      Model of personal care × physical environment home: lh6 (dressing and undressing upper half of body) was correlated with lh7 (dressing and undressing lower half of body);
      Model of home life × physical environment home: lh10 (entering and leaving home) was correlated with lh11 (moving around the home) and lh34 (moving about just outside the home);
      Model of school × attitudes of teachers and therapists: lh52, lh53, eceq30 (teachers/doctors listen to your views), eceq46 (child has school placement s/he needs) were correlated with the latent factor for impairment.

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