Manual Ability Classification System (MACS): development, evaluation and applicability

The ability to use our hands affects how we carry out almost all daily activities. Children with cerebral palsy (CP) have varying degrees of difficulties using their hands, ranging from minor clumsiness to major problems with any voluntary movements. There has not been any standardized, reliable method available for describing how children with CP use their hands. The aims of this thesis were to develop a system to classify hand function among children and adolescents with cerebral palsy, to evaluate the validity and reliability of the results, and to investigate whether the use of this classification system could increase knowledge about the ability of these children to use their hands, and how this correlates with self-sufficiency in daily activities. Study I describes the development of the Manual Ability Classification System (MACS). The central concept “manual ability,” is defined as the ability to handle objects in daily activities. The classification system consists of five levels. The MACS levels are based on the self-initiated ability of the children/adolescents to handle objects in their daily environment, i.e. when engaged in activities such as eating, dressing, playing, or doing schoolwork. The criteria for the different levels also include descriptions of the need for help or adaptations. The MACS is described in a brochure available on the Internet (www.macs.nu). The validity of the MACS content and concept have been evaluated using different methods and from various perspectives in each of the four studies in the thesis. This was accomplished by interviewing parents of children with CP, occupational therapists and physical therapists, and other experts in the field (Studies I and II). In addition, the correlation between MACS and other instruments of hand function was examined, using a questionnaire to measure the degree of difficulty children have using their hands in daily activities (ABILHAND-Kids), as well as a test of manual dexterity (Box and Block Test) (Study III). MACS was also compared with a classification of gross motor function (Gross Motor Function Classification System, GMFCS) (Studies I and IV). The outcome of MACS was then compared with a measure of independence of performance of daily activities (Pediatric Evaluation of Disability Inventory, PEDI) (Study IV). The reliability between different observers (two therapists, or one therapist and a parent, respectively) was reported in Study I. The overall results show that both parents and therapists found MACS to be a meaningful method of describing how children handle objects in daily life (Study I and II). The comparison between MACS and other instruments, ABILHAND-Kids and the Box and Block Test, showed a strong correlation (rs = -0.88, p < 0.05 and rs = -0.81, p < 0.05) among the different assessment methods, even though they describe different aspects of hand function. By linking the meaningful concepts of the instruments to categories of the International Classification of Functioning, Disability and Health (child and youth version) (ICF-CY), it was shown that the instruments cover various aspects of activity and participation within ICF-CY. MACS provided a significantly broader representation of activity and participation (linking to seven chapters) than the other  two instruments (linking to two and one chapters, respectively) (Study III). A high correlation was also found between MACS and GMFCS (rs = 0.77, p < 0.05) (Study IV). Nevertheless, only half of the children were classified into analogous levels of MACS and GMFCS indicating the complementary nature of the instruments. Interrater reliability for MACS was studied in two ways: in part by having two therapists classify 168 children, and in part by having both parent and therapists classify 25 children. In both situations, interrater reliability was excellent (intraclass correlation coefficient 0.98 and 0.96, respectively) (Study I). Study IV investigated 195 children aged 3–15 years with different types of CP, using the PEDI functional skill scale for self-care and mobility. The results were compared to the children’s MACS and GMFCS levels. Stepwise multiple regression analysis verified that MACS was the strongest predictor of self-care (66%), while the GMFCS was the strongest predictor of mobility (76%). Moreover, children in MACS levels I and II demonstrated an age-related increase of skills, achieving complete or almost complete self-sufficiency in self-care, albeit at a later point than children without disabilities. Children with more severely affected hand function, MACS levels III–V, did not achieve self-sufficiency, and no age-related increase of self-care skills was observed. A similar picture was seen with regard to mobility based on GMFCS levels. In summary, the studies in this thesis show that MACS is a classification system that provides a valid and reliable functional description of manual ability in children and adolescents with CP

Elusive Participation – Social Workers’ Experience of the Participation of Children with Disabilities in LSS Assessments

The aim of this study was to gain a deeper understanding of Swedish social workers’ experience of disabled children’s participation, to discover in what ways their knowledge about impairment and disability, combined with legal literacy and local context influence children’s participation in formal meetings and decision making. Seven focus-group interviews were conducted with 35 municipal social workers from communities in different parts of Sweden. The phenomenological analysis resulted in the overarching theme of elusive participation, in which participation was described as difficult to grasp both in relation to what was supposed to be achieved and what it was meant to result in. Elusive participation entailed a discrepancy between policy and practice, norms and perception of normality, conflicting perspectives and needs, judgment of children’s abilities. These findings underline the importance of creating safe spaces in which social workers have the opportunity for critical reflections and shared discussions about social work practice

Assessing the Tool-Use Learning Process in Persons with Profound Intellectual and Multiple Disabilities

The aim of the study was to explore inter-rater reliability and rater experiences of applying the universal instrument Assessment of Learning Process (ALP) with persons with profound intellectual and multiple disabilities. The study used a mixed-methods design. Inter-rater reliability was tested by eight clinical raters who assessed 23 video clips of people learning to use a powered AKKA mobility platform with a line-follower system. The raters were four occupational therapists, two special education teachers, and two speech-language therapists. The qualitative Think-aloud method explored three of the raters experiences of applying the ALP instrument. The inter-rater reliability test of the universal ALP instrument showed a moderate linear weighted kappa value (0.45). All eight raters’ estimated the degree of difficulty or confidence for each assessment. Content analysis of Think-aloud data elucidated three of the raters experiences of observing performance characteristics and interpreting tool-use understanding. The reported inter-rater reliability of the universal ALP instrument can be considered acceptable for an observational study involving persons with profound intellectual and multiple disabilities. Thereby, the results suggest that the ALP can be applied to this population. This is important as assessing a person’s phase in the learning process guides the choice of ALP-facilitating strategies supporting progress in tool-use learning, which in turn may expand a person’s activity repertoire and participation

Evidence and evidence gaps in assessments and interventions in areas related to social work research and practice : an overview of four evidence maps

This overview of four evidence maps is based on systematic reviews of assessment and interventions in social work practice. The aim was to investigate the evidence and evidence gaps within four important areas for social work research and practice. Descriptive data on search strategies and domains were collected from four evidence maps, on Social Assistance, Substance Dependence, Care for older adults respectively for persons with disabilities. The scientific quality and scientific evidence were assessed. Key findings were summarised by analyzing and discussing common and specific elements in the evidence maps. The overview was undertaken in close collaboration between researchers with expertise in the field and a government agency. The overview identified both evidence and evidence gaps with respect to effects and experiences of interventions and assessment methods in four evidence maps. Evidence maps provide a comprehensive picture of the state of social services research and can thereby be of use to both researchers and practitioners, and in the production of evidence based social work