PROTOCOL: Personal assistance for children and adolescents (0‐18) with both physical and intellectual impairments

The International Classification of Impairments, Activities, and Participation (ICIDH-2) refers to impairment as loss or abnormalities at the level of body, body part or organ. People may have difficulty performing particular activities as a result of impairments, and a person's participation in education, social life, work, and other areas may be limited as a result of interactions among impairments, activities, and environment (WHO 2003). Though the ICIDH-2 refers to adults, except with reference to studies using specific definitions of other terms, this review follows the classification in ICIDH-2, which does not include the terms disability or handicap. This review will include children and adolescents with both physical impairments and intellectual impairments, which include learning impairments (e.g., Down's syndrome, global developmental delay, or pervasive developmental disorder), learning disability (also called ‘intellectual disability’ or ‘mental retardation’) and acquired brain injuries. Intellectual impairments and physical impairments affect activities and participation differently. Therefore, young people with intellectual impairments only or physical impairments only will be considered in other Cochrane and Campbell reviews, as will working-age adults and older adults. Around the world, about six hundred million people have impairments (UN 1990), most of whom live in the developing world. Previous reviews have identified inconsistencies in the measurement of impairments and activity limitations (UN 1990) and cross-national estimates of impairments and activity limitations in childhood and adolescence are even more variable than national estimates. The prevalence of intellectual impairments is difficult to quantify due to problems in diagnosis and classification. Most children and adolescents with intellectual impairments have mild to moderate impairments. Relatively few have ‘profound’ impairments (DSM-IV R). Over five million (10.6%) American children and adolescents experience a limitation in learning ability; respectively, about 4.0% and 3.2% have moderate and severe limitations (Hogan 1997). Gross rates of impairments in the United States (U.S.) have increased substantially in recent decades as a result of an aging population that is living longer and, more recently, as a result of higher reported levels of impairments among children and young adults (Kaye 1996). Recent increases in the prevalence of impairments among children and adolescents may be a result of changes in medical care. For example, very low birthweight babies are more likely than ever to survive (Alberman 1991; Allen 1993; Doyle 1995). These children are at high risk of both physical impairments and intellectual impairments (Middle 1996; Williamson 1983; Wilson-Costello 2005). Over six million (12.3%) American children and adolescents experience some type of functional limitation (as defined by (Hogan 1997)). Of the four million American children and adolescents who experience one serious functional limitation, about half experience one or more other functional limitations. About one million American children and adolescents experience serious limitations in two or more areas (Hogan 1997). Impairments are more prevalent in boys than in girls (Newacheck 2004) and more prevalent in low-income families than in high-income families (Newacheck 2004; UN 1990). Of non-institutionalised children and adolescents aged 5-17, 1.3% experience limitations in mobility and about .2% experience a moderate or severe limitation in mobility. Respectively, .9% and .5% experience limitations in self care; 5.5% and 1.2% experience limitations in communication (Hogan 1997). About 3.2% of American children attend special schools or classes (Wenger 1995). As far as possible, this review uses internationally accepted definitions of impairments and refers to impacts that are likely to occur across cultures. However, many epidemiological studies have been conducted in the United States and Western Europe. Readers should consider the applicability of epidemiological data to other settings. A discourse of disability ethics has evolved to discuss concepts of independence, defined not as people with disabilities “doing everything” for themselves, but as having maximum control over how help is provided (Morris 2001). Proponents of the social model of disability regard activity restrictions as caused by societal and structural barriers and stress the need for their removal (Abberley 1987; Oliver 1990). In addition to structural and environmental changes (e.g., making buildings accessible), the social model emphasises changes in public attitudes towards impairments to encourage increased participation and improved self-esteem. Participation in age-appropriate activities may be limited for children and adolescents with impairments when physical, social and attitudinal environments restrict their involvement (Hammal 2004; Mihaylov 2004). Impairments in children are related to societal limitation, and different types of impairments contribute uniquely to societal limitations (Hogan et al., 1997). Impairments may affect the quality of life, health, development, and family functioning of children and adolescents (Lavigne 1993; Neely-Barnes 2004; Pit-Ten 2002; Varni 2005). Limited participation in activities may have negative impacts on the mental and physical functioning of children and adolescents and may lead to emotional and behavioural problems. Children and adolescents with intellectual and physical impairments are at increased risk for mental health problems; however, most children and adolescents who might benefit from psychological services do not receive them (Witt 2001). Comorbid problems can also impact carers. For example, challenging behaviour often occurs in the context of learning impairments and mental health problems (Moss 2000). Parents and siblings of children with impairments are at risk for psychological problems (Rossiter 2001; Sharpe 2002; Thyen 1998). Total healthcare costs for children and adolescents with impairments may be four times greater than for those without impairments (Newacheck 2004). However, children and adolescents with impairments require varying degrees of support. For example, in one large study, ‘those in the upper decile of the expenditure distribution accounted for 65% of all charges’. Costs born by families of children and adolescents with the most severe impairments were similarly high; out-of-pocket healthcare expenses (i.e. those not reimbursed by insurance or a health service) for the top 10% of the distribution accounted for 85% of all out of pocket expenses (Newacheck 2004). All children and adolescents require some level of care. However, children and adolescents with extensive impairments may require many hours of assistance every day in addition to the normal assistance required by their peers. Consequently, family members (notably mothers) may withdraw from work and social life. Caring for a child with severe physical impairments can put great financial and emotional stress on parents and families (Neely-Barnes 2004; Witt 2001). In the U.S., parents of children with impairments are less likely to have attended college and more likely to be single and poor (Hogan 1997). The stress of caring for children with impairments may have negative impacts on parents, but some problems associated with impairments may increase the risk of impairment. For example, poor children are less likely than their peers to receive preventive healthcare (Newacheck 1988) and depressed mothers are less likely than other mothers to use injury prevention strategies like car seats and electrical plug covers (McLennan 2000). Furthermore, some evidence suggests that the development of intellectual impairments is affected by sociodemographic factors (Resnick 1998). Low birthweight black babies are more likely than white babies to survive (Morse 2006), which might affect the relative prevalence of impairments in different racial groups; however, ‘controlling for socioeconomic differences and family structure, black children are no more at risk of functional limitation than whites’ (Hogan 1997). Since the causes and consequences of impairments are often difficult to disentangle, retrospective studies are difficult to interpret. Increased participation (inclusion in activities of daily life) may have positive effects on the social functioning, development, mental and physical health of children and adolescents. There are many ways to increase participation by children and adolescents with impairments. For example, school schedules may be designed such that children and adolescents with impairments can engage in age-appropriate activities with their peers. Clinicians and policymakers can work together to influence policy, discourse, and planning and to apply the social model in support of children and their families (Colver 2005). However, broad interventions may not be sufficient to meet all needs. People with severe impairments require interventions tailored to their unique impairments, lifestyles, living arrangements, etc. Assistive devices, skills training, physical therapy, education, and human support help young people control their lives appropriately and engage in normal activities. Personal assistance is support given to children and adolescents with impairments living in normal housing (e.g., family homes or school accommodation) to enable them to participate in mainstream activities in various settings. Personal assistance is directed by users and their representatives and is designed to promote independence and to reduce strain on families. Assistants might help with bathing, dressing, moving around during the day, shopping, etc. Personal assistance is provided by non-professionals; it may aim to improve mental and physical health, but it differs from services by professional healthcare providers (e.g., nurses) with whom users have very different relationships. Personal assistance may be purchased by governments, insurance providers, or individuals. It may be provided directly or indirectly through payments or vouchers. Personal assistance differs from voluntary or charitable services over which users do not have the same control. It also differs from respite care, which is temporary and aims to help carers rather than children and adolescents with impairments. Personal assistance is designed for people whose participation in many normal activities would be impossible without help. While user needs should be assessed periodically, personal assistance is designed for people with permanent impairments. For example, the needs of a person with a recently acquired impairment might be different from the needs of a person who has had an impairment from birth and the needs of both might change; personal assistance would be designed to meet their unique needs and would develop with them. In this way, it differs from rehabilitative services and from services provided for fixed periods of time. Receipt of personal assistance is dependent on the amount of help required by an individual. For example, personal assistance in Nordic countries is generally provided to people requiring at least 20 hours of help per week, though most users have severe impairments and both require and receive substantially more assistance. Some form of personal assistance is now available (often by statutory right) in all Nordic countries, most Western European countries, Australia, parts of Asia, Canada, and the U.S. Services in different countries for different users are called by different names, which often relate to legislative categories rather than types of interventions. Eligibility varies around the world. For example, countries that see services for adults as a ‘right’ may not be able or willing to provide comprehensive services for children and older adults. Services for people of different ages may be provided through different mechanisms. Rules about who may be a personal assistant also vary. For example, some countries allow users to employ family members (e.g., parents) while others do not. Differences in eligibility affect the number and types of people who receive support and these differences affect the amount and types of support individuals and their families receive. That is, the relative number of people receiving personal assistance and their characteristics vary across countries, insurance schemes, etc. Advocates of personal assistance argue that personal assistants should be chosen, trained and managed by users or their representatives. However, the organisation of services and the degree of user control varies around the world and may be affected by the administration of payments, employment laws, etc. Compared to other interventions, personal assistance may have unique benefits and potential drawbacks. Assistants may help children achieve more, but having a personal assistant could be stigmatising. Parents of children with impairments might be relieved to have assistants help care for their children, but assistants might interfere with family life and with users’ need for privacy, or with parents’ own needs to see themselves as adequate carers for their children. Compared to other ways of compensating for particular activity limitations, personal assistance may create unnecessary dependencies for some people. Even if personal assistance is clearly preferred over other services by working adults with physical impairments, groups that are underrepresented in the public discourse about the rights of people with impairments (e.g., children, people with intellectual impairments, and people in rural areas) may prefer other services, particularly since these groups may be more susceptible to abuse and less able to manage employees. Direct payments for personal assistance may not be ideal for children and families who have difficulty finding an assistant, administering services, negotiating or giving instructions (Pijl 2000). While many personal assistants are managed by users or their representatives, the nature of personal assistance can make it difficult to separate the roles that individuals play in supporting people with impairments. For example, Askheim identified one mother of a child with intellectual impairments in Norway who acted both as the manager of her child's payments and as a full-time personal assistant (Askheim 2003). Policies that permit different care arrangements may have substantially different impacts. As the personal assistance movement gained strength, Ratzka noted that ‘there has been surprisingly little in the way of policy evaluation. The work that has been done in this area is restricted to gathering descriptive statistics on number of hours provided by one type of service, number of consumers, staff, and expenditures’ (Ratzka 1986). Some research now suggests that personal assistance may meet otherwise unmet needs of people with impairments. Shortly after its introduction, a survey of direct payment recipients in the UK found that 40% had a need for additional hours of personal service while 80% of people receiving other services had a similar need (Zarb 1994). However, traditional reviews have failed to locate many evaluation studies and have not offered a definitive account of international research on personal assistance. A recent report by the Swedish National Board of Health and Welfare (Socialstyrelsen) highlighted the need for a sensitive and exhaustive search for trials and a systematic synthesis of existing studies (Socialstyrelsen 2005). To assess the effectiveness of personal assistance for children and adolescents (0-18) with both physical and intellectual impairments, and the impacts of personal assistance on families and carers, compared to other interventions. Randomised controlled trials, quasi-randomised controlled trials and nonrandomised controlled studies of personal assistance compared to other forms of support or to ‘no-intervention’ (which may include unpaid care) in which participants were prospectively assigned to study groups and in which control group outcomes were measured concurrently with intervention group outcomes. Children and adolescents (0-18) living in the community who require assistance to perform tasks of daily living (bathing, eating, getting around, etc.) and participate in normal activities due to permanent physical and intellectual impairments. With the exception of young people living in student accommodation (e.g. residential schools), young people living outside their own homes (e.g., in private or public institutions for people with impairments) will be excluded. Children and adolescents with physical impairments only and intellectual impairments only will be excluded because these impairments affect activities and participation differently. Personal assistance is paid individualised human support that is designed to promote participation of people with permanent impairments. In consultation with experts and the reference group, the reviewers sought to determine what minimal amount of assistance would could be offered and still follow the personal assistance model for this population. For inclusion in this review, personal assistance must have been delivered for at least 20 hours per week. Comparisons might include, either singly or in combination, family care, institutionalisation, on-demand services, escort services, and other alternatives to personal assistance. ‘No-treatment’ and ‘waiting list’ groups will be included even if other services received are no described. These will be treated as separate comparisons. Studies examining different forms of personal assistance (e.g., assistance organised by users compared to assistance organised by others) will be included in the review, though these comparisons will be discussed separately as the outcomes from such studies would not indicate the effectiveness of personal assistance relative to other interventions. Primary outcomes will include: 1) Global quality of life, both (a) generic measures (e.g., the Pediatric Quality of Life Inventory; Varni 2005) and (b) specific measures designed for people with particular impairments. Though well-validated measures for the general population will be considered, a review of global health measures found that ‘very few measures have been validated specifically for cognitively impaired respondents’ (Riemsma 2001) or for people with both physical and intellectual impairments. 2) User satisfaction. Direct reports will be preferred, though proxies might be used if users are unable to communicate. 3) Participation, including social activities, ability to participate in spontaneous activities, time outside the home, and mobility. Secondary outcomes will include: 1) Unmet needs, particularly the inability to perform activities of daily living. 2) Developmental outcomes, including cognitive milestones, acquisition of skills, and school attendance. 3) Health outcomes, including direct measures of muscle strength, disease, injuries, abuse or pain and indirect measures such as nutrition, emergency room visits or need for hospitalisation or institutionalisation. 4) Psychiatric outcomes, including self-harm, pica (eating non-food substances), and outwardly directed challenging behaviour. Measures might include items from the externalising scale of the Behavior Problem Inventory (Sturmey 1993). 5) Impact on others, including parental (maternal) employment, satisfaction, and quality of family life. For example, measures might include the Short-Form Health Survey (SF-36; (Ware 1992) or General Health Questionnaire (GHQ; (Counsell 1994). 6) Direct and indirect costs, both immediate and long-term. To account for normal development and the changing impacts of impairments, outcomes will be grouped by length of follow-up (e.g., 1-3 years, 4-6 years, 6+ years). The organisation of services is often a complicated task and new users or their representatives must train personal assistants. Outcomes measured during the first year of receiving personal assistance will be considered apart from outcomes measured after one or more years to account for this adjustment period, which may not be representative of personal assistance as a whole. As we anticipate many relevant documents will be unpublished, a three-part search strategy will be undertaken in order to maximise chances of capturing all relevant literature. Databases will be searched for published and unpublished studies. All electronic searches will be limited to research reported since 1980 because scoping for this project, including a review of relevant laws and policy documents and contacts with international experts, found that widespread personal assistance programmes began in the mid 1990s. Experts have noted that personal assistance was available in some form before the introduction of programmes in the 1990s, but they and the reviewers believe it is extremely unlikely that any relevant trials were conducted before 1980. No language restrictions will be imposed on any results from any search attempts, although most databases will be searched in English. Latin American and Caribbean Health Sciences Literature (LILACs) will be searched using Spanish and Portuguese terms and Scandinavian databases will be searched in appropriate languages. No filters based on methodology will be applied because test searches indicated that such filters might eliminate relevant studies. The authors worked with a reference group of users, clinicians, policymakers, and analysts (Jackson 2005) to develop this protocol and search strategy. The group recommended a highly sensitive search (one that will likely to capture all relevant reports) rather than a more specific one (a search that would identify fewer irrelevant papers). The following databases will be searched electronically: Cochrane Central Register of Controlled Trials (CENTRAL) MEDLINE CINAHL (Cumulative Index to Nursing and Allied Health Literature) EMBASE LILACs (Latin American and Caribbean Health Sciences Literature) ASSIA (Applied Social Science Index & Abstracts) BIDS (International Bibliography of the Social Sciences [IBSS] on Bath Information and Data Services [BIDS]) C2-SPECTR (The Campbell Collaboration's Social, Psychological, Educational and Trials A International The and Social Information search for Information on Literature in will be searched using the following of Personal Health of of direct direct in or or or or or or or paid or or of of of or or or or or or or or or or and or or or or to terms will be used to search other Scandinavian databases will be searched using terms or terms, on the service assistant user and experts in the will be and in an to the These and any will be by the will be a assistance in studies. The reviewers will authors of all included and excluded studies to of and unpublished studies. from reviews and from all included and excluded studies will be including those by users, governments, other and will be the of about people with impairments will be identified through electronic and authors and will for a both authors will the one an might be the will be authors will the to determine authors will be if could about will be discussed with the a be the of the will be A of the of will be in with the Data will be conducted by two authors and using a data more than two are included in the same all will be described. The following data will be for all 1) including types and of impairments, social and 2) characteristics and 3) interventions 4) measures The following data will be for all 1) including groups and the differences the interventions and 2) reviewers and will included study to a quality in the Cochrane 2005) adequate of the example, by or use of about the was example, the of is not that the was not example, number or such as of or not Studies in all quality categories will be considered for inclusion in the review and Though nonrandomised studies to the same as trials, nonrandomised studies are most likely to at different about an effects when groups are different at the 2003). Therefore, the and the of participants will be in the of studies to identify differences intervention and control groups that may have at for the quality of controlled trials have not been are not well-validated and are to of quality in systematic reviews 1995). evidence that should generally not be used to identify trials of low quality or high quality in a given systematic the relevant should be identified a and assessed 2001). The following will be considered in the of 1) group or might it have been related to outcomes or the interventions 2) the services provided have been by other than the interventions 3) outcomes by other than the of including or the influence of on 4) the outcomes, measures and a and reported participants in their or 5) from including data and have the 2004; and 6) the measures validated for the reported directly by the user or through All measures for all will be reported in the two or more intervention groups are compared to an requiring that the reviewers a single intervention group for

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.