PROTOCOL: Personal assistance for adults (19-64) with physical impairments

Definition of 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). 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 adults (19-64) with physical impairments. Intellectual impairments and physical impairments affect activities and participation differently. Therefore, adults with both physical and intellectual impairments, children and older adults will be considered in other Cochrane and Campbell reviews.

Prevalence of impairments

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). in 2003, the European Year of People with Disabilities, a survey found that 16% of Europeans between 16 and 64 have a long-standing health problem or impairment and 5% of Europeans have a ‘very severe’ long-standing health problem or impairment (Dupré 2003), but variability in responses across nations suggested that people in different countries interpreted and responded to a standardised questionnaire differently (Dupré 2003).

As is likely to be true in any developed country, the incidence of impairment in America is highest among adults between 18 and 65 years, but the prevalence of impairment among working age adults is much lower than the rate among older adults (50% versus 17%; [CDC 2001a]). Though the working adult population is larger than the older adult population, most impairments are acquired with age. For example, the vast majority of Europeans with impairments or long standing health problems (82%) acquired their impairment after birth (Dupré 2003).

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). However, population estimates in the U.S. and other censuses do not usually indicate the prevalence of severe impairments. Among Americans over 18 years, arthritis and back problems are the most common types of impairments (18% and 17% respectively; [CDC 2001b]). Causes of severe limitations are less frequent, including head or spinal cord injury (1%), paralysis (0.8%) and missing limbs (0.7%;[CDC 2001b]). Americans who report difficulty with activities of daily living (8 million) represent only a quarter of those with some functional limitation (32 million; [CDC 2001b]).

About 2% of Americans between 18 and 65 years (3.5 million) report some difficulty with activities of daily living (CDC 2001b). About 0.3% of working age adults (0.5 million) report difficulty eating (CDC 2001b); people who have difficulty eating are most likely require assistance and to have severe impairments (LaPlante 2002).

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.

Consequences

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 activities may be limited for adults with physical impairments when physical, social and attitudinal environments restrict their involvement in activities in which they wish to take part. For example, about 11% of older working age Americans are unable to work and about 7% experience limitations in their work (Kaye 1996). Roughly 3% of younger working age Americans are unable to work and about 3.5% are limited in the amount or kind of work they can perform (Kaye 1996). Limited participation in activities may have negative impacts on other areas, including mental and physical health.

In the U.S., more than 13.2 million adults living in the community received assistance in activities of daily living (ADLs) or instrumental activities of daily living (IADLs) in 1996. Of those, most received help with only IADLs (which include items like using a telephone, preparing meals, and grocery shopping) and received 16.3 hours of assistance per week; people requiring assistance with ADLs received 57 hours of help per week. Most recipients are female (65%) and less than a quarter receive paid assistance (LaPlante 2002). More than 20 billion hours of assistance are provided each year in the U.S., estimated to be worth $200 billion at 1996 prices (LaPlante 2002).

Interventions

Increased participation (inclusion in activities of daily life) may have positive effects on social functioning, happiness and physical health.

There are many ways to increase participation by adults with physical impairments. For example, building codes may require that people who use assistive devices can access offices and shopping malls. Clinicians and policymakers can work together to influence policy, discourse, and planning and to apply the social model in support of adults with physical impairments (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, physical therapy, education, and human support help people control their lives appropriately and engage in normal activities.

Personal assistance

Previous studies

Compared to other interventions, personal assistance may have unique benefits and potential drawbacks. Assistants may help people achieve more professionally, but having a personal assistant at work could be stigmatising. People with physical impairments might be relieved to have assistants, but assistants might interfere with family life and with users’ need for privacy. Compared to other ways of compensating for particular activity limitations, personal assistance may create unnecessary dependencies for some people. People may prefer to use assistive devices to complete activities of daily living rather than receive help in performing those tasks (Verbrugge 1997).

Even if personal assistance is clearly preferred over other services by many working adults with physical impairments, groups that are underrepresented in the public discourse about the rights of people with impairments (e.g., people in rural areas and people with difficulties communicating) 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 people who have difficulty finding an assistant, administering their services, negotiating or giving instructions (Pijl 2000). ‘Many people requiring personal assistance in one form or another do not want and/or are incapable of assuming complete control over service delivery’ (Nosek 1991).

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). Similarly, partners of adults with impairments might have mixed roles. 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). There have been non-systematic reviews of personal assistance services for people with different types of impairments, for example spinal cord injury (Hagglund 2004). 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 highlighted the need for a sensitive and exhaustive search for trials and a systematic synthesis of existing studies (Socialstyrelsen 2005).

Types of studies

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.

Types of participants

Adults (19-64) living in the community who require assistance to perform tasks of daily living (bathing, eating, getting around, etc.) due to permanent physical impairments.

With the exception of people living in student accommodation (e.g. residential schools or dormitories), adults living outside their own homes (e.g., in private or public institutions for people with impairments) will be excluded.

Adults with intellectual impairments will be excluded because these impairments affect activities and participation differently.

Types of interventions

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, less intense interventions (e.g. homemaker services providing an hour a day of help), informal care (which might be delivered by partners or other family members), institutionalisation, service housing (cluster housing), on-demand services, night patrols, 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.

Types of outcome measures

Primary outcomes will include:

1) Global quality of life, both (a) generic measures (e.g., the Short-Form Health Survey (SF-36; Ware 1992) and (b) impairment specific measures. Generic QOL measured are often appropriate for people with physical impairments (Meyers 2000).

2) User satisfaction. For example, measures might include the Client Satisfaction Inventory (McMurtry 2000).

3) Participation, including sense of control, employment, social life, sexual participation, ability to engage in spontaneous activities, time outside the home, and mobility. For example, measures might include the Craig Handicap Assessment and Reporting Technique (Whiteneck 1992).

Secondary outcomes will include:

1) Unmet needs, particularly the inability to perform activities of daily living.

2) Health outcomes, including direct measures of muscle strength, disease, injuries, abuse or pain and indirect measures such as hospitalisation, emergency room visits or need for institutionalisation.

3) Functional status measured using either generic or impairment-specific tools. Measures might include the FIM Instrument (Heinemann 1993; Linacre 1994), Barthel Index (Mahoney 1965) or the Patient Evaluation and Conference System (Harvey 1981).

4) Psychological outcomes, including psychological disorders (e.g., anxiety and depression), self-harm, suicide and substance abuse. Generic measures are likely to be appropriate for adults with physical impairments (Meyers 2000) and might include the Beck Depression Inventory (Beck 1961) or the STAI (Spielberger 1983).

5) Impact on others, including family (spousal and parental) employment, satisfaction, and quality of family life.

6) Direct and indirect costs, both immediate and long-term.

Outcome intervals

To account for 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.

I. Electronic search

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:

II. Personal communications

Appropriate government departments, non-governmental organisations, non-profit groups, advocacy groups, user groups, and experts in the field will be contacted and listed in an appendix to the review. These approaches and any replies will be documented by the authors. Additionally, impairment-oriented email lists (list-servs) will be sent a letter requesting assistance in locating studies.

The reviewers will contact authors of all included and excluded studies to request details of ongoing and unpublished studies.

III. Reference lists

Reference lists from previous reviews and from all included and excluded studies will be searched.

Relevant websites, including those maintained by users, governments, other agencies, and academics will be searched.

Trial selection strategy

From the resultant list of articles, outcome evaluations about people with impairments will be identified through electronic and hand searches. Two authors (EMW and PM) will check titles for relevance. When a title appears potentially relevant, both authors will examine the abstract. If one author feels an abstract might be relevant, the full article will be obtained. Two authors will examine the remaining papers to determine eligibility. Study authors will be contacted if further information could resolve initial disagreements about inclusion. Remaining disagreements will be discussed with the third reviewer (JD). If a consensus cannot be reached, the Coordinating Editor of the CDPLPG will be consulted. A flowchart of the process of trial selection will be made in accordance with the QUORUM statement (Moher 1999).

Data management

Data synthesis

Subgroup analyses

Large numbers of subgroups may lead to misleading conclusions and are best kept to a minimum (Counsell 1994; Oxman 1992; Yusuf 1991). If possible, this review will include separate effect estimates for the following subgroups:

1) Organisation of services

Personal assistance organised by users (e.g., through direct payment schemes) will be considered apart from personal assistance organised and managed by others (e.g., social workers or government agencies).

2) Place of residence

The review will report separate effects for people living with their families and people living alone separately.

3) Acquisition of impairment

Separate effects will be reported for people who had impairments from birth, who have long-standing impairments, and who recently acquired impairments.

4) Amount of assistance

The number of hours of assistance received per week is related to user needs, which are determined by social context, the availability of other services, severity of impairments, etc. Separate effect estimates will be reported for users receiving different levels of assistance (e.g., 20-50 hours, 51-80 hours, more than 80 hours).

Assessment of bias

Sensitivity analyses will investigate the influence of lower quality studies (i.e., those rated C and D on allocation concealment) on the results of the review.

To investigate the possibility of bias, including publication bias, funnel plots will be drawn (Deeks 2005; Egger 1997; Sterne 2001). In the event of asymmetry, the reviewers will seek input from methodologists, including the Cochrane and Campbell Collaboration Methods Groups, on appropriate analyses.

Graphs

When meta-analyses are performed, data will be entered into RevMan in such a way that the area to the left of the line of no effect indicates a favourable outcome for personal assistance.