| Consumer-Directed Personal Assistance Schemes |
|Doty et al. (1996)||To appraise relationships between perceived control and service satisfaction among SDC recipients||Cross-sectional survey|| |
Participants recruited from Maryland, Michigan and Texas
N = 866 interviewees participating in SDC
All participants aged 65 years and over
● Greater perceived control over services was associated with higher levels of satisfaction with personal care workers
● Higher perceived control over prior acquaintance with their personal worker, scheduling and supervising personal care and signing timesheets/authorising pay cheques were predictors of service satisfaction.
● Findings indicate that SDC is related to control and service satisfaction for older people.
● Older people should be provided with options for greater control over selecting, supervising and paying personal care workers.
|Feinberg & Whitlatch (1998)||To compare carer satisfaction (SDC and agency-directed care) in-home respite services for people with cognitive impairment||Cross-sectional postal survey|| |
Participants recruited from SDC and agency-directed services in California
n = 52 caregivers (Agency-directed services)
Caregivers aged on average in their late 50s (range 22–96 years)
● Across both groups, carers reporting more choice or control scored higher on satisfaction
● Caregivers selecting and hiring in-home respite staff within the SDC programme reported better service satisfaction than those using agency-directed services due to enhanced control over scheduling respite workers
● Although all age groups reported good preference and satisfaction with SDC, not all caregivers expressed a preference for SDC
● Agencies need to offer both SDC and agency-directed options for caregivers receiving in-home respite.
Benjamin & Matthias (2001)
Matthias & Benjamin (2003)
|To compare service preferences, satisfaction and sense of security for people participating in consumer-directed care (CDC) and agency-directed care||Cross-sectional quantitative phone survey|| |
Participants recruited from Californian personal assistant services
n = 511 CDC (53.6% aged 65 and over)
n = 574 (50% aged 65 and over) agency-directed group
● Older participants (>75 years) reported:Some preference for CDC, however, less than younger peopleLess satisfaction with CDC when compared with younger peopleFewer choices in decision-making about services when compared with younger peopleFewer unmet needs (activities of daily living) than younger people.
● Around two-thirds of older participants (68.5%) hired family members or friends (vs 78.8% younger people)
● Older CDC participants were somewhat more likely to hire family members than friends to provide home support
● Some older people preferred CDC and may benefit from these models.
● Older people have less access to support from family and friends than younger participants: hence, programme providers need to build compensatory features and safeguards into their SDC models.
● Older elders (aged 75+) tend to be more passive and less empowered by CDC: programme features need to reflect changing needs and preferences in older age.
|Young & Sikma (2003)||To appraise consumer satisfaction with SDC||Cross-sectional–phone survey|| |
Participants recruited from Washington state SDC programme.
N = 125 consumers (mean age 52 years, range 20–87 years)
|● Participants reported high satisfaction with SDC indicating improved autonomy, self-determination and choice for these people||● SDC is acceptable to older adults and should be considered as an option for people of all ages.||C|
|Hagglund et al. (2004)||To compare service satisfaction ratings between participants in SDC and agency-directed services||Cross-sectional face-to-face interviews|| |
Participants recruited from Missouri state personal assistance services
n = 61 SDC; n = 53 agency-directed care consumers.
Average 48 years (sample included older adults in early 60s).
● No significant differences between groups on unmet needs
● SDC participants reported significantly better service satisfaction, consumer choice, sense of empowerment and quality of life than those using agency-directed services.
|● Results suggest potential benefits of SDC for all age groups including older people and support implementation of SDC as an option for those requiring personal assistance services||B−|
|Wiener et al. (2007)||To compare service satisfaction ratings between participants in SDC and agency-directed services||Cross-sectional telephone survey|| |
Participants recruited from Washington state personal assistance services.
N = 513 (34%–38% aged 65 or more)
n = 285 agency-directed group
● No significant differences on service satisfaction between those receiving SDC and agency-directed care
● People 65 and older participating in SDC rated satisfaction with services higher than older people participating in agency-directed care
● Elderly Asian people indicated greater preference for SDC than other ethnic groups.
|● Older adults participating in SDC reported better service satisfaction than their counterparts receiving agency-directed care. SDC is acceptable for older people and should be considered as a service option.||B|
|Grossman et al. (2007)||To compare service satisfaction ratings between participants in SDC and agency-directed services||Semi-structured interview by telephone|| |
Participants of personal assistance services recruited from nine US states
n = 14 SDC, n = 10 agency-directed services
● Participants reported satisfaction with the quality of personal assistance services; however, they also reported poor care experiences and unmet care needs in the past related to inadequate and poor quality of work by personal carers and insufficient hours of assistance by personal carers.
● Participants expressed preference for SDC in particular due to improved reliability of personal assistants.
● Findings emphasise the importance of quality of care and reliability of personal care assistants
● SDC models may be related to improved service quality
| Cash & Counselling |
|Mahoney et al. (2002)||To ascertain older adults preferences for self-directed care||Telephone survey|| |
Participants using Medicaid personal care services in New Jersey were recruited
n = 286 aged under 65 yearsn = 391 aged 65 years or older (including 1 who didn't know the age, and 5 who refused to respond to the question)
● Many but not all consumers are interested in the cash option: Younger consumers were significantly more interested in the cash option than older consumers (65 years or older) Almost one-third of older consumers were interested in the cash option
● Predictors of interest in the cash option included: A desire to be more involved in careWillingness to perform employer tasksDissatisfaction with current service.
● Education/information materials need to be simple and straightforward
● The cash option should be one of a number of choices
● Support with decision-making may be required.
|Sciegaj et al. (2004)||To ascertain older adults' preferences for C&C from African, Chinese, Latino & Anglo American cohorts||Cross-sectional survey|| |
Older people from varying ethnic groups receiving personal care were recruited.
N = 731 (mean age 77.6 years)
● 71% of participants selected traditional care management over SDC
● There were no clear between-groups patterns of preferences for increased control over services.
|● Older adults need flexibility and a range of options allowing greater control in some areas of services but not necessarily all||B−|
| ||To appraise predictors of participation||Cross-sectional survey|| |
People using Medicaid-funded personal care services in Arkansas, New Jersey and Florida were recruited.
Survey respondents who agreed to participate in the evaluation
Arkansas (n = 953 agreed, n = 585 declined)
New Jersey (n = 950 agreed, n = 1735 declined)
Florida (n = 1877 agreed, n = 2792 declined).
Included older people aged 60 years and over
● Predictors of participation: Older adults with higher personal care costs (>US$300.00)
Older adults already using personal care service when enrolment began
● Predictors of non-participation: Older adults in their last year or two of life
● Most frequently noted reasons for agreeing to participate: Greater control over hiringPayment for family/friends Care provision at more convenient timesBetter or more careMost frequently noted reasons for declining participation: Satisfaction with current careConcern that the cash allowance would not meet care needs
● People with larger budgets and those already using personal care services were more likely to want greater control over their care arrangements
● People experiencing dissatisfaction with existing services were more interested in participating in C&C
|Simon-Rusinowitz et al. (2005)||To explore consumer preferences for a cash option within C&C||Focus groups|| |
Current users of Medicaid personal assistance services were recruited.
27 focus groups with a total of n = 216 people including older adults 65 years and over
● Some people considered that the potential for increased control over service was appealing and welcomed SDC options.
● Some participants expressed scepticism for the proposed cash option.
● Older adults were generally more satisfied with existing personal assistant service arrangements than younger adults.
● Elders had less interest in the cash option compared with younger adults.
|● Good support for consumers, e.g. training and assistance in administrative and accounting activities may encourage peoples' interest in self-directed care.||B−|
|Brown et al. (2007); Foster et al. (2005b)||To compare outcomes following participation in SDC and agency-directed care|| |
Telephone survey 9 months post model implementation
Survey 10 months post model implementation
Recruited from the number of known eligible people:
Arkansas (n = 556 adults, n = 1452 elderly people).
New Jersey (n = 817 adults, n = 938 elderly people).
Florida (n = 1002 children, n = 914 adults, n = 904 elderly people).
Arkansas (n = 1433 adults)
Florida (n = 1193 adults, n = 829 children)
●Those who participated in C&C reported significantly better satisfaction with service and having their needs met than participants in agency-directed care
● Carers in the C&C model reported significantly better service satisfaction than those receiving agency-directed care
● Carers in the C&C model reported significantly greater life satisfaction than those receiving agency-directed care.
|● Findings suggest that C&C models may assist older people and younger adults with disabilities to remain in the community for longer and with the support of a happier caregiver.||B−|
| Individual budgets |
|Glendinning et al. (2008)||To compare preferences and satisfaction for participants in SDC and agency-directed care|| |
6 months post implementation of IB programme comparing IB with agency-directed care Interviews
2–3 months post implementation of IB
Current users of personal assistance services in the United Kingdom were recruited.
n = 449 agency-directed care
28% of sample included older people–average age of 81 years
n = 130 people receiving IB including older adults
● Older people reported less interest in self-direction over planning and managing their own support, and directly employing support workers
● Those who participated in IB reported feeling a greater sense of control over service provision and better social care outcomes. Interviews
● Most people reported that they did not have a choice of who assisted them to develop their support plan of care and used their care co-ordinator or social worker.
● The majority of these people reported being satisfied with these arrangements
● Some IB participants did develop their support plan on their own or with family/friends
● Many of these people experienced difficulty accessing information regarding service costs and recruitment of personal assistance/selection of a care agency.
● Findings support the potential benefits for participants of SDC programmes regarding improved service satisfaction and sense of control over service provision. Mixed preferences of older people indicate that service providers should offer a range of options.
● Support/advocacy from care co-ordinators/social workers should be an option in SDC
|Glendinning et al. (2009)||To ascertain satisfaction ratings of carers|| |
Structured & semi-structured interviews 1–10 months after interview with service users
Current carers of those using personal assistance services in the United Kingdom were recruited.
N = 163 carers participated
n = 139 structured interviews n = 24 semi-structured interviews
26% of carers participating in the structured interview were supporting older service users
● Only a minority of carers received any payment from service users' Individual Budgets.
● Carers participating in the IB programme spent more time with the service user than those receiving agency-directed care.
● Carers were more involved in the care plan development under IB.
● Carers participating in the B programme reported positive effects on their quality of life, social care outcomes, psychological well-being
● Service users' involvement in support and care planning was an important predictor of carer service satisfaction in the IB programmes.
● Older people appreciated holistic, family-based IB approach that took account of their roles.
● Findings support the potential benefits for carers (quality of life, social care outcomes, psychological well-being) supporting people using SDC programmes.
● Carers should be supported to be involved in service planning
● However, cash-for-care schemes do not automatically reduce the overall caregiver burden. Carer burden is also related to available hours of paid care assistance.
|Newbronner et al. (2011)||To ascertain satisfaction and preferences of SDC users and carers|| |
semi-structured interviews and focus groups conducted 3–5 months after implementation
Current carers of those using personal assistance services in 5 of the 13 pilot sites in the United Kingdom were recruited.
N = 69 mental health, older people and carers
n = 29 older people using SDC n = 14 carers of older people using SDC
11 participated in focus groups
58 were interviewed individually.
● Older people saw SDC as an opportunity to improve the quality of care and to improve the fit between services delivered, needs, preferences and family life.
● Carers highlighted the ability to obtain a greater continuity of care.
● In contrast to mental health SDC users, older people focused much more on care provision.
● Older people and carers felt that peer support or a ‘buddy’ system would be beneficial.
● The most important concerns identified by older people and carers were managing money, keeping records, being clear about what the money could be spent on and coping with paper work.
● Ongoing professional support at all stages of SDC is quintessential for successful outcomes.
● Need for structured contingency planning and risk assessment.
● Findings support a potential benefit for older people and their carers if supported well by social care professionals.
● Older people perceive the potential of SDC in different terms than mental health or disability users and tend to focus more on service provision rather than the fostering of independent living.
● Older people require more support throughout the SDC process and would find beneficial the support of peers.
● A systematic contingency plan and risk assessment process involving participants is likely to improve SDC outcomes for older people.