A multinational metasynthesis of research on

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Received: 29 December 2017 Revised: 8 June 2018 Accepted: 18 July 2018 DOI: 10.1111/hsc.12646

REVIEW ARTICLE

Questioning “choice”: A multinational metasynthesis of research on directly funded home‐care programs for older people Maggie FitzGerald Murphy1

| Christine Kelly2

1 Department of Political Science, Carleton University, Ottawa, Ontario, Canada

Abstract

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In many developed contexts, home‐care services have been overhauled with the in‐

Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada

tent of increasing control and flexibility for those using social and health services.

Correspondence Maggie FitzGerald Murphy, Department of Political Science, Carleton University, Ottawa, ON, Canada. Email: [email protected]

This change is associated with providing funds directly to individuals, and sometimes

Funding information Canadian Institutes of Health Research, Grant/Award Number: 148856; Health Research, Grant/Award Number: 148856

ment of care in contemporary times. In this qualitative metasynthesis, we consider 47

their families and supports, to arrange at home‐care assistance with the activities of daily living. Directly funded home‐care programs, or “direct funding” (DF), are not value‐neutral policy interventions, but complex and politicised tools for the enact‐ research articles published between 2009 and 2017 that explore various DF pro‐ grams for older persons in the United Kingdom, Australia, and the United States to identify core concepts in the literature. We find that choice emerges as a central concern. We then assess the literature to explore the questions: How does the exist‐ ing literature conceptualise choice, and the mechanisms through which choice is en‐ hanced, in DF programs for older persons? How is choice, and the benefit of choice to older service users, understood in relevant studies? We argue that the concept of “choice” manifests as a normative goal with presumed benefits among the studies reviewed. Particularly when discussing DF for older people, however, it is essential to consider which mechanisms improve care outcomes, rather than focusing on which mechanisms increase choice writ large. In the case of DF, increased choice comes with increased legal responsibilities and often administrative tasks that many older people and their supports find burdensome. Furthermore, there is no evidence that choice over all elements of one’s services is the mechanism that improves care expe‐ riences. We conclude by presenting alternative models of understanding care emerg‐ ing from feminist and other critical scholarship to consider if we are, perhaps, asking the wrong questions about why DF is so often preferred over conventional home‐ care delivery. KEYWORDS

Choice, consumer‐directed care, direct payments, individualised funding, home care, self‐ directed care, self‐managed care

Health Soc Care Community. 2018;1–20.

wileyonlinelibrary.com/journal/hsc © 2018 John Wiley & Sons Ltd | 1

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FITZGERALD MURPHY and KELLY

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1 | I NTRO D U C TI O N There is a sea change in how home‐care services are arranged and delivered in developed countries, manifesting in a variety of policy interventions designed to increase control and flexibility for those using social and health services. Often, and at times controversially (Spandler, 2004), this change is associated with providing funds directly to individuals, and sometimes their fami‐ lies and supports, to arrange home care to support the activities of daily living. There are a variety of terms used to describe this wave of changes, including consumer‐directed care, self‐managed care, self‐directed care, direct payments, individualised funding, and personalisation (cf. Laragy & Allen, 2015, p. 213). Our re‐ search team uses the term “direct funding” or “directly‐funded”

What is known about the topic • Direct funding (DF) home‐care programs provide funds to users and/or their families to arrange at home‐care assistance with the activities of daily living. • Many governments are expanding DF options, which are lauded for increasing “choice,” cost‐effectiveness. • Consolidated evidence suggests that DF may be experi‐ enced differently across demographics, and is accu‐ rately described as “cost‐neutral.”

What this paper adds • “Choice” emerges as a normative goal with presumed

(DF) home care to emphasise the cash transfer element of this

benefits among studies of DF in developed countries.

mechanism and to offer a critical hesitation around positioning

• Focusing on improved care outcomes instead of “en‐

those who require health and social services as “consumers” in

hanced choice,” especially for older people, may be a

an age of government austerity and hyperneoliberalism. We also

better avenue for evaluating DF.

move away from an emphasis on “self” management, as in many circumstances, family members and informal supports become

• The complexities of DF may be better studied drawing on feminist and other critical scholarship on care.

involved in arranging services. In this article, we consider the background context for DF pro‐ grams for older people and outline the method for a critical metasyn‐ thesis of the relevant literature. Specifically, we consider 47 research articles published between 2009 and 2017 that explore various DF programs for older persons in the United Kingdom, Australia, and the United States so as to identify core issues in the literature. We find that “choice” emerges as a central concern that is conceptu‐ alised and applied in a variety of ways. Predominately, choice, in these contexts, refers to structural and social organisations of care which prioritise the right of the service user to express and mobilise their preferred caring arrangements. In this way, choice is linked to control, autonomy, and independence. We then explore the ques‐ tions: How does the existing literature conceptualise choice, and the mechanisms through which it is enhanced, in DF programs for older persons? How is “choice,” and the benefit of choice to older service users, understood in relevant studies? We argue that “choice” is an unquestioned reference point in the majority of studies of DF pro‐ grams for older persons. We conclude by considering alternative models for evaluating and framing our explorations of DF in devel‐ oped countries.

packages, formalised in February 2017 under the policy Increasing Choice in Home Care (Australian Department of Health, 2017b). In the Australian context, consumer‐directed care is defined as when “you (and your carer) have more choice and control over what services are delivered and where and when they are delivered” (Australian Department of Health, 2017b, np). “Increasing choice” is the predominant policy objective and orienting concept framing these reforms. Similarly, in the United Kingdom, direct payments have been available in all local health authorities since the Community Care (Direct Payments) Act (1996). It is noteworthy that the United Kingdom example is explicitly linked to mobilisation and advocacy led by the British Council of Disabled People (BCODP), and we will return to the influence of disability politics shortly. More broadly, social and healthcare have been reoriented in the United Kingdom under the banner of “personalisation.” Personalisation means that “every person who receives support, whether provided by statu‐ tory services or funded by themselves, will have choice and con‐ trol over the shape of that support in all care settings” (Dunning, 2008, np).

2 | BAC KG RO U N D A N D CO N C E P T UA L I N FLU E N C E S

In the United States, self‐directed care services have not been implemented nationally, but rather fall under the purview of in‐ dividual states. The most significant effort to implement self‐di‐ rected care is the Cash and Counselling Demonstration program,

Conceptually, DF is informed by patient‐centred care (Stewart,

“an approach to long‐term care personal assistance services in

2001) and other models that prioritise the preferences and experi‐

which the government gives people cash allowances to pay for the

ences of those using the services. The Australian government, for

services and goods they feel would best meet their personal care

example, rolled out a series of reforms informed by Living Longer,

needs” (Robert Wood Johnson Foundation, 2015, np). Arkansas,

Living Better (Australian Department of Health, 2017a) beginning

Florida, and New Jersey first piloted this initiative, beginning

in 2012. These reforms phased in a universal delivery of care

in 1998 (National Council on Disability, 2013). A central goal of

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this program was to enhance self‐determination for people with

reference point in the majority of studies of DF programs. Yet, as our

chronic disabilities by transferring “a considerable degree of au‐

critical analysis demonstrates, the available literature does not provide

thority” (National Council on Disability, 2013, np) to service users,

evidence that choice is the element that actually enhances experiences

in contrast to traditional service delivery models where decision‐

of giving and receiving care.

making is assigned to professionals. There is a vibrant connection among DF programs to Independent Living movements in different contexts. Notably, Independent Living

3 | M E TH O D O LO G Y

movements motivate their advocacy around deinstitutionalisation, inclusion in the community, valuing disabled people as members of

Qualitative metasynthesis is defined as “the theories, grand narratives,

society, individual and collective empowerment, and many other no‐

generalisations, or interpretive translations produced from the integra‐

tions that challenge dominant social values. This history and the cri‐

tion or comparison of findings from qualitative studies” (Sandelowski,

tiques of conventional care associated with Independent Living seem

Docherty, & Emden, 1997, p. 366). The purpose of this methodology is

overshadowed, or even to drop away, when DF is mainstreamed

to review qualitative studies in a specific area so as to expose and in‐

(Kelly, forthcoming). For example, Independent Living movements

terrogate the nuances and taken‐for‐granted assumptions that shape

also refer to choice and control for those who use services, but there

a given literature (Walsh & Downe, 2004, p. 205). In this paper, quali‐

are distinctly different intonations than mainstream policy frame‐

tative metasynthesis is used to identify prevalent concepts, themes,

works around DF. In Independent Living movements, choice is linked

and topics in the literature on DF programs for older people in the

to notions of collective empowerment and societal transformation

United Kingdom, Australia, and the United States. Prominent themes

rather than simply individual choice (Hasler, Campbell, & Zarb, 1999;

and topics, we suggest, serve as core concepts and come to frame a

Kelly, 2016). Independent Living grew out of a rejection of segre‐

body of research in particular ways. Identifying core concepts allows

gated, institutionalised approaches to disability, and significantly,

us to interrogate particular discourses (re)produced in a specific body

one of the greatest harms of institutionalisation is the removal of

of literature (Sandelowski & Barroso, 2003); in so doing, we can then

choice over the pace and mundane aspects of daily life. As such, in

point to the limitations of these discourses and consider alternative

disability contexts, an emphasis on choice is deeply politicised in that

research agendas which may lead to novel insights.

enabling choice can be empowering for the individual, foster a group

The scope of this metasynthesis includes qualitative studies,

politic, and challenge nondisabled people’s presumptions about, and

systematic reviews, relevant grey literature, and any other study

actions towards, disabled people.

of pertinence published between January 2009 and May 2017.

In the mainstream policy frameworks that motivate DF, “choice”

Importantly, we take a liberal definition of “qualitative studies” to in‐

and “control” carry different connotations. Mol (2006) writes about

clude any empirical research with human participants (Sandelowski

a “logic of choice” that pervades healthcare discourses that, impor‐

& Barroso, 2003). For example, a study that employs quantitative

tantly, does not necessarily lead to good care. She describes the

methods to analyse data from surveys completed by older DF service

ways in which the ideal of “choice” is often mobilised to shift respon‐

users (Woolham, Daly, Sparks, Ritters, & Steils, 2017) was included in

sibility for harm to individuals, halt conversations, and possibly im‐

this metasynthesis. This was to ensure that the metasynthesis was as

pede what she terms “a logic of care.” Mol (2006) writes, “Practices

inclusive as possible, and because the inherent interpretative nature

designed to foster ‘patient choice’ erode existing practices that were

of conducting research involving humans is, to some degree, nec‐

established to ensure good care.” (p. 1). While some might defend

essarily qualitative, even when quantitative methods are employed.

the logic of choice as an avenue to challenge medical authority and

Decisions about which words to use in a survey, and the ways in

assert autonomy of patients, Mol (2006) offers this challenge:

which those completing the survey will interpret those words, are subjective and involve thick interpretative decisions.

[…] in care practices patients are not passive at all.

Finally, it is important to emphasise that in the qualitative par‐

They are active. However, they do not primarily figure

adigm, “truth” is seen as multiple and contingent, and knowledge is

as subjects of choice, preoccupied with our will, and

constructed through the research process. This is the paradigm from

with that we may opt for, but [my argument] concen‐

which we undertake this metasynthesis, and there are two import‐

trates on what we do. Patients tend to do a lot. (p. 8)

ant implications following from this vantage point. First, it is legiti‐ mate to include studies which employ a variety of methodological

Taking a page from Mol—and in accordance with the findings of

approaches in a qualitative metasynthesis (Walsh & Downe, 2004, p.

this qualitative metasynthesis—we begin by presuming that DF in‐

207), particularly when the focus of the metasynthesis is a concern

creases choice for service users, but ask by which mechanisms, and

with the development of concepts and the ways in which concepts

perhaps more critically, for what ends? Rather than a wholesale cri‐

are mobilised and studied. That is, while different methodologies

tique of choice, we are motivated by a desire to unpack “choice” and

may evade direct comparison of findings across studies, bringing

explore what it means for care through its various mobilisations. Our

together a variety of studies with different methodological ap‐

qualitative metasynthesis finds that the majority of studies on DF con‐

proaches is useful when attempting to identify a body of research’s

sider choice in some form, and thus, “choice” emerges as a normative

“grand narratives.”

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Second, in the qualitative paradigm, there is no definitive

• Self‐directed support

consensus on what constitutes “quality” in qualitative research

• Self‐managed care

(Sandelowski & Barroso, 2003, p. 155). Qualitative researchers

• Self‐managed support

come from a range of disciplinary, philosophical, and theoretical

• User‐directed care

backgrounds and have a variety of political, social, and ethical

• User‐directed support

commitments. As a result, “these diverse inquirers have corre‐

• Direct funding

spondingly diverse opinions concerning what a ‘good’ qualitative study is” (Sandelowski et al., 1997, p. 366). Indeed, criteria of “quality” are also historically and contextually contingent, fluid,

These terms were used to retrieve publications through the follow‐ ing Academic Databases:

and changing. As a result, while a strict search strategy was con‐ structed to maintain a focus on the chosen topic of DF programs

• Proquest

for older people in the United Kingdom, Australia, and the United

• CINAHL

States, the studies included in this metasynthesis were not eval‐

• Psych Info

uated based on quality or strength of evidence. Evaluating and

• Science Direct

weighting studies based on subjective notions of worth may result

• Medline

in important and relevant findings being overlooked or devalued (Finlayson & Dixon, 2008). This, in turn, may create its own bias in

Google scholar was also used as a supplementary database. Figure

the literature by (re)producing and concealing the understandings

1 illustrates the initial search strategy. The search yielded a total 225

of particular phenomena. Furthermore, a strict focus on quality of

of references.

evidence neglects the reality that articles and reports circulate as producers and repositories of knowledge, regardless of “quality.”

3.2 | Inclusion criteria Literature reviews, policy papers, and qualitative studies (see defi‐

3.1 | Search strategy

nition above) were included, as were academic literature and “grey

The search strategy follows that employed by Ottmann, Allen,

literature” in the form of publicly available reports; as mentioned ear‐

and Feldman (2013) to identify available research on DF programs

lier, because we are concerned with identifying this literature’s core

for older people in the United Kingdom, Australia, and the United

concepts, the inclusion of a wide array of studies provides a more

States.1

robust picture of the central themes, concepts, and issues in this area

Five research databases were initially searched for peer‐re‐

of research. In order to be included, however, the study must.

viewed journal articles. A set of 11 search terms were used to con‐ • Present or assess a model of community‐based continuing care2

duct the initial literature search:

where the consumer/client or their families/care‐givers were in • Consumer‐directed care

charge of directing the support services;

• Individual budgets

• The model must be located in one of the countries examined in this

• Direct payments

metasynthesis (the United Kingdom, Australia, or the United States);

• Flexible funding

• The model had to be to support home‐care services;

• Self‐directed care

• Older people must be eligible to participate in the model.

Search Terms: Consumer-directed care Individual budgets Direct payments Flexible funding Self-directed care Self-directed support Self-managed care Self-managed support User-directed care

Databases: Proquest CINAHL Psych Info Science Direct

Total of 225 References

Medline Google Scholar

User-directed support Direct funding

F I G U R E 1 Overview of search strategy

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Search strategy yields: 225 sources

Preliminary review: 88 sources retained

Preliminary review: 137 sources cut

Hand search of reference lists: 4 addional sources idenfied

Read in detail: 88 + 4 = 92 sources

F I G U R E 2 Determining source eligibility

Failed to meet inclusion criteria: 45 sources cut

Met inclusion criteria: 47 sources included in study

It should be noted, however, that three articles were in‐ cluded despite not meeting these criteria (Kaambwa et al., 2015;

3.3 | Limitations

Manthorpe & Samsi, 2013; Putnam, Pickard, Rodriguez, & Shear,

This qualitative metasynthesis includes only English language ar‐

2010). These three pieces did not assess a DF program, but rather

ticles and reports; while this may exclude relevant literature, the

examined stakeholders’ future expectations of DF models. We

fact that the countries examined in this metasynthesis (the United

chose to include these articles so as to obtain a more comprehen‐

Kingdom, Australia, and the United States) are primarily English

sive picture of the challenges and successes of conceptualising DF

speaking suggests that the majority of the relevant work will be

programs at all stages, including before any formal implementa‐

captured within the English literature. Finally, one significant limi‐

tion has taken place. Again following Ottmann et al. (2013), results

tation of this study is the potential researcher bias associated with

from one study or data set were included only once, even if multi‐

one author (Author 1) determining which articles met the inclusion

ple articles resulted from the data set.

criteria from the initial search pool (cf. You, Dunt, & Doyle, 2017).

We found 225 sources through our initial search. A total of 137

To minimise this risk, however, both authors discussed the inclu‐

were cut after a preliminary review of the abstracts. The reference

sion of any articles that did not clearly meet the inclusion criteria,

lists of the 88 articles that remained after this preliminary cut were

and Author 2 reviewed the excluded articles to ensure that they

hand‐searched; four additional articles or reports were identified

were appropriately omitted.

using this method. A total of 92 sources were therefore read in de‐ tail to determine if they meet the inclusion criteria; those that did not meet the criteria were excluded from the study. A total of 45 articles

4 | A N A LYS I S A N D R E S U LT S

were excluded either because they did not meet one or more of the inclusion criteria or on the basis of data set duplication. In the end, a

A total of 47 articles were found to meet the broad inclusion cri‐

total of 47 articles and reports were reviewed for this piece. Figure 2

teria. In the first stage of analysis, these studies were reviewed to

summarises this process.

identify dominant themes or topics in the literature. Specifically,

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detailed notes were made on the findings and conclusions pre‐

studies reviewed into three main groups of articles; the first, termed

sented in each article, study, or report; these notes were then

the “Choice Studies,” includes articles that focus explicitly on choice

examined to ascertain perennial themes or topics of interest. As

(Table 2, references 1–28). These were the articles that were iden‐

Table 1 demonstrates, a variety of themes emerged; for instance,

tified as focusing on choice in the initial thematic and topical re‐

several articles discussed how DF might exacerbate or reduce

view. The second set, the “Inferred Choice Studies,” indirectly focus

risks for older people (Carr & Robbins, 2009; Ismail et al., 2017;

on choice (Table 2, references 29–41), and the final group of arti‐

Mitchell, Baxter, & Glendinning, 2012), explored the cost‐effec‐

cles, the “Other Focus Studies,” do not focus on choice in any way

tiveness of DF programs (Jones & Netten, 2010; Rummery, Bell,

(Table 2, references 42–47). These articles were categorised based

Bowes, Dawson, & Roberts, 2012; Woolham & Benton, 2013), and

on the second phase of analysis in which the articles were reread to

highlighted some of the organisational challenges associated with

identify more fully how choice is framed, mobilised, and studied in

the implementation of DF programs by various health authorities

the literature.

(Doty, Mahoney, & Sciegaj, 2010; Duffy, 2011; Gill et al., 2017; Velzke, 2017). As Table 1 also indicates, “choice” is an undeniable, predomi‐ nant theme in the literature. Quantitatively, choice is prevalent in

4.1 | Choice studies Among the articles that explicitly focus on choice (Table 1, refer‐

the literature at a much higher frequency than any other issues or

ences 1–28), the challenges related to increasing choice via DF pro‐

topics. Approximately 60% of the articles and studies reviewed

grams are highlighted, the mechanisms which facilitate or inhibit

focus on choice in some substantive way. In contrast, the second

choice are explored, and the ways in which choice is experienced

most recurring topic—older people user preference/experience of

by users, both positively and negatively, are interrogated. Taken

DF programs—only appeared in about 40% of articles. Furthermore,

together, these articles demonstrate that increased choice is com‐

the concept of choice crosses and intersects with many other core

plicated and inconsistent within DF programs, and indeed, that in‐

topics in the literature, and thus is of qualitative import. Of course,

creased choice also comes with its own burden of responsibility for

to some degree, this is not surprising. For instance, it is logical that

deciding and managing care.

“choice” will feature heavily in articles focusing on the topic of older

Many studies explore the challenges of translating DF’s theoret‐

people user preference given that DF programs have been designed

ical goal of enhanced choice for users into practice, noting that such

to provide service users with enhanced choice regarding their caring

translation is riddled with tensions and inconsistencies. For example,

arrangements. At the same time, however, it is interesting that the

as Rodrigues and Glendinning (2015) conclude in their study of per‐

concept of choice is also prevalent in articles focusing on a variety

sonal budgets in England, despite the fact that DF is “underpinned

of other topics. For example, choice was a prominent topic in arti‐

by discourses of user choice […] there is only modest evidence that

cles exploring issues such as staff and practitioner experiences of

they have led to increases in older people acting as empowered and

DF programs; family caregiver experience with DF programs; costs

informed consumers, able to make demands on providers for home

of DF programs; risk and DF programs; organisational challenges

care that meet individual needs and preferences” (p. 650). Similarly,

with DF programs; and legal issues associated with DF programs.

McCaffrey et al. (2015) find that despite DF’s users’ desire to influ‐

In other words, the concept of choice arises in a quantitatively fre‐

ence “which services were provided; when they were provided; who

quent sense in the literature as well as appears to carry qualitative

provided services; the volume of services; and the day‐to‐day ac‐

weight in that it seems deeply implicated in the study of many other

tivities support workers performed” in practice, “services appeared

phenomena, issues, and topics related to DF. Thus, we contend that

menu‐driven, even for those receiving DF” (p. 658). This demon‐

the core concept in the literature on DF programs for older people

strates a disconnect between the goal of enhanced choice under

in the United Kingdom, Australia, and the United States is “choice.”

DF programs and the actual user experience of choice under these

Increasing choice, in this literature, is the central concern and comes

schemes.

to frame and pervade the body of research in significant ways.

One notable issue is that the design of the program greatly

Given our finding that the concept of “choice” is primary in the

influences how much choice users may actually experience in

literature reviewed here, and in order to advance the scholarly lit‐

practice. In their article, Rabiee, Baxter, and Glendinning (2016) in‐

erature on DF, we focus specifically on choice, and the issues and

terview support planners and service provider agencies to assess

questions that are (un)answered in this literature, for the remainder

how these individuals support older peoples’ choice in their use of

of this analysis. In this way, we see this piece as a critical qualitative

personal budgets in England. The interviewees noted that the level

metasynthesis: in addition to identifying “choice” as the core con‐

of choice available to users depended on whether clients opted for

cept in this literature, we also aim to interrogate critically the ways

a direct payment option versus opting for their budget to be man‐

in which the conceptual primacy of choice shapes our understanding

aged by local councils. “Council support planners across the three

of DF, and frames our research on DF, more broadly.

sites agreed that in reality, choice and control was only available

On identifying choice as a core concept in the literature, we re‐

through the direct payment option” (Rabiee et al., 2016, p. 460).

read the articles with a particular eye to the ways in which choice

Thus, in order to experience choice, it was felt that users must use

is mobilised or discussed. This process allowed us to organise the

the direct payment option, including directly hiring workers. At the

Ottmann, G., Allen, J., and Feldman, P. (2013). A systematic narrative review of consumer‐directed care for older people: implications for model development. Health and Social Care in the Community 21(6), 563–581.

Low, L., Chilko, N., Gresham, M., Barter, S., and Brodaty, H. (2012). An update on the pilot trial of consumer‐directed care for older persons in Australia. Australasian Journal on Ageing 31(1), 47–51.

Gill, L., McCaffrey, N., Cameron, I.D., Ratcliffe, J., Kaambwa, B., Corlis, M., Fiebig, J., and Gresham, M. (2017). Consumer directed care in Australia: Early perceptions and experiences of staff, clients and carers. Health and Social Care in the Community 25(2), 478–491.

Carr, S. (2011a). Enabling risk and ensuring safety: Self‐directed support and personal budgets. The Journal of Adult Protection 13(3), 122–136.

Brookes, J., Mitchell, W., and Glendinning, C. (2017). Personalisation, personal budgets and family carers: Whose assessment? Whose budget? Journal of Social Work 17(2), 147–166.

Rabiee, P., Baxter, K., and Glendinning, C. (2016). Supporting choice: Support planning, older people and managed personal budgets. Journal of Social Work 16(4), 453–469.

Mitchell, W., Baxter, K., and Glendinning, C. (2012). Updated review of research on risk and adult social care in England. York: University of York.

Mitchell, W., Brooks, J., and Glendinning. C. (2015). Carers’ roles in personal budgets: Tensions and dilemmas in front line practice. British Journal of Social Work 45, 1433–1450.

Jones, K., and Netten, A. (2010). The costs of change: A case study of the process of implementing individual budgets across pilot local authorities in England. Health and Social Care in the Community 18(1), 51–58.

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TA B L E 1 Article themes, core concepts and topics

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Topic I

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Topic II

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Topic III

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Topic IV

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Topic V

Topic VI

Topic VII

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Topic VIII

Topic IX

Topic X

(Continues)

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Topic XI

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O'Rourke, G. (2016). Older people, personalisation and self: An alternative to the consumerist paradigm in social care. Ageing & Society 36, 1008–1030.

Ismail, M., Hussein, S., Stevens, M., Woolham, J., Manthorpe, J., Aspinal, F., Baxter, K., and Samsi, K. (2017). Do personal budgets increase the risk of abuse? Evidence from English National Data. Journal of Social Policy 46(2), 291–311.

Slasberg, C., Beresford, P., and Schofield, P. (2013). The increasing evidence of how self directed support is failing to deliver personal budgets and personalisation. Research, Policy and Planning 30(2), 91–105.

McGuigan, K., McDermott, L., Magowan, C., McCorkell, G., Witherow, A., and Coates, V. (2016). The impact of direct payments on service users requiring care and support at home. Practice 28(1), 37–54.

Velzke, K.D. (2017). Exploration of choice for older people with daily care needs: Scottish professionals’ perspectives on self‐directed support. Journal of Gerontological Social Work 60(1), 7–31.

Woolham, J., and Benton, C. (2013). The costs and benefits of personal budgets for older people: Evidence from a single local authority. British Journal of Social Work 43, 1472–1491.

Moore, D., and Jones, K. (2011). Promoting self‐directed support for people living with dementia: Overcoming the challenges. Social Care and Neurodisability 2(2), 66–70.

Sciegaj, M., Mahoney, K.J., Schwartz, A.J., Simon‐ Rusinowitz, L., Selkow, I., and Loughlin, D.M. (2016). An inventory of publicly funded participant‐directed long‐term services and supports programs in the United States. Journal of Disability Policy Studies 26(4), 245–251.

Low, L., Yap, M., and Brodaty, H. (2011). A systematic review of different models of home and community care services for older persons. BMC Health Services Research 11, 93

Manthorpe, J., Martineau, S., Ridley, J., Cornes, M., Rosengard, A., and Hunter, S. (2015). Embarking on self‐directed support in Scotland: A focused scoping review of the literature. European Journal of Social Work 18(1), 36–50.

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TA B L E 1 (Continued)

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X

Topic I

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X

Topic II

Topic III

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Topic IV

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Topic V

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Topic VI

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Topic VII

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Topic VIII

Topic IX

Topic X

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San Antonio, P., Simon‐Rusinowitz, L., Loughlin, D., Eckert, J.K., Mahoney, K.J., and Depretis Ruben, K.A. (2009). Lessons from the Arkansas Cash and Counselling Program: How the experiences of diverse older consumers and their caregivers address family policy concerns. Journal of Aging & Social Policy 22(1), 1–17

Carr, S., and Robbins, D. (2009). The implementation of individual budget schemes in adult social care. London: Social Care Institute for Excellence.

Waters, J., and Hatton, C. (2014). Third national personal budget survey: Experiences of personal budget holders and carers across adult social care and health. Lancaster: Incontrol and Lancaster University.

Lakey, L. (2011). Getting personal? Making personal budgets work for people with dementia. London: Alzheimer's Society.

Newbronner, L., Chamberlain, R., Bozanquet, K., Bartlett, C., Sass, B., and Glendinning, C. (2011). Keeping personal budgets personal: Learning from the experience of older people, people with mental health problems, and their carers. London: Social Care Institute for Excellent.

Moran, N., Glendinning, C., Wilberforce, M., Stevens, Nettens, A., Jones, K., Manthorpe, J., Knapp, M., Fernandez, J‐L., Challis, D., and Jacobs, S. (2013). Older people's experiences of cash‐for‐care schemes: Evidence from the English Individual Budget pilot projects. Ageing & Society 33, 826–851.

Norrie, C., Weinstein, J., Jones, R., Hood, R., and Bhanbro, S. (2014). Early experiences in extending personal budgets in one local authority. Working with Older People 18(4), 176–185.

Laybourne, A.H., Jepson, M.J., Williamson, T., Robotham, D., Cyhlarova, E., and Williams, V. (2016). Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners. Dementia 15(1), 125–140.

Rodrigues, R., and Glendinning, C. (2015). Choice, competition and care: Developments in English Social Care and the impacts on providers and older users of home care services. Social Policy & Administration 49(5), 649–664.

21

22

23

24

25

26

27

28

29

Article


X

X

X

X

X

X

X

Topic V

Topic VI

Topic VII

X

Topic VIII

X

X

Topic IV

X

X

X

X

Topic III

X

X

X

Topic II

X

X

X

X

Topic I

Topic IX

Topic X

(Continues)

X

X

X

X

X

X

X

X

Topic XI


|

Laragy, C., and Allen, J. (2015). Community aged care case managers transitioning to consumer directed care: More than procedural change required. Australian Social Work 68(2), 212–227.

Ottmann, G., and Mohebbi, M. (2014). Self‐directed community services for older Australians: A stepped capacity‐building approach. Health and Social Care in the Community 22(6), 598–611.

Kietzman, K.G., Benjamin, A.E., and Matthias R.E. (2013). Whose choice? Self‐determination and the motivations of paid family and friend caregivers. Journal of Comparative Family Studies XXXXIV(4), 520–540.

Friedman, B., Wamsley, B.R., and Conwell, Y. (2015). Do disabled elderly medicare beneficiaries with major depression make less use of a consumer‐directed home care voucher benefit? Journal of Aging & Social Policy 27(1), 87–105.

Gill, L., and Cameron, I.D. (2015). Innovation and consumer directed care: Identifying the challenges. Australasian Journal on Ageing 34(4), 265–268.

Doty, P., Mahoney, K.J., and Sciegaj, M. (2010). New state strategies to meet long‐term care needs. Health Affairs 29(1), 49–56.

Delp, L., Wallace, S.P., Geiger‐Brown, J., and Muntaner, C. (2010). Job stress and job satisfaction: Home care workers in a consumer‐directed model of care. Health Services Research 45(4), 922–940.

McCaffrey, N., Gill, L., Kaambwa, B., Cameron, I.D., Patterson, J., Crotty, M., and Ratcliffe, J. (2015). Important features of home‐based support services for older Australians and their informal carers. Health and Social Care in the Community 23(6), 654–664.

Rummery, K., Bell, D., Bowes, A., Dawson, A., and Roberts, E. (2012). Counting the cost of choice and control: Evidence for the costs of self‐directed support in Scotland. Edinburgh: Queens Printers of Scotland.

30

31

32

33

34

35

36

37

38

Article


X

X

X

Topic I X

Topic II

X

X

X

Topic III

Topic IV

X

Topic V

Topic VI

Topic VII

X

X

Topic VIII

Topic IX

Topic X

(Continues)

|

X

X

X

X

X

Topic XI

10


5

3

1

3

X

X

X

Topic IX

1

X

Topic X

28

X

X

X

X

X

X

Topic XI

TOPIC KEY: TOPIC I. Older people user preference/experience of DF; TOPIC II. Staff/practitioner experiences with DF; TOPIC III. Carers and family experience with DF; TOPIC IV. DF and risk; TOPIC V. Cost of DF; TOPIC VI. Efficacy of DF; TOPIC VII. Trends in the growth of DF; TOPIC VIII. DF and organisational challenges; TOPIC IX. Future expectations about DF; TOPIC X. Legal Issues; TOPIC XI. Choice and DF.

5

10

19

10

Total

11

X

X

Duffy, S. (2011). Personalisation in social care: What does it really mean? Social Care and Neurodisability 2(4), 186–194.

X

47

X

Thornton, A. (2011). Blurred vision: Direct payments, funding cuts and the law. Social Care and Neurodisability 2(4), 218–225.

X

46

X

Carr, S. (2011b). Personal budgets and international contexts: Lessons from home and abroad. Journal of Care Services Management 5(1), 9–22.

45

X

Woolham, J., Daly, G., Steils, N., and Ritters, K. (2015). The evolution of person‐centred care to personalised care, personal budgets and direct payments in England: Some implications for older users of social care services. Sociologia e Politiche Sociali 18(1), 145–162.

44

X

Manthorpe, J., and Samsi, K. (2013). “Inherently risky?”: Personal budgets for people with dementia and the risks of financial abuse: Findings from an interview‐based study with Adult Safeguarding Coordinators. British Journal of Social Work 43, 889–903.

43

X

Topic VIII

Putnam, M., Pickard, J.G., Rodriguez, C., and Shear, E. (2010). Stakeholder perspectives on policies to support family caregivers of older adults with dementia. Journal of Family Social Work 13(2), 173–190.

Topic VII

42

X

Topic VI

Kaambwa, B., Lancsar, E., McCaffrey, N., Chen, G., Gill, L., Cameron, I.D., Crotty, M., and Ratcliffe, J. (2015). Investigating consumers’ and informal carers’ views and preferences for consumer directed care: A discrete choice experiment. Social Science & Medicine 140, 81–94.

Topic V

41

Topic IV

Ridley, J., Spandler, H., Rosengard, A., Little, S., Cornes, M., Manthorpe, J., Hunter, S., Kinder, T., and Gray, B. (2011). Evaluation of self‐directed support test sites in Scotland. Edinburgh: Queens Printers of Scotland.

Topic III

40

Topic II

Manthorpe, J., Hindes, J., Martineau, S., Cornes, M., Ridley, J., Spandler, H., Rosengard, A., Hunter, S., Little, S., and Gray, B. (2011). Self‐directed support: A review of the barriers and facilitators. Edinburgh: Queens Printers of Scotland.

Topic I

39

Article



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12


TA B L E 2 Articles reviewed organised by “choice” GROUP 1: Choice Studies (Articles that focus on choice) 1

Carr, S. (2011a). Enabling risk and ensuring safety: Self‐directed support and personal budgets. The Journal of Adult Protection 13(3), 122–136.

2

Carr, S. (2011b). Personal budgets and international contexts: Lessons from home and abroad. Journal of Care Services Management 5(1), 9–22.

3

Carr, S., and Robbins, D. (2009). The implementation of individual budget schemes in adult social care. London: Social Care Institute for Excellence.

4

Gill, L., McCaffrey, N., Cameron, I.D., Ratcliffe, J., Kaambwa, B., Corlis, M., Fiebig, J., and Gresham, M. (2017). Consumer directed care in Australia: Early perceptions and experiences of staff, clients and carers. Health and Social Care in the Community 25(2), 478–491.

5

Kaambwa, B., Lancsar, E., McCaffrey, N., Chen, G., Gill, L., Cameron, I.D., Crotty, M., and Ratcliffe, J. (2015). Investigating consumers’ and informal carers’ views and preferences for consumer directed care: A discrete choice experiment. Social Science & Medicine 140, 81–94.

6

Kietzman, K.G., Benjamin, A.E., and Matthias R.E. (2013). Whose choice? Self‐determination and the motivations of paid family and friend caregivers. Journal of Comparative Family Studies XXXXIV(4), 520–540.

7

Lakey, L. (2011). Getting personal? Making personal budgets work for people with dementia. London: Alzheimer's Society. Retrieved from https://www.alzheimers.org.uk/download/downloads/id/1281/getting_personal.pdf (accessed September 4, 2017).

8

Laragy, C., and Allen, J. (2015). Community aged care case managers transitioning to consumer directed care: More than procedural change required. Australian Social Work 68(2), 212–227.

9

Laybourne, A.H., Jepson, M.J., Williamson, T., Robotham, D., Cyhlarova, E., and Williams, V. (2016). Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners. Dementia 15(1), 125–140.

10

Manthorpe, J., Hindes, J., Martineau, S., Cornes, M., Ridley, J., Spandler, H., Rosengard, A., Hunter, S., Little, S., and Gray, B. (2011). Self‐directed support: A review of the barriers and facilitators. Edinburgh: Queens Printers of Scotland. Retrieved from https://clok.uclan. ac.uk/7034/1/7034_Ridley.pdf (accessed August 4, 2017).

11

Manthorpe, J., Martineau, S., Ridley, J., Cornes, M., Rosengard, A., and Hunter, S. (2015). Embarking on self‐directed support in Scotland: A focused scoping review of the literature. European Journal of Social Work 18(1), 36–50.

12

McCaffrey, N., Gill, L., Kaambwa, B., Cameron, I.D., Patterson, J., Crotty, M., and Ratcliffe, J. (2015). Important features of home‐based support services for older Australians and their informal carers. Health and Social Care in the Community 23(6), 654–664.

13

Moran, N., Glendinning, C., Wilberforce, M., Stevens, Nettens, A., Jones, K., Manthorpe, J., Knapp, M., Fernandez, J‐L., Challis, D., and Jacobs, S. (2013). Older people's experiences of cash‐for‐care schemes: Evidence from the English Individual Budget pilot projects. Ageing & Society 33, 826–851.

14

Newbronner, L., Chamberlain, R., Bozanquet, K., Bartlett, C., Sass, B., and Glendinning, C. (2011). Keeping personal budgets personal: Learning from the experience of older people, people with mental health problems, and their carers. London: Social Care Institute for Excellent. Retrieved from https://www.scie.org.uk/publications/reports/report40/(accessed August 4, 2017).

15

Norrie, C., Weinstein, J., Jones, R., Hood, R., and Bhanbro, S. (2014). Early experiences in extending personal budgets in one local authority. Working with Older People 18(4), 176–185.

16

O'Rourke, G. (2016). Older people, personalisation and self: An alternative to the consumerist paradigm in social care. Ageing & Society 36, 1008–1030.

17

Ottmann, G., Allen, J., and Feldman, P. (2013). A systematic narrative review of consumer‐directed care for older people: Implications for model development. Health Social Care in the Community 21(6), 563–581.

18

Ottmann, G., and Mohebbi, M. (2014). Self‐directed community services for older Australians: A stepped capacity‐building approach. Health and Social Care in the Community 22(6), 598–611.

19

Rabiee, P., Baxter, K., and Glendinning, C. (2016). Supporting choice: Support planning, older people and managed personal budgets. Journal of Social Work 16(4), 453–469.

20

Ridley, J., Spandler, H., Rosengard, A., Little, S., Cornes, M., Manthorpe, J., Hunter, S., Kinder, T., and Gray, B. (2011). Evaluation of self‐di‐ rected support test sites in Scotland. Edinburgh: Queens Printers of Scotland. Retrieved from https://www.gov.scot/ Publications/2011/09/20090337/0 (accessed August 4, 2017).

21

Rodrigues, R., and Glendinning, C. (2015). Choice, competition and care: Developments in English Social Care and the impacts on providers and older users of home care services. Social Policy & Administration 49(5), 649–664.

22

Rummery, K., Bell, D., Bowes, A., Dawson, A., and Roberts, E. (2012). Counting the cost of choice and control: Evidence for the costs of self‐directed support in Scotland. Edinburgh: Queens Printers of Scotland. Retrieved from https://www.gov.scot/ Publications/2012/02/9547 (accessed August 4, 2017). (Continues)


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13

TA B L E 2 (Continued) GROUP 1: Choice Studies (Articles that focus on choice) 23

San Antonio, P., Simon‐Rusinowitz, L., Loughlin, D., Eckert, J.K., Mahoney, K.J., and Depretis Ruben, K.A. (2009). Lessons from the Arkansas Cash and Counselling Program: How the experiences of diverse older consumers and their caregivers address family policy concerns. Journal of Aging & Social Policy 22(1), 1–17.

24

Thornton, A. (2011). Blurred vision: Direct payments, funding cuts and the law. Social Care and Neurodisability 2(4), 218–225.

25

Velzke, K.D. (2017). Exploration of choice for older people with daily care needs: Scottish professionals’ perspectives on self‐directed support. Journal of Gerontological Social Work 60(1), 7–31.

26

Woolham, J., and Benton, C. (2013). The costs and benefits of personal budgets for older people: Evidence from a single local authority. British Journal of Social Work 43, 1472–1491.

27

Woolham, J., Daly, G., Steils, N., and Ritters, K. (2015). The evolution of person‐centred care to personalised care, personal budgets and direct payments in England: Some implications for older users of social care services. Sociologia e Politiche Sociali 18(1), 145–162.

28

Woolham, J., Daly, G., Sparks, T., Ritters, K., and Steils, N. (2017). Do direct payments improve outcomes for older people who receive social care? Differences in outcome between people aged 75+ who have a managed personal budget or a direct payment. Ageing & Society 37, 961–984.

GROUP 2: Inferred Choice Studies (Articles that implicitly address choice) 29

Brookes, J., Mitchell, W., and Glendinning, C. (2017). Personalisation, personal budgets and family carers: Whose assessment? Whose budget? Journal of Social Work 17(2), 147–166.

30

Doty, P., Mahoney, K.J., and Sciegaj, M. (2010). New state strategies to meet long‐term care needs. Health Affairs 29(1), 49–56.

31

Friedman, B., Wamsley, B.R., and Conwell, Y. (2015). Do disabled elderly medicare beneficiaries with major depression make less use of a consumer‐directed home care voucher benefit? Journal of Aging & Social Policy 27(1), 87–105.

32

Gill, L., and Cameron, I.D. (2015). Innovation and consumer directed care: Identifying the challenges. Australasian Journal on Ageing 34(4), 265–268.

33

Ismail, M., Hussein, S., Stevens, M., Woolham, J., Manthorpe, J., Aspinal, F., Baxter, K., and Samsi, K. (2017). Do personal budgets increase the risk of abuse? Evidence from English National Data. Journal of Social Policy 46(2), 291–311.

34

Jones, K., and Netten, A. (2010). The costs of change: A case study of the process of implementing individual budgets across pilot local authorities in England. Health and Social Care in the Community 18(1), 51–58.

35

Low, L., Chilko, N., Gresham, M., Barter, S., and Brodaty, H. (2012). An update on the pilot trial of consumer‐directed care for older persons in Australia. Australasian Journal on Ageing 31(1), 47–51.

36

Low, L., Yap, M., and Brodaty, H. (2011). A systematic review of different models of home and community care services for older persons. BMC Health Services Research 11, 93.

37

Manthorpe, J., and Samsi, K. (2013). “Inherently risky?”” Personal budgets for people with dementia and the risks of financial abuse: Findings from an interview‐based study with adult safeguarding coordinators. British Journal of Social Work 43, 889–903.

38

Mitchell, W., Baxter, K., and Glendinning, C. (2012). Updated review of research on risk and adult social care in England. York: University of York.

39

Putnam, M., Pickard, J.G., Rodriguez, C., and Shear, E. (2010). Stakeholder perspectives on policies to support family caregivers of older adults with dementia. Journal of Family Social Work 13(2), 173–190.

40

Slasberg, C., Beresford, P., and Schofield, P. (2013). The increasing evidence of how self directed support is failing to deliver personal budgets and personalisation. Research, Policy and Planning 30(2), 91–105.

41

Waters, J., and Hatton, C. (2014). Third national personal budget survey: Experiences of personal budget holders and carers across adult social care and health. Lancaster: Incontrol and Lancaster University. Retrieved from https://www.incontrol.org.uk/media/168205/third%20 national%20personal%20budget%20survey%20oct2014.pdf (accessed August 4, 2017).

GROUP 3: Other Focus Studies (Articles that do not mention choice) 42

Delp, L., Wallace, S.P., Geiger‐Brown, J., and Muntaner, C. (2010). Job stress and job satisfaction: Home care workers in a consumer‐di‐ rected model of care. Health Services Research 45(4), 922–940.

43

Duffy, S. (2011). Personalisation in social care: What does it really mean? Social Care and Neurodisability 2(4), 186–194.

44

McGuigan, K., McDermott, L., Magowan, C., McCorkell, G., Witherow, A., and Coates, V. (2016). The impact of direct payments on service users requiring care and support at home. Practice 28(1), 37–54.

45

Mitchell, W., Brooks, J., and Glendinning. C. (2015). Carers’ roles in personal budgets: Tensions and dilemmas in front line practice. British Journal of Social Work 45:1433–1450.

46

Moore, D., and Jones, K. (2011). Promoting self‐directed support for people living with dementia: Overcoming the challenges. Social Care and Neurodisability 2(2), 66–70.

47

Sciegaj, M., Mahoney, K.J., Schwartz, A.J., Simon‐Rusinowitz, L., Selkow, I., and Loughlin, D.M. (2016). An inventory of publicly funded participant‐directed long‐term services and supports programs in the United States. Journal of Disability Policy Studies 26(4), 245–251.

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14

same time, however, “support planners felt this did not necessarily

continued to rely on traditional home‐care or day‐care services, as op‐

mean service users had a choice because, as one support planner

posed to actively choosing their care arrangements (Norrie et al., 2014,

put it, ‘they had to have a direct payment when they didn’t want

p. 182). Ottmann and Mohebbi (2014) similarly note that in their multi‐

one’” (ibid., pp. 460–461). Rodrigues and Glendinning (2015) make

methods longitudinal comparative cohort study of DF interventions in

a similar point in their article, in which they demonstrate that de‐

Australia, the most important barrier to uptake was “a lack of perceived

pending on the particulars of the DF program, users will experience

knowledge, authority, and expertise” (p. 607). Thus, knowledge limita‐

different levels of choice in terms of their purchasing power for

tions appear to impact clients’ experience of DF at both early and later

different care services.

stages of DF use. As Carr (2011) concludes, “consultation with recip‐

Finally, even within particular programs, the literature indicates

ients – especially older people – has […] found that a major concern

that choice is not available across all caring needs. For example,

is the quality of advice and support available to people using direct

Woolham et al. (2017) find that their survey of DF users in England

payments or personal budgets” (p. 14).

indicates that “though direct payment users were more likely to

At the same time, however, the literature also identifies barri‐

feel they had choice over when [their] basic activities of daily liv‐

ers to the flow of information and support for new and continu‐

ing occurred, control was not axiomatic. Between a quarter and a

ing DF users. In Carr’s (2011) literature review, she notes that the

third were unable to exercise full control over when they ate, went

evidence strongly illustrates that “front‐line staff and first line

to bed or bathed/showered” (p. 973). Clearly, the program design

manager training and supervision are vital for the implementation

directly influences the level of and types of choices available to

of [DF… and for] helping people to maximize their opportunities

older clients.

for choice through cash‐for‐care schemes” (p. 14–15). At the same

The literature also indicates that access to information and sup‐

time, however, the literature demonstrates that the training levels

port for people starting out in DF is crucial for facilitating choice

for these personnel are not always sufficient. For instance, Carr

(Lakey, 2011; Newbronner et al., 2011):

and Robbins (2009) write that “frontline workers are either not aware of the [DF] policy, [or] do not have sufficient information to

A consistent theme in the earlier research into [DF

confidently offer direct payments” (p. 6). Laragy and Allen (2015)

programs] has been the importance of people simply

find that in the Australian context, many senior case managers

knowing about their existence, and linked to this, hav‐

found DF program implementation confusing and felt that “they

ing access to clear information in different forms and

did not have sufficient information regarding the changing proce‐

from different sources. The [DF] holders in this study

dures to support and supervise their teams adequately” (p. 219).

emphasised the importance of raising general aware‐

McGuigan et al. (2016) report that the informal care‐givers they

ness of [DF], so that more people could benefit from

interviewed in Northern Ireland (serving as proxies for DF users)

them at an early stage in their involvement with social

expressed a need for enhanced information exchange around DF

services. Although […] staff are central to this, pri‐

schemes:

mary care and hospital staff involved in hospital dis‐ charge, care agencies and third‐sector organisations

A lack of clear, concise information available for users

also have a key role in signposting people to further

was a complaint among the sample, with many sug‐

information and advice about [DF]. (Newbronner et

gesting they would like to receive current and timely

al., 2011, p. 3)

information on changes in rates of pay, details on what exactly the [DF money] can be used for and in‐

The effects of a lack of information at these various points of con‐ tact is evident in the literature. In a recent study, for instance, Velzke

formation relating to employment and employment legislation. (p. 50)

(2017) interviews professionals and front‐line care workers in Scotland to identify challenges related to the implementation of self‐directed

These interviewees suggested that moving forward, the

support, a DF initiative in Scotland. One of the most significant chal‐

scheme should include mechanisms to enhance the exchange of

lenges identified by these workers in terms of helping older people

information to clients, including the development of tools like

transfer to a DF scheme is that “it is difficult to independently plan

employer templates and lists of approved carers in the local area

care if service availability is unknown” (Velzke, 2017, p. 18). Without

(McGuigan et al., 2016, p. 48). Manthorpe et al. (2015) similarly

access to information about the services available to them, clients are

found in their scoping literature review that a lack of information

unable to exercise choice fully; their choice is limited by the options

and legal clarity for practitioners like social workers, as well as

known to them. Norrie, Weinstein, Jones, Hood, and Bhanbro (2014)

for older people and family carers, is a major barrier to the devel‐

likewise note that of the seven older people and their carers inter‐

opment of DF in Scotland (p. 41). Thus, while it is apparent that

viewed for their study on early user experience of DF in England, “most

“support planning, includ[ing] informing older people about avail‐

expressed limited understanding of how personal budgets worked and

able service options and their costs, helping to identify potential

what they were intended to achieve” (p. 180). This limited understand‐

options, and choosing between these […is] central to the exercise

ing left older people feeling confused, to the point where many simply

of choice on the part of [DF] holders” (Rabiee et al., 2016, p. 455),

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15


this type of support is not consistently available to DF users across programs and contexts. There are a number of external factors beyond DF program de‐

it was also apparent that these things were not seen as a “good in themselves” or in the abstract, but as a practical means of enabling care and support to be provided in particular ways” (ibid., p. 972).

sign that are likely to influence how much choice is available to users.

In certain contexts, some staff report difficulty distinguishing

These factors include the availability of workers, the quality, and

between DF and traditional services because they feel that clients

availability of pre‐existing services, whether the client lives in a rural

already have choice under traditional models of care provision, or,

or urban setting, whether the client has access to other supports,

conversely, that under DF, client choices do not change. For example,

like family and friends, and so forth (cf. Carr & Robbins, 2009; Gill &

Laragy and Allen (2015) report that some of the senior case managers

Cameron, 2015; Gill et al., 2017; Moore & Jones, 2011; Ottmann et

they interviewed in Australia felt that the DF model is the same as the

al., 2013; Putnam et al., 2010; Ridley et al., 2011; Velzke, 2017). As

“client‐centered care” model already in place, as this model focuses

Ottmann et al. (2013) point out in their systematic narrative review

on client empowerment, including choice over their service provision

of DF in aged care, older people’s support needs and ecological con‐

(p. 221). Gill et al. (2017) report that in their secondary analysis of

texts vary greatly and are shaped by numerous factors including “the

interviews with DF clients, staff, and informal caregivers in Australia,

social, institutional, socio‐historical, cultural and family contexts of

“most of the clients and carers expressed views that the range of

people’s lives” (p. 579); these factors likewise come to shape older

services offered under [DF] were unchanged and that the services

peoples’ choices in practice.

offered were limited to what has been traditionally offered” (p. 482).

Finally, the few studies that directly investigate the positive out‐

Norrie et al. (2014) present a similar finding in their study of DF in

comes of increased choice find that choice is the most beneficial

England, noting that “most [users] did not feel that [DF] had made a

when it enables enhanced care relations (O’Rourke, 2016; Rodrigues

significant difference because their support plan had remained much

& Glendinning, 2015; San Antonio et al., 2009). Gill et al. (2017), for

the same” (p. 181). As Gill and Cameron (2015) summarise:

example, found that clients emphasised the importance of individ‐ ualised services that encouraged front‐line service providers to de‐

The translation of [DF] into a service currently ap‐

velop personalised relationships with them. In this example, “choice”

pears to result in the service looking much like tradi‐

becomes a mechanism for enhancing care relations, and the signif‐

tional community aged care packages, as the primary

icance extends beyond simply choosing how to spend the money.

focus continues to be on domestic services delivered

O’Rourke (2016) corroborates this finding with his article based on

in the home. In fact, both front‐line staff who have

an in‐depth study of older people’s experience using DF in England.

worked with other community aged care packages

Drawing upon in‐depth interviews, O’Rourke finds that:

and [DF] clients and their informal carers who have experienced traditional packages, have indicated that

The locus of personalisation was found to reside

they have perceived little difference, beyond being

within the interpersonal dynamics of helping relation‐

provided with financial reports, along with the possi‐

ships rather than control over the means of procuring

bility of their allocated funds being used to purchase

services. Participants experienced personalization

equipment that they then own outright. (p. 266)

when paid carers perceived and accommodated their special requirements of Self. (p. 1018)

Thus, this literature indicates that the promise of “more choice” in DF programs is not evident to all workers and users in practice, either

This finding, O’Rourke concludes, “also challenges the idea that

because workers already feel that they are practicing client‐centred

the award and use of [DF] will inevitably lead on to the actual experi‐

care, which allows for clients to exercise choice, or because the actu‐

ence of personalisation” (ibid., p. 1019); instead, it appears that expe‐

ally existing options available to DF users do not differ from the options

riencing personalised care, in which the client can most fully exercise

available to them under traditional long‐term care support programs.

choice and control, is intimately tied to the relation between client

Finally—and perhaps most significantly—it is unclear if all older

and care worker. San Antonio et al. (2009) make a similar conclusion

people want more choice in light of the increased administra‐

in their study of older DF clients in Arkansas, noting that “Arkansas

tive, and sometimes legal, responsibilities it entails (Low, Chilko,

elders chose DF care because of the benefits of hiring and super‐

Gresham, Barter, & Brodaty, 2012; Ottmann et al., 2013; Rodrigues

vising their own family or nonfamily directly hired caregivers” (p. 8).

& Glendinning, 2015). For instance, Moran et al. (2013) find in their

Furthermore, they note that “consumers felt that their directly hired

mixed‐method study of outcomes for older users of DF in England

family and nonfamily care‐givers took good care of them and provided

that while some users found the increased responsibility exciting and

warm, sensitive care” (ibid., p. 13), particularly when contrasted to care

rewarding, others found it challenging. Norrie et al. (2014) found that

in institutional settings.

the majority of older DF service users interviewed for their study on

Woolham et al.’s (2017) study compares the outcomes of older

DF in England were not keen to manage their own budgets. Moore

DF clients and those receiving care via a managed personal budget

and Jones (2011) make a similar point in the British context, noting

in England. They note that while “direct payment users appreciated

that social care staff involved in the West Sussex County DF pilot

the flexibility, choice, empowerment and control offered by [DF …],

project found that many older people were uncomfortable talking

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about money at all, while Thornton (2011) suggests that in the ab‐

et al. (2017) nod to some of the possible consequences of increased

sence of effective support, many older people will also find the legal

choice for safeguarding, noting that “on a conceptual level, the link

risk associated with hiring employees unacceptable.

between increased choice and control through [DF] and better safe‐

The literature indicates that a far larger number of clients are

guarding outcomes does not seem to hold true” (p. 307). The authors

interested in self‐directing aspects of their care, like choosing

do not present further analyses that contribute to understanding

their care‐givers and the care schedule. For instance, Ottmann

better the relation between increased choice and user risk.

and Mohebbi (2014) report that “it appears that older Australian’s

Within this group of articles, there is also a tendency to mention

preferences regarding self‐direction are only in a very limited sense

that DF enhances choice, without providing evidence that this is the

motivated by a voucher/cash option and greater financial and ad‐

case or commenting on the care outcomes of increased choice. For ex‐

ministrative control and responsibility. [Instead] a far larger number

ample, Doty et al. (2010) write that the DF approach gives users and

of clients were interested in self‐directing aspects of their care, re‐

their supports “the opportunity to exercise greater choice and control

sulting in greater decisional authority and better and more direct

over the publicly funded long‐term care services and supports they re‐

access to services” (p. 609). In a similar vein, McCaffrey et al. (2015)

ceive” (p. 49; see also Ismail et al., 2017). Waters and Hatton (2014)

find that the older people they interviewed in their Australian‐based

simply report that the English participants they surveyed expressed

study wanted to influence the care schedule and caring activities (p.

they had more choice due to their participation in DF programs (p. 36).

658); while in the English context, Rodrigues and Glendinning (2015)

Thus, while each of the articles in the Inferred Choice Studies

find that the older people in their study “emphasized how important

mentions choice, these articles do not present a nuanced assess‐

the relational aspects of care were to them” (p. 661), as opposed

ment of the outcomes of choice and of how choice manifests in vari‐

to taking responsibility for the managing of budgets. These findings

ous DF contexts. Nonetheless, choice is, in these articles, inherently

suggest that a pause may be needed; as Woolham, Daly, Steils, and

tied to—and often a celebrated aspect of—DF programs.

Ritters (2015) state, perhaps it is time to reconsider “whether [the DF model is] the most appropriate way of delivering personalised social care for all older people” (p. 157). Indeed, it may be time to

4.3 | Other focus studies

consider whether there are other ways to organise continuing care

Only a small subgroup of the articles assessed in this metasynthe‐

that bring the benefits of enhanced choice for older people without

sis do not mention choice in relation to DF (Table 1, references

the added responsibilities of fully managing budgets.

42–47). Specifically, Delp, Wallace, Geiger‐Brown, and Muntaner (2010) do not discuss choice in their article exploring the determi‐

4.2 | Inferred choice studies The articles that do not focus on choice (Table 1, references 29–41)

nants of job satisfaction for home‐care workers employed in a DF context in Los Angeles, California, nor do Mitchell, Brooks, and Glendinning (2015) investigate choice in their article exploring the

still infer, and even explicitly connect, DF to enhanced choice. In this

role of carers in DF in England. The studies of Delp et al. (2010)

grouping choice is not interrogated, but rather simply presented as

and Mitchell et al. (2015) focus on the workers, a rarity in this lit‐

inherent to DF programs. This literature generally asserts that DF

erature, and this unique emphasis may explain why the emphasis

care “is intended to improve process and outcomes at the same or

on choice wavers. Four other articles (Duffy, 2011; McGuigan et

lower cost by allowing persons with long‐term care (LTC) needs to

al., 2016; Moore & Jones, 2011; Sciegaj et al., 2016) included in

choose and have more control over their services, either by access

this group mention choice, however only in briefly citing findings

to cash or to a personal budget for LTC” (Friedman, Wamsley, &

from another article published before 2009. For instance, Duffy

Conwell, 2015, p. 88), without assessing the mechanisms by which

(2011) reviews the historical evolution of personal budgets in

choice is enhanced.

England and includes a table summarising the results of Hatton

In their article on carers’ roles in the needs assessment, Brookes, Mitchell, and Glendinning (2017) note that the personalisation

and Waters’ (2008) InControl report which assessed the early im‐ plementation of personal budgets in England.

agenda put forth by the English Department of Health requires “a

Finally, it is interesting to note that of the 47 articles included in

transparent and equitable system for allocating resources to carers

this metasynthesis, only six were void of any discussion of choice.

in their own right, with maximum choice and control for carers over

This, in itself, demonstrates that choice and DF are overwhelmingly

how these resources are used” (p. 150). The authors do not focus

associated, either implicitly or explicitly, in the literature.

on whether this goal is achieved; rather, their article is concerned with the extent to which carers are involved in service users’ needs assessments. Low et al. (2012) also allude to some of the issues de‐

5 | D I S CU S S I O N

scribed more fully by the Choice Studies, but do not dwell on these issues. For example, the article mentions that depending on the

As is evident in our analysis, the concept of “choice” emerges in the

structure of the particular DF program, the amount of choice and

literature as a normative goal with presumed benefits among studies

responsibility offered to consumers will vary (ibid., p. 47), although

of DF. Particularly when discussing DF for older people, it is essential

they do not elaborate on the consequences of this variation. Ismail

to consider which mechanisms improve care outcomes rather than

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focusing on which mechanisms increase choice writ large. In the case

normative framework from which to guide DF research, specifically

of DF, increased choice comes with increased legal responsibility and

by focusing on other issues highlighted in the DF literature, like re‐

often administrative tasks that many older people and their supports

sponsibility (Low et al., 2012) and the quality of the caring relations

find burdensome. Furthermore, there is no evidence that choice over

(O’Rourke, 2016; Rodrigues & Glendinning, 2015). A critical, political

all elements of one’s services is the mechanism that improves care

ethics of care also allows for us to consider wider socio‐political‐

experiences. Indeed, there is some evidence that it is the ability to

economic factors. This can facilitate analyses of how DF interacts

choose and schedule one’s workers that has the greatest potential

with external factors, like the market supply of care services in dif‐

to improve experiences of care (cf. McCaffrey et al., 2015; O’Rourke,

ferent contexts, the working conditions of care workers, and how

2016; Ottmann & Mohebbi, 2014). Choosing and scheduling care

consumer models of care fit into the wider political economy. Our

workers allow for enhanced, individualised relationships, can enable

suggestion to adopt alternative normative frameworks to explore

culturally or otherwise identity‐sensitive care dyads, and addresses

DF programs is not a call to abandon choice. Rather, we wish to as‐

one of the major complaints of conventional home‐care arrange‐

sert that there is merit in exploring these programs with an alter‐

ments, that is, inconvenient schedules. This more tentative approach

native lens that may better allow us to tease out the mechanisms

to choice emphasises what more choice does for the experiences of

through which DF enhances, or not, the quality of care relations and

those who need support and their families. This tentative approach

the experience of long‐term care supports for clients, workers, and

may also shed light on why certain efforts to mainstream DF and the

informal care supports alike.

principles of consumer‐direction have not necessarily resulted in the

Finally, it is worth commenting on the international trend to‐

same outcomes across contexts. In teasing out how more choice en‐

wards mainstreaming the principals of consumer‐direction (e.g., in

hances care experiences, we may be able to understand more clearly

Australia) and decoupling the patient‐centred ideals from the pol‐

why different outcomes result from various DF program designs.

icy mechanism of cash transfers. We have found that cash transfers

It is also essential, however, to consider how the emphasis on

and control over the entirety of one’s services do not necessarily

choice relates to care workers and not just those in need of support.

lead to improved care, yet there are elements of this mechanism

In DF discourse, choice as a normative goal seems to be limited to

that are essential to improving experiences of home care. As policy

client choice, without consideration for workers’ needs, desires, and

frameworks evolve towards mainstreaming, it is imperative to hone

preferences. Yet again, even if choice for workers were incorporated

in on the transformative potentials of increased choice to ensure

in such discourses, it will not serve as a panacea for issues in home

that these elements are retained in broader applications of the con‐

care. For instance, a more balanced approach to choice in DF that fo‐

sumer‐directed principles.

cuses on hiring and scheduling workers still does not offer solutions to worker shortages, high turnover, policy efforts to standardise care worker credentials and education (Kelly, 2017b), or challenging

6 | CO N C LU S I O N S A N D I M PLI C ATI O N S

working conditions such as precarity, invisibility, lack of reporting infrastructure for cases of harassment, lack of “back up” workers

Our critical qualitative metasynthesis sought first to identify the

for sick days, split shifts, and unpaid transportation to rural locales.

core concept in the literature on DF programs for older people in

“Choice” also provides little space for dealing with dilemmas in which

the United Kingdom, Australia, and the United States. This concept,

clients’ preferences conflict with workers’ preferences. On the one

we suggest, is “choice:” choice appears in the majority of the lit‐

hand, focusing on choice for clients alone neglects the political and

erature reviewed as a primary concept and topic of concern and is

economic issues that shape workers’ lives, while, on the other hand,

deeply intertwined with other central research topics related to DF

a more balanced approach to choice which includes both the prefer‐

programs. We then sought to explore this core concept more fully,

ences of clients and workers may result in tensions.

interrogating how “choice” frames and is mobilised in these studies

Given these limitations, it may also be worth considering what

of DF programs. We found that the majority of the studies of DF in

might be gained by exploring other normative criteria as both the

our metasynthesis position “enhanced choice” as a presumed good,

lens to assess and study DF and as guiding principles in DF pro‐

and do not robustly explore or explicate, conceptually or practically,

gram design and implementation. One possible alternative norma‐

the relationship between enhanced choice and care.

tive framework is a critical, political ethics of care (Robinson, 1999;

Feminist and disability scholarship have thoughtfully introduced

Tronto, 1993). The ethics of care is a lens which starts from the on‐

and evolved a number of proposals for how to conceptualise care.

tological assertion that we are relational beings (Hekman, 1995, p.

Scholars explore care as an alternative moral framework or politi‐

73) and that both caregiving and care receiving are fundamental to

cal orientation that contrasts justice‐based models (Robinson, 1999;

our lives. As such, the ethics of care is concerned with the political,

Sevenhuijsen, 1998); as a gendered and devalued form of essential

social, and economic contexts in which care activities unfold, and

work that helps sustain our worlds (Tronto, 2013); and as a form

the ways in which care relations both reflect and disrupt exploitative

of oppression against marginalised bodies (Thomas, 2007), among

and oppressive social relations. The ethics of care can provide space

other understandings. This scholarship emphasises different nu‐

to consider choice—that is, what social relations impede or facilitate

ances, tensions, and potentials of care that extend far beyond choice

choice, control, and autonomy—while also providing a more robust

and control. In fact, one of the enduring insights that crosses this

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scholarship is the need to move away from individualised under‐ standings of care (which are perhaps reinscribed through a focus on “choice”), and to understand how care can both sustain and trans‐ form dominant social structures. Recent work also focuses on the tensions of care and relation‐ ships to violence by foregrounding the reality that care can be at once violent and rewarding (Kelly, 2017a). Indeed, the glossy appeal of “choice” in DF home‐care initiatives can obfuscate the complex‐ ities in working conditions, interpersonal relationships, and the messy politics of giving and receiving support in developed, neolib‐ eral healthcare contexts. These nuanced understandings of care have evolved over an extended period of time and series of debates, and yet the studies surveyed in this metasynthesis largely do not reflect the insights of this scholarship. Perhaps DF programs could be de‐ veloped and evaluated through a lens of a critical, political ethics of care (FitzGerald Murphy, 2017; FitzGerald Murphy, forthcom‐ ing; Hankivsky, 2004) or from rejections of care from disability perspectives that serve as valuable interventions in the ways we presume that home care should be. Starting from these different conceptual framings may point to new avenues of research and move the literature beyond the discourse of “choice” identified in this critical qualitative metasynthesis. Indeed, perhaps we are ask‐ ing the wrong questions about why DF is so often preferred over conventional home‐care delivery.

AC K N OW L E D G E M E N T S The authors thank Yuns Oh, Aliya Jamal, and Lea Soliman for excep‐ tional research support. This research was funded by the Canadian Institutes of Health Research, Grant Number 148856.

E N D N OT E S 1

This study is part of a larger research project exploring DF programs in Canada. Within this larger project, the purpose of this metasynthesis is to explore issues, themes, and concepts prevalent in the DF literature in international contexts; Canada was not included for this reason.

2

“Continuing care” refers to the range of services available to those who require ongoing, long‐term support. These services can span from DF home care, traditional home care services, assisted living, private/public residential care, and other options dependant on localized contexts.

ORCID Maggie FitzGerald Murphy

http://orcid.

org/0000-0002-2201-7394 Christine Kelly

http://orcid.org/0000-0002-3316-3258

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How to cite this article: FitzGerald Murphy M, Kelly C. Questioning “choice”: A multinational metasynthesis of research on directly funded home‐care programs for older people. Health Soc Care Community. 2018;00:1–20. https:// doi.org/10.1111/hsc.12646