Introduction

Family carers are heterogeneous and represent a significant unpaid labour force that provides the vast majority of care not only to older adults, but also to citizens of all ages with chronic health conditions or physical/mental disabilities. As populations age, life spans extend and the prevalence of chronic diseases and disabilities increases, governments have come to rely on these carers to reduce the demands made on formal health-care systems. Many family carers juggle multiple demands on their time, including paid employment and personal and other family responsibilities. While carers can, and do, derive satisfaction from this work, the negative impacts on carers’ physical and mental health, social relationships, and employment and financial well-being are well documented (Keating and Eales, 2017).

With the rising demand for, and pressures on, family carers, calls for greater sustainability in care have emerged. In the absence of results from an ongoing systematic review of the literature (Khayatzadeh-Mahani and Leslie, 2018), these calls for and efforts at improving the sustainability of care can be grouped into three key intervention domains:

• policy initiatives that enshrine rights, alter labour laws and provide other statutory or regulatory accommodations for carers (Yeandle, 2016);

• education and awareness campaigns; and

• technology development focused on monitoring, social networking and other tools to assist carers and so mitigate what has come to be called the ‘burden of care’ (Mortenson et al, 2018).

The latter of these – technology – has been identified as particularly important in efforts to make caregiving sustainable. This article examines the divergent notions of sustainability that are inherent in much of the technology developed for, and marketed to, family carers. The core of our argument is that drawing these divergent views together is necessary if technology, and potentially policy and education, are to deliver on their sustainability promise. An introductory question as we consider these divergent views is one of clarification: sustainable for whom?

Three views of sustainability

For governments, the search for sustainability tends to focus on mechanisms – laws, policies, practices and technologies – that encourage carers to sustain and extend their efforts and so protect the finite resources of the state’s health- and social-care systems. From this perspective, frameworks have been developed to ensure the delivery of sustainable and inclusive support for carers (Cass et al, 2014; Fast, 2015).

For technology developers, a consistent customer base – a user group that adopts and pays for a product over the long term – is at the heart of what makes business sustainable. Indeed, achieving this sort of sustained use is the ultimate goal of the user-centred design (UCD) principles that govern the design of technology and products in our era. Three decades after its introduction as a concept, a robust UCD literature describes the aims and methods of moving beyond mere programming into fully engaging end users and carefully considering the ‘context of use’ in which nascent technology products will exist. From the perspective of a technology developer using UCD, designing with people, not for them (Huldtgren et al, 2013), is the key to achieving sustainability.

Finally, family carers, who generally come to their work with a sense that it is a filial or spousal duty and/or cultural expectation expressing love and reciprocity (Yeandle et al, 2017), tend not to think in terms of sustainability until they are unable to juggle their various responsibilities successfully (Fast, 2015). Their care work is simply ‘what needs to be done’. Seen as an obligation rather than an option, it is neither sustainable nor unsustainable; it simply is. Finding the supports that allow the benefits and satisfactions of their care work to outweigh its negative aspects is central to what might be called sustainability from their perspective. Developing technology that ties these three notions together is critical to sustaining care activity, creating a sustainable business model and making carers’ lives sustainable. We argue that a key impediment to finding this point of intersection among government, carer and developer perspectives is a tendency to focus on needs.

The problems with ‘needs’

Some of the difficulty associated with needs stems from a lack of clear definition. Despite being a bedrock concept in many disciplines, there is remarkable heterogeneity in how needs are defined and operationalised. In the case of technology design for carers, there are particular definitional challenges in the concept’s negativity, urgency and specificity. Where the Oxford English Dictionary defines a ‘need’ neutrally as a ‘necessity or requirement’, Webster’s dictionary acknowledges the more negative sense that a need is ‘a condition marked by the lack of something requisite’. This sense of deficit has followed the word into its application in fields such as education, where it is seen as the discrepancy between current and desired outcomes, or the gap between the present and a desired future state. Similarly, Donabedian’s famous view of needs in health care focuses on ‘a disturbance in health and wellbeing’ (Donabedian, 1973). In addition to implying a deficit or disturbance, the use of the term ‘need’ often focuses attention on short-term urgencies that lend themselves to specific, process-oriented remedies (Toyama, 2017).

One of the problems with the concept of ‘need’ is that it tends to be associated with a specific definable issue of a basic nature. We are thinking here of the foundational layers of Maslow’s famous hierarchy: food, water and shelter. In our research experience, the ability to point to a specific and basic gap in the available technology, or capacity for technology to be helpful, is not one that most carers have. They do not see themselves as having urgent, well-defined and basic technology needs. Like those they care for, theirs is a complex chronic challenge into which various layers of technology are already interwoven. Carers experience their work as a mix of overlapping commitments, joys and stresses, largely driven by the needs of the cared-for person. There is rarely an immediately obvious remedy to this tangle of ‘doing tasks’ and ‘being in a relationship’ (Keating et al, 2018). A key challenge here is that a focus on urgent well-defined needs lends itself to discussions of improved efficiency at task work, but it leads away from discussions that acknowledge carers as embedded in complex relationships (Keating et al, 2018). Such one-sided design discussions are, we argue, unlikely to produce sustainable technology.

If ‘need’ thinking tends to assume urgent, definable deficits and to privilege basic task work over complex relational issues, it can also embed social hierarchies that are similarly antithetical to the principles of UCD targeting sustainability. A particular example of this can be found in the embrace of ‘normative needs’ in public health- and social-care service provision. For carers, normative needs have been coded into standards that measure levels of burden, or assess mental health. These measures tend to be collected in self-reported tools and surveys, and a carer’s answers, depending on where they score relative to the standard, could well lead to more or less support being offered. Under this approach, persons who fall below certain externally developed standards are defined as being ‘in need’. However, the ability to develop and impose these standards, and so to classify people as more or less needy, is a clear exercise of power – power that is driven by policy and funding decisions (Bee et al, 2015). Again, the central principles of UCD in the service of sustainable caring would seem to be at odds with needs as a theoretical concept and practical point of action in designing technology. ‘Need’ tends to place power in the hands of public health commissioners, social service case managers and assistive technology designers rather than their patients, clients and end users. Indeed, in our experience, to speak of technology needs, with all the assumptions, negative connotations and power imbalances that this talk carries, is counter-intuitive for carers. They simply do not recognise their chronic, dynamic, unpredictable, personal and complex worlds in design conversations that emphasise acute, static, expert-imposed and practical instrumental solutions.

Carers bring a wide range of experiences to the ever-shifting landscape of caring for those with chronic health conditions, each of them starting and progressing along a unique unpredictable trajectory of life changes, disease progression and personal growth. Relationships with the care recipient, with carers’ own family members and friends, and with health-care and other service providers add other layers of emotions and frustrations to the care journey (Keating et al, 2018). Thus, without (1) a consistent starting point for the caregiver journey, (2) a consistent rate of progress on that journey for either the carer or care recipient and (3) a sense of either urgent necessity or singular deficit among carers, the concept of ‘need’ appears less than fit for the purpose of developing sustainable carer technology. Simply put, need as a construct is insufficiently sensitive to the carer’s context and needs to be challenged if we are to move forward.

Shifting from ‘needs’ to ‘goals’

How, then, might UCD focused on sustainability for governments, technology developers and carers proceed? Drawing on a shift already begun in the international development literature (Toyama, 2018), we argue that ‘goals’ ought to be the starting point of sustainable design work. This is, as we imagine it, a shift from the lower levels of Maslow’s hierarchy towards its pinnacle: a shift from basic needs to strengths-oriented goals. A goal, in this sense, is aspirational: ‘what an individual hopes will happen in the future’ (Gorard et al, 2012: 13) – an abstract value or belief regarding future plans. Unlike immediate needs, goals are empowering and point towards long-term, growth-focused and multifaceted solutions rather than short-term, task-focused and closely defined deficiencies (Toyama, 2015). Similarly, in their focus on the individual end user, goals offer a remedy to the power imbalances of needs. The power of closely defining the problem that technology will fix is taken from the designer and given to the end user. Rather than externally, expert-defined categories of need that focus exclusively on task work, goals are internally derived reflections of the complex task and relationship work that make up the carer’s context of use. Taking goals as the starting point gives relationships a place, alongside tasks, in the technology design discussion.

In this rebalancing of task and relationship work in the design process, care made more efficient or effective by technology becomes a means to an end, rather than the end in itself. A smartphone application might improve the efficiency of care coordination, for example, but its primary purpose – as envisioned by the carer – might be to free up time for other activities in line with goals such as reconnecting with friends, spending time outside the home or having time to focus on the more positive aspects of the relationship that they share with their care recipient.

Rather than developing technology that is merely efficient within the confines of task work, focusing on goals becomes a tool for leveraging individual strengths, promoting hope, offering meaningful choice and improving social connectivity. In this way, carers’ capacities, resiliencies, knowledge, skills and connections are strengths that technology could bolster. In this sense, adopting a goals approach to sustainable care generally, and technology design for sustainable care specifically, is a particular operationalisation of strengths-based thinking. Although infrequently implemented in practice, some research has found that strengths-based thinking positively influences family carers by creating opportunities for closer relationships, increasing commitment to care recipients and improving social networks that further enhance family carers’ quality of life (Peacock et al, 2010). The goals approach that we are advocating here not only shares this focus on the complexities of the context of use, but also provides practical guidance for making the vague but potent idea of UCD real while co-designing with carers. Empowering carers to think through their goals, rather than their needs, is key to developing technologies that draw together policymaker, technology developer and carer perspectives on sustainability. A focus on goals is, we argue, central to ensuring that family carers sustain their efforts, sustain their use of technology and strike a sustainable balance between the positives and negatives of their unpaid care work.

Conclusion

In sum, the move towards goals takes the technology design process away from short-term solutions that address urgent stable needs for a defined homogeneous population. Expanding the conversation to reflect the chronic, dynamic and heterogeneous reality of carers’ lives allows them to discuss their desires for harmonious relationships and life-empowering solutions, as well as improving care task efficiency. While there is, indeed, much for carers to ‘do’, our argument here is that attention must also be paid to how those same carers ‘are’ in their relationships. Affording carers the space to think about the relationship and socialisation aspects of their lives, rather than just the basic tasks of providing care, encourages them to envision a better balance between their complex competing commitments. Designing technology with goals in mind is imperative if technology is to be sustainable. Sustainability – from government, technology developer and carer perspectives – flows from empowering carers in the pursuit of their goals. For carers who have little time to acquire and become proficient with a new technology, a focus on goals is, we argue, more likely to result in: the sustained care effort that governments want; the adoption and sustained use that technology developers seek; and, perhaps most importantly, the positive rebalancing of experiences that makes caring more likely to be sustainable for carers.

Funding

This work was supported by the AGE-WELL Network of Centres of Excellence (NCE).

Ethical issues

The study was approved by the Conjoint Faculties Research Ethics Board at the University of Calgary, Canada.

Acknowledgement

Dr. Mortenson’s work is supported by a Canadian Institutes of Health Research New Investigator Award.

Conflict of interest

The authors declare that there is no conflict of interests.