Supporting people to make decisions about their care

Introduction

Everyone in Wales deserves to make decisions about their own lives. Sometimes, people accessing care and support services feel that their voices don’t really matter or that they don’t have control over their own care and support. This feeling of powerlessness stands in contrast to one of the fundamental principles of the Social Services and Well-being (Wales) Act 2014, which states that every person accessing care deserves to have a voice in, and control over, their support.

Research evidence shows that having more control over one’s own life and care improves mental and physical well-being in people accessing care and support (Krist et al., 2017; McGovern, 2015; Kim and Park, 2017; Kloos et al., 2019; Doyle et al., 2013; Bunn et al., 2018; Tambuyzer et al., 2014). There’s also some evidence that staff working in care settings where the people they support have more autonomy similarly experience higher rates of well-being (Krist et al., 2017; McGovern, 2015). This evidence summary presents research on how to support adults to make decisions and have control over their care.

Social theory can help us think about what it means for people to have control over their lives and how having that control can increase well-being. Social theory here means a set of ideas that help us understand why things happen in the way they do. Social theory also helps us to think about how we might promote change. In this evidence summary, we look at how things like providing people with enough time to make decisions, building good relationships, having a nuanced understanding of risk, and providing accessible information can empower people to make decisions about their care.

Key principles related to decision making in social care

In this section we introduce two key principles that relate to supporting people to make decisions about their care: the social model of disability and capacity.

The social model of disability

The social model of disability was originally developed in the 1970s by the Union of the Physically Impaired Against Segregation (Chapman, 2023). They defined the social model of disability as in contrast to the individual or medical model of disability. Within the individual or medical model, the care and support disabled people access is focused on “fixing” a person. By comparison, the social model doesn’t present individual disabled people as having something wrong with them that needs to be fixed.

Instead, the social model demands that disabled people have the right to participate fully in society and that it’s the world around them that should be made accessible. Making the world accessible can include looking at what stops people from being able to make decisions about their lives (Tarrant, 2022). The social model has since been adopted widely by disability organisations in Wales and beyond. More information about the social model of disability can be found on the Disability Wales website.

Capacity

Sometimes it can be hard for people to make decisions for themselves. Having mental capacity means being able to understand, retain, weigh up, and communicate the information that’s needed to make decisions (Mind, 2024). The Mental Capacity Act (2005) can make it seem like the question of capacity is a binary one. Meaning, either someone is able to make decisions or not.

The researcher Lucy Series (2015) argues that we need to think in a more complex way about how to make sure people’s rights are protected when they have limited capacity. She argues that we shouldn’t see lack of capacity as an individual deficit that makes a person unable to make decisions. Instead, we need to establish a support paradigm, which is based on the social model of disability and enables everyone to make decisions to whatever degree they can. In this view, the role of people working in social care is to support people to look at what barriers and discriminatory attitudes they may be facing that limit their decision making options.

Similarly, other researchers have described the need to understand capacity as a “relational phenomenon”. This concept was developed in a study by McDaid and Delaney (2011). They interviewed people who’d been in psychiatric treatment. They found that people had often been very aware of the process of losing their capacity to make decisions. People described the experience of feeling themselves lose capacity as extremely distressing. They also described the experience of having other people make decisions for them as negative and disempowering.

McDaid and Delaney (2011) found that the negative experience of losing capacity was made less traumatic when people felt they were given information in accessible ways. This was also the case when they felt the person making decisions on their behalf was trustworthy. In this context, capacity became relational, in that it was something that people could develop in relationship with their environment and the people around them.

What does research tell us is important when supporting people to make decisions?

Research shows that there are a few important factors to consider when it comes to supporting people to make decisions about their care. These include:

• the role of workers
• awareness and training
• providing time
• positive risk taking
• communication and access to information.

The role of workers

A review of different studies found that relationships were the most important part of what made care good or bad for older people using care services (de São José et al., 2016). Social care workers therefore have an important role in enabling people to make decisions about their care. In this section, we present research that looks at interactions between social care workers and the people they support, to find out when these interactions are empowering or disempowering.

A study investigating assisted decision making in older people’s care in Ireland found that strong connections between staff and people using care services were a key factor in enabling decision making (Donnelly et al., 2021). However, busy environments and time restrictions often made it difficult to find the time to build these relationships.

Other research also focuses on the importance of good relationships between people who use care services and social care workers. In one study, researchers interviewed members of self-advocacy groups for people with a learning disability in Catalonia (Spain) (Fullana et al., 2019). Self-advocacy groups are groups of people who work together to advocate for their rights collectively. Fullana et al. (2019) found that good relationships with paid support workers made self-advocates feel like their choices were supported by staff. However, they also found that advocacy group members sometimes felt that paid workers blocked their decisions or that they were controlling.

Even when specific spaces are set up to empower people to make decisions about their lives, interactions taking place in those spaces can still lead to people’s choices being limited. One study that investigated dynamics between support staff and people with a learning disability living in a group home found that often the intent to empower someone and the actual actions taken to achieve this didn’t always match up (Jingree et al., 2006). For example, in meetings which were meant to empower people to speak up, often those who wished to voice their concerns weren’t given the space to speak by staff who were chairing. Instead, these staff members would nominate other people to speak, moving the conversation away from the person and their complaint (Jingree et al., 2006).

The researchers also found that instead of enabling people at the group home to talk about their preferences and make suggestions, staff would often steer conversations towards the options they preferred. They found that staff sometimes felt that they “knew better” than people living in the group home and therefore didn’t give them enough space to come to their own conclusions (Jingree et al., 2006).

Finnlay et al. (2008) observed that the choices given to people with learning disabilities are often limited because of the way things are phrased. Even without explicitly limiting the options available to people, staff who are supporting people to make decisions can influence what they decide. This might be because of presenting only specific options, portraying the outcomes of different choices in particular ways, or by offering (or not offering) support in overcoming practical issues.

Importantly, this evidence shows us that when workers disempower people this often isn’t because of them being incompetent or uncaring. Instead, it makes sense to understand workers’ actions as resulting from conflicts between different values that they draw upon at work.

Values and understanding

Social care workers often have to balance competing values in their day to day work. Jingree et al. (2006) suggest that the negative dynamics observed in their study, outlined previously, might arise from staff experiencing a conflict between enabling people to be empowered, on the one hand, and their duty of care, on the other. This duty of care can lead workers to want to create the kind of environment that they think is best for people by avoiding conflict and trying to keep discussions positive.

Similarly, Finnlay et al. (2008) wrote about how workers balanced conflicting expectations. Staff were expected to make sure all the people they worked with had eaten, used the toilet, and were clean at shift changes. Similarly, there were reports of staff discouraging people from doing things themselves because they were seen as not having the right skills or because there were worries about hygiene. Supporting people to have more autonomy added to this workload and slowed some of these processes down. Supporting people to make decisions themselves, rather than making decisions for them, would have meant not being able to fulfil all the other duties that were expected of them. In order to make it possible for social care workers to properly support people, it’s important to tackle these attitudes and cultures.

We’ve produced resources that can be helpful for social care staff who support people to make decisions about their care. These include:

1. Practice principles, Balancing risks, rights and responsibilities for adults: a positive approach to risk (Social Care Wales, 2020).

These 12 practice principles offer practical support to help balance the wishes of people who need support with environmental factors such as family support, policies, and resources. The principles state that “decision-making should begin and end with what matters to the person”.

2. Understanding an outcomes approach (Social Care Wales, 2022)

This resource includes a guide to supporting people who use care services to develop their own outcomes. This means finding out what a person wants to achieve and supporting them in these goals.

Providing time

Being able to make decisions means having enough time to process information. Decision making is also not a single act, but an ongoing process. This means that people will need ongoing support to make decisions.

Taylor and Donnelly (2006) spoke to professionals working with older people living in long term care settings to find out how decisions were made. One obstacle to older people making decisions about their long term care was that they were often made in response to a crisis, for example after a fall. Sometimes decisions also had to be made in emergency situations. This was because funding sometimes wasn’t available to support people with lower support needs until their situation became urgent or because older people were reluctant to accept more support earlier on.

According to Taylor and Donnelly (2006), the “crisis nature” of decision making processes often reduced options and made it harder for decisions to be made about someone’s care. In a co-produced project supporting people with learning disabilities to make decisions about vaccines, Public Health Wales and Learning Disability Wales (Public Health Wales, 2023) also identified having enough time to make decisions as an important factor. The people with a learning disability who contributed to this work talked about how they often weren’t given enough time to make decisions about their health.

Other researchers have argued that care and support planning should be an ongoing process. This process should provide an opportunity for everyone involved to consider what’s happened, think about what may happen next, identify personal needs and goals, discuss options, and decide how goals will be met (Eaton et al., 2015). This process requires ongoing communication between care providers, the person using care and support services, and their families/carers. This ensures the right decisions are taken at the right time, and that decisions can be altered over time as and when the person’s needs or preferences change (Bunn et al., 2018; Harrison Dening et al., 2019).

Positive risk taking

Positive risk taking has received considerable attention in the Welsh context. A report on barriers and enablers to positive risk taking and shared decision making can be found on the Insight Collective website (Blood and Wardle, 2024).

James et al.’s (2017) evaluation of a pilot project on “named social workers” in England looked at the way that ideas of risk and danger often limited the freedom of people with a learning disability. They argued that worries about risk often led to paternalistic attitudes and restrictions on how people lived their lives. Having a paternalistic attitude means thinking you know what is best for someone else. They argue that social workers’ training must be grounded in the social model of disability so that they can support people to remove the barriers they face in making decisions about their own lives.

As Jingree et al. (2006) found in their study, some social care workers experience a conflict between their aims to provide good care and to facilitate people’s agency. This can pose a particular issue when it comes to people making decisions which pose a real or imagined risk in the eyes of others. In this context, the concept of “positive risk taking” can offer some options to support people in an empowering way. Positive risk taking involves identifying both the potential positive outcomes for an individual and the potential harms that might occur if a risk is taken (Field et al. 2024). Looking at positive risk taking concepts and how they are applied in practice, Seale et al. (2013) argue that ways of working with people with a learning disability that embrace risk can lead to more creativity and higher well-being.

Positive risk taking can help us understand how best to support people in making day to day decisions as well as important life decisions. Finnlay et al. (2008) show that focusing on the big decisions in people’s lives can sometimes overshadow the small decisions that are also meaningful to them. They use an example of a residential care home, which changed its way of serving food to show the importance of allowing people to make small decisions. The care home no longer prepared plates of food for everyone and, instead, placed food in the middle of the table. This change gave people living in the care home a choice of what and how much to eat. This change, the researchers argued, was not easy for support staff. They worried that people might over-eat, destroy crockery, or make too much of a mess. In order to facilitate the people they supported to have more agency over their meals, the support staff needed to overcome their own worries about potential risks.

Small changes like this may not be easy for social care workers to make but they can be powerful in terms of giving people more control over their own lives. In terms of management and training of staff, Finnlay et al. (2008) argue that staff need to be assured that sacrificing some amount of order and cleanliness, so that people can make more decisions about how they wanted to live, won’t get them into trouble.

There are, however, concerns around the use of positive risk taking in other settings. Researcher Lucy Series (2022) has catalogued several instances where people in severe distress have been turned away from mental health services on the basis that they have capacity. Series (2022) references several accounts by people who have experienced suicidal ideation and report being told that they “had capacity” to take risks instead of being given the support they asked for.

The survivor activist and researcher Wren Aves (2022) carried out an online survey of people who were current or former mental health patients who had been denied care on the grounds that they had the capacity to make decisions. Aves received 211 responses from people who described significant distress and harm arising from contact with mental health services. While more robust research into the use of positive risk taking in mental health services is necessary, this survey indicates some potential ethical risks that practitioners need to be aware of. People should be enabled to make decisions about their lives, even when those supporting them don’t agree with that decision. When people are asking for help and saying they aren’t able to make decisions for themselves, they should be believed and not put in danger on the grounds that they can make decisions about their own life. This includes when a person is aware that they’re suffering a mental health crisis and suicidal ideation.

It's also important to acknowledge that sometimes people accessing support are at serious risk. Situations like abuse, neglect or domestic violence are not risks that should be embraced.

Communication and access to information

Effective communication is another big theme in the research on decision making in social care. Finnlay et al. (2008) identified communication issues as a major obstacle to making sure people can have control over their lives. They found, for example, that staff working in residential care homes would often overly rely on verbal communication, even when people preferred other approaches.

Some studies have found good results with exploring what effective communication with people accessing care and support looks like on an individual level. This includes using methods like videos, pictures, and plain language reading materials as appropriate (Nilsen et al., 2022; Davies et al., 2019; Haroon et al., 2022). For people with a learning disability, easy read versions of documents, which present information in an accessible way, can also support people to make decisions (Learning Disability Wales, 2024).

It’s worth keeping in mind that communication challenges and different understandings and values can play a significant role in the experience of marginalised people with social services (Kagan et al., 2002). Marginalised here means people who are part of a minority group and who potentially experience discrimination. This could be because of their ethnicity, disability, age, gender identity or economic disadvantage.