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To promote the dignity and improve the quality of life of all individuals receiving care, they should be fully involved in any decision that affects their care, including personal decisions such as what to eat, what to wear and what time to go to bed, as well as wider decisions about their care or support.
To establish service users’ views on their satisfaction and involvement in their care, the Personal Social Services Adult Social Care Survey, England – 2020-21 asked service users questions about quality of life, the impact of care and support services and their general health and wellbeing.
The survey found that 67.7% of the participating service users were very or extremely satisfied with the care and support they received, while 2.1% were very or extremely dissatisfied with the care and support they received.
Over 90% of the service users (90.5%, 33,770) that reported they feel clean and are able to present themselves in the way they want, also reported they have adequate or as much control over their daily life as they want; 9.5% of these service users feel they have no control or some control but not enough.
For service users that don’t feel at all clean or presentable, 80.1% (590) also reported that they have no control or some control but not enough. For these service users, 19.9% (150) feel they have adequate or as much control over their daily life as they want. Over 80% (80.5%, 29,800) report being able to spend time as they want, or they are able to do enough of the things they value or enjoy with their time.
Eighteen councils with adult social services responsibilities (CASSRs) took part in the survey. In the councils taking part in the survey, 57.3% (35,695) of service users were female and 42.7% (26,640) were male. 57.9% of the service users (36,085) were aged over 65; 73.0% (45,500) of the service users receive services in the community; 20.2% (12,590) receive services in residential care; and 6.8% (4,250) receive services in nursing care.
What is Active Participation?
Pearson Edexcel, one of the awarding bodies that sets the specifications for the Level 2 and Level 3 Health and Social Care Diplomas, defines active participation as, “recognising an individual’s right to participate in the activities and relationships of everyday life as independently as possible; the individual is an active partner in their own care or support rather than a passive recipient.”
Many people who experience health and social care, especially individuals with significant needs, can often feel side-lined, ignored and not in control of their own lives. Most other people in the general community have control and a say in how they live their lives, but for people who are in health and social care, their choices in what they do can be severely limited.
Active participation is an approach that enables individuals to be included in their care and have a greater say in how they live their life in ways that matter to them. The individual is encouraged and shown ways in which they can help themselves, make their own decisions about the things that affect them, participate in social activities and build personal relationships, and be healthier or recover from illness.
Service user and carer participation has become an increasingly important part of how adult social care services are developed and delivered. The process of meaningful participation represented a real change from the previous process of service delivery and helped with the Putting People First agenda.
The concept of “person-centred” or “user-focused” active participation care has long since been an integral part of the way that health and social care providers, including general practice, have delivered care to service users and patients.
People who use services have a right to be seen as individuals with different preferences, skills and abilities. Respecting this basic right means involving them in the way their care and support is delivered. It is the key in moving from “doing to” to “doing with”.
What are the Principles of Active Participation?
Active participation has two key principles underpinning care:
- The rights of the individual.
- The independence or autonomy of the individual.
Active participation recognises that everyone has the right to participate in everyday life activities and relationships. It promotes the rights, independence and choice of the individual.
Examples of implementing these principles in health and social care include but are not limited to:
- Confidentiality: It is a very important right of individuals who receive care and support to be afforded privacy. Information about the individual should always only be shared on a need-to-know basis. Care providers should not share personal information with anybody else, even the person’s family or friends, without their permission. For example, an individual may not want a friend or their family to know about their health or if they have been unhappy. Personal information includes things like their health conditions, sexual orientation, personal history or social circumstances. Individuals may tell you other private information that they trust you to keep to yourself. You should keep this information confidential unless it is necessary to pass this on for health and social care reasons, and, in those circumstances, it is important that you explain this to the individual concerned, giving your reasons for needing to divulge.
- Dignity: This is also an important right of individuals who receive care and support. It is about asking for and respecting their views, choices and decisions rather than prescribing a generic service; one size does not fit all. Each individual has a different view of what they see as their personal needs, so it is important to find out from them what is comfortable for them. This includes such things as:
– Personal space.
– Dignity and privacy when providing intimate services, for example dressing or washing, asking for their consent before performing certain actions as part of their care, and providing the means for people to have control to care for themselves if they are able.
– Personal decisions such as what and when to eat, what to wear, what time to go to bed and get up, and activities they want to partake in.
– Complex decisions such as about finances or medical issues.
- Independence: Active participation is about an individual’s right to participate in all kinds of activities independently, regardless of their medical conditions and/or disability. Active participation supports individuals to understand their value in the community, which helps them to gain self-esteem, increase their independence to fulfil their social needs and to reduce any isolation that they may feel.
- Autonomy: Active participation gives individuals an opportunity to have a say about things which are of direct concern to them. It is critical that the individual initiates some actions without prompting. They should be able to discuss their preferences and make choices, for example, in how and when their care is delivered, the activities they would like to participate in, the people they want to socialise with, and their likes, dislikes, needs and wants.
Why is Active Participation Important?
Planning and decision-making in health and social care benefits from the active involvement of, in particular, those who receive or experience the services.
It empowers and enables people to:
- Be involved in considering their own needs and contributing to their support plans.
- Be in control of who should and should not be involved when their needs are being considered and discussed.
- Be in control of decisions about any medical treatments and corresponding risks they want to take.
- Be able to manage the way in which services are provided to them, having a say over how, where and when their needs are met and who assists them with the support that they need.
- Be able to challenge the quality of a service without fear of it having any negative consequences.
- Be supported, not obstructed, in maintaining a full, active and independent life.
- Determine what they themselves consider to be respecting their rights, privacy and dignity rather than using other people’s definition of these.
- Make independent and informed decisions about their lives and their own care and support.
- Voice their views and opinions and be listened to when they express them.
- Be seen as having views, abilities and potential which is acknowledged and utilised as the basis for meeting their needs rather than the basis being their infirmities and limitations.
- Able to manage the information which is provided to care and support organisations about them.
- Be seen as a partner and equal when engaged with professionals to work in partnership, designing, determining and reviewing the services they require and receive.
- Be viewed as an individual and unique person first and foremost.
What are the Benefits of Active Participation?
Active participation is an approach that empowers individuals in the activities and relationships of everyday life leading to them living as independently as possible. The importance to the individual as an active partner in their own care or support is that it brings physical, psychological, relational and, overall, wellbeing benefits.
More specifically, active participation:
- Increases an individual’s independence; they are making their own decisions and being supported by rather than dependent on others.
- Improves an individual’s self-esteem, self-confidence and self-awareness. Being able to be in control of decision-making gives people a sense of autonomy over their lives. They will feel valued, know that they have a voice and be able to influence the quality of their care.
- Opens up more opportunities for activities, social contact and relationship building. People can become more involved in the community, and more aware of opportunities, what they can look forward to and what they can do. It reduces the risks of social isolation and loneliness.
- Enhances relationships between people and their care staff as they have a say in matters of direct concern to their lives rather than being a passive recipient of what someone else provides.
All of the above improves an individual’s overall wellbeing not only mentally and psychologically by having choice, self-respect and social involvement, but also physically by providing greater activity levels.
When individuals grow in self-confidence and self-esteem, they are less prone to exploitation and harm from others, making them less vulnerable to the likelihood of physical, financial, mental or psychological abuse. Because people feel empowered by active participation, people are more likely to speak up about things that they do not feel are right and will have more of an understanding of their own rights.
There are also benefits of active participation for those who are providing health and care services. By involving the individual and others in the care-planning process, care providers will gain invaluable insights into what that particular individual requires to maintain a high level of wellbeing and to reach their potential.
By considering an individual’s holistic needs and preferences rather than particular aspects, care providers can provide care that caters for the whole person, which in turn will improve the job satisfaction for care providers.
What are the Barriers of Active Participation?
However good the intentions are to implement active participation, there are a number of barriers that may need to be overcome. Some will be easier than others to conquer.
These include but are not limited to:
- Lack of information – Choices can only be made if people have information. If they know the options, the risks and possible implications they can make the choice that is right for them. It is the individual’s right to make a choice and take any risks once they understand all the information available and are fully aware of the risks.
- Organisational barriers – These may be things such as:
– Unsuitable shift patterns.
– Staff shortages.
– Little or no understanding of the importance of active participation.
– Lack of staff training.
– Shortage of time.
– Inadequate resources.
– Inflexible procedures and rules.
- Communication barriers – These may include the individual being unable to communicate, or language barriers.
- Prior experience – Individuals may have become accustomed to having decisions made for them and resist the notion of independence or autonomy.
- Family and/or friends – You may need to explain active participation to others, such as the family or friends of an individual. Sometimes families and friends may think they know what is best for an individual, even though this is in conflict with what the individual themselves wants, so you may be required to explain to them the value of empowerment.
- Mobility – Individuals may not be able to access activities or services due to the location, lack of transport or the location not having disabled access.
- Physical, emotional or psychological barriers – Individuals may be suffering from depression, anxiety, shyness, agoraphobia, lack of confidence or poor self-image. Offer encouragement whilst respecting the individual’s right to privacy.
If an individual is unable to become involved in active participation, you should try to identify the reasons why and look at ways to remove or minimise any barriers. By doing so it will help the individuals that you care for to have more independence and more control over their lives, which will positively affect their self-esteem and wellbeing.
How to Encourage Active Participation?
There is hardly anything more rewarding than seeing individuals actively participate in their own health and social care.
To see a resident who has repeatedly declined to join in with activities, walk into the social area for a show or game or to participate in a quiz or discussion group, or to see an individual take an interest in what they will wear or take control about how they will celebrate their birthday, is very rewarding.
It is not always easy to engage people to actively participate; however, here are some suggestions to help encourage active participation:
- To support active participative planning, you need to start thinking in an active participatory way. Forget what you think an individual’s needs, wants and preferences will be and start with an open mind.
- Listen carefully – Be patient and take the time to listen to people. There are very few things more appreciated than undivided attention and someone having a genuine interest in them. You will learn a lot about the people that you work with as individuals as well as their unique views and preferences.
- Provide information in easily accessible formats to enable people to make their own choices based on relevant and up-to-date data.
- Discuss, record and action what aspects of health and social care individuals are happy with and what they think could do with improvement. Involving them shows that their opinions are valued.
- Consistency plays an important role in increasing participation. Encourage people to actively participate on a regular basis, not just the once, and continually search for different ways to motivate and entice them into being involved. It may take a while to gain their trust and support for the approach.
- Engage the help of relatives and volunteers – They are a wonderful resource and can assist to support individuals to participate in activities, meetings, gardening, bus trips, outings etc.
- Encourage friendships by identifying individuals with similar personalities, interests and character traits and facilitate opportunities to develop these friendships.
It is not always going to be easy to support the active participation of all individuals. There may be many barriers to participation which you may have to overcome. But empowering people to achieve and maintain a good quality of life is very satisfying and well worth the effort.