Chapter 15 – Janine Zube (D1SOP15)

Interventions and assessments are central to planned social care practice with service users, and efforts are made to gain service users’ informed consent. Service users may be living in long-term care, such as disability or homeless services, or in community supported living. It must be noted that in some sectors informed consent may not be given, or required, for example in special care. This chapter begins with an introduction to informed consent and continues by looking at the role of the social care worker and the different tasks/interventions for which consent is needed. This chapter also describes the process of obtaining and documenting consent. Of the eighty standards of proficiency, two relate to informed consent. This chapter focuses on obtaining and documenting informed consent and Chapter 16 (Domain 1 SOP 16) provides an overview of the legislation and guidelines governing informed consent for people with a lack of capacity.

Informed consent is ‘freely given, specific, informed and unambiguous indication of the data subject’s wishes by which he or she, by a statement or by a clear affirmative action, signifies agreement to the processing of personal data relating to him or her’ (European Parliament 2016).

While this is all good, you may ask yourself how you will be able to obtain informed consent from a service user who uses alternative forms of communication. As social care workers we always assume capacity of the person, even when someone requires support with his/her decision-making. It is important to document that informed consent has been given for an intervention and services, healthcare organisations and service providers have traditionally used paper-based consent forms on which intervention, services, procedure, together with risks and benefits, are noted.

The first step is to get to know the person and build a relationship. Once you have familiarised yourself with the means and communication method of the person, you will be able to adjust and amend information to the format of preferred communication.

Interventions

If you work in residential settings, you will be expected to support a person in daily life activities including personal care. It important to respect the choice and preference of a person when providing personal care. Supporting a person with such intimate care always requires informed consent. Consent should also be gained for alternative arrangements, such as if a preferred support gender/person is not available. A person’s decision-making and comprehension can be supported by additional user-friendly and accessible information, consent can be completed remotely, and the process can become paperless. One form of digital consent is dynamic consent, which invites service participants to provide consent in a granular way, and makes it easier for them to withdraw consent if they wish. This can mean that you as the professional has to become creative and inventive, making information accessible through the preferred choice of communication. This could be developing an easy-to-read version which is picture-supported or having a group discussion on particular subjects. The more information a person receives and understands, the better able they will be to make an informed decision.

This has presented a specific challenge across services providing support for the elderly, people with disabilities and people of all ages with acquired disabilities. You may have to support a person who presents with momentary incapacity. Social care workers may have been suddenly presented with opinions from family members, and we all have our own opinion on vaccines and the necessity of protection against COVID-19. However, it is important that the person has all information and makes an informed decision. When presented with differences of opinion and the aspect of protection, it is crucial to document all interaction with the person. For example, a social care worker provided support to a person with an acquired brain injury by giving accessible information to the person. To obtain informed consent a series of ten questions around COVID-19 and the vaccine were developed, such as:

• Do you know about COVID-19?
• Would you like a vaccine which could protect you from COVID-19?

While the person initially declined the vaccine, it needed to be established whether they really understood what, in general, is meant by a vaccine. Reviewing medical records, if available, or consulting with a person who knows your service user well may give an indication of your service user’s understanding of the concept of vaccines. Further, tailing questions such as ‘Did you get a vaccine for polio or tuberculosis as a child?’ might help to establish whether the person has received a vaccine before.

Visual supports relating to vaccines can also help the person to understand the issue. The HSE website has a list of these (see www.hse.ie/eng/services/covid-19-resources-and-translations/covid-19-vaccine- materials/covid19-vaccine-easy-read-and-accessible-information/).

Understanding the Role of the Social Care Worker

Social care work is a very diverse role which involves working with people in a practical way through general day-to-day activities in a range of settings. This includes working with people with disabilities, mental health problems, minority groups, ethnically and gender-diverse individuals and groups in private and public settings.

A social care worker will, in a holistic and client-centred approach, develop personal growth and care plans for the person or group they support. They might be supporting a homeless person to find work or somewhere to live, teaching a service user with a disability to be more independent or helping an adolescent who has lived in care to adapt to life as a self-sufficient adult. More, in some settings or at times, a social care worker may become involved in working alongside the service user’s family to ensure his or her natural support network (family) understand and support the development plan of the individual. Social care workers will stay in touch with other relevant stakeholders such as individual support agencies and multidisciplinary clinicians or liaise with other professionals on the service user’s behalf. At times, the role requires assertiveness and the ability to provide ‘tough love’. Sometimes, service users will need to be told ‘no’ and have alternative methods demonstrated, especially children and adolescents who need support with behaviour management.

Supervision is essential during this time, and engaging in frequent supervision sessions will ensure that our practice is client-centred and rights-based.

Variety of Contexts (Roles/Settings)

If you work with people with disabilities it is important to highlight that community participation should be inclusive and meaningful. If you ever thought your research days were over once you completed your undergraduate thesis, think again! The better your research skills are, the better you will be at sourcing inexpensive activities for people. In the case of a person with disability, joining a group predominantly representing people with disability may be a good start. The true skill is including all members of the community to either set up or join a common interest group. Suddenly you find yourself in the role of negotiation, or mediating between interest groups. Another skill to develop over time is how to access funding. This involves skills in accounting, being business savvy and promoting or marketing your project or supporting a service participant to take on a fundraising project.

You’ll need to be well organised, confident and able to cope in potentially challenging situations.

As a social care worker you may work with children, young people, families and/or significant others, social work teams, other healthcare providers and government agencies, schools, training agencies and community groups to care for, protect, and support vulnerable or dependent service users, individually or in groups, in conjunction with the wider multidisciplinary team and other relevant agencies that aim to ensure the welfare of service participants and you will act as an advocate as appropriate. You will contribute to the planning and evaluation of individualised and group programmes of care, which are based on needs identified in a holistic approach with your service user and others, and delivered through day-to-day shared life experiences. 

In residential, day services, community or special care settings you will be part of a team providing a safe, caring environment for service participants – children, young people and adults – with the primary aim of providing the intervention necessary to address the issues that are preventing them from living at home or of preparing them to live independently with the support of aftercare services or individualised services.

Interventions as Planned Practice

Because we are working with people in all their individuality we must ensure that our skills develop and grow over time. It is important to form positive relationships with service users built on time and trust.

Developing and implementing creative activities fulfil a variety of purposes, including: relationship development; increasing self-esteem; improving hand-eye co-ordination; and stimulating memory. These are all used in healthcare, the disability services, care for the elderly and the youth and community sector. Creative and recreational intervention are designed to meet the individual needs of service users within these sectors.

European Parliament (2016) Regulation (EU) 2016/679 of the European Parliament and the Council. Available at <https://www.legislation.gov.uk/eur/2016/679/contents>.

HIQA (Health Information and Quality Authority) (2016) Supporting People’s Autonomy: A Guidance Document. Available at <https://www.hiqa.ie/sites/default/files/2017-01/Supporting- Peoples-Autonomy.pdf>.

HIQA (2020) International Review of Consent Models for the Collection, Use and Sharing of Health Information. Available at <https://www.hiqa.ie/sites/default/files/2020-02/International- Review%E2%80%93consent-models-for-health-information.pdf>.