4.1.1. Willingness to be empowered

Miller & Farr¹¹¹⁹ surveyed patients’ knowledge of HCAI in the USA by asking if they were satisfied with the information they received about infection control and if they were willing to pay for increased investment in infection control programmes within their hospital. Responses revealed that 70% of patients were concerned about the risk of infection, 69% said the risk was never explained, and 57% said they would be willing to pay for better infection control programmes and information on infections.

The NPSA for England and Wales assessed patients’ views on involvement as part of their “cleanyourhands” campaign and reported that 71% of respondents wanted to be involved in improving hand hygiene practices.¹⁰²⁹ Similar results were reported by an acute care trust,¹¹²⁰ where 79% of patients thought that they should be involved in hand hygiene improvements.

A willingness to be empowered is dependent on patient input during the development of the programme. Entwistle and colleagues¹¹²¹ reviewed the content of five leading patient safety directives in the USA; they reported that the programmes had been developed without input from patients and lacked information about what the HCWs needed to do and what support should be given to patients. In 2001, the National Patient Safety Foundation Advisory Council in the USA took up the concern about consumer involvement and developed a new programme with input from patients and families, “Patients and Families in Patient Safety: Nothing About Me, Without Me”, as a call to action for health-care organizations at all levels to involve patients and families in systems and patient safety problems.¹¹²²

In 2004, WHO launched the World Alliance for Patient Safety to raise awareness and political commitment to improve the safety of care in all its Member States. A specific area of work, Patients for Patient Safety, was designed to ensure that the wisdom of patients, families, consumers, and citizens, in both developed and developing countries, is central in shaping the work of the Alliance. In 2007, as part of the WHO First Global Patient Safety Challenge, “Clean Care is Safe Care”, the development and implementation of an empowerment model for hand hygiene was initiated in collaboration with Patients for Patient Safety. In studies undertaken in the USA and the United Kingdom, McGuckin and colleagues^803–805 reported on patients’ willingness to be empowered and involved in hand hygiene by asking their HCWs to clean their hands. They documented that 80–90% of patients will agree to ask in principle, but the percentage of those that actually asked their HCW is slightly lower at 60–70%. A recent survey of consumers on their attitudes about hand hygiene found that four out of five consumers said they would ask their HCW “did you wash/sanitize your hands?” if their HCW educated them on the importance of hand hygiene.⁸⁷⁴ A patient’s willingness to be involved, empowered or engaged is dependent on the overall environment of the organization and its attitudes toward patient safety and patient involvement.^{876,1036,1123,1124}

4.1.2. Barriers to patient empowerment

There are several different theories from various disciplines that provide insight into the barriers of hand hygiene compliance that may apply to patient involvement. These theories include cognitive, behavioural, social, marketing, and organizational theories that may be valuable when considering barriers to be overcome, or a strategy to involve and engage patients.⁸⁷⁶ Pittet⁷⁸⁹ discusses in some detail the promising effect of the theory of ecological perspective as part of a multimodal programme to increase hand hygiene compliance. In this theory, similar to that of positive deviance,^1115,1116 behaviour is viewed as affecting and being affected by multiple factors, and both influences and is influenced by the social environment. Although further assessment of these theories is needed, they do appear to have a bearing on some of the barriers of patient empowerment. Three barriers that can lessen patient involvement are: 1) intrapersonal; 2) interpersonal; and 3) cultural.¹¹²⁵. Intrapersonal factors include psychological vulnerability, acute pain, and illness,¹¹²⁶ and each can be influenced by a lack of knowledge¹¹²⁷ and professional domination.¹¹²⁸ Interpersonal factors centre on the importance of communication and the need to use clear, simple language so that expectations are apparent.¹¹²⁹ Cultural factors such as cultural marginalization, caused by social pressure, can have a significant impact on “speaking up”.¹¹³⁰ In addition to these barriers, a significant factor often perceived by the patient is the fear of a negative impact/response from their HCWs.¹¹³¹ This barrier was explored in an acute care rehabilitation unit where patients are often dependent on their HCWs for activities of daily living. The authors reported that 75% of patients were comfortable asking their HCWs “did you wash/sanitize your hands?”⁸⁰⁵ It is important to note that empowerment is a major part of the rehabilitation process and, therefore, this may have been a motivating factor for empowerment in these patients.

Although HCWs are trained and motivated to provide the best care possible, they are often faced with barriers that are more system-related than behavioural. Empowering a patient covers issues that go beyond decision-making and involve more individual interests and cultural parameters. Acknowledging different views on patient empowerment and dealing with them in the context of an organization, culture, or community will be necessary when removing barriers to patient empowerment, involvement or participation in hand hygiene compliance.