What is the role of patient education?

Background

Patient education is the process by which health professionals provide specific and detailed educational activities and information to patients, carers and family members so they can actively participate in their healthcare and any treatment they may be receiving [1-3].

Patient education is a planned learning experience using a combination of methods. It is provided to:

• patients of all ages
• carers of patients
• family members of patients 

The benefits of education for patients with a cancer diagnosis include:

• improved understanding of their diagnosis and disease and any associated disability
• increased ability to cope with and manage their health in the context of their disease and its treatment
• better understanding of treatment options, side effects and toxicities
• improved self-advocacy and greater empowerment to make decisions related to their care
• increased compliance with treatment regimens 
• decreased treatment related complications  
• promotion of recovery and improved function during and following completion of treatment
• increased confidence in self management strategies
• reduced psychological distress and stress 

When patients, carers and family members are provided with effective education, long term outcomes include:

• increased use of self management strategies
• improved health related quality of life 
• improved patient outcomes
• increased satisfaction with care

To provide timely and effective patient education requires health professionals to be prepared and knowledgeable about the patient education process and associated resources. [4-6] 

Providing education to patients of different ages

While there are some commonalities between all learners, there are significant differences between adults and children as learners and both have characteristics which set them apart from each other. 

Educating adult patients, carers and family members

When providing adult patients and carers with education, it is important to consider and incorporate the principles of adult learning. Malcolm Knowles, a pioneer in the field of adult education, was the first to theorise how adults learn (called andragogy), describing adult learning as a process of self-directed inquiry.

Knowles identifies six principles of adult learning:

1. Adults are internally motivated and self-directed. They want to know why they need to learn something and want to understand the value of learning it. They may ask: ‘Why do I need to know this? or ‘Why is this important?’.  

• Adults want their learning experiences to:
  • meet their needs
  • be relevant
  • help them to achieve their goals

1. Adults bring life experiences and knowledge to learning experiences

• adult learners are a valuable resource because they have diverse knowledge and life experience which can be applied to new learning experiences. Adult learners may have ingrained ideas about things but will use their problem-solving, reflecting and reasoning skills when faced with a new problem.

1. Adults are goal oriented

• adults are goal focused and want timely learning. They seek meaningful learning experiences and need clear learning goals. Adults are ready to learn when they identify something they want to know or when they experience something that connects with their life situations. They become ready to learn things in order to cope effectively with real-life situations.

1. Adults are relevancy oriented

• adult learners want to know the relevance of what they are learning to what they want to achieve.

1. Adults are practical

• adults want to learn what will help them perform tasks or deal with problems they see in their lives now. They want to be involved in planning their learning and will focus on the aspects that are most useful to them.

1. Adult learners like to be respected

• adult learners want respect and to be seen as capable learners. Where possible, they should be offered choice and be encouraged to set their own learning goals.

The principles of adults learning should always be considered when planning an education session for patients, carers and family members. The following resources may be useful in your clinical practice:

• The University of Queensland Australia: Occupational Therapy Practice Education Collaborative Clinical educator's resource kit
• Northwest Center for Public Health practice: Effective adult learning - A toolkit for teaching adults

Educating children, adolescent and young adult patients

When providing paediatric patients and their families with education, it is important to recognise that a different approach is needed. The ability of children to understand a diagnosis of cancer and its treatment can be dependant on their developmental level.  

Family education most often includes adults (parents, guardians, family members) as well as the young patient. The parent or guardian is always included; however, the child must also be included in the education, which must be directed to the child in an age appropriate manner. [7]

Infancy

• during infancy education is directly solely towards the parent or caregiver.

Toddlerhood

• during this stage of development education is also solely directed towards the parent or caregiver however, as the child gains autonomy and independence, it is important the toddler is included in aspects of care as they are capable of some degree of understanding, especially with regards to procedures. Education should be provided using age appropriate teaching strategies. Although children of this age are able to comprehend more words, they may taken things literally therefore caution is needed.

Early childhood

• during this stage of development, education should include both the parents and child with the aim of facilitating communication between the parent and child about all aspects of their treatment and ongoing care.

Middle and late childhood

• during this stage of development, education should include both the parents and child however, health professionals are able to establish a one on one relationship and can provide education directly to the child, without the parent present if requested.

Adolescence

• during this stage of development, education should include both the parents and adolescent however, if requested, can be delivered separately. Health professionals are able to establish a one on one relationship and it is important to understand the characteristic of the developmental stage in order for education to be effective.

Patient-centred and family-centred care

Education sessions must be planned and delivered to meet the individual needs of the patient, carer and family and incorporate the principles of patient and family centred care [26, 32, 33]. 

Patient centred care: Patient-centred care can be defined as providing care that is respectful of and responsive to individual preferences, cultural traditions, family situations, social circumstances and lifestyle, to support active involvement of both the patient and their family in all health care decisions. 

Family centred care: The family is the basic unit of society and when a child becomes ill, the entire family can be affected. Family centred care recognises that each family is unique, the family is the constant in the child’s life, and they are experts on the child’s abilities and needs. Family centred care involves working with the family as a whole unit, to make informed decisions about which services and support the child and family may require. The strengths and needs of all family members are considered, and information about family dynamics can be invaluable in developing a plan which will be effective for both the child and family.

Providing patient centred and family centred education

A critical step in providing high quality education is assessing the learning needs, individual learning styles, readiness to learn, and the health literacy of the patient, carer and family. Other factors, for example, learning difficulties or impairments, the needs of non-English-speaking patients, and cultural sensitivities may also need to be considered.

Assessing the learning needs of the patient, carer and family

The first step in the process is assessing:

• what is already known
• what they want and need to learn
• what they are capable of learning
• any requirement for different resources to support English as a second language (ESL) hearing or visual impairments

In some instances, there are differences between the views of patients and health professionals about what the patient and family need to know, as the patient may not perceive the importance of certain information. While acknowledging this difference, it is important to deliver vital information in such a way that the patient is able to understand why it is important.[5-8]

Individual learning styles

Everyone learns in different ways, and learning styles describe common ways that people learn. Age, educational ability, life and work experiences, culture and ethnic diversity all influence an individual’s learning style and need to be taken into consideration when planning education[9-11]. A commonly used model to describe learning styles is the Visual, Auditory, Kinaesthetic (VAK) model [10, 12].

This model identifies:

• visual learners learn through seeing
• auditory learners learn through hearing
• kinaesthetic learners learn through moving, doing or touching

Generally speaking, most people have one preferred style however, many can learn using a combination of all styles. For more information on the VAK module see the James Cook University: Workplace Educators Resource Package

Determining learning style involves assessing:  

• the way patients learn i.e. hearing (audio), reading (visual), or hands-on learning (kinaesthetic or tactile)
• the time they are more efficient learners i.e. morning, evening 
• their capacity to learn what they need to know.

From time to time, patients and families may seem uninterested in learning because they do not know what to ask or do not realise that they will need the information. In some instances, nurses and other health professionals may take it for granted that patients and families have a better understanding of their condition and treatment than they actually do and filter the information[13, 14].

Readiness to learn

Many factors influence a patient’s, carer’s or family’s readiness to learn, and individuals learn best when they are physically, mentally, and emotionally ready to learn. Anything that affects physical or psychological comfort can influence a learner’s ability and willingness to learn and all members must be receptive, willing and able to participate in the learning process. As previously identified, individuals will not learn the information if they see no reason for it. 

One of the most important roles of the health care professional is the ability to read patients, carers or family members to determine their readiness to learn specific material, or to perform required tasks. It is important to recognise that anything that affects physical or psychological comfort such as pain, fatigue, anxiety, or fear, will affect a person’s ability and motivation to learn. 

Before determining which teaching strategies and activities are appropriate, it is extremely important to determine the "readiness" of a learner otherwise no matter how important the information is, if the patient is not ready to learn, the information will not be absorbed. Consideration of timing is important as a patient or family member who is not receptive to information at one time, may be more receptive to the same information at another time. 

Health literacy

Health literacy is the ability to obtain, understand and use healthcare information to make appropriate health decisions and follow instructions for treatment. Health literacy is important because it shapes people’s health and the safety and quality of health care [27, 28, 29]. Health literacy is dependent on individual and system factors:

• communication skills of individuals and health care professionals
• knowledge of health topics – individuals and health care professionals
• culture
• demands of the healthcare and public health systems
• demands of the situation or context of illness and requirement for health literacy

Health literacy affects people's ability to:

• navigate the healthcare system, including filling out complex forms and locating health care providers and services
• share personal information, such as health history
• engage in self-care and chronic-disease management
• understand mathematical concepts such as risk in regards to treatment decisions and informed consent

It is important to be aware of health literacy when planning education for patients and families. Some will have greater difficulty than others in understanding complex health information, deciding between treatment options and navigating the health system.

For more information on health literacy see:

• Australian Commission on Safety and Quality in Health Care. National Statement on Health literacy viewed 22/08/2016    
• Australian Commission on Safety and Quality in Health Care. Health Literacy: Taking action to improve safety and quality. Sydney: ACSQHC, August 2014.
• Clinical Excellence Commission. Health Literacy

Other factors

When planning and delivering education it is important to take into consideration how specific learning difficulties or impairments can affect how individuals take in, remember, understand or express information. A learning difficulty or impairment may include:

• hearing impairment
• visual impairment
• dyslexia
• reading and writing difficulties
• interpretation in language and or mathematics

For patients, carers and families who were born in a country where the primary language is not English, English may be their second language. It is important that education for these individuals is in their chosen language, either their primary language or English, to aid in their understanding and retention.

Cultural considerations [29, 30, 31, 32]

Culture can be defined as shared practices, beliefs, customs, and values of a particular group, passed down through generations. Culture provides a sense of belonging and identity, a feeling of cohesiveness, and a sense of connectedness to those who came before and will come after. It is important that health care professionals recognise that culture may influence how people communicate, understand, and respond to health information and the delivery of education. 

Culturally and linguistically diverse (CALD) is a term used to reflect the differences between cultures and refers to the wide range of cultural groups. The term CALD also acknowledges that groups and individuals differ according to religion and spirituality, racial backgrounds and ethnicity as well as language. 

Cultural sensitivity can be broadly defined as an awareness and utilisation of knowledge related to ethnicity, culture, gender, or sexual orientation in explaining and understanding situations and responses of individuals in their environment.

Cultural competence refers to how individuals can interact effectively with people of different cultures and socio-economic backgrounds and consists of four components: 

• awareness of one's own cultural worldview
• attitude towards cultural differences
• knowledge of different cultural practices and worldviews
• cross-cultural skills. 

Developing cultural competence results in an ability to understand, communicate with, and effectively interact with people from different cultures. 

Remember:

• when working with different patients, carers and families it is important to assess each patient individually and not make assumptions about the patient's or family’s beliefs or health practices [7, 15-17]
• education that is culturally relevant and appropriate, including accessible services and information, is important for people of different cultural and linguistic backgrounds
• meeting the specific needs of different communities includes using language services to best effect to ensure there is no misunderstanding

If you are interested the Learning and Teaching Resources developed by the Department of Education and Early Childhood Development Victoria may provide some useful teaching strategies when working with CALD patients, carers or families. 

For more information see the Australian Government. National Health and Medical Research Council. Cultural Competency in Health: A guide for policy, partnerships and participation.Canberra, December 2005.

Communication in Cancer Care

A core component of providing education is the ability to communicate effectively with patients. Effective communication assists in understanding the patient, and their wants and needs, as well as building trust, rapport and respect. Where communication is not effective, important information can be missed or misinterpreted leading to conflict and frustration. Where important information is missed, patient safety and patient outcomes can be affected. Effective communication includes listening skills, as well as verbal and non-verbal communication [18-22]. 

Effective communication skills include[20,22, 23] :

• listening
• being aware of other peoples emtioins
• empathising
• encouraging

Effective communication skills are essential when providing patient education to patients and family members and can be linked to improved patient satisfaction and compliance with treatment regimens as well as a reduction in patient complaints [32, 33].

Effective communication:

• informs
• supports
• comforts
• guides
• sustains hope

Ineffective communication: 

• confuses
• disorganises
• demeans
• distresses
• causes stress

Poor communication or inadequate information can cause much distress for patients and their families, who may want considerably more information than has been provided. Lack of effective communication between specialists and departments can also cause confusion and a loss of confidence amongst the team.[24, 25]

Barriers to effective communication include:

• the use of jargon, or over-complicated, unfamiliar or technical terms
• emotional barriers and taboos
  • some people may find it difficult to express their emotions and some topics may be completely off-limits or taboo.
• lack of attention or interest, distractions, or irrelevance to the receiver 
• differences in perception and viewpoint
• physical disabilities such as hearing problems or speech difficulties
• physical barriers to non-verbal communication
  • not being able to see the non-verbal cues, gestures, posture and general body language can make communication less effective
• language differences and difficulty in understanding unfamiliar accents
• expectations and prejudices which may lead to false assumptions or stereotyping
  • occasionally people hear what they expect to hear rather than what is actually said and can jump to incorrect conclusions
• cultural differences
  • the norms of social interaction vary greatly in different cultures, as do the way in which emotions are expressed. For example, the concept of personal space and eye contact varies between cultures and between different social settings.

If you are interested see the Wiki on How to develop Good Communication Skills or HelpGuide.org Effective Communication 

Informed consent

Informed consent is a process for getting permission before conducting a healthcare intervention. A health care provider may ask a patient to consent to receive therapy before providing it, or a clinical researcher may ask a research participant before enrolling that person into a clinical trial. Informed consent is collected according to guidelines from the fields of medical ethics and research ethics [32, 33, 34].

The role of informed consent is to ensure patients, carers and family members understand the purpose, benefits, and risks of all treatment options before consenting to or refusing treatment. Where the patient is unable to provide consent themselves, consent can be obtained from a parent, legal guardian or individual with power of attorney.

The information that must be given includes:

• the diagnosis and prognosis of the condition
• an explanation of the recommended treatment
• the risks of the procedure and common side effects
• possible complications
• specific details of the treatment; for example, where it will be performed and who will perform it
• any other options for treatment and their probability of success

Consent for paediatric patients

Consent to medical treatment can only be given by a person who is competent to consent. In general, Australian law recognises that individuals aged 18 years and over have full legal capacity and are capable of making decisions relating to their own health care. Before 18 years of age, parents (or legal guardians) are entitled to consent to their child's medical treatment.

When attempting to decide whether a child is mature enough to make decisions, people often talk about whether a child is 'Gillick competent'. Gillick competence is a term used in medical law to decide whether a child (16 years or younger) is able to consent to his or her own medical treatment, without the need for parental permission or knowledge. Health professionals working with children need to consider how to balance a child’s rights and wishes with their responsibility to keep them safe. Gillick competence doctrine is part of Australian law.

For information on informed consent see the following resources:

• Australian Clinical Trials provided by National Health and Medical Research Council 
• National Statement on Ethical Conduct in Human Research  Chapter 4.7 Aboriginal and Torres Strait Islander Peoples
• Informed Consent in Healthcare: An issues Paper
• Australian Commission on Safety and Quality in Health Care – Resources and Publications
• Age of consent to medical treatment
• Family law: Parental consent to medical treatment of a child

References

1. Gruman, J., et al., From patient education to patient engagement: implications for the field of patient education. Patient education and counseling, 2010. 78(3): p. 350-356.
2. Polovich, M., M.K.M. Olsen, and K.B. LeFebvre, Chemotherapy and Biotherapy Guidelines and Recommendations for Practice. 2014: Oncology Nursing Society.
3. Visser, A. and M. Wysmans, Improving patient education by an in-service communication training for health care providers at a cancer ward: Communication climate, patient satisfaction and the need of lasting implementation. Patient Education and Counseling, 2010. 78(3): p. 402-408.
4. Aranda, S., et al., Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs: results from a randomised, controlled trial. Annals of oncology, 2011: p. mdr042.
5. Chick, K., et al., Enhancing patient education through clinical nurse specialist collaboration. Clinical Nurse Specialist, 2012. 26(6): p. 317-22.
6. Mann, K.S., Education and health promotion for new patients with cancer. Clinical journal of oncology nursing, 2011. 15(1): p. 55-61.
7. Falvo, D., Effective Patient Education: A Guide to Increased Adherence. 2010: Jones & Bartlett Learning.
8. Swartz, A.L., Embodied Learning and Patient Education: From Nurses' Self-Awareness to Patient Self-Caring. New Directions for Adult and Continuing Education. n134 p15, 2012. 24.
9. Inott, T. and B.B. Kennedy, Assessing learning styles: Practical tips for patient education. Nursing Clinics of North America, 2011. 46(3): p. 313-320.
10. Jarvis, P., Adult Education and Lifelong Learning: Theory and Practice. 2010: Routledge.
11. Lin, G.A., Patient education: one size does not fit all. JAMA Internal Medicine, 2013. 173(14): p. 1376.
12. Knowles, M.S., E.F. Holton, and R.A. Swanson, The Adult Learner. 2012: Taylor & Francis.
13. Matsuyama, R.K., et al., Cancer patients’ information needs the first nine months after diagnosis. Patient Education and Counseling, 2013. 90(1): p. 96-102.
14. Nossum, R., M.B. Rise, and A. Steinsbekk, Patient education--which parts of the content predict impact on coping skills? Scandinavian Journal of Public Health, 2013. 41(4): p. 429-35.
15. Ben-Arye, E., et al., Integrating family medicine and complementary medicine in cancer care: A cross-cultural perspective. Patient Education and Counseling, 2014. 97(1): p. 135-139.
16. Hong, Y., N.C. Peña-Purcell, and M.G. Ory, Outcomes of online support and resources for cancer survivors: A systematic literature review. Patient Education and Counseling, 2012. 86(3): p. 288-296.
17. Beagley, L., Educating Patients: Understanding Barriers, Learning Styles, and Teaching Techniques. Journal of PeriAnesthesia Nursing, 2011. 26(5): p. 331-337.
18. Tannen, A.P.M.P.H., Communication Skills Training for Health Professionals Working With People Who Have Cancer. Cancer Nursing November/December, 2014. 37(6): p. 476-477.
19. Webster, D., Promoting therapeutic communication and patient-centered care using standardized patients. Journal of Nursing Education, 2013. 52(11): p. 645-8.
20. Thorne, S., et al., Poor communication in cancer care: patient perspectives on what it is and what to do about it. Cancer Nursing, 2013. 36(6): p. 445-53.
21. Salmon, P. and B. Young, The validity of education and guidance for clinical communication in cancer care: evidence-based practice will depend on practice-based evidence. Patient Education & Counseling, 2013. 90(2): p. 193-9.
22. Mazor, K.M., et al., Assessing patient-centered communication in cancer care: stakeholder perspectives. Journal of oncology practice/American Society of Clinical Oncology, 2013. 9(5): p. e186-93.
23. McCormack, L.A., et al., Measuring patient-centered communication in cancer care: a literature review and the development of a systematic approach. Social Science & Medicine, 2011. 72(7): p. 1085-95.
24. Kaplan, M., SPIKES: a framework for breaking bad news to patients with cancer. Clinical Journal of Oncology Nursing, 2010. 14(4): p. 514-6.
25. Thorne, S.E., et al., Time-related communication skills from the cancer patient perspective. Pscyho-Oncology, 2009. 18(5): p. 500-507.
26. Australian Commission on Safety and Quality in Health Care www.safetyandquality.gov.au Patient and Consumer Centred Care viewed 22/10/2014    
27. Australian Commission on Safety and Quality in Health Care www.safetyandquality.gov.au Health literacy viewed 22/10/2014    
28. Australian Commission on Safety and Quality in Health Care www.safetyandquality.gov.au National Statement on Health literacy viewed 22/10/2014    
29. Australian Commission on Safety and Quality in Health Care. Health Literacy: Taking action to improve safety and quality. Sydney: ACSQHC, August 2014.
30. Australian Government. National Health and Medical Research Council. Cultural Competency in Health: A guide for policy, partnerships and participation. Canberra, December 2005.
31. Centre for Cultural Competence Australia www.ccca.com.au: Defining Cultural Competence viewed 22/10/2014
32. Australian Government National Health and Medical Research Council. 2004. General Guidelines for Medical Practitioners on Providing Information to Patients. Reference number E57. 
33. Medical Board of Australia. March 2014. Good Medical Practice: A Code of Conduct for Doctors in Australia
34. Australian Medical Association. 2004. Editorially revised 2006. AMA Code of Ethics. 

What is the most important goal in patient education?

What is the nurse's role in patient education?

What are the advantages of patient education?

What is the meaning of patient education?