**5. Empowering patient education**

#### **5.1. Empowerment**

Over the years, health research has examined how to encourage the management of self‐care in patients. Headache and other paediatric services face the challenge of how to empower the knowledge and understanding the children and parents have of specific focus areas and how to engage the child and parents in the process of changing health behaviour and incorporating active coping strategies.

The concept of empowerment developed in policy and social research in the 1960s and 1970s. From a medical perspective, Foucault stressed the need for patient knowledge, dialogue and shared decision‐making [47]. Later, nursing research explored empowerment, with Leino‐ Kilpi defining the various dimensions of empowering patient education in a model to be used as a tool for examining and evaluating patient education [48]. The knowledge and skills acquired were the outcomes measured. Knowledge and knowledge expectations are key topics. A large European survey of adult surgical orthopaedic patients undergoing patient education concluded that knowledge and knowledge expectations differ between cultures and people depending on their background. The highest expectations were with regard to the bio‐ physiological and functional knowledge dimensions [49].

Aujoulat et al. [50] discussed the lack of conclusive definitions of empowerment but revealed a number of guiding principles. Empowerment is seen as both a process and an outcome [51, 52]. The empowerment process can be divided into two parts: (1) an intra‐personal dimension where the individual transforms due to interactive learning and (2) an inter‐personal dimen‐ sion arising from the relationship between the patient and health provider [50, 51]. A key point is that an educational partnership is required to support and empower the patient (1) to collaborate, engage and be able to manage decision‐making; (2) to gain knowledge and skills to cope with psycho‐social and functional issues; (3) to have the right to self‐determination; (4) to mobilise resources to become responsible and efficient in self‐management; and (5) to adhere to mutual plans [48, 50, 53]. Time and experience are stressed as important factors in empowerment. Participation and interactive leaning are key topics [50, 51].

Child participation and decision‐making are a specialist area as children are vulnerable participants in health care service. Decision‐making involving children is linked to the ethical and legal rights of the child [54]. Children move through various stages of knowledge and cognitive skills, and have the right to participate regardless of the demands their develop‐ mental stage puts on how parents and professionals act. Generally, children develop their decision‐making skills as they get older, with 18 the legal age of consent for treatment. Until then, professionals and parents act as proxies on behalf of the child and work in the child's best interest throughout childhood [55], even though children may not know their rights or may not want to participate. As a result, involved parents and professionals should encourage the child to participate and be interactive in learning and decision‐making, but they should also respect the child's wishes and opinions [55]. Research points out that shared participation, decision‐making and shared learning experiences with parents promote positive outcomes [56], but in order to avoid an asymmetrical relationship, focusing on child‐centred care, where the child is a key, active agent [57] guided by adults, is recommended.

As an advocate for adolescent‐friendly health services, the WHO established quality standards in 2012 for this area [58], emphasising that services should be available, affordable and in an attractive environment. Ideally, adolescents should be involved in designing the service, which should provide up‐to‐date appropriate information and education that enables children and adolescents to make informed choices. Adolescents should be involved in monitoring and evaluating experiences. Interventions should be evidence‐based, and the health service should encompass knowledge about general health needs. In addition, the health care staff should possess the necessary skills and be given sufficient time to provide care. Finally, all procedures should guarantee client confidentiality and value cultural and religious needs. In 2015, the European Health Parliament established a similar framework on patient empowerment and patient centredness [59].

#### **5.2. How to facilitate health behaviour change**

Various actors must be taken into consideration for health services, including the child, parents, professionals and the organisation, each of which perhaps has its own gender‐specific culture and motivation. Research results show that additional fields of action must be examined in order to address these complex areas.

#### *5.2.1. Child, parents and network*

**5. Empowering patient education**

34 Current Perspectives on Less-known Aspects of Headache

physiological and functional knowledge dimensions [49].

Over the years, health research has examined how to encourage the management of self‐care in patients. Headache and other paediatric services face the challenge of how to empower the knowledge and understanding the children and parents have of specific focus areas and how to engage the child and parents in the process of changing health behaviour and incorporating

The concept of empowerment developed in policy and social research in the 1960s and 1970s. From a medical perspective, Foucault stressed the need for patient knowledge, dialogue and shared decision‐making [47]. Later, nursing research explored empowerment, with Leino‐ Kilpi defining the various dimensions of empowering patient education in a model to be used as a tool for examining and evaluating patient education [48]. The knowledge and skills acquired were the outcomes measured. Knowledge and knowledge expectations are key topics. A large European survey of adult surgical orthopaedic patients undergoing patient education concluded that knowledge and knowledge expectations differ between cultures and people depending on their background. The highest expectations were with regard to the bio‐

Aujoulat et al. [50] discussed the lack of conclusive definitions of empowerment but revealed a number of guiding principles. Empowerment is seen as both a process and an outcome [51, 52]. The empowerment process can be divided into two parts: (1) an intra‐personal dimension where the individual transforms due to interactive learning and (2) an inter‐personal dimen‐ sion arising from the relationship between the patient and health provider [50, 51]. A key point is that an educational partnership is required to support and empower the patient (1) to collaborate, engage and be able to manage decision‐making; (2) to gain knowledge and skills to cope with psycho‐social and functional issues; (3) to have the right to self‐determination; (4) to mobilise resources to become responsible and efficient in self‐management; and (5) to adhere to mutual plans [48, 50, 53]. Time and experience are stressed as important factors in

Child participation and decision‐making are a specialist area as children are vulnerable participants in health care service. Decision‐making involving children is linked to the ethical and legal rights of the child [54]. Children move through various stages of knowledge and cognitive skills, and have the right to participate regardless of the demands their develop‐ mental stage puts on how parents and professionals act. Generally, children develop their decision‐making skills as they get older, with 18 the legal age of consent for treatment. Until then, professionals and parents act as proxies on behalf of the child and work in the child's best interest throughout childhood [55], even though children may not know their rights or may not want to participate. As a result, involved parents and professionals should encourage the child to participate and be interactive in learning and decision‐making, but they should also respect the child's wishes and opinions [55]. Research points out that shared participation, decision‐making and shared learning experiences with parents promote positive outcomes

empowerment. Participation and interactive leaning are key topics [50, 51].

**5.1. Empowerment**

active coping strategies.

Engaging in PA decreases with age, though less so for boys than for girls [45, 60], indicating that this area needs more attention. In order to guide children to further pursue a physically active lifestyle, greater insight is needed into what key factors play a role. The Canadian Assessment of Physical Literacy (CAPL) [60] is an instrument validated in healthy children that offers assessment of PA, physical competence, motivation and confidence, knowledge and understanding related to a physically active lifestyle for children 8–12 years of age [60] and can provide insight into empowering elements. Further research will show whether CAPL can be used to benefit children with headache by pushing efforts in the right direction.

Little is known, in fact, about what motivates children. Trollvik et al. [61] examined what children experienced in a meaningful learning programme for children with asthma. The learning approach was varied and included storytelling, conversations, dialogue (including about bodily experiences) and interactive group activities. Qualitative evaluations based on recordings and observations showed that the following had a positive impact: (1) a warm and positive climate, (2) the opportunity to express and share feelings and reflections, (3) gaining new knowledge about the disorder and themselves and (4) interacting with other children and health care professionals. The study included a variety of communication methods to give the children both mental and bodily experiences.

Research indicates that parental participation plays an important role when children need empowering physical education [62]. Respecting the child/adolescent's needs, nurses and physical therapists can encourage and support families to make time to be physically active together, or to support the child, especially daughters, in other ways to promote a healthy lifestyle. Fathers and mothers influence their children differently, which is why health care staff should consider working with gender‐specific approaches [63]. Parental support can be divided into actions that are instrumental, conditional, motivational and informational [63]. For example, parents can motivate their children and adolescents and give them information; and they can pay any expenses, for equipment and for transportation (instrumental). Direct parental involvement in PA (conditional), where the fathers' active involvement appears to be very important, is associated with increased levels of PA [45, 63]. Parental support has also been shown to result in the enhanced psycho‐social wellbeing of the child [63]. Social support, including knowledge, beliefs and attitudes, from peers/friends and family also seem to have a clear positive effect on the PA level of adolescents [45, 63]. A positive climate, enjoyment and social elements are also known to facilitate the participation of children and adolescents [45], while a lack of time is perceived as a barrier [20, 45].

#### *5.2.2. Professionals in the organisation*

It is important to gain insight into the role, behaviour and thoughts of professional staff working in paediatric health care departments. Elwell et al. [64] conducted 33 interviews with clinical staff in inpatient and outpatient hospital services in order to identify the barriers and facilitators they experienced when providing advice to children and their families about healthy lifestyle behaviours. Barriers included a lack of time, a lack of feedback about whether the advice had had a positive impact and the constraints of working in a hospital environment. The facilitators included seeing health promotion as an important educational activity (not just information) that leads to cost savings, decreased admissions and better child health. In order to implement an educational activity that leads to positive outcomes, it is maintained that health care professionals must be trained. This argument is supported by Kelo et al. [56], who also examined how nurses perceive the utilisation of empowering education in school‐aged children with diabetes and their parents. The study identified four phases or categories for successfully managing this process: assessment of knowledge, skills and needs, planning, implementation, including participation and interactivity, and finally evaluation and feedback for the family. It was stressed that educating children must be based on developmental psychology because of the various psychological and functional abilities that characterise the different ages [56, 65]. The study describes the complexity of an empowering patient education in detail, as well as the variety of approaches used. Nurses experienced management and leadership challenges due to a lack of expertise, a lack of resources and uncertainty. Also the situation of the child and parents, with their various attitudes and behaviours, was contained. The nurses experienced that, despite the challenges, empowering patient education made sense and contributed a positive learning effect for the participating children and their parents, which is an outcome that should be studied further.

The multiple components in this study clearly show that empowering patient education is a complex intervention that requires the organisation and professionals to adapt their work practices to accommodate the complexity [53, 56]. Homogenisation and standardisation in hospital organisations, however, may work to thwart the aim of empowering education and child centredness. **Figure 3** presents aspects of empowering patient education for children and adolescents with headache.

together, or to support the child, especially daughters, in other ways to promote a healthy lifestyle. Fathers and mothers influence their children differently, which is why health care staff should consider working with gender‐specific approaches [63]. Parental support can be divided into actions that are instrumental, conditional, motivational and informational [63]. For example, parents can motivate their children and adolescents and give them information; and they can pay any expenses, for equipment and for transportation (instrumental). Direct parental involvement in PA (conditional), where the fathers' active involvement appears to be very important, is associated with increased levels of PA [45, 63]. Parental support has also been shown to result in the enhanced psycho‐social wellbeing of the child [63]. Social support, including knowledge, beliefs and attitudes, from peers/friends and family also seem to have a clear positive effect on the PA level of adolescents [45, 63]. A positive climate, enjoyment and social elements are also known to facilitate the participation of children and adolescents [45],

It is important to gain insight into the role, behaviour and thoughts of professional staff working in paediatric health care departments. Elwell et al. [64] conducted 33 interviews with clinical staff in inpatient and outpatient hospital services in order to identify the barriers and facilitators they experienced when providing advice to children and their families about healthy lifestyle behaviours. Barriers included a lack of time, a lack of feedback about whether the advice had had a positive impact and the constraints of working in a hospital environment. The facilitators included seeing health promotion as an important educational activity (not just information) that leads to cost savings, decreased admissions and better child health. In order to implement an educational activity that leads to positive outcomes, it is maintained that health care professionals must be trained. This argument is supported by Kelo et al. [56], who also examined how nurses perceive the utilisation of empowering education in school‐aged children with diabetes and their parents. The study identified four phases or categories for successfully managing this process: assessment of knowledge, skills and needs, planning, implementation, including participation and interactivity, and finally evaluation and feedback for the family. It was stressed that educating children must be based on developmental psychology because of the various psychological and functional abilities that characterise the different ages [56, 65]. The study describes the complexity of an empowering patient education in detail, as well as the variety of approaches used. Nurses experienced management and leadership challenges due to a lack of expertise, a lack of resources and uncertainty. Also the situation of the child and parents, with their various attitudes and behaviours, was contained. The nurses experienced that, despite the challenges, empowering patient education made sense and contributed a positive learning effect for the participating children and their parents,

The multiple components in this study clearly show that empowering patient education is a complex intervention that requires the organisation and professionals to adapt their work practices to accommodate the complexity [53, 56]. Homogenisation and standardisation in hospital organisations, however, may work to thwart the aim of empowering education and

while a lack of time is perceived as a barrier [20, 45].

which is an outcome that should be studied further.

*5.2.2. Professionals in the organisation*

36 Current Perspectives on Less-known Aspects of Headache

**Figure 3.** Aspects of empowering patient education for children and adolescents with headache. This image belongs to the author of the chapter: PhD Birte Tornøe.
