children's experiences of a participation approach to asthma education

9
RESPIRATORY Children’s experiences of a participation approach to asthma education Anne Trollvik, Karin C Ringsberg and Charlotte Sile ´n Aim and objectives. To explore the participation and responses of children to an asthma education programme that was developed with the aid of children with asthma. In a larger perspective, the aim was to understand how educational approaches can be designed to help children learn to live and cope with asthma. Background. A literature search showed that programmes where children participate in the development of educational materials or programmes are lacking. Design. An exploratory descriptive design was chosen to get an in-depth understanding of the communication and collabora- tion between children and healthcare personnel. Methods. Data were collected through observations, tape recordings of the conversations and notes of the interactions between the children and the healthcare personnel and analysed by content analysis. Results. The significance of the asthma education programme emerged in four themes: (i) children are learning from each other: in a positive learning climate, the children were able to express emotional themes that they may not have communi- cated before; (ii) children are learning through an interaction with the educational material: the children discussed stories and pictures in a fellow interplay: when one child expressed something, another child would recognise it and continue the story; (iii) children are learning from their interaction with healthcare personnel and vice versa: adjusting the vocabulary according to the children’s experiences, they were met on their level of understanding; and (iv) children can express and dis- cuss their understanding of asthma. Conclusions. The unique aspect about this programme is that it emanates from children’s perspectives. The children were actively involved and learnt from each other’s shared knowledge and experiences, which is a good source of meaningful learning and empowering processes. Relevance to clinical practice. Future educational approaches should use children’s perspectives in a manner in which their questions, thoughts and daily challenges are emphasised. Key words: asthma, child, empowerment, health education, health promotion, learning, participation, qualitative Accepted for publication: 11 September 2012 Introduction Children who suffer from asthma experience numerous con- sequences of their illness including restricted participation in activities (Rydstrom et al. 1999, Woodgate 2009) and fears of exacerbations of asthma and being ostracised (Trollvik et al. 2011). Asthma affects a child’s quality of life (Juniper et al. 1996), and previous studies have shown that asthma education programmes (AEPs) improve children’s quality of life and reduce the burden of asthma Authors: Anne Trollvik, PhD, RN, Associate Professor, Hedmark University College, Elverum, Norway and Nordic School of Public Health, Gothenburg, Sweden; Karin C Ringsberg, PhD, Professor, Nordic School of Public Health, Gothenburg; Charlotte Sile ´n, PhD, RN, Associate Professor, Karolinska Institutet, Stockholm, Sweden Correspondence: Anne Trollvik, Associate Professor, Faculty of Public Health, Hedmark University College, 2418 Elverum, Norway. Telephone: +4792248907; +4762430244 E-mails: [email protected]; [email protected] © 2013 Blackwell Publishing Ltd 996 Journal of Clinical Nursing, 22, 996–1004, doi: 10.1111/jocn.12069

Upload: charlotte

Post on 30-Mar-2017

214 views

Category:

Documents


2 download

TRANSCRIPT

Page 1: Children's experiences of a participation approach to asthma education

RESPIRATORY

Children’s experiences of a participation approach to asthma

education

Anne Trollvik, Karin C Ringsberg and Charlotte Silen

Aim and objectives. To explore the participation and responses of children to an asthma education programme that was

developed with the aid of children with asthma. In a larger perspective, the aim was to understand how educational

approaches can be designed to help children learn to live and cope with asthma.

Background. A literature search showed that programmes where children participate in the development of educational

materials or programmes are lacking.

Design. An exploratory descriptive design was chosen to get an in-depth understanding of the communication and collabora-

tion between children and healthcare personnel.

Methods. Data were collected through observations, tape recordings of the conversations and notes of the interactions

between the children and the healthcare personnel and analysed by content analysis.

Results. The significance of the asthma education programme emerged in four themes: (i) children are learning from each

other: in a positive learning climate, the children were able to express emotional themes that they may not have communi-

cated before; (ii) children are learning through an interaction with the educational material: the children discussed stories

and pictures in a fellow interplay: when one child expressed something, another child would recognise it and continue the

story; (iii) children are learning from their interaction with healthcare personnel and vice versa: adjusting the vocabulary

according to the children’s experiences, they were met on their level of understanding; and (iv) children can express and dis-

cuss their understanding of asthma.

Conclusions. The unique aspect about this programme is that it emanates from children’s perspectives. The children were

actively involved and learnt from each other’s shared knowledge and experiences, which is a good source of meaningful

learning and empowering processes.

Relevance to clinical practice. Future educational approaches should use children’s perspectives in a manner in which their

questions, thoughts and daily challenges are emphasised.

Key words: asthma, child, empowerment, health education, health promotion, learning, participation, qualitative

Accepted for publication: 11 September 2012

Introduction

Children who suffer from asthma experience numerous con-

sequences of their illness including restricted participation

in activities (Rydstrom et al. 1999, Woodgate 2009) and

fears of exacerbations of asthma and being ostracised

(Trollvik et al. 2011). Asthma affects a child’s quality of

life (Juniper et al. 1996), and previous studies have

shown that asthma education programmes (AEPs) improve

children’s quality of life and reduce the burden of asthma

Authors: Anne Trollvik, PhD, RN, Associate Professor, Hedmark

University College, Elverum, Norway and Nordic School of Public

Health, Gothenburg, Sweden; Karin C Ringsberg, PhD, Professor,

Nordic School of Public Health, Gothenburg; Charlotte Silen, PhD,

RN, Associate Professor, Karolinska Institutet, Stockholm, Sweden

Correspondence: Anne Trollvik, Associate Professor, Faculty of Public

Health, Hedmark University College, 2418 Elverum, Norway.

Telephone: +4792248907; +4762430244

E-mails: [email protected]; [email protected]

© 2013 Blackwell Publishing Ltd

996 Journal of Clinical Nursing, 22, 996–1004, doi: 10.1111/jocn.12069

Page 2: Children's experiences of a participation approach to asthma education

(Cicutto et al. 2006, McGhan et al. 2010). However, there

is a need to understand how asthma education can be

designed to best benefit affected children and result in posi-

tive learning outcomes (McGhan et al. 2005).

Background

A literature search on AEPs shows that intervention pro-

grammes are based on theoretical or pedagogical frame-

works, such as social cognitive theory (Cicutto et al. 2005,

McGhan et al. 2010), lifespan development perspectives

(Kintner & Sikorskii 2009) and group-based programmes

(Tolomeo 2009, Watson et al. 2009). In other programmes,

the main message is the medical content, that is, medical

treatment and inhaler technique training (Chandler 2007)

or instruction of Peak Expiratory Flow (PEF) monitoring

(Burkhart et al. 2007). The studies also describe interven-

tions in which children participate in activities such as sing-

ing or playing music (DePue et al. 2007, Andrew 2008),

two-way dialogue (Cano-Garcinuno et al. 2007, Flapper

et al. 2008), role-playing (Cicutto et al. 2005, Pulgaron

et al. 2010) and physical activities (Costa et al. 2008, Nich-

olas et al. 2009). Programmes where children participate in

the development of educational materials or programmes

are lacking. Traditionally, educational programmes are

developed by professionals. In this study, children’s per-

spectives were incorporated into an educational pro-

gramme, and these children were involved in the

development and implementation of this programme.

One pedagogical reason for involving children is theories

of meaningful learning (Marton et al. 1984, Mayer 2002).

It is well documented in educational research that learning

is an active process. The learner (the child) must construct

his/her own knowledge and process information (how to

cope with asthma at his/her level of understanding)

(Marton & Booth 1997, Bransford et al. 2000). To make

the information comprehensive, it is important that the

child can be able to relate to actual scenarios in daily life

that he/she has experienced; in this case, the experiences

are connected to asthma. Included in theories of meaningful

learning are experiences of relevance; the child will be moti-

vated to learn if he/she can relate to real situations with

which they need to cope (Dewey 1916, Marton & Booth

1997). To engage the children on their level of understand-

ing, adults and professionals need to understand what

meaningfulness means to children with asthma (Vygotsky

1978, Dahlgren 1990). Mayer (2002) claims that learning

is not only acquiring knowledge but also using the acquired

knowledge in a variety of situations. Antonovsky (1987)

describes meaning as a central part of the Sense of Coher-

ence (SOC). With its core dimensions: comprehensibility,

manageability and meaningfulness, SOC explains why peo-

ple in stressful situations remain healthy and are even able

to improve their health (Antonovsky 1987).

Problem-based learning (PBL) is one approach to create mean-

ingful learning in a life–world perspective (Gijselaers 1996, Silen

& Uhlin 2008). Fyrenius et al. (2005) described PBL and mean-

ingful learning using steps that can be informative when studying

children’s learning: (1) the new knowledge must be related to the

learner’s current knowledge, (2) the content must be relevant to

and within the context of the learner’s knowledge, (3) the learner

must be active in the learning process, (4) peer discussions are

central, (5) reflection integrates knowledge in a meaningful way

and (6) the learners’ questions are the driving force (Fyrenius

et al. 2005). In line with PBL, stories can be a starting point for

learning, creating coherence and giving a holistic meaning to life.

This study is part of an action research project that took

place from 2004–2007 in a Norwegian paediatric context.

One of the project’s aims was to develop an AEP based on

children’s perspectives. The content and pedagogic methods

of the AEP were developed together with children, parents

and healthcare personnel (HCP), all involved in a co-opera-

tive inquiry process. This information was incorporated

into the development of the AEP. The aim of this study

was to explore the participation and responses of children

to an AEP that was developed with the aid of children with

asthma. In a larger perspective, the aim was to understand

how educational approaches can be designed to help chil-

dren learn to live and cope with asthma.

Methods

The asthma education programme

The pedagogic approach used for this AEP was theories of

meaningful learning, and the main pedagogic tools were stories

and pictures. The asthma educational materials included a

storybook (Aspeli & Bø 2001) that was written for children

with asthma (National Strategy for Asthma Education 2001).

This material was previously developed by an interdisciplinary

team together with children and parents and was based on

asthma guidelines (GINA 1998). The AEP was developed

locally based on the educational material and a co-operative

inquiry process, with the aim of giving children with asthma

confidence in their ability to manage the asthma. The planned

content was the following: the definition of asthma, asthma

trigger factors, how it feels to have asthma, how to cope with

asthma, the location of the lungs in the body, asthma medica-

tions, physical activity with respect to asthma and whether to

be open about asthma or not.

© 2013 Blackwell Publishing Ltd

Journal of Clinical Nursing, 22, 996–1004 997

Respiratory A participation approach to asthma education

Page 3: Children's experiences of a participation approach to asthma education

Procedure

Prior to the AEP, the schedule for the AEP and the story-

book was sent to the children and their parents together

with written information. In the informational letter, the

children and parents were encouraged to prepare for the

AEP by reading the material together. The HCP were

encouraged to prepare for the AEP by reading the educa-

tional material prior to the AEP.

Data collection and participants

The AEP was group based, and a total of 21 children

divided into six groups, with 3–4 children in each group

participated in the AEP. They were recruited from a paedi-

atric ward in an urban hospital in Norway. One of the six

AEPs, the third one conducted, was observed for a total of

three hour. This AEP was selected after the HCP tested the

programme and were satisfied with its function. In the

observed AEP, three participants, two girls [8 (A) and 10

(B) years old] and one boy [10 (C) years old] participated.

These children had moderate or severe asthma that was

treated daily with asthma medications. Two HCPs partici-

pated in the study, a nurse who specialised in asthma and a

physiotherapist who led the AEP session.

A researcher, AT was involved in the development of the

educational material and the co-operative inquiry process

but was not involved in the development and organisation

of the present AEP. Data were collected through observa-

tions, tape recordings of the conversations and notes of

the interactions between the children and the HCP. The

researcher adopted the passive participant role. The

observations focused on how the activities of the AEP were

performed, the pedagogical approach, the educational dia-

logues of the AEP and how the children responded to it.

Data analysis

The tape-recorded AEP session was transcribed verbatim;

this recording together with the written notes from the

observations were analysed in six steps using qualita-

tive manifest and latent content analysis (Graneheim &

Lundman 2004). Emphasis was placed on both verbal and

non-verbal interactions. The analysis was carried out in the

following steps: (1) the text was read carefully several times

to provide a sense of the whole, (2) reflection on the con-

tent of the text, (3) a directed approach (Hsieh & Shannon

2005), which was a more structured process, was used. In

this approach, the analysis began by identifying key vari-

ables as the initial coding. The key variables in this study

were based on findings from the earlier interviews with

children: fear of exacerbations and fear of being ostracised

(Trollvik et al. 2011), (4) a description illustrating the man-

ifest content of the data was performed, (5) the description

was analysed with the purpose to reveal the latent content

(i.e. the meaning of the description in relation to the chil-

dren’s knowledge) and (6) the latent content was described

in terms of themes.

Trustworthiness

To achieve trustworthiness (Patton 2002), three researchers

analysed and discussed the results. The three authors had

previous knowledge from different fields that enriched the

interpretation of the results: children’s asthma education,

public health and education in health care. We were aware

that researchers interpreted the children’s expressions from

an adult perspective and might not fully understand the

meanings of their expressions. However, this was balanced

by the children’s involvement in the development process.

Although the researcher adopted a passive role with a

reflexive attitude, the observed AEP could have been influ-

enced by the presence of the researcher (Patton 2002). In

the presentation of the results, quotations from the observa-

tions were used to validate the results.

Ethical considerations

A nurse who specialised in asthma recruited children from

the paediatric ward after providing verbal information

about the project to these children and their parents. After

agreeing to participate in the project, written information

about the project was provided. Both the children and their

parents gave their informed written consent before attend-

ing. All information was treated confidentially and anony-

mously. Research ethics principles according to the

Declaration of Helsinki (2008) were followed. The Regio-

nal Norwegian Committee for Medical Research Ethics

approved the study (953/05).

Results

Planned asthma education with children’s participation

The first part of the results is presented in a descriptive

form, guided by the directed analysis, illustrating the mani-

fest content of the data. Four dialogues illuminate the com-

munication in the AEP: ‘feeling asthma throughout the

body’, ‘continuing activities’, ‘taking medications’ and

‘reluctance to be open about asthma’.

© 2013 Blackwell Publishing Ltd

998 Journal of Clinical Nursing, 22, 996–1004

A Trollvik et al.

Page 4: Children's experiences of a participation approach to asthma education

Observations of the AEP showed that the AEP was

planned with various pedagogic approaches: PBL, storytell-

ing, discussions, games, playing, two-way dialogue and

group-based activities. The initial plan was followed, but

the HCP altered the plan when an initiative came from the

children, for example, when a child expressed his/her own

experiences, the HCP would follow-up by asking further

questions to deepen the children’s meaning. The children

and the HCP became familiar with each other through a

game where Bronky (a plush animal) was passed around,

and the participants used Bronky to ‘talk’. Initially, the chil-

dren were silent, but as they became familiar with each

other and the HCP, they became more talkative. When

using the educational material, the HCP varied the approach

by reading from the book, telling some parts of the story,

inviting the children to tell the next part and showing pic-

tures to encourage dialogue in a relaxed atmosphere. The

children remembered stories and pictures from the book and

contributed to the session by providing narratives from their

own experiences. The programme was varied from conver-

sational and dialogue based to including activities where the

children were more active, such as using the floor as a stage,

drawing a full-sized body to show the position of the lungs,

looking at a skeleton to see the position of the lungs and

playing with large mats to imitate the inflation and deflation

of the lungs. Additionally, it was arranged a question game,

in which the children walked around in the room/corridor

and answered questions about topics from the sessions. The

atmosphere was easy-going, and the children looked at each

other with interest, smiling at each other and enjoying their

time together. Beyond the planned content of the AEP, the

following topics were raised by the children: continuing

activities without rest periods or medications, being alone

and embarrassed when taking medications and smoking

among parents:

Dialogue 1: Feeling asthma throughout the body

After a conversation in the group about how Ane (a girl from

the book) experienced asthma, the HCP asked the children:

HCP: How do you experience asthma in your body?

B: I feel it is difficult (..thinking..) to be able to manage

things, I do not manage them well.

HCP: You do not manage so well, no… Where do you feel

it (asthma) that you cannot manage so well?

B: I feel it in throughout my body that I don’t manage very

well.

C: It feels awful, and when it begins my chest begins to

tighten.

The children nodded at each other as they were engaged

in the conversation, they remembered Ane from the book.

However, the HCP did not follow-up on the theme about

how they felt asthma throughout their bodies (not only in

the lungs) but continued with the activities explaining the

position of the lungs in the body.

Dialogue 2: Continuing activities

A topic about continuing activities without rest periods or

medications came spontaneously from the children during a

discussion on how to cope with asthma. A child talked about

being tired during physical activity. The HCP took out the

picture of ‘Ane looking exhausted’ from the educational

material to illustrate the topic. Ane is standing by the sideline

waiting to run back to the football match, and another

girl is sitting down, resting, and looking exhausted with a

bottle of water at her side. The HCP showed the picture and

asked:

HCP: What did she do when she became exhausted and

tired?

C and B together: She tried to continue doing the activity.

HCP: Then what happened?

C: She became tired.

HCP: Do you become tired in your entire body or just in

your breathing?

(The HCP changed focus and directed the question from

the picture to the children)

C (nodding): I become tired in my breathing,

HCP: Is there a difference between being tired in your legs and

body and being tired because you feel tight in the chest?

The HCP did not receive an answer to this question from

the children.

The session continued with a group discussion about strat-

egies to avoid the exacerbations of asthma. The children sug-

gested stopping the physical activity and drinking water, and

they said that they often continue the activity longer than

they can manage their symptoms which causes them breath-

ing problems. They nodded their heads in agreement when

they discussed this issue.

Dialogue 3: Taking medications

HCP: What can you do to avoid feeling tightness in the

chest?

C: Not demand too much of oneself.

HCP: That’s true. What about medication?

© 2013 Blackwell Publishing Ltd

Journal of Clinical Nursing, 22, 996–1004 999

Respiratory A participation approach to asthma education

Page 5: Children's experiences of a participation approach to asthma education

B: Take medication before starting an activity

(C thinking)

C: I did not know that it is possible to take medicine

before starting an activity.

(C thinking and reflecting)

C: I am beginning to learn that I can use this now.

The challenges of taking medications and the proper use of

inhalation medication were topics that the children or the HCP

touched upon many times during the AEP in both planned and

spontaneous ways. The initiative came from both the children and

the HCP. On one occasion, the teaching of inhalation techniques

was initiated by the HCP by asking the children to explain to her

how she should properly inhale the medication. The children

became eager and engaged when explaining this procedure to the

HCP. They explained the procedures correctly, and they seemed

to be skilled in taking these medications. They told the HCP that

they had learned these skills during consultations in the paediatric

ward and through repetition at home. However, two children said

that they often forgot to take their medications and that their tea-

cher did not know about their asthma or their medications. They

told that they felt alone when taking their medications because

their parents were at work or their teacher was not present.

Dialogue 4: Reluctance to be open about asthma

The topic of reluctance in being open about one’s asthma

and medications was introduced by the HCP by showing a

picture of ‘Steinar’ from the educational material. The pic-

ture shows Steinar hiding in a cleaning cupboard when he

is taking his medication. In this story, Steinar believes that

the other children will tease him if they watch him taking

his medication. The picture of Steinar was shown to the

group, and before the HCP asked any question, B spontane-

ously remembered the story from the book and said:

B: Was this the boy who thought he would be teased if he

took his medication in the classroom?

C: He went to the cleaning cupboard and took it there. He

planned to tell his class afterwards.

HCP: What do you think he will tell the class?

B: It is bad if someone teases him for taking his

medication. It is not his fault; he takes it to get better.

HCP: What would he say?

C: For example, I have this illness, so I cannot help it that

I have to take medication.

During the following discussion, all three children were

engaged in this topic and related that they did not take

their medication openly:

B: Hmmmm, I usually forget it, or I take it in the

bathroom.

A: Me too, I go to the bathroom.

C said that he waited until the other pupils had left the class-

room. He related that the reason why he does not take his

medication openly is that he felt that the other students looked

while he took the medication, which embarrassed him.

The meaning of asthma education for the children

The second part of the results is presented in four themes

illustrating the meaning of the manifest content based on the

latent analysis: ‘children are learning from each other’, ‘chil-

dren are learning through an interaction with the educational

material’, ‘children are learning from their interaction with

health care personnel and vice versa’, and ‘children can

express and discuss their understanding of asthma’.

Theme 1: Children are learning from each other

A positive climate for the children to learn from each other

was created during the AEP. This atmosphere was shaped

by the warm and inclusive voice and positive non-verbal

language of the HCP. For example, when a child expressed

his/her own feelings, this expression was welcomed and fol-

lowed up by the HCP. The children became familiar with

each other; they felt safe in the group and seemed to enjoy

themselves. In this positive climate, child C related that he

was beginning to learn to take his medication before engag-

ing in physical activity (dialogue 3). He admitted that he

did not possess this knowledge prior to the AEP. He com-

mented on his own learning process, relating to what he

had learned from child B. The children had the opportunity

to express their feelings about how they experience asthma.

They appeared to be competent in communicating with

each other and participated actively in the AEP. They were

able to express themselves on existential and emotional

themes (dialogue 4), that is, being embarrassed and hiding

their asthma. They expressed feelings that they may not

have communicated prior to the AEP (dialogues 3 and 4).

Theme 2: Children are learning through an interaction with

the educational material

One tool that was used to engage the children in discussions

was the stories with pictures. The pictures and stories cap-

tured the children’s interest, and they discussed the pictures

in a fellow interplay: when one child expressed something,

another child would recognise it from his/her own experi-

ences and continue the story. The stories and pictures

became recognisable and created meaning for the children.

© 2013 Blackwell Publishing Ltd

1000 Journal of Clinical Nursing, 22, 996–1004

A Trollvik et al.

Page 6: Children's experiences of a participation approach to asthma education

The use of pictures resulted in an increase in the children’s

activity levels; in dialogue 4, the children discussed the situ-

ation from the educational material (the first two quota-

tions). For the next quotation, they talked from their own

experiences. It was observed how quickly they moved from

the story to themselves. Dialogue 4 shows that they knew

the stories from the material well; they even opened the dia-

logue before the HCP initiated the conversation.

Theme 3: Children are learning from their interaction with

healthcare personnel and vice versa

By asking questions about how the children experience

asthma in the beginning of the AEP, the HCP came to

know how the children express themselves and experience

asthma and adjusted the session and vocabulary accord-

ingly. Thus, the children were met on their level of under-

standing, which created a basis for meaningful learning.

The HCP used open-ended and follow-up questions and

waited for the children’s answers and reflections on topics

that were difficult to communicate (dialogue 4). With this

technique, the HCP emanated from the children’s knowl-

edge base and gave them the opportunity to verbalise and

understand based on their own knowledge. On the other

hand, when using this technique, the HCP learned and

understood children’s asthma in a new way from the chil-

dren’s perspectives. Through this mutual dialogue, both

parties gained knowledge. In dialogue 2, the HCP followed

up on what the child said in a previous sentence by repeat-

ing the child’s own words. The HCP used this communica-

tion technique to follow-up on the dialogue and encourage

the child to continue the communication.

However, the HCP did not always follow-up on the sig-

nals from the children. Although in dialogue 1, the girl felt

asthma not only in her lungs but also throughout her body,

the HCP continued to teach about the lungs instead of fol-

lowing up on the children’s initiative and deepening the

meaning of her feelings about feeling asthma throughout

her body. This deficiency could be a sign that the HCP

were working with traditional knowledge. In dialogue 3,

the HCP invited dialogue based on the children’s expres-

sions but did not follow-up on what was said. The HCP

continued talking about medication instead of following up

the child’s expression, and the HCP closed the dialogue by

not sharing the child’s initiative.

Theme 4: Children can express and discuss their

understanding of asthma

The children showed that they had knowledge about asthma,

their lungs, medications and inhalation techniques. However,

they faced challenges using this knowledge in daily life. They

knew the technical side of taking medications, but their expe-

riences made it difficult to show the device and the inhale their

medication in front of their classmates, that is, for fear of

being embarrassed. Dialogue 2 indicates that it is difficult for

the children to assess and understand when their breathing

problems are caused by asthma or when they are caused by

simply being tired, as breathing and being tired are abstract

feelings that are difficult for children to understand. To learn

this, they need to feel the difference in their bodies. The chil-

dren had knowledge of how to cope when their asthma was

exacerbated, for example, the children knew to rest, reduce or

stop the physical activity, drink water and take medications.

When they experienced dilemmas in activities (dialogue 2), it

seemed that it was difficult for them to follow-up and act on

their knowledge. For example, when they stopped to inhale

their medications, they had fun; however, they were worried

about being left behind and that the other children would con-

tinue playing without them. If they had an initial plan of how

to cope, they might not manage it well because their experi-

ences of the situation were too complex.

Discussion

The AEP was based on an educational material and pro-

gramme that children had participated in developing. This

study shows that the children’s perspectives remained when

the programme was carried out. The AEP was both struc-

tured and open for contributions from the children; when

the children expressed their thoughts, the HCP would direct

their attention to what they had expressed. The children’s

understanding of asthma became clearer, and the HCP

could build on the children’s knowledge to deepen their

understanding of dilemmas and psychosocial issues they

experience in daily life. The children received education on

the experiences that they found challenging, not only what

the HCP believe are important.

Overall, this approach corresponds to an educational

approach and learning theory that takes meaningful learn-

ing into account. Through the manifest description of the

AEP, we observed that the children constructed their own

knowledge by modifying the stories that were used as a

starting point to their life–world and understanding. They

were learning from pictures and stories that were based on

relevant situations and got the opportunity to improve their

comprehensibility. Learning from each other and the HCP

gave them meaning, although the HCP did not always fol-

low-up on all of the children’s expressions.

The children were enthusiastic being together at the AEP.

It was the first time that they had met and discussed aspects

of asthma with other children. This experience opened the

© 2013 Blackwell Publishing Ltd

Journal of Clinical Nursing, 22, 996–1004 1001

Respiratory A participation approach to asthma education

Page 7: Children's experiences of a participation approach to asthma education

children’s ability to talk about emotions that they usually

do not have an opportunity to verbalise. They were learn-

ing from each other as peers and experienced the fact that

others felt similar to themselves, which is a good source of

meaningful learning and empowering processes (Marton &

Booth 1997, Mayer 2002, Nicholas et al. 2009). Vygotsky

(1978) believed that cognitive and social development built

on each other and that children learn from each other

through conversation and social interaction. Children’s

communication about social and emotional challenges with

their peers can be a starting point to self-confidence and

openness. This understanding contributes to their experi-

ence of meaningfulness and SOC (Antonovsky 1987).

As the pictures and stories were related to the experiences

of children with asthma, the material made it easier for the

children to express their own feelings. The material was suit-

able for educational purposes, and the children engaged in

the stories. The performance of the HCP showed that they

were well prepared. There is a need for both structured and

non-structured time because children at this age have a short

attention span, and they need variation and fun, child-

focused activities. In Dewey’s (1916) educational philosophy,

active, interactive and fun activities are central and involve

the social world of the child; their peers and adults. The

HCP must balance the children’s spontaneous inputs and

develop the AEP with a mixture of spontaneity and structure.

It seems that the HCPs fall back on their traditional knowl-

edge as in dialogue 1, where they acknowledged asthma as

only an issue of physical importance and overlooked the girl’s

expression that she feels asthma throughout her body. Chil-

dren as young as seven years of age can give dependable

reports on their asthma (Olson et al. 2007); however, interac-

tions have been dominated by doctors and parents with minor

contributions from children (Tates&Meeuwesen 2001).

The children knew how to use their inhalation devices, but

they did not take their medications openly, and they also

sometimes forget about taking their medications. Other stud-

ies have shown similar results: children feel embarrassed

when using medication at school (Nicholas et al. 2009), and

it is difficult to remember (Penza-Clyve et al. 2004). Contin-

uing to teach only the inhalation technique will probably not

change children’s behaviour. Other methods where a child

can express the psychosocial dilemmas of taking his/her med-

ication (e.g. hiding, being embarrassed) are likely to be fruit-

ful when used together with support from peers, parents,

teachers and the HCP. The children did not understand the

difference between being tired from exercise and being tired

due to the asthma. In a pedagogic view, it is difficult to

understand this difference simply through conversation. It is

a better pedagogic approach if the children performed physi-

cal activities during the AEP or in an asthma camp setting

(Costa et al. 2008, Nicholas et al. 2009).

The results show that the children had knowledge of how

to cope with asthma but they expressed that they felt alone

and needed support from adults. This phenomenon could be

an indication of a lack of support from parents, teachers and

the HCP. The dialogues in the AEP helped the children to

visualise their needs for help and support from adults to cope

with their asthma in daily life. Studies from school pro-

grammes where children, teachers, parents and HCP are

involved (Cicutto et al. 2005, Kintner & Sikorskii 2009)

show that this setting help to strengthen the partnership in

asthma care and have a broad impact on creating a support-

ive environment for the children (McGhan et al. 2010).

Strengths and weakness of the study

Study findings are limited by the small sample size; however, the

purpose was to yield rich descriptive data and obtain deep

knowledge about the children’s responses to the AEP. This study

raises questions that clearly warrant further study, for example,

that children feel embarrassed in school settings, they are hiding

and avoiding treatment in fear of being excluded. We believe that

the results are transferable to other settings and can serve as an

eye opener of how children’s knowledge and perspectives can be

incorporated into AEPs.

Relevance to clinical practice

Future AEPs for children should use children’s perspectives in a

manner in which their questions, thoughts and daily challenges

are emphasised. Group-based AEPs where children can discuss

and exchange experiences as peers should further be prioritised,

and it would be fruitful for the children to meet again for follow-

up evaluations and repetition. Further research should focus on

how to take care of the child’s interests and the participation

scheme and methods that are most suitable for children. We sug-

gest working towards programmes for children in the public

health or school settings, where psychosocial and daily life chal-

lenges should be focused, where peers, teachers, parents and

HCP play important roles.

Conclusion

The unique aspect about this AEP is that it emanate from

children’s perspectives. The educational material with pic-

tures and stories gave meaning to the children. They enjoyed

being together and were communicating and learning from

each other, the material and the HCP. The findings indicate

that the children have knowledge that can be built upon by

© 2013 Blackwell Publishing Ltd

1002 Journal of Clinical Nursing, 22, 996–1004

A Trollvik et al.

Page 8: Children's experiences of a participation approach to asthma education

parents, teachers and HCP. Active involvement of the chil-

dren shows a bottom–up perspective that can lead to confi-

dence in own strength and empowerment. The topics

discussed were based on their life–world, were meaningful

for them and can strengthen SOC for the participating chil-

dren. Through listening to the children’s experiences, the

HCP learn from them and both the children and the HCP

learn from each other. If the HCP use this knowledge in

future AEPs, it will lead to continual improvement of AEPs.

Acknowledgements

We would like to thank the children and the healthcare per-

sonnel for participating in this study. We want to thank

Reidun Nordbach, nurse specialising in asthma, for her

contribution. This work was supported by Hedmark Uni-

versity College, Innlandet Hospital Trust and Nordic

School of Public Health. No other commercial funding is

involved.

Contributions

Study design: AT, CS and KCR; data collection and

analysis: AT, CS and manuscript preparation: AT, CS and

KCR.

Conflict of interest

There are no conflicts of interest.

References

Andrew W (2008) Bronchial boogie. Journal

of the Royal Society for the Promotion

of Health 128, 287–288.

Antonovsky A (1987) Unraveling the Mys-

tery of Health: How People Manage

Stress and Stay Well. Jossey-Bass, San

Francisco.

Aspeli W & Bø H (2001) Ane og Bronky –

i farta! (Ane and Bronky – on the

Move). The Norwegian Asthma- and

Allergy Association, Oslo. Available

at: http://www.naaf.no/Documents/

Opplæring/Ane%20og%20Bronky%20-

%20i%20farta!%202010.pdf (accessed

2 May 2012) [in Norwegian].

Bransford J, Brown AL & Cocking RR

(2000)HowPeople Learn: Brain,Mind,

Experience, and School. National Acad-

emy Press,Washington, DC.

Burkhart PV, Rayens MK, Oakley MG,

Abshire DA & Zhang M (2007)

Testing an intervention to promote

children’s adherence to asthma self-

management. Journal of Nursing

Scholarship 39, 133–140.

Cano-Garcinuno A, Diaz-Vazquez C,

Carvajal-Uruena I, Praena-Crespo M,

Gatti-Vinoly A & Garcia-Guerra I

(2007) Group education on asthma

for children and caregivers: a random-

ized, controlled trial addressing effects

on morbidity and quality of life. Jour-

nal of Investigational Allergology &

Clinical Immunology 17, 216–226.

Chandler T (2007) Reducing re-admission

for asthma: impact of a nurse-led ser-

vice. Paediatric Nursing 19, 19–21.

Cicutto L, Murphy S, Coutts D, O’Rourke

J, Lang G, Chapman C & Coates P

(2005) Breaking the access barrier:

evaluating an asthma center’s efforts

to provide education to children with

asthma in schools. Chest 128, 1928–

1935.

Cicutto L, Conti E, Evans H, Lewis R,

Murphy S, Rautiainen KC & Sharrard

S (2006) Creating Asthma-Friendly

schools: a public health approach.

Journal of School Health 76, 255–258.

Costa MR, Oliveira MA, Santoro IL, Juli-

ano Y, Pinto JR & Fernandes AL

(2008) Educational camp for children

with asthma. Jornal Brasileiro De

Pneumologia 34, 191–195.

Dahlgren L (1990) Undervisningen och det

meningsfulla larande (The education

and the meaningful learning). Ska-

pande Vetande 16, 6–37 [in Swedish].

Declaration of Helsinki (2008) Ethical

Principles for Medical Research

Involving Human Subjects. Available

at: http://www.wma.net/en/30publica-

tions/10policies/b3/index.html (acc-

essed 2 May 2012).

DePue JD, McQuaid EL, Koinis-Mitchell

D, Camillo C, Alario A & Klein RB

(2007) Providence school asthma part-

nership: school-based asthma program

for inner-city families. The Journal of

Asthma 44, 449–453.

Dewey J (1916) Democracy and Education:

An Introduction to the Philosophy

of Education. Macmillan, New York,

NY.

Flapper BC, Duiverman EJ, Gerritsen J,

Postema K & van der Schans CP

(2008) Happiness to be gained in pae-

diatric asthma care. The European

Respiratory Journal 32, 1555–1562.

Fyrenius A, Bergdahl B & Silen C (2005)

Lectures in problem-based learning-

why, when and how? An example of

interactive lecturing that stimulates

meaningful learning. Medical Teacher

27, 61–65.

Gijselaers W (1996) Connecting problem-

based practices with educational the-

ory. In Bringing Problem-Based

Learning To Higher Education: The-

ory and Practice (Wilkerson L & Gijs-

elaers W eds). Jossey-Bass Publishers,

San Fransisco, CA, pp. 13–21.

GINA (1998) Gina Report. Global Strategy

forAsthmaManagement and Prevention.

Available at: http://www.ginasthma.org/

guidelines-pocket-guide-for-asthma-man

agement.html (accessed 2May 2012).

Graneheim UH & Lundman B (2004)

Qualitative content analysis in nursing

research: concepts, procedures and

measures to achieve trustworthiness.

Nurse Education Today 24, 105–112.

Hsieh HF & Shannon SE (2005) Three

approaches to qualitative content anal-

ysis. Qualitative Health Research 15,

1277–1288.

Juniper EF, Guyatt GH, Feeny DH, Ferrie

PJ, Griffith LE & Townsend M (1996)

Measuring quality of life in children

with asthma. Quality of Life Research

5, 35–46.

© 2013 Blackwell Publishing Ltd

Journal of Clinical Nursing, 22, 996–1004 1003

Respiratory A participation approach to asthma education

Page 9: Children's experiences of a participation approach to asthma education

Kintner EK & Sikorskii A (2009) Random-

ized clinical trial of a school-based aca-

demic and counseling program for

older school-age students. Nursing

Research 58, 321–331.

Marton F & Booth S (1997) Learning and

Awareness. Lawrence Erlbaum, Mah-

wah, NJ.

Marton F, Hounsell D & Entwistle N

(1984) The Experience of Learning.

Scottish Academic Press, Edinburgh.

Mayer RE (2002) Rote versusmeaningful learn-

ing.Theory into Practice41, 226–232.

McGhan SL, Cicutto LC & Befus AD

(2005) Advances in development and

evaluation of asthma education pro-

grams. Current Opinion in Pulmonary

Medicine 11, 61–68.

McGhan SL, Wong E, Sharpe HM, Hessel

PA, Mandhane P, Boechler VL, Majae-

sic C & Befus AD (2010) A children’s

asthma education program: roaring

adventures of puff (RAP), improves

quality of life. Canadian Respiratory

Journal 17, 67–73.

National Strategy for Asthma Education

(2001) Nasjonal Plan for Astmaskoler.

The Norwegian Asthma and Allergy

Association, Oslo. Available at: http://

naaf.no/no/tjenester/Flash/Astmaskoler

—NPAS-/Nasjonal-Plan-for-Astmask-

oler-NPAS-/ (accessed 2 May 2012) [in

Norwegian].

Nicholas DB, Williams M & MacLusky IB

(2009) Evaluating group work within a

summer camp intervention for children

and adolescents with asthma. Social

Work with Groups 32, 209–221.

Olson LM, Radecki L, Frintner MP, Weiss

KB, Korfmacher J & Siegel RM

(2007) At what age can children

report dependably on their asthma

health status? Pediatrics 119, 93–102.

Patton MQ (2002) Qualitative Research

and Evaluation Methods, 3rd edn. Sage

Publications, Thousand Oaks, CA.

Penza-Clyve SM, Mansell C & McQuaid

EL (2004) Why don’t children take

their asthma medications? A qualita-

tive analysis of children’s perspectives

on adherence. Journal of Asthma 41,

189–197.

Pulgaron ER, Salamon KS, Patterson CA &

Barakat LP (2010) A problem-solving

intervention for children with persistent

asthma: a pilot of a randomized trial at

a pediatric summer camp. The Journal

of Asthma 47, 1031–1039.

Rydstrom I, Englund AC & Sandman PO

(1999) Being a child with asthma.

Pediatric Nursing 25, 589–590, 593–

596.

Silen C & Uhlin L (2008) Self-directed

learning – a learning issue for students

and faculty! Teaching in Higher Edu-

cation 13, 461–475.

Tates K & Meeuwesen L (2001) Doctor-

parent-child communication. A (re)

view of the literature. Social Science &

Medicine 52, 839–851.

Tolomeo C (2009) Group asthma educa-

tion in a pediatric inpatient setting.

Journal of Pediatric Nursing 24, 468–

473.

Trollvik A, Nordbach R, Silen C &

Ringsberg KC (2011) Children’s expe-

riences of living with asthma: fear of

exacerbations and being ostracized.

Journal of Pediatric Nursing 26,

295–303.

Vygotsky L (1978) Mind in Society. Har-

vard University Press, Cambridge.

Watson WT, Gillespie C, Thomas N, Filuk

SE, McColm J, Piwniuk MP & Becker

AB (2009) Small-group, interactive

education and the effect on asthma

control by children and their families.

Canadian Medical Association Journal

181, 257–263.

Woodgate R (2009) The experience of dysp-

nea in school-age children with asthma.

The American Journal of Maternal

Child Nursing 34, 154–161.

The Journal of Clinical Nursing (JCN) is an international, peer reviewed journal that aims to promote a high standard of

clinically related scholarship which supports the practice and discipline of nursing.

For further information and full author guidelines, please visit JCN on the Wiley Online Library website: http://

wileyonlinelibrary.com/journal/jocn

Reasons to submit your paper to JCN:High-impact forum: one of the world’s most cited nursing journals, with an impact factor of 1�118 – ranked 30/95

(Nursing (Social Science)) and 34/97 Nursing (Science) in the 2011 Journal Citation Reports® (Thomson Reuters, 2011).

One of the most read nursing journals in the world: over 1�9 million full text accesses in 2011 and accessible in over

8000 libraries worldwide (including over 3500 in developing countries with free or low cost access).

Early View: fully citable online publication ahead of inclusion in an issue.

Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jcnur.

Positive publishing experience: rapid double-blind peer review with constructive feedback.

Online Open: the option to make your article freely and openly accessible to non-subscribers upon publication in Wiley

Online Library, as well as the option to deposit the article in your preferred archive.

© 2013 Blackwell Publishing Ltd

1004 Journal of Clinical Nursing, 22, 996–1004

A Trollvik et al.