Targeting “hardly reached” people with chronic illness: a feasibility study of a person-centered self-management education approach

Figures & data

Figure 1 “The Vulnerable Person” model.

Notes: The two outer circles represent “The Balancing Person” model, encompassing challenges and needs of patients with chronic illness in relation to health education.²² The two inner circles represent additional influences on participation and behavior in health education sessions.²⁰ Predisposing factors include attitudes and skills such as acceptance of disease and the need to participate in patient education, literacy, learning disabilities, preferences for structure, capacity for self-reflection, and ability to think abstractly and verbalize needs and experiences. Varying behavior characteristics include reluctance, quiet, and shy behavior, or hyperactive, very talkative, and dominating behavior.¹⁹

Figure 2 Examples of PEASCI dialogue tools.

Notes: My Immediate World consists of a red/green tablecloth and cards with icons of personal relationships. Participants are invited to arrange specific relevant relationships on the cloth in the red (bad or unhealthy) or green (good or healthy) area of the tablecloth while showing how close the relationship is by the distance to “Me”. The tool facilitates reflection on positive and negative experiences of support and addresses whether participants receive or reject support. It also enables discussion about opportunities for improving their social network. Where Am I? consists of a red frowning face representing dissatisfaction and a green smiling face representing satisfaction that are placed on the floor several feet apart. Participants are invited to stand between the two faces in a location that shows their current level of satisfaction and then to move to a spot that reflects their desired satisfaction in relation to a specific topic (eg, eating a healthy diet). The tool helps participants express their desire for change by using their body as well as their voice and provides an opportunity to talk to people in similar situations.
Abbreviation: PEASCI, person-centered education approach and tool kit targeting self-management of chronic illness.

Table 1 Design principles and overall objectives guiding the development of PEASCI

Design principles	Overall objectives
Flexibility in using the dialogue tools	Setting the scene – building safe environments for participation
Simplicity in structure	Support for achieving physical and mental well-being
Appreciative approach	Clarification of and support for strengthening relationships
Concrete expression	Generation of knowledge based on participants’ needs
Appealing to a broad target group	Promotion of motivation and action competence – goal setting and action planning

Abbreviation: PEASCI, person-centered education approach and tool kit targeting self-management of chronic illness.

Table 2 Overview of dialogue tools

Tool name	Overall objective	Purpose	Idea
My Day	Safe environment, relationship development, knowledge, and motivation	To help participants feel acknowledged and allow the educator to gain valuable insights about the participants	Participants describe a typical day with their own focus and interests
Check-in	Setting the scene, well-being	To help participants settle in/get grounded in the course	In an exercise inspired by mindfulness, participants are invited to spend 5 minutes in mindful relaxation on arrival
Our Rules	Safe environment, relationships	To get participants actively engaged and responsible for education processes and a trustworthy environment	Participants use brainstorming to set common rules for teaching and social interaction
My Immediate World	Relationships, knowledge, motivation, and action competence	To create an overview of help and support provided by family and friends and to discuss opportunities for change	Participants are invited to place relatives on a board based on whether the relationship is good or bad and how close it is
My Contact with Healthcare Professionals	Relationships, knowledge, motivation, and action competence	To get an overview of support and advice provided by health care providers and discuss opportunities for change	Participants are invited to place health care providers on a board based on whether the relationship is good or bad and how important it is
Fact or Fiction	Safe environment, knowledge	To facilitate discussion of knowledge and mutual learning among participants and to support educators in “sweet-spot” education	Participants discuss whether statements provided by educators are true or false
Where Am I?	Safe environment, motivation, and goals and plan	To help participants gain a body-based understanding of where they are and where they would like to be in relation to a specific topic	Participants are invited to place themselves between images of happy and frowning faces on the floor and to talk to other participants and/or educators about their present situation and desire for change
We’re on the Way	Safe environment, motivation, and goals and plan	To use a game framework to work in an informal way on own goals in an open process with focus on strengths and successes and provide participants with the opportunity to inspire each other	Participants take turns drawing cards inviting them to, 1) reflect back on something positive, 2) look ahead to desired change, and 3) reflect on what the first step could be. Includes a brainstorm process among participants about ways to achieve desired changes
Check-out	Well-being and motivation	Closure and reflection on what to take home from session	In an exercise inspired by mindfulness, participants are invited to spend 6 minutes in mindful relaxation at the end of a session

Table 3 Educator assessment of PEASCI tools

	My Day	Check-in	Our Rules	My Immediate World	My Contact with HCPs	Fact or Fiction	Where Am I?	We’re On the Way	Check-out	Mean
Design principles
Flexibility of use
Useful for both individual and group sessions	3.2	4.2	3.7	4.3	3.6	3.7	4.3	3.4	4.1	3.8
Useful in different situations	4.0	4.0	3.7	4.2	3.8	4.2	4.4	3.9	4.2	4.0
Useful with different themes	3.4	4.3	3.8	4.2	4.0	4.1	4.4	3.8	4.5	4.1
Useful in situations of varying difficulty	3.0	3.6	3.3	4.2	3.8	4.2	4.0	3.3	3.9	3.7
Simplicity of structure
Easy to explain	4.6	4.3	3.7	3.9	3.6	4.4	3.7	3.0	4.5	4.0
Easy to understand	4.3	4.4	3.9	3.9	3.6	4.2	3.9	3.0	4.4	4.0
Has a clear objective	4.0	4.3	4.4	4.2	3.8	4.2	4.0	3.3	4.3	4.1
Concrete and specific	4.3	4.3	3.7	4.1	3.8	4.3	3.5	3.1	4.1	3.9
Reader friendly	4.5	4.5	4.1	4.1	3.8	4.5	3.9	3.8	4.6	4.2
Appreciative approach
Is supporting and affirmative	3.7	3.7	3.8	3.9	3.8	4.3	3.8	4.0	4.0	3.9
Is reliable and creates trust	4.0	4.1	3.7	3.8	3.8	3.4	3.4	3.8	3.9	3.8
Is humorous and creates hope	2.4	2.3	3.4	3.5	3.2	3.4	3.6	3.7	3.2	3.2
Focuses on success and is motivating	3.3	2.8	3.2	3.8	3.6	3.4	3.8	4.1	3.5	3.5
Concrete expression
Takes different learning styles into account	3.0	2.6	3.0	3.8	3.6	3.4	3.8	4.0	3.2	3.4
Provides visual, tactile, kinesthetic, and auditory stimulation	3.2	3.2	3.1	3.9	3.4	2.6	4.0	4.0	3.7	3.5
Focuses on practice	2.8	3.6	3.4	4.1	3.6	2.9	4.1	3.9	3.8	3.6
Tangible	4.3	4.1	3.9	4.2	3.6	3.9	4.0	3.6	4.1	4.0
Mean	3.6	3.8	3.6	4.0	3.7	3.8	3.9	3.6	4.0	3.8
Overall objective and purpose of tool
Safe environment
Supports creation of a trustworthy environment	3.8	4.0	4.3	–	–	–	–	–	–	4.0
Supports the educator’s contact with participants	4.0	4.2	3.8	–	–	–	–	–	–	4.0
Supports contact and trust between participants	–	–	3.9	3.7	3.0	3.1	3.4	3.6	–	3.5
Reflection, participation, and dialogue
Facilitates reflection	4.2	–	3.8	4.2	4.2	4.2	4.5	4.0	4.0	4.1
Creates dialogue	4.3	–	3.9	4.1	4.2	4.3	4.2	4.3	–	4.2
Creates participation	4.3	3.5	4.0	4.2	4.2	4.1	4.3	4.0	3.7	4.0
Supports articulation of individual participants’ needs and wishes	3.8	–	3.8	3.8	4.2	–	4.3	4.0	–	4.0
Stimulates sharing of experiences between participants	–	–	3.5	3.9	4.5	3.8	3.9	4.0	–	3.9
Relationships
Supports clarifying participants’ relationships	3.3	–	2.6	4.7	4.4	–	–	–	–	3.8
Supports improving participants’ relationships	–	–	–	4.5	4.2	–	–	–	–	4.4
Knowledge, motivation, and action competence
Supports knowledge sharing on participants’ premises	2.8	–	–	3.8	3.3	4.1	–	–	–	3.5
Facilitates development of action competence of individual participants	–	–	–	3.6	3.8	3.2	3.8	3.8	–	3.6
Helps motivate participants to set goals for change and actions	3.7	–	–	–	–	–	4.1	4.0	3.3	3.8
Facilitates identification of individual participants’ need for support for action	–	–	–	3.9	4.0	–	3.8	3.8	–	3.9
Is suitable for “hardly reached” participants	4.2	4.0	3.6	3.9	4.0	3.6	3.4	3.7	3.9	3.8
Is suitable for other participants than “hardly reached”	3.5	4.1	3.8	4.1	4.3	4.0	4.2	3.8	4.3	4.0
Mean	3.8	4.0	3.7	4.0	4.0	3.8	4.0	3.9	3.8	3.9

Note: Items were scored on a 5-point scale from 1 (not at all) to 5 (to a great extent).

Abbreviations: HCPs, health care professionals; PEASCI, person-centered education approach and tool kit targeting self-management of chronic illness.

Table 4 Efficacy of Our Rules, My Immediate World, and Where Am I?

Interviews	Observations	Participant interview quotes	Tool-specific survey ratings
Our Rules
Educators reported that this tool supported a friendly tone during education sessions, an open approach, room for everybody, and a relaxed atmosphere Participants emphasized that too much time was spent on this tool, but they also valued getting to know each other and being involved in formulating rules for their education sessions	A participant expressed difficulty in participating in education sessions requiring too much of her, eg, to speak up in the group. This was then formulated as a rule: All participants should feel OK with education activities Sessions using Our Rules gave rise to participation and dialogue, but many participants were initially reluctant	“Well, the point is more like that you are involved in formulating (the rules), so you take part.” “So, you are on a par when you take part … that’s what I think.”	Supports creation of a trustworthy environment: 4.3 Supports educator’s contact with participants: 3.8 Supports creation of contact and trust between participants: 3.9 Supports articulation of individual participants’ needs and wishes: 3.8
My Immediate World
Educators reported that the tool supported participants in feeling respected and being taken seriously, that it was helpful for them to talk to other peers and mirror one another, and that important perspectives emerged on their support from, for example, their general practitioner Participants liked to get together in pairs and talk about relatives. Most participants described the tool as very useful for reflecting on support from relatives and how they valued the educators One participant did not find it relevant at all and another participant found it difficult to talk about “changing roles at home” at an education session	Moments occurred in which participants were emotionally touched Some participants took photos of the tool with their relatives in place	“It was something like an eye opener afterwards …” “Using the tool made you think about relationships in a new way”	Supports clarifying relationships: 4.7 Supports improving relationships: 4.5 Stimulates sharing of experiences between participants: 3.9
Where Am I?
Educators reported that the tool promoted a lot of dialogue very quickly and that participants reflected on barriers and capabilities in relation to what they wanted to achieve One educator thought that moving around on the floor may cause increased commitment A participant found the tool interactive, engaging, and more participating. Another participant described the tool as prompting him to reflect on his own limitations and to be realistic regarding his desired achievements	Some participants found the tool helpful and obtained new perspectives, but others did not get support to do things differently One educator ended the session by asking how participants experienced the tool. One participant mentioned that it facilitated reflection, and another described getting a guilty conscience because she wanted to do more than she had	“… and then I can see where I want to go. I would like to go just halfway (towards the smiling face) in terms of getting to the swimming bath again …”	“Support articulation of needs and wishes”: 4.3 “Facilitate development of action competence of individual participants”: 3.8 “Help motivate participants to set goals for change”: 4.1 “Facilitate identification of individual participants’ need of support for action”: 3.8

Table S1 Educators, participants, and settings

Surveyed educators	Number (%) N=65
Gender
Female	65 (100)
Professional backgrounda
Nurse	17 (26.2)
Physiotherapist	31 (47.7)
Dietitian	11 (16.9)
Other	10 (15.4)
Work place
Municipality	61 (93.8)
Hospital	3 (4.6)
General practice	1 (1.5)
Years of experience as patient educator
None	8 (12.3)
0–1	12 (18.5)
1–2	5 (7.7)
2–5	20 (30.8)
>5	20 (30.8)
Experience with a similar person-centered education programb
To a large extent	4 (6.2)
To some extent	30 (46.2)
Observational experience	14 (215)
Theoretical experience	9 (13.8)
No knowledge	8 (12.3)
Observed patient education settings	Number (%) N=7
Organizational setting
Municipality	5 (71.4)
Hospital	1 (14.3)
General practice	1 (14.3)
Dialogue tools appliedc
My Day	0
Check-in	0
Our Rules	2 (28.6)
My Immediate World	2 (28.6)
My Contact with Healthcare Professionals	0d
Fact or Fiction	1 (14.3)
Where Am I?	3 (42.9)
We’re on the Way	0
Check-out	1 (14.3)
Education theme
T2D	3 (42.9)
Physical activity	3 (42.9)
Other	1 (14.3)
Target group for education
People with T2D	4 (57.1)
People with chronic illness of different kinds or CVD only	2 (28.6)
Other	1 (14.3)
Number of participants
1	2 (28.6)
6–7	3 (42.9)
10	2 (28.6)
Participant gender
Male only	2 (28.6)
Female only	1 (14.3)
Mixed (30%–60% men)	4 (57.1)
All program participants	N=42
Age in years, average (range)
Male	60.1 (32–86)
Female	55.5 (25–80)
Interviewed program participants	Number (%) N=22
Gender
Male	9 (41)
Female	13 (59)
Total	22 (100)
Age
<51 years	6 (27.3)
51–65 years	7 (31.8)
>65 years	9 (40.9)
Chronic illness
Diabetes	12 (54.5)
CVD	3 (13.6)
COLD	3 (13.6)
None	4 (18.2)
Duration of chronic illness
<1 year	3 (16.7)
1–5 years	4 (22.2)
>5 years	7 (38.9)
Unknown	4 (22.2)
Interviewed educators	Number (%) N=11
Gender
Female	11 (100)
Professional background
Nurse	4 (36.4)
Physiotherapist	3 (27.3)
Dietitian	2 (18.2)
Other	2 (18.2)
Work place
Municipality	7 (63.6)
Hospital	2 (18.2)
General practice	2 (18.2)
Years of experience as patient educator
<5 years	4 (36.4)
>5 years	7 (63.6)

Notes:

a Some educators had more than one professional background.

b A patient-centered general chronic illness education program NEED (Next Education) is widely applied in patient education settings in the southern region of Denmark.^1–3

c In two settings, more than one dialogue tool was applied.

d Included as part of another tool (My Immediate World) on one occasion.

Abbreviations: CVD, cardiovascular disease; COLD, chronic obstructive lung disease; T2D, type 2 diabetes.

Table S2 Use of each tool and contexts in which 65 educators tested tools

Tools	Educators using the tool, N	Times used, N	Average duration, minutes	Themes addressed, Na	Target groups testing the tool, Nb	Used more than once, N	Used at individual consultations, N	Used in group sessions with 2–4 participants, N	Used in group sessions with 5–10 participants, N	Used in group sessions with >10 participants, N	Participants included hardly reached individuals, N
My Day	6	11	28	9	4	4	6	0	0	0	3
Check-in	10	20	116	7	5	7	2	0	6	2	10
Our Rules	15	20	25	10	5	4	0	1c	10c	5c	9
My Immediate World	13	18	32	9	4	4	2c	0	11c	1c	11
My Contact with HCPs	5	6	30	8	3	1	3	0	2	0	5
Fact or Fiction	10	12	26	8	3	2	1	5	1	3	8
Where Am I?	25	42	23	10	5	12	9c	2c	8c	7c	19
We’re On the Way	9	13	40	8	4	3	0	2	7	0	7
Check-out	24	47	14	7	5	15	1c	5c	19c	1c	21

Notes:

a Themes: knowledge, illness, and symptoms; medicine; nutrition; physical activity; smoking/alcohol use; social relations; relationship with HCPs; emotional relationships; stress management; others.

b Target groups: participants with T2D, chronic obstructive lung disease, cardiovascular disease, cancer, and other.

c Total exceeds number of educators who used the tool because some used it with groups of more than one size.

Abbreviations: HCPs, health care professionals; T2D, type 2 diabetes.

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