“What we want”: chronically ill adolescents’ preferences and priorities for improving health care

Figures & data

Figure 1 Overview of mixed methods research on preferences for care from “On Your Own Feet”.

Figure 2 Questions related to preferences in the interview protocol for the peer research interviews.⁴⁰

Copyright © 2010, John Wiley and Sons. Reproduced with permission from van Staa et al.⁴⁰

Note: Questions designed in collaboration with co-researchers.

Table 1 Adolescents’ socio-demographic and disease-related characteristics in preference studies in the research project ‘On Your Own Feet’

	n	%	n	%	n	%
	Interviews n = 31^a		Peer research n = 34^b		Questionnaire n = 990^c
Gender
Girls	15	48.4	23	67.6	560	56.6
Boys	16	51.6	11	32.4	430	43.4
Age
12–15 yrs	17	54.8	23	67.6	608	61.4
16–19 yrs	14	45.2	11	32.4	382	38.6
Mean (SD)	15.3 (2.1)		14.4 (1.7)		15.0 (1.9)
Ethnicity
Dutch surname	26	83.9			851	86.0
Non-Dutch surname	5	16.1			139	14.0
Missing data			34
Educational level
Lower/middle	17	68.0			525	55.7
Higher	8	32.0			417	44.3
Missing data	6		34		48
Number of outpatient visits in past three years
≤12	19	61.3	22	64.7	501	50.6
≥13	12	38.7	12	35.3	489	49.4
Mean (SD)					17.2 (16.3)
Hospital admissions in past three years
Yes	12	38.7	30	88.2	238	24.0
No	19	61.3	4	11.8	752	76.0
Age at diagnosis
At birth and during first 5 years	22	71.0	14	41.2	684	69.2
After 6 years of age	9	29.0	20	58.8	304	30.8
Missing data					2
Prescribed medications, diet or exercise
Yes	24	77.4			623	62.9
No	7	22.6			367	37.1
Missing data			34
Presence of physical limitations
Yes	11	35.5	5	16.7	285	28.8
No	20	64.5	25	83.3	705	71.2
General health score (range 1–5) mean (SD)	3.0 (0.7)				3.6 (1.0)
Missing data	31		34

Notes:

a Diagnoses represented in the interviews: scoliosis/kyphosis, facial schisis, benign intracranial hypertension, congenital bladder disorder, congenital heart disorders, rheumatoid arthritis, hemophilia, diabetes mellitus (DM), epilepsy, inflammatory bowel disease (IBD), cystic fibrosis (CF), various metabolic disorders, HIV, nephrotic syndrome, immune and hormone deficiencies, lung insufficiency, progressive kidney failure, congenital skin diseases, asthma, and neuromuscular diseases;

b Diagnoses represented in the peer research study: congenital heart disorders (3), rheumatoid arthritis (3), hemophilia (3), diabetes mellitus (4), inflammatory bowel disease (4), end-stage renal insufficiency (8), skin diseases (2), neuromuscular diseases (3), cancer (1), various congenital conditions (2), unknown (2);

c In the questionnaire, the five largest diagnostic categories were (ICD-9 classification): congenital anomalies and conditions originating in the perinatal period (26.0%); neoplasm (13.0%); endocrine, nutritional, metabolic diseases, and immunity disorders (12.0%); diseases of the nervous system and sense organs (11.6%); and diseases of the musculoskeletal system and connective tissue (9.9%).

Abbreviation: SD, standard deviation.

Table 2 Qualitative themes and sub themes related to preferences for health care providers, outpatient consultations and hospital care, and overall quality

Preferences for health care providers Being trustworthy and honest Being caring and understanding Listening and showing respect Being taken seriously Focusing on me Being treated as an adult Being competent Preferences for outpatient consultations Answering all my questions Attention to my and my parents’ needs Clear and concise communication Limited waiting times Attractive outpatient surroundings Preferences during hospital admissions Avoiding pain and discomfort Keeping in touch with home Being entertained Hospitalization with peers Being heard Central themes related to quality Having a feeling of trust Having voice and choice

Table 3 Top 5: most important qualities of health care providers and most important issues related to hospital consultations and inpatient care (n = 988)

Make your own top 5	Mean (SD)^a	% number 1^b
I) What is the most important quality of a good doctor or nurse? (S)he should…
Be an expert & know what (s)he’s doing	3.5 (1.5)	41.3
Be trustworthy and honest	3.2 (1.3)	18.9
Be kind and able to reassure me	3.0 (1.4)	18.1
Be able to listen carefully and be patient	2.7 (1.2)	9.7
Be focused on me and consider my opinion	2.5 (1.4)	11.9
II) What is most important to you when you have an appointment in the outpatient department?
That all my questions are answered	3.7 (1.3)	35.4
That I don’t have too wait too long	3.5 (1.3)	29.4
That I and my parents get all the time and attention we need	3.4 (1.2)	21.3
That the consultation does not take too long	2.3 (1.2)	5.9
That there is sufficient distraction in the waiting room	2.0 (1.3)	8.1
III) What is most important to you when you’re hospitalized?
That I don’t have too much pain and other discomfort	3.7 (1.3)	38.2
That I can keep in touch with my friends and family	3.4 (1.4)	31.6
That health care providers listen to me	3.0 (1.2)	10.9
That there is sufficient distraction	2.6 (1.3)	9.8
That I am hospitalized together with peers/other adolescents	2.3 (1.4)	9.5

Notes:

a Participants rank-ordered five statements related to each topic: number 1 was the most important quality or issue and received 5 points; the least important quality or issue received 1 point. Range for the means is 1–5 (5 being most important);

b percentage of adolescents who rated this statement as most important (rated as number 1).

Abbreviation: SD, standard deviation.

Figure 3 Priorities for improvement in the children’s hospital: Percentage of adolescents that selected this item in the survey (n = 990).

Table 4 Comparison of themes in qualitative studies into adolescents’ preferences for their interactions with health care professionals

Our study	Review by Freake et al^Citation46	Woodgate^Citation23	Beresford and Sloper^Citation26	Farrant and Watson^Citation9	Klostermann et al^Citation25	Moules^Citation33
Being trustworthy and honest	“What I tell them is confidential”		Behavior toward adolescent	Confidentiality	Confidential Information/honesty	Respect
	“I can trust them”
	“They explain things and give me information and advice”	Give me some encouragement				Explanations
Listen and respect (being taken seriously)	“They listen to me” “They are non-judgmental”	Don’t force me	Communication skills	Good listener		Respect/choice
Being caring and understanding	“They are kind, caring, sympathetic, understanding”	Try to understand			Holistic trust	Friendly staff
	“I feel comfortable, and it is easy to talk”	Have a sense of humor
Being competent	“They are competent, experienced and qualified”	Know what you’re doing		Medical knowledge	Competence	Technical expertise
Focusing on me/(being treated as an adult)	“They do not patronize me or treat me like a child”	Don’t treat me differently	Status issues		Fidelity
	“I am treated as an individual, not just part of their job”	Treat me as a person	Condition-centered vs person-centered
	“For medical issues many girls prefer to see a female doctor”		Gender preferences	Same gender
(Trust)	“I get to see the same person each time”		Familiarity (continuity of person)

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