Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services

Figures & data

Table 1. Internal consistency reliabilities of the adapted instruments.

Instrument		Cronbach’s α
Parent-Patient Activation Measure [Parent-PAM]	13 items	0.80
Health Care Climate Questionnaire [HCCQ]	15 items	0.95
Treatment Self Regulation Questionnaire [TSRQ]
Autonomous Motivation	6 items	0.87
Controlled Motivation	6 items	0.73

Table 2. Basic interview questions.

What does self-management mean to you?
How important is self-management in your own situation?
To what degree do you conduct self-management yourself?
What do you expect of professionals regarding self-management support?
How do you experience the support by professionals?
Which facilitating factors do you experience regarding self-management?
Which barriers do you experience regarding self-management?

Table 3. Characteristics of the samples.

	Survey N = 239	Interviews N = 18
	n (%) / M (SD)	n / % / M(SD)
Parent characteristics
Age (min-max)	21–62 / 39.4 (6.4)	26–55 / 37.7 (6.7)
Gender (female)	206 (86.2%)	17 (94,4%)
Nationality (Dutch)	227 (95%)	17 (94.4%)
Education
Low (Primary school / lower vocational education)	28 (11.7%)	4 (22.2%)
Middle (middle vocational education)	90 (37.7%)	6 (33.3%)
High (Higher vocational education / University)	117 (49.0%)	8 (44.4%)
Relationship status (living with a partner)	202 (84.5%)	16 (88.9%)
Family characteristics
Family income
<1x average*	16 (6.7%)	1 (5.6%)
1–2x average	72 (30.1%)	3 (16.7%)
>2x average	142 (59.4%)	13 (72.2%)
* gross average income €37 000 /y
Child characteristics
Age (min-max))	0–12 / 6.4(3.2)	1–10 / 5.24 (3.1)
Gender (boy)	138 (58.7%)	13 (72.2%)
Characteristics of the condition (during the last year)
visit to doctor	176 (73.6%)	13 (72.2%)
admitted in hospital	77 (32.2%)	4 (22.2%)
surgery	49 (20.5%)	2 (11.1%)
irregular course of illness	42 (17.6%)	2 (11.1%)
medication	115 (48.1%)	7 (38%)
use of helping aids	144 (60.3%)	13 (72.2%)
diet	44 (18%)	4 (22.2%)
hearing limitations	22 (9.2%)	2 (11.1%)
visual limitations	56 (23.4%)	8 (44.4%)
visible malformations	123 (51.5%)	11 (61.1%)
communication problems	96 (40.2%)	14 (77.8%)
behavioral problems	65 (27.2%)	7 (38.9%)
learning problems	84 (35.1%)	6 (33.3%)
epilepsy	38 (15.9%)	2 (11.1%)

Figure 1. Boxplot, levels of parent activation regarding self-management.

Table 4. Descriptive statistics of the Parent-PAM, TSRQ and HCCQ.

	Mean	St. Deviation	Skewness	Min-Max
Parent-Patient Activation Measure [Parent-PAM]	65.12	14.73	0.47	34.20–100
Treatment Self-Regulation Questionnaire [TSRQ]
Autonomous (intrinsic) motivation	5.88	0.95	−0.98	1.83–7
Controlled (extrinsic) motivation	2.8	1.08	0.38	1–6
Healthcare Climate Questionnaire [HCCQ	5.84	0.83	−0.97	2.47–7

Table 5. General topics and identified themes.

General topics	Themes
Attitudes towards self-management	Views on self-management
How parents feel and think about self-management	making own decisions
	being engaged
	governmental policy
	partnership / collaboration
	Value of self-management
	Competence
	adequate knowledge
	learning process
	self-efficacy
Expectations regarding self-managementsupport	Relationship with professionals
What parents expect of professionals	feeling acknowledged
	trust in professional
	personal traits of professional
	Expertise of professionals
	state-of-the-art knowledge
	interpersonal skills
	Attitude of professionals
	openness
	empathy
	engagement
	clarity and guidance
	attitude towards child
Factors influencing self-management	Obstructing factors
What parents experience as barriers or facilitators	planning problems
	bureaucracy
	lack of coordination
	Supporting factors
	communication
	continuity
	flexibility
	parent-to-parent contact
Degree of self-management	Acceptance
The extent to which parents are active self-managers	Taking initiative
	Finding balance
	between support and  self-management
	with partner and/or family