A systematic review of self-management interventions for children and youth with physical disabilities

Figures & data

Figure 1. Flow of studies through the systematic review process.

Table 1. Characteristics and overview of studies.

First author, Year	Country	Recruitment setting	Study design	N (% females)	Socio-demographics	Clinicalpopulation	Age range(years)	Study quality (AAN class)
Greenley, 2007	USA	Pediatric hospital	Before and after (repeated measures)	10 (70)	70% Caucasian	Spina bifida	8–16	III
Lavigne, 1992	USA	Pediatric rheumatology clinic	Multiple baseline single-subject design	8 (87.5)	75% Caucasian	JRA	9–17	III
McDonagh, 2007	UK	Pediatric rheumatology centers	Before, after and follow-up (repeated measures)	308 (60)^a	91% white/European	JIA	11–17	III
O'Mahar, 2009	USA	Summer camp	Before, after and follow-up (repeated measures)	49	n/a	Spina bifida	7–17	III
Rapoff, 2002	USA	Medical center	RCT	34 (68)	94% Caucasian	JRA	2–16	I
Stinson, 2010	Canada	Pediatric tertiary centers	RCT (non-blind)	46 (67.4)	n/a	JIA	12–18	I

RCT = randomized controlled trial.

AAN [64] class I = rigorous RCT; class II = matched prospective cohort studies or RCTs in a representative population lacking one of the criteria in class I; class III = all other controlled trials.

^aSample size reflects enrolment; at 12 months, sample size reduced to 121 participants due to attrition.

Table 2. Results of studies.

					Result
Trial	Intervention	Measure	Scale	Analysis	Time 1	Time 2		Effect size	p value
Greenley, 2007	To examine the feasibility and acceptability of family intervention to enhance condition management; To examine the impact of the intervention on self-management skills, efficacy and condition management	Youth self-management of medical, educational/prevocational and community domains	Kennedy Independence Scales – Spina Bifida Version	Paired t-test	19.08 (7.61)	22.54 (5.46)		0.53	<0.10
		Parent beliefs of youth readiness/capacity	Expectations in Spina Bifida Questionnaire		1.44 (0.51)	1.29 (0.38)		0.33	<0.10
		Youth beliefs of self-readiness/capacity	Expectations in Spina Bifida Questionnaire		1.63 (0.47)	1.55 (0.40)		0.18	ns
		Perceived stress associated with condition management	Family Burden in Spina Bifida Questionnaire		4.38 (0.39)	4.60 (0.26)		0.66	<0.05
					Time 1	Time 2	Time 3
Lavigne, 1992	To explore the utility of a psychological treatment procedure for children with high levels of pain associated with JRA	Mean pain score of the month	Child-report pain diaries	Mann–Whitney U	4.30 (1.57)	3.66 (2.27)	2.79 (1.56)		<0.05
		Mean pain score of the month	Parent-report pain diaries		4.89 (2.15)	3.93 (2.54)	2.80 (1.90)		<0.05
		Perception of time periods during which pain scores >5	Child-report pain diaries		43.50 (27.94)	28.38 (34.84)	15.75 (17.92)		<0.06
		Perception of time periods during which pain scores >5	Parent-report pain diaries		54.29% (34.36)	31.83% (38.33)	15.86% (23.77)		<0.013
		Parent report of pain-related behaviors	Pediatric Pain Behavior Questionnaire		24.00 (7.25)	22.50 (8.07)	16.00 (8.33)		<0.05
		Overall pain during physical therapy	Physical Therapist ratings		2.92 (2.42)	2.35 (1.31)	2.19 (1.32)		ns
		Parent report of a child's behavior problems	Child Behavior Checklist		53.38 (11.39)	51.12 (13.44)	45.25 (11.51)		<0.06
					Median change score 1 (6 m–0 m)	Median change score 2 (12 m–0 m)	Median change score 3 (12 m–6 m)
McDonagh, 2007	To determine whether the quality of life of adolescents with JIA can be improved by a co-ordinated, evidenced based program of transitional care	Health-related quality of life	Juvenile Arthritis Quality of Life Questionnaire (JAQQ) – youth	Wilcoxon tests or McNemar's test	−0.3	−0.3	0	T1	<0.001
								T2	<0.01
								T3	ns
			JAQQ – parent		−0.2	−0.4	−0.1	T1	<0.01
								T2	<0.001
								T3	ns
		Arthritis-related knowledge	16-item disease-specific multi-dimensional multiple choice measure – youth		2	2	0	T1	<0.001
								T2	<0.001
								T3	<0.01
			16-item disease-specific multi-dimensional multiple choice measure – parent		1	1	1	T1	<0.001
								T2	<0.001
								T3	<0.01
		Satisfaction with program	Youth Satisfaction Measure		−0.2	−0.3	0.2	T1	<0.01
								T2	<0.01
								T3	ns
			Parent Satisfaction Measure		−0.4	−0.6	0	T1	<0.001
								T2	<0.001
								T3	ns
		Independent health behaviors	Self-medicating		−0.9	4.2	−5.9		all ns
			Independent visits		4.9	5	4.7		All ns
			Work experience		0	0	0		All <0.001
		Pre-vocational experience	Career advice		0	0	0		All <0.001
			Household activities (%)		1.6	8.2	8.5		All ns
			Vocational plans (%)		6.3	6.8	7.2		All ns
					Time 1	Time 2	Time 3	Effect size
O'Mahar 2009		Sharing responsibility	Sharing of Spina Bifida Management Responsibilities Measure	Repeated measures ANOVA	2.08 (0.44)		2.12 (0.49)	0.258	<0.001
		Mastery of self-care tasks	Spina Bifida Independence Survey: child		85.58 (19.43)		89.34 (19.37)	0.125	ns
			Spina Bifida Independence Survey: parent		78.57 (19.96)		82.77 (20.82)	0.177	<0.05
		Social goals	Youth ratings		2.38 (1.02)	3.67 (1.06)	3.52 (1.03)	0.428	<0.001
			Parent ratings		2.37 (0.95)		2.99 (0.96)	0.406	<0.001
		Spina bifida goals	Youth ratings		2.53 (0.85)	3.52 (0.94)	3.30 (1.07)	0.662	<0.001
			Parent ratings		2.38 (0.76)		2.98 (0.94)	0.401	<0.001
		Knowledge of spina bifida	Knowledge of Spina Bifida – Child Version		1.40 (0.50)		1.05 (0.78)	0.141	<0.01
		Self-concept	Harter's Self-perception Profile for Children		2.74 (0.47)	2.78 (0.49)	2.85 (0.42)	0.052	ns
		Depressive symptoms	The Child Depression Inventory		0.43 (0.56)	0.61 (0.64)	0.46 (0.58)	0.019	ns
					Time	Experimental group	Control group
Rapoff, 2002	To evaluate a clinic-based, nurse-administered educational and behavioral intervention to prevent anticipated drop in adherence of non-steroidal medication among newly diagnosed patients with JRA	Adherence	Medication Event Monitoring System	Mann–Whitney U	Pre	75.3 (27.1)	72.5 (30.4)		0.78
					Post	77.7 (21.5)	56.9 (33.0)		0.02
		Disease activity and functional status	Number of active joints		Pre	2.7 (5.0)	2.8 (2.9)		0.21
					Post	3.2 (4.9)	2.5 (3.7)		0.54
			Number of minutes of morning stiffness		Pre	19.7 (19.2)	30.0 (35.0)		0.55
					Post	21.1 (22.8)	31.4 (30.3)		0.54
			Global Disease Activity rating: quiescent/mild	Wilcoxon tests	Pre	13 (68)	10 (67)		ns
					Post	16 (84)	12 (80)		ns
			Global Disease Activity rating: moderate/severe		Pre	6 (32)	5 (33)		ns
					Post	3 (16)	3 (20)		ns
			Childhood Assessment Questionnaire		Pre	0.64 (0.47)	0.88 (0.62)		0.3
					Post	0.71 (0.59)	0.79 (0.61)		0.65
					Time	Experimental group	Control group	Effect size	.
Stinson, 2010	To determine the feasibility of a 12-week internet-based self-management program of disease-specific information, self-management strategies and social support with telephone support for youth with JIA	Health-related quality of life	JAQQ	Paired t-test	Pre	2.35 (1.34)	2.74 (1.36)	0.2	0.62
					Post	1.95 (1.40)	2.27 (1.21)
		Pain	Recalled Pain Inventory		Pre	2.73 (1.93)	3.00 (2.00)	0.78	0.03
					Post	2.17 (1.34)	3.47 (2.12)
		Stress	Perceived Severity of Stress)		Pre	1.98 (0.39)	2.09 (0.36)	0.2	0.65
					Post	1.98 (0.42)	2.13 (0.42)
		JIA-specific knowledge	Medical Issues, Exercise, Pain and Social Support Questionnaire		Pre	4.34 (2.17)	3.70 (1.98)	1.32	0.001
					Post	6.98 (1.08)	4.16 (1.96)
		Self-efficacy	Children's Arthritis Self-Efficacy Scale (CASE) - symptoms		Pre	6.14 (1.67)	5.39 (2.85)	0.11	0.78
					Post	7.47 (1.89)	6.55 (2.75)
			CASE – emotional		Pre	7.42 (2.39)	7.43 (2.82)	0.31	0.79
					Post	7.96 (2.38)	8.11 (2.22)
			CASE – activity		Pre	6.85 (2.28)	6.99 (2.81)	0.16	0.43
					Post	7.88 (2.42)	7.60 (2.72)
		Adherence	JIA-specific Child Adherence Report Questionnaire (CARQ) – medication		Pre	7.28 (3.01)	7.30 (2.63)	0.26	0.52
					Post	8.14 (8.14)	7.50 (2.96)
			JIA-specific CARQ – exercise		Pre	7.00 (2.78)	4.16 (2.99)	1.11	0.09
					Post	5.05 (3.78)	4.68 (3.26)
			JIA-specific Parent Adherence Report Questionnaire		No descriptive data provided				ns

Table 3. Intervention components.

First author, Year	Treatment	Delivery	Theory	Delivery setting	Intervention format	Delivery format	Meetings	Practice/ Homework	Phone contact	Parent involvement×	No. of sessions (length)	Estimated total intervention time	Duration
Greenley, 2007	Meetings involved reviewing barriers, providing education, teaching problem solving skills, practice with problem solving during the meeting, home practice with problem solving, setting goals to increase child involvement in managing spina bifida	Trained interventionist	Problem solving models	Hospital	O	I	Y	Home	N	D	2 (60–90 m)	120 min	3 months
Lavigne, 1992	Session 1 – Muscle relaxation taught to both child and parent. Session 2 – Relaxation training. Sessions 3 and 4 – Training enhanced with EMG biofeedback. Sessions 5 and 6 – Training in thermal biofeedback with the child	Pediatric psychologist	Thermal biofeedback and cognitive behavior training	Hospital	O	S	Y	Home	N	D	6 (60–90 m)	390 min	3 months
McDonagh, 2007	Program included individualized transition plans created for each young person and parent to reflect on development and components of the transition program in terms of health, home and school. They were designed to reflect the developmental stages of adolescence (early, mid, late) and reviewed at each clinic visit or every 6 months. Once a template was complete the youth would be invited to move onto the next plan. Other components of the program included age and developmentally appropriate informational resources for adolescents, information resources for parents and local program co-ordinators	Local program coordinators	n/a	Hospital	O	S and I	Y	None	N	D	3 (n/a)	Unknown	12 months
O'Mahar, 2009	Intervention within a camp environment involved psycho-educational groups (discussion, role play, learning strategies (memory diary, verbal rehearsal, problem-solving approach)) + individual goal-setting, coaching	Trained interventionist and counselors	Empowerment approach	Community (camp)	G and O	S and I	Y	Camp	N	I	5 (90 m)	450 min psycho-educational group	<1 week
Rapoff, 2002	The intervention included educational and behavioral strategies for enhancing adherence; participants and their parents viewed a 10-min audiovisual program and received a booklet which described adherence-enhancement strategies (cueing, pairing medication with another routine), monitoring (using a calendar to track medication), positive reinforcement (praise and rewards that are exchanged for privileges) and discipline (using time-out for defiant refusals) The study nurse reviewed these strategies with participants and parents. The control group received a general educational intervention watching a 13-min video reviewing the types of JRA, signs and symptoms and medical treatments. All procedures took place during a 30-min clinic visit, following which the nurse phoned participants and parents every 2 weeks for 2 months and then monthly for 10 months. For the experimental group the nurse reviewed and problem-solved about adherence improvement strategies	Nurse practitioner	Applied behavior analytic theory (contingency-shaped behavior)	Hospital and home (phone)	O	S	1 only	Home	Y	D	16 (<30 min) +  phone calls	Unknown	12 months
Stinson, 2010	Teens Taking Charge: Managing arthritis online (a multi-component treatment protocol consisting of self-management strategies, disease-specific information and social support) – provided on a restricted website that was supported through telephone contact with a trained coach (non-health professional). Youth modules included learning about different types of arthritis, understanding how arthritis is diagnosed, medications, managing symptoms, managing stress and negative thoughts, relaxation, distraction, other types of care (exercise, nutrition, splints), self-monitoring and supports, lifestyle issues and looking ahead (education, vocation and transitional care issues). Two parent/caregiver modules encouraged healthy youth behavior. The content was interactive, multi-layered and written at a Grade 6–7 level and geared to self-management needs identified by adolescents and their parents. Control group was given self-guided access to the website	Trained coach	n/a	Home (online)	O	S	N	Home	Y	I	12 (20–30 min modules + weekly PC avg 17 min)	207 min	3 months

RCT = randomized controlled trial, I = indirect, D = direct, S = standardized intervention, I = individualized intervention, O = one-to-one, G = group, Y = yes, N = no, n/a = not applicable.

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