ONLINE SUPPLEMENTAL MATERIAL ONLY
Appendix 1. Search algorithms used in each electronic database.
Source: Search terms^ Articles identified
Full text retrieved
Eligible articles*
Medline: MeSH headings: {Adolescent* OR Young Adult* OR teen$.mp OR emerging adult.mp OR AYA.mp OR TYA.mp} AND {Intervention Studies* OR Pilot Projects* OR Program Development* OR Program Evaluation* OR Psychotherapy, Group* OR Social Support* OR Peer Group*} AND {Adaptation, Psychological* OR Anxiety* OR Depression*} AND {Neoplasms/Nursing, Psychology, Rehabilitation, Therapy* OR Diabetes Mellitus, Type 1 OR Juvenile Diabetes OR Cystic Fibrosis OR Asthma OR Juvenile Rheumatoid Arthritis.mp}
366 53 11
PsychInfo: Index headings: {Adolescent* OR Young Adult* OR teen$.mp OR emerging adult.mp OR AYA.mp OR TYA.mp} AND {Intervention* OR Psychotherapy* OR Program Development* OR Program Evaluation*} AND {Emotional States* OR Adjustment* OR “Resilience (Psychological)”* OR Coping Behavior*} AND {Neoplasms* OR Diabetes Mellitus* OR Sickle Cell Disease* OR Cystic Fibrosis* OR Asthma* OR Rheumatoid Arthritis* OR Juvenile Rheumatoid Arthritis* OR Chronic Illness*}
29 3 2
Embase: Index headings: {Adolescent* OR Young Adult* OR teen$.mp OR emerging adult.mp OR AYA.mp OR TYA.mp} AND {Intervention Studies* OR Pilot Projects* OR Program Development* OR Program Evaluation* OR Psychotherapy, Group* OR Social Support* OR Peer Group*} AND {Adaptation, Psychological* OR Anxiety* OR Depression*} AND {Neoplasms/Nursing, Psychology, Rehabilitation, Therapy* OR Diabetes Mellitus, Type 1 OR Juvenile Diabetes OR Cystic Fibrosis OR Asthma OR Juvenile Rheumatoid Arthritis}
529 14 1
CINAHL: Subject headings: {adolescence OR adolescent OR youth OR young adult OR teenager OR teen OR emerging adult OR AYA OR TYA} AND {Adaptation, Psychological* OR Coping* OR Emotions* OR Psychosocial Aspects of Illness* OR Affective Symptoms*} AND {Neoplasms OR Diabetes Mellitus* OR Anemia, Sickle Cell OR Cystic Fibrosis OR Asthma OR Arthritis, Juvenile Rheumatoid OR Chronic Disease OR chronic illness} AND {intervention OR group OR therapy OR support OR program OR pilot study}
299 15 0
Medline in Process & Non-Indexed Citations: Keywords: {adolescen$ OR young adult OR teen$ OR OR emerging 10 2 0
adult OR AYA OR TYA} AND {neoplasms OR cancer OR diabetes mellitus OR sickle cell disease OR cystic fibrosis OR asthma OR juvenile rheumatoid arthritis} AND {adaptation OR coping OR distress OR anxiety OR depression OR adjustment} AND {intervention OR program development OR program evaluation OR pilot project OR feasibility study OR psychotherapy OR support group}
Other sources: Search of reference lists of relevant articles, relevant authors, and table contents of key journals 52 10
Total number of articles eligible for study, excluding duplicates 25
^ Limits: 1979-2010; English; Human/ humans
* After duplicates removed
Appendix 2: Study characteristics and results from emotional and peer support group interventions (significant results in bold)
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
Daley (1992)#
Diabetes (N=54)
12-16 years
Yes; no details
Yes Bi-monthly, informal meeting with a lay-person sponsor over 10-months
Personal discussions; diabetes coping; modelling of positive regimen adherence
Child Behavior Checklist-Youth Self-Report form
Diabetes Adjustment Scale * (d=.66-.71, med)
Self-Perception Profile for Adolescents * (d=.42, med)
State Trait Anxiety Inventory (STAI)
Heiney (1988)
Cancer
(N=14)
14-19 years
Usual care
No 6 x 1hr weekly sessions, facilitated by ‘therapists’
Support group, educational components & discussion
Health Locus of Control Scale
Rosenberg Self-Esteem Scale
STAI
Zung Depression Scale
Schwartz et al (1998)
Cancer
(N=76)
18-29 years
Age-matched, healthy controls.
No 3-day ‘weekend’ program (“Moving On”), led by licensed social workers
Psychological responses to the cancer experience; quality of life, self-esteem, problem-solving, interpersonal exercises
Global Quality of Life**
Ryff Happiness Scale*
Short Form Health Survey
Wang et al (2008)#
Diabetes
(N=182)
12-18
Historical control of diabetic non-
No 20-day camp program (“Camp Sweeney”)
Daily medical education lectures and discussions; diabetes regime monitoring
Beck Depression Inventory-2nd Edition
Littlefield Self-Efficacy Scale
Self-report quality of life
Parent-rated quality of life
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
years attendees
Personal Adjustment and Role Skills Scale-III* (parent-rated)
The Self Efficacy Scale
* p<.05 ** p<.01 (where only some items were significant, the effect size refers to these only)
# also measured medical and/or treatment adherence outcomes (not listed)
Appendix 3: Study characteristics and results from education/psychoeducational interventions (significant results in bold)
AUTHOR
(YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
Andre et al (2001)
JIA
(n=17) §
13-19 years
Usual care
No 1 x 8hr group seminar
Variety of topics presented by different health professionals
The Medical, Exercise, Pain, and Social Support questionnaire*
Canada et al (2007)
Cancer
(N=21)
15-25 years
Waitlist Yes 2 x 90 minute individual counselling sessions, delivered by a doctoral-level clinical psychologist, plus workbook. 1-month ‘booster’ phonecall
Impact of cancer therapy on sexual development and fertility, peer relations and sexual identity
Brief Symptom Inventory (Global Severity Index)** (d=3.19, very large)
Body Image Instrument
Cancer Rehabilitation Evaluation System** (d=1.72, large)
Sexual Concerns Questionnaire
Sexual Knowledge Test* (d=1.12, large)
De Wit et al (2008)
Diabetes (N=91)
13-17
Usual care
Yes 3 x regular appointments with a pediatrician, spaced over 12-
Discussion of adolescent’s HRQoL, including symptoms, treatment barriers and adherence,
Centre for Epidemiological Studies Depression scale
The Child Health Questionnaire**
Diabetes-specific Family Conflict Scale
AUTHOR
(YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
years months worries, and communication
Patient’s Evaluation of the Quality of Diabetes Care**
Hazzard et al (2002)
Asthma & SCD
(N=38) §
13-18 years
Recreational therapy
Yes Program delivered in separate 3-day educational curricula according to disease and age, supervised by medical staff, in addition to free use
Includes health-education activities as well as components designed to enhance social support and coping
Asthma Knowledge Scale/Sickle Cell Disease Knowledge Scale
Pediatric Coping Checklist (KIDCOPE)** (d=2.9, very large)
Perceived Social Support-Friends subscale
Jones et al (2010)
Cancer
(N=65)
12-18 years
Educational handbook
Yes 7 module, educational CD-ROM, viewed self-guided over 3 months
Cancer-, treatment-related information, and stories from other teen cancer patients
Multidimensional health locus of control scale* (d=.63, med)
Pediatric Oncology Quality of Life Scale
KIDCOPE
Self-Efficacy scale
AUTHOR
(YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
Cancer knowledge questionnaire
Kato et al (2008) #
Cancer
(N=375)
13-29 years
Control video game.
Yes Participants play “ReMission” interactive video game for ≥1 hour/week for 3 months
Participants engage with treatment-related knowledge, self-care behavior and relaxation strategies to advance in the game
Cancer knowledge scale* (d=.15, small)
Functional Assessment of Cancer Therapy-Generic scale
Multidimensional health locus of control scale
Pediatric Quality of Life-Generic Core Scale
Perceived Stress Scale
Self-efficacy scale* (d=.23, small)
Løding et al (2008)
Diabetes
(N=19)
13-17 years
Attention
control
Partially randomized (one group formed on geographical basis)
10 x 1 hour group sessions, delivered monthly; adolescent and parent groups separate
Psychoeducation and problem-solving on diabetes-related topics
Diabetes Quality of Life for Youths
Rodgers Fischl et al (2010)
Diabetes (N=88) 13.2-19.7 years
Usual care
Yes Delivered during 3x diabetes clinic visits, through (i) a two-part CD-ROM, (ii) a book, and (iii) a meeting with a nurse
Preconception counselling program targeting knowledge about diabetes, pregnancy, sexuality, and reproductive health
Knowledge of diabetes and pregnancy (Likert scale)** (d=1.23, very large)
Perceived benefits of seeking/using family planning (Likert)** (d=.73, med)
Intention to initiate discussion with healthcare provider
AUTHOR
(YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
Actual initiation of discussion with healthcare provider
* p<.05 ** p<.01 (where only some items were significant, the effect size refers to these only) # also measured medical and/or treatment adherence outcomes (not listed) § AYAs a subset of the total sample
Appendix 4: Study characteristics and results from skills-based interventions, targeted at AYAs alone (significant results in bold)
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
Boardway (1993)
Diabetes (N=19)
12-17 years
Usual care
Yes 13 group sessions, with SMT spaced across 12 weeks
Diabetes SMT included identifying stressful situations, assertive problem solving for family conflict & peer pressure, & cognitive reframing
Diabetes Stress Questionnaire* (d=.91, large)
Life Events Checklist
Self-Efficacy for Diabetes Scale
Ways of Coping Checklist
Channon Diabetes Support Yes Mean of 4 x Motivational Interviewing: Children’s Health Locus of Control Scale
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
(2007) # (N=66)
14-17 years
visit individual sessions, 20-60mins each, over 12 months; delivered by psychologists
involved exploring discrepancies between beliefs and behavior, and using problem-solving and goal-setting to build more adaptive behavior
Diabetes Family Behavior Scale
Diabetes Knowledge Scale
Diabetes Quality of Life for Youths** (d=.76-1.31^, med-very large)
Health Care Climate Questionnaire
Personal Models of Diabetes Scale** (d=.86-1.87^, large-very large)
Self-Efficacy for Diabetes Scale
Wellbeing Questionnaire** (d=.48-1.49^, med-very large)
Grey et al. (2000) #
Diabetes (N=77)
12-20 years
Intensive diabetes management alone
Yes 6 x weekly 1.5 hour CST sessions delivered in small groups by psychologists, followed by 12x monthly visits
Training positive coping skills by role-playing problematic social scenarios. This involved cognitive behavior modification, problem-solving, and conflict resolution
Child Depression Inventory** (d=.72, med)
Diabetes Quality of Life for Youths** (d=.63, med)
Issues in Coping with Insulin-Dependent Diabetes Mellitius scale** (d=.44-.50, med)
Self-Efficacy for Diabetes Scale* (d=.44-1.03^, med-large)
Hains (2000)#
Diabetes
(N=14)
Wait-list Yes 6 x 1-hour weekly SMT group sessions, delivered by doctoral level
Targets illness and stress appraisals and positive coping strategies via 3-phase cognitive behavioral, stress
Diabetes Stress Questionnaire
Pediatric coping checklist (KIDCOPE)
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
State-Trait Anxiety Inventory
Hampel et al (2003)
Asthma
(n=19)§
14-16 years
Standard patient education
No 10 x 1-hour group SMT sessions, over a 4-week inpatient stay, delivered by staff
Involved cognitive restructuring, self-control techniques, problem-solving, modelling, role play, relapse prevention, & skill practice
German Coping Questionnaire for Children and Adolescents* (d=1.0, large)
Hinds et al (2004)
Cancer
(N=78)
12-21 years
Attention control.
Yes 1 x 40-minute session, delivered verbally by either a nurse or a social worker
Self-care coping education and strategy rehearsal, including peer-modelled coping strategies (presented via a video)
The Hopelessness Scale
Hopefulness Scale for Adolescents
Nowicki-Strickland Locus of Control Scale
Rosenberg Self-Esteem Scale
Symptom Distress Scale
Self-Efficacy Scale
Whittemore et al (2010)
Diabetes (N=12)
13-16 years
Educational website control
Yes 5x weekly online sessions, including peer interaction via ‘discussion boards’
‘TEENCOPE’ website includes sessions on self-talk, communication skills, social problem skills, stress management & conflict
Pediatric Quality of Life Inventory
Perceived Stress Scale
Issues in Coping with Insulin Dependent Diabetes Mellitus-Child Scale
Self-Efficacy for Diabetes Scale
Children’s Depression Inventory
* p<.05 ** p<.01 (where only some items were significant, the effect size refers to these only) # also measured medical and/or treatment adherence outcomes (not listed) § AYAs a subset of the total sample SMT=stress management training
CST=coping skills training
^ Effect sizes are presented as a range to represent significant effects across multiple timepoints.
Appendix 5: Study characteristics and results from skills-based interventions, with parent/family inclusion (significant results in bold)
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
Barakat et al (2010)
SCD
(N=53)
12-18
Disease education attentio
Yes Delivered at home across 4 x 90 minute sessions (3 2-weeks apart, plus 1 month final
Cognitive-behavioral techniques (incl. deep breathing/guided relaxation, positive coping statements and guided imagery, targeted primarily at pain and
Health service use
Pain coping
Pain-related hindrance of goals
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
years n control booster session); delivered by psychologists
related health/psychological outcomes
Disease knowledge
Disease self-efficacy
Family communication
Kazak et al. (2004)
Cancer
(N=150)
10.8-19.28 years
Wait-list Yes Four-session, 1-day manualized intervention; multifamily group discussion format; delivered by specially trained psychologists, nurses and social workers
Sessions covered: (1) How cancer has affected me and my family; (2) Coping skills; (3) Getting on with life – cancer, adolescents and families; and (4) Pulling it all together – Family Health and our future.
Impact of Events Scale-Revised** (d=.46, med)
Post-Traumatic Stress Disorder Reaction Index
Revised Children’s Manifest Anxiety Scale
Satin Diabetes Wait-list. Yes. 6 x weekly 90- Mutifamily groups discussed Family Environment Scale
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
(1989) (N=32)
12-19 years
minute MFDG sessions, delivered by psychologists; with or without added parent diabetes self-care
simulation
diabetes management, attitudes, communication, problem-solving, and cognitive skills to deal with diabetes-related family stress. In Parent Simulation adolescents teach parents diabetes management regime which parents follow for a week
Diabetes attitudes*
Stinson et al (2010)
Juvenile Idiopathic Arthritis (N=46)
Attention
control
Yes 12x weekly 20-30 minute online sessions in addition to regular phone contact with a coach for
Adolescent modules include education about arthritis (symptom management, diagnosis, medications), managing stress & negative thoughts, relaxation, distraction, other types of care,
Juvenile Arthritis Quality of Life Questionnaire
Recalled Pain Inventory* (d=.78, large)
Perceived Severity of Stress Questionnaire
AUTHOR (YEAR)
SAMPLE (N)
DESIGN INTERVENTION RESULTS (Cohen’s d)
Control Randomized Process Content
12-18 years
adolescents; 2 sessions for
parents
lifestyle issues, and ‘looking ahead’ future issues; parents/caregiver sessions help them encourage healthy behavior (the effect of arthritis and helping parents learn to let go)
Medical Issues, Exercise, Pain, and Social Support Questionnaire** (d=1.32, very large)
Children’s Arthritis Self-Efficacy Scale
Wysocki et al. (2001) #
Diabetes (N=119)
12-17 years
Current therapy (CT)
Yes 10 x sessions, of either Behavior-Family Systems Therapy (BFST) vs. Education/ Support group (ES), delivered by psychologists
ES sessions emphasized diabetes education and social support
BFST: guided by family needs & focused on problem-solving and communication skills, cognitive restructuring of diabetes beliefs, and resolution of family issues (e.g., conflict)
Diabetes-Related Conflict Scale*
Parent-Adolescent Relationship Questionnaire*
Teen Adjustment to Diabetes Scale
Wysocki (2006) #
Diabetes
(N=104)
11-16 years
Usual care
Yes 12 x multifamily meetings over 6 months; received either BFST-D or Education & Support (ES), delivered by psychologists
ES: diabetes education and social support
BFST-D: as BFST above with the addition of family-specific problem-solving to reduce treatment barriers, behavioral contracting training, advanced diabetes control education, and parent simulation of diabetes
Diabetes-Related Conflict Scale*
Parent-Adolescent Relationship Questionnaire
* p<.05 ** p<.01 MFDG=multifamily discussion group BFST=behavior family systems therapy; BFST-D= behavior family systems therapy for diabetes # also measured medical and/or treatment adherence outcomes (not listed)
Top Related