Table 1.
Description of Studies Included in the Review
| Citation | Metho d |
Location | Statement of purpose | Participants | Age (years) of index child |
Data collection | CF regimen |
|---|---|---|---|---|---|---|---|
| Carpenter & Narsavage (2004) | QL | US | Describe lived experiences of families caring for a child with cystic fibrosis at time of initial diagnosis |
9 family members |
NS | Focus group and written narratives |
NS |
| Cronin (2004) | QL | US | Explore how type of hidden impairment in a child influences family routines and occupations |
22 mothers of CF; 22 mothers of ADHD |
5–18; × = 11 |
Individual interview | NS |
| DeLambo et al. (2004) | QN | US | Examine associations between observations of the quality of family relationships and problem-solving skills and reported adherence to medical treatments for older children and adolescents with cystic fibrosis (CF) |
96 children and parents (actual number of parents NS) |
9–17 | Treatment Adherence Rating Scale (TARS), Issues Checklist (IC), CF Issues Checklist (CF-IC), observed family discussion, Iowa Family Interaction Rating Scales (IFIRS), |
Airway clearance, nutrition, enzymes, antibiotics |
| Duff et al. (2003) | QN | UK | Establish the prevalence and nature of disruptive mealtime behaviors and inappropriate parental responses in children with CF |
108 parents | 1–17 | Behavioural Paediatric Feeding Assessment Scale (BPFAS-UK) |
Nutrition |
| Dupuis et al. (2011) | QL | Canada | Explore experience of parents and adolescents living with cystic fibrosis prior to the transfer of the adolescent’s care from a pediatric to an adult health care facility. |
7 adolescents; 7 mothers; 4 fathers; 8 health-care workers |
15–18 | Individual interviews, group interview with health-care team |
NS |
| Foster et al. (2001) | QL | UK | Investigate impact of CF and treatment on patients and family members |
8 patients; 8 siblings; 8 mothers; 1 father |
10–18 | Individual interviews | NS |
| Gayer & Ganong (2006) | QN | US | Examine differences in the experiences of mothers of children with cystic fibrosis who are in diverse family structures |
318 mothers | NS: × = 9.5 | Family Time and Routines Inventory (FTRI), Family Sense of Coherence Scale, Quality of Coparental Communication Instrument, |
NS |
| Graetz et al. (2000) | QN | Australia | Identify and compare perceived supportive and nonsupportive behaviors exhibited by family members and friends toward adolescents with CF, and examine the relationships between supportive and nonsupportive behaviors and adolescents’ psychological adjustment |
35 adolescent | 11–18; × = 14.5 | Chronic Disease Support Interview (CDSI), Youth Self Report Form (YSR), |
NS |
| Grasso et al. (2000) | RCT | Australia | Evaluate the effect of recorded music as an adjunct to CPT |
20 parents | 4.5–24 | Enjoyment: 7-point Likert- type scale, perception of time question |
Airway clearance |
| Hayes & Savage (2008) | QL | UK | Examine fathers’ perspectives on the emotional impact of managing the care of their children with CF |
8 fathers | 1.5–6 | Individual interviews | NS |
| Hobbs et al., (2003) | QN | US | Examine mothers’ attributions related to their children’s compliance with various components of medical treatment for CF |
27 mothers | 2–18 | Medical and Nonmedical Compliance Questionnaire (MNCQ), CF Parent Attribution Questionnaire (CF-PAQ) |
Airway clearance, nebulized medications , enzymes, nutrition |
| Hodgkinson & Lester (2002) | QL | UK | Explore current stresses and coping strategies used by mothers, identify roles and strategies that nursing professionals could extend or adopt to support them and families of children with CF |
17 mothers | 2–13 | Semistructured individual interviews |
NS |
| Modi et al. (2008) | QN | US | Evaluate relationship between patient- reported parental supervision and adherence |
103 adolescents and preadolescent |
10–17; × = 13.4 |
Daily phone diary, electronic monitors, prescribed treatment plan, pulmonary function tests |
Nebulized medications |
| Slatter et al. (2004) | QL | UK | Examine parents’ medication-related roles and problems |
15 mothers; 2 fathers |
2–12 | Semistructured individual interviews |
Medication |
| White et al. (2009) | QN | US | Investigate the association between psychopathology and treatment adherence in children and adolescents with CF |
53 child and primary caregivers |
9–17 | Shwachman Clinical Evaluation, Confidential Cystic Fibrosis Management Profile (CCFMP), Computer- Aided Diagnostic Interview Schedule for Children (C- DISC), Family Adaptability and Cohesion Evaluation Scales, Version II (FACES II), |
Airway clearance, nutrition, enzymes, antibiotics, nebulized medication |
| Williams et al. (2007a) | QL | UK | (1) What are the roles of family members in the initiation and implementation of home exercises? (2) How is the responsibility for physiotherapy exercises transferred from the parent or family to the child, and what factors help this process? |
32 children; 31 parents |
7–17 | Individual interviews | Airway clearance |
| Williams et al. (2007b) | QL | UK | Explore the experiences and strategies used by children and parents to adhere to routine home physiotherapy and to generate potential lessons for pediatric adherence in other clinical areas |
32 children; 31 parents |
7–17 | Individual interviews | Airway clearance |
Note. QL= Report of qualitative research; QN= report of quantitative research; RCT= report of randomized controlled trial; NS = not specified.