RESUMEN
The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers' experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers' experience, perceptions, and/or involvement in the child's care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father's Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers' experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition.
RESUMEN
CONTEXT: Sickle cell disease (SCD) is associated with recurrent pain that could lead to abnormal sensory patterns (ASPs). OBJECTIVES: The purpose of this study is to compare children with SCD who had normal sensory patterns (NSPs) and ASPs in pain experience, physical function, pain coping, and pain catastrophizing. METHODS: Children with quantitative sensory testing data were selected from a larger study that examined pain and symptoms in children with SCD. Comparisons were made between children with NSP (n = 35; 13.9 ± 1.9 years) and ASP (n = 13; 12.8 ± 1.9 years). Children completed the Adolescent Pediatric Pain Tool, Functional Disability Inventory, Pain Coping Questionnaire, and Pain Catastrophizing Scale. RESULTS: No significant differences were found in pain intensity (2.9 ± 3.0 vs. 2.6 ± 2.8 on 0-10 Visual Analogue Scale) between the NSP and ASP, respectively. The most common marked pain sites for both groups were lower extremities (22.9%), head and neck (20.8%), and upper extremities (20.8%). Functional Disability Inventory scores were significantly worse in ASP (38.5%) compared with NSP (11.4%). The ASP group had significantly worse scores in emotion-focused pain coping subscales. CONCLUSION: Children with SCD with ASP had worse functional disability, were expressing more affective pain quality, and had emotion-focused pain coping compared with NSP. Future studies are needed to examine the effectiveness of physical activities on the physical function as well as psychosocial interventions such as peer support and creative arts expression to minimize development of ASP in children with SCD.
Asunto(s)
Anemia de Células Falciformes , Catastrofización , Adaptación Psicológica , Adolescente , Anemia de Células Falciformes/complicaciones , Niño , Humanos , Dolor , Dimensión del DolorRESUMEN
PURPOSE/OBJECTIVES: To (a) investigate fatigue and sleep patterns of children and adolescents at home and (b) examine factors associated with fatigue and sleep.. DESIGN: Descriptive with repeated measuresâ©. SETTING: Homes of study participants in Los Angeles and Orange, Californiaâ©. SAMPLE: 35 children and adolescents with cancer. METHODS: Data were collected using the PedsQL Multidimensional Fatigue Scale, which was completed once at home by each participant, and sleep actigraphs, which were worn for five days at home following discharge from hospitalizationâ©. MAIN RESEARCH VARIABLES: General fatigue, cognitive fatigue, sleep-rest fatigue, sleep duration, sleep quantity, sleep efficiency, and wake after sleep onsetâ©. FINDINGS: More than half of the participants had problems with fatigue at home. Significant correlations were found between sleep/rest fatigue and sleep duration. Factors that affected fatigue were age, gender, and cancer diagnosis. Adolescents had more problems with fatigue than children, and female patients had more problems with fatigue than male patients. Patients with sarcoma had more problems with fatigue than those with leukemia, lymphoma, and other cancer diagnoses. Adolescents slept less than children. CONCLUSIONS: Children and adolescents with cancer have fatigue and sleep problems at home that vary by age, gender, and cancer diagnosisâ©. IMPLICATIONS FOR NURSING: Data from the current study support the need for nurses to provide teaching about fatigue and sleep at home in children and adolescents with cancer. Future studies are needed to examine interventions that may alleviate fatigue and improve sleep at homeâ©.
