Fathers' Experiences of Caring for a Child with a Chronic Illness: A Systematic Review.

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.

Pain Experience, Physical Function, Pain Coping, and Catastrophizing in Children With Sickle Cell Disease Who Had Normal and Abnormal Sensory Patterns.

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.