Caregiver responses to early cleft palate care: A mixed method approach.

Abstract

Objective This study sought to understand caregivers’ (CGs’) responses to early cleft lip/palate care for their infants. Method A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N=118) seeking treatment for their infants’ cleft lip and palate or cleft lip only at one of six cleft treatment centers in the United States. Participants were in one of two treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semi-structured interviews and standardized questionnaires assessing psychosocial well-being and family impact at three time points: the beginning of treatment (~1 month of age), pre-lip surgery (~3–5 months of age), and post-palate surgery (~12–13 months of age). Multi-level modeling was used to longitudinally assess CGs’ psychosocial outcomes. Results While the first year was demanding for all CGs, NAM onset and the child’s lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs’ ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. Conclusion CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the Family Adjustment and Adaptation Response Model as used in pediatric chronic condition research.

Oral health-related quality of life in youth receiving cleft-related surgery: self-report and proxy ratings

“…An alternative explanation could be that surgery may have a point of diminishing returns. While the timing of surgery and number of procedures may be important to individuals’ OHRQoL, these results suggest that adjunct psychological counseling could provide support to patients and their families undergoing the stress and expectations associated with surgery [36, 37]. …”

Incidence of mild cognitive impairment in World Trade Center responders: Long‐term consequences of re‐experiencing the events on 9/11/2001

“…Responders reported the extent to which 17 DSM‐IV PTSD symptoms had bothered them in the past month, with responses ranging from not at all (1) to extremely (5). Neurodegenerative conditions often cause neuropsychiatric symptoms in the form of anxiety and elevated depressive symptoms [26]; however, recent work has shown that re‐experiencing symptoms are less sensitive to increases in symptomatology seen in cognitively impaired individuals, so the focus in this study was on the symptoms [27]. PTSD symptom severity denotes symptoms summed across the five re‐experiencing symptoms in a standard way and scaled to range from no symptoms (0) to maximal symptoms (1) to facilitate effect size comparison.…”

Parents’ Acceptance to Alveolar and Nasoalveolar Molding Appliances during Early Cleft Lip and Palate Care: A Call for High-Quality Research

“…After 1178 exclusions, five studies were read in full text. As a result of full text screening, four articles [21], [22], [23], [24] were excluded with reasons (Table 4) and one study [16] met the inclusion criteria and were included in the qualitative analysis.…”

“…Because of the handicapping nature of the infants, the success of PSIO depends mainly on the parents' positive interaction and commitment. Several studies [16], [21], [22], [23], [24], [25], [26], [27] evaluated the parents' satisfaction while dealing with the PSIO. They measured the amount of load on the parents, while carrying out the procedures of taking care of their child in this period.…”

“…The four excluded studies [21], [22], [23], [24] evaluated the caregiver responses to the NAM appliance treatment phase. Unfortunately, these studies mixed the unilateral and bilateral cleft infants, in addition to the lack of the control group in two studies [21], [24] and that is why they were excluded from the current systematic review.…”