Family-centred care in early intervention: Examining caregiver perceptions of family-centred care and early intervention service use intensity.

BACKGROUND: Family-centred care (FCC) is an approach to paediatric rehabilitation service delivery endorsing shared decision making and effective communication with families. There is great need to understand how early intervention (EI) programmes implement these processes, how EI caregivers perceive them, and how they relate to EI service use. Therefore, the purpose of this study is to examine (a) parent and provider perceptions about EI FCC processes and (b) the association between FCC perceptions and EI service intensity. METHODS: In this cross-sectional study, parent perceptions of EI FCC were measured using the electronically administered Measures of Processes of Care (MPOC-56 and MPOC-SP; using 7-point scales). Participants included EI parents (n = 29) and providers (n = 9) from one urban EI programme (1/1/18-6/1/18). We linked survey responses with child characteristics and service use ascertained through EI records. We estimated parent-provider MPOC score correlations and the association between EI service intensity (hr/month) and parent MPOC scores using adjusted linear regression accounting for child characteristics. RESULTS: Parents (M = 4.2, SD = 1.1) and providers (M = 5.8, SD = 1.3) reported low involvement related to general information exchange. Parent and provider subscale scores were not correlated except that parent-reported receipt of specific information was inversely associated with provider-reported provision of general information (r = -0.4, P < .05). In adjusted models, parent perceptions related to respectful and supportive (b = 1.57, SE = 0.56) and enabling (b = 1.42, SE = 0.67) care were positively associated with EI intensity, whereas specific information exchange and general information exchange were not associated with intensity. CONCLUSION: We found that EI parents and providers reported high levels of investment in the family centredness of their EI care, with the exception of information sharing. Greater EI service intensity was associated with higher perception of involvement with some metrics of family centredness.

Caregiver perceptions of child development in rural Madagascar: a cross-sectional study.

BACKGROUND: Human capital (the knowledge, skills, and health that accumulate over life) can be optimized by investments in early childhood to promote cognitive and language development. Parents and caregivers play a crucial role in the promotion and support of cognitive development in their children. Thus, understanding caregiver perceptions of a child's capabilities and attributes, including intelligence, may enhance investments early in life. To explore this question, we asked caregivers to rank their child's intelligence in comparison with other children in the community, and compared this ranking with children's scores on an assessment of developmental abilities across multiple domains. METHODS: Our study examined cross-sectional data of 3361 children aged 16-42 months in rural Madagascar. Child intelligence, as perceived by their caregiver, was captured using a ladder ranking scale based on the MacArthur Scale for Subjective Social Status. Children's developmental abilities were assessed using scores from the Ages and Stages Questionnaire: Inventory (ASQ-I), which measures cognitive, language, and socio-emotional development. Ranked percentiles of the ASQ-I were generated within communities and across the whole sample. We created categories of under-estimation, matched, and over-estimation by taking the differences in rankings between caregiver-perceived child intelligence and ASQ-I. Child nutritional status, caregiver belief of their influence on child intelligence, and sociodemographic factors were examined as potential correlates of discordance between the measures using multinomial logistic regressions. RESULTS: We found caregiver perceptions of intelligence in Madagascar did not align consistently with the ASQ-I, with approximately 8% of caregivers under-estimating and almost 50% over-estimating their children's developmental abilities. Child nutritional status, caregiver belief of their influence on child intelligence, caregiver education, and wealth were associated with under- or over-estimation of children's developmental abilities. CONCLUSIONS: Our findings suggest parents may not always have an accurate perception of their child's intelligence or abilities compared with other children. The results are consistent with the limited literature on parental perceptions of child nutrition, which documents a discordance between caregiver perceptions and objective measures. Further research is needed to understand the common cues caregivers that use to identify child development milestones and how these may differ from researcher-observed measures in low-income settings. TRIAL REGISTRATION: Current Controlled Trials ISRCTN14393738 . Registered June 23, 2015.

Use and perceived effectiveness of complementary health approaches in children.

BACKGROUND AND OBJECTIVES: Up to one-half of children may use complementary health approaches (CHA). However, current prevalence in North America, variables associated with CHA use and caregiver perceptions of effectiveness are unclear. We aimed to determine the self-reported use of CHA during the previous 12 months in paediatric patients, demographic variables associated with CHA use and perceptions around effectiveness of CHA. METHODS: A cross-sectional survey study of patients aged between 28 days and 18 years who presented to a large paediatric emergency department was conducted between December 2014 and July 2015. Univariate analysis and multivariate logistic regression were used to examine variables associated with CHA use. RESULTS: Of 475 potential participants, 412 (86.7%) responded to the questionnaire, of whom 369 (89.5%) had completed the entire survey. Of these, 61.7% (95% confidence interval [CI] 56.7% to 66.6%) reported using CHA for their child. The most used CHA products were vitamins and minerals (59.2%, 95% CI 52.4% to 65.7%). Among CHA practices, massage (50.0%, 95% CI 15.5% to 30.1%) was most common. Most CHA users perceived effectiveness of the therapy used. Parental education remained statistically significant (P=0.03) in multivariate logistic regression; the odds of CHA use among caregivers with university-level education were 1.65 times higher when compared with those without (95% CI 1.04% to 2.61%). CONCLUSIONS: CHA use is higher than previously reported in children. Given the high self-reported perceived effectiveness, paediatricians and family physicians should review CHA use with their patients in an open, non-judgmental manner, exploring both perceptions of safety and efficacy.

Pediatric Pneumococcal Conjugate Vaccine and Dosing Schedule Perceptions Among Health Care Providers and Caregivers in Germany, France, Spain, and Greece.

INTRODUCTION: Most European infant national immunization programs (NIPs) recommend pneumococcal conjugate vaccines (PCVs), which currently cover 10-15 serotypes administered in a three-dose schedule (two primary plus one booster). Recently, a PCV covering 20 serotypes that is administered in a four-dose schedule (three primary plus one booster) was licensed. METHODS: An online survey was administered to collect data from health care providers (HCPs) and caregivers of children aged 0-5 (including expectant mothers) in four European countries (Germany, France, Spain, and Greece). All caregiver respondents had a shared or full responsibility to make health decisions for their child. Data on opinions, perceptions, and openness to a change in childhood vaccination dosing schedules were collected, along with demographic information for HCPs as well as caregivers. RESULTS: A total of 601 HCPs and 1954 caregivers were recruited across the four countries. Nearly all HCPs (93%) agreed that broader serotype coverage against pneumococcal disease for children is a significant unmet need, and 92% had a "sense of urgency" to vaccinate children. Both HCPs and caregivers were supportive of an additional PCV dose and doctor visit, assuming it provided at least 20% more serotype coverage than what is currently available. Caregivers strongly agreed on the importance of full vaccination for pneumococcal disease, even if an extra dose and visit to the doctor was required. CONCLUSIONS: HCPs and caregivers were virtually unanimous in their support for a PCV with broader serotype coverage and showed a subsequent willingness to include an extra infant dose/visit. These results can help guide broader discussions regarding public health policy and vaccine administration in the context of important efforts to reduce the global disease burden associated with pneumococcal disease.

IsiZulu-speaking caregivers' perceptions of child language stimulation.

BACKGROUND:  South African children from low-income households are at higher risk of cognitive-linguistic difficulties because of multiple risk factors. Early language stimulation minimises the effects of risk factors and prepares children for literacy and learning. Understanding caregivers' perceptions of language stimulation is important because perceptions shape practices, which determine child language outcomes. OBJECTIVES:  This study explored the existing perceptions of language stimulation among 15 isiZulu-speaking caregivers from KwaDabeka township. METHOD:  A qualitative, descriptive research design was adopted and the caregivers were interviewed using a semi-structured interview schedule. The NVivo software programme supported the inductive, thematic analysis of the data. RESULTS:  Although the caregivers held positive perceptions of language stimulation, their perceptions of benefit focussed on meeting children's basic physiological needs with less reference to the long-term benefits for literacy, employment and social integration. Providing language models, watching television, singing songs, and reading books were perceived to be examples of language-stimulating activities and techniques. The caregivers expressed a need to improve their knowledge of language stimulation and queried how they could be supported to achieve this outcome. CONCLUSION:  This group of caregivers needed support to increase their awareness of the long-term benefits of language stimulation and their knowledge and use of evidence-based activities, stimuli and facilitation techniques.Contribution: Caregivers' existing perceptions could serve as a barrier to the effective language stimulation of children from low-income households in South Africa.

A shared reading intervention: Changing perceptions of caregivers in a semi-rural township.

BACKGROUND:  Many caregivers from low-middle income (LMI) households consider that preschool children are too young for shared book reading. Thus, many caregivers are unaware of their potentially powerful role in their children's emergent literacy and communication. OBJECTIVES:  To describe (1) caregivers' perceptions of shared reading, (2) caregivers' perceptions of barriers to shared reading and (3) changes in these perceptions following a short intervention. METHOD:  A qualitative methodology was used to understand the perceptions of 40 caregivers from a semi-rural South African township. Two semi-structured interviews were conducted before and after intervention. The intervention was a short training video about shared reading. RESULTS:  Caregivers described the unfamiliar reading culture and viewed reading as an educational activity that they knew little about. Barriers to shared reading included lack of time, few reading materials and low levels of literacy or lack of exposure to this type of activity. Following the intervention, they acknowledged the importance of shared reading, described growing confidence in their shared reading abilities and closer relationships with their children. CONCLUSION:  Speech-language therapists (SLTs) have a pivotal role to play in caregiver training of emergent literacy skills and can make a marked impact in guiding caregivers' shared reading. A short video-based intervention can alter caregiver perceptions and practices, which may be the first step in changing behaviours.Contribution: The study provides an example of a simple and cost-effective intervention that changed caregiver perception and caregivers' reported shared reading practice.

Quality of Life and Child's Autism-Specific Difficulties among Malaysian Main Caregivers: A Cross-Sectional Study.

Caring for children with autism spectrum disorder (ASD) negatively impacts quality of life (QoL). This cross-sectional study aimed to determine the factors associated with perceived QoL and how problematic a child's autism-specific difficulties are among the main caregivers of children with ASD who attend specialized preschool programs at the National Autism Society of Malaysia and IDEAS Autism Centre located in Selangor and Kuala Lumpur. Utilizing the questions from Parts A and B of the Quality of Life in Autism Questionnaire (QoLA), the data from 116 responders were analyzed using univariate and multivariate linear regression. The mean scores of Part A and Part B were 88.55 ± 17.25 and 56.55 ± 12.35, respectively. The QoL was significantly associated with staying in an apartment/flat -11.37 (95%CI: -19.52, -1.17, p = 0.008), main caregivers attending two training sessions 10.35 (95%CI: 1.17, 19.52, p = 0.028), and more than three training sessions 13.36 (95%CI: 2.01, 24.70, p = 0.022). Main caregiver perceptions of their child's autistic-specific difficulties were significantly associated with not receiving additional help for childcare: no maid -13.54 (95%CI: -24.17, -12.91, p = 0.013); no grandparent -8.65 (95%: -14.33, -2.96, p = 0.003); and main caregivers not having asthma 8.44 (95%CI: 0.02, 16.86, p = 0.049). These identified factors can be considered to inform main caregivers and health care providers on targeted ways to improve the QoL of main caregivers.

Caregiver and Pediatric Health Care Provider Views on Social Needs Identification.

Background: The American Academy of Pediatrics recommends that pediatricians address the social determinants of health (SDOH) through research, community partnership, and policy development. Objective: This study aimed to identify the unmet SDOH of the patients served by the Pasadena-Pediatric and Adolescent Health Center (PA-PAHC) and to understand provider perspectives on screening for SDOH. Methods: The PA-PAHC is a low-income pediatric clinic in southeast Houston. A cross-sectional survey eliciting potential SDOH concerns was administered to caregivers of children presenting for their well-child exam, along with pediatric residents and staff/faculty. Staff/faculty and residents were asked about their perceptions of SDOH screening. Statistical analysis calculated frequencies for categorical data and mean/median for continuous variables. Secondary data analysis consisted of chi-square test and logistic regression. Results: A total of 110 caregivers, 22 residents, and 21 staff/faculty participated in the study. Caregivers listed health care access the most frequently (15.5%), followed by childcare, school, and immigration status as SDOH concerns. Residents (31.8%) and staff/faculty (23.8%) also identified health care access as a concern. When comparing topic selection by survey role, there was no statistically significant difference among the 3 groups (P = .257). Residents were more likely to indicate that screening was more time-consuming than were faculty/staff (P = .004). Conclusion: Staff/faculty and residents agree that SDOH affect child health and screening is valuable in the patient encounter. There were no differences in the needs identified by the 3 groups. Further evaluation to assess caregiver perspectives on standardized SDOH screening versus obtaining routine social history needs to be undertaken.

Parental Perception of Oral Health-related Quality of Life of Syrian Refugee Children.

AIMS AND OBJECTIVES: The conflict in Syria has resulted in the displacement of over 5 million people, many of whom intend to return home at the cessation of hostilities. Oral health plays a critical role in early childhood and this study aimed to qualitatively and quantitatively assess the oral health-related quality of life (OHRQoL) of these children. MATERIALS AND METHODS: The quantitative assessment of OHRQoL was done using a validated Arabic version of the short-form Parental-Caregiver Perceptions Questionnaire-8 (P-CPQ-8). The P-CPQ-8 was administered to 22 sets of parents of children in a community center catering to urban refugees. A focus group interview and thematic analysis of nine mothers were used to gain a qualitative insight into the problems that could affect the OHRQoL of their children. RESULTS: The P-CPQ-8 revealed that oral symptoms were the greatest concern of the parents with dental pain being the most commonly reported condition. Although mothers reported higher P-CPQ-8 scores among all domains than fathers, there were no significant differences in the concerns of the fathers and the mothers. The focus group interview raised three major themes - (1) access to dental care, (2) pain felt by the child, and (3) oral hygiene of the child. CONCLUSION: The parents interviewed in this study were aware of the importance of oral hygiene but reported being unable to look after their children's teeth. Children who are refugees from the Syrian conflict face significant OHRQoL challenges.

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure.

OBJECTIVES: To assess perceptions of illness severity and terminality in caregivers of advanced heart failure (HF) patients and how these perceptions influence utilization of palliative care and end-of life services. BACKGROUND: HF is a terminal disease; yet patients and caregivers do not understand the severity of HF or acknowledge disease terminality. METHODS: This study was conducted using a qualitative design with in-depth interviews and content analysis. RESULTS: Most caregivers did not understand the severity of HF (68%) or disease terminality (67%). Patients were more likely to receive services when their caregivers expressed an understanding of illness severity and/or terminality. CONCLUSIONS: Inclusion of caregivers in discussions of goals of care, advance care planning, and palliative care and end-of-life services with patients and providers is imperative.