Comparison Of Family Needs Of Parents Of Chronically Ill Children Who Participate In A Parental Support Group Versus Those Who Do Not

The purpose of this retrospective study was to determine the dimensions of family needs of parents of chronically ill children in rural northeastern Mississippi who participate in a parental support group, and the dimensions of family needs of parents who do not participate

Experiences of Parents With Chronically Ill Children Regarding the Affordable Care Act

Ways in which the implementation of the Patient Protection and Affordable Care Act (ACA) affect parents with chronically ill children are not well understood. The purpose of this phenomenographic study was to gain greater insight into the perceived experiences of parents of chronically ill children regarding implementation of the ACA in a southern state. Argyris\u27s intervention theory provided the framework for the study. Face-to-face interviews were conducted with a purposeful sample of 12 female parents who are caregivers of chronically ill children. Data were analyzed and coded to identify categories and themes. Findings indicated that parents view physicians and policymakers as key actors in their communities to create more equitable services for parents of chronically ill children through the expansion of Medicaid services in southern state. Many participants did not perceive that the ACA had made significant changes to services received prior to its implementation. Findings may assist health care providers, insurance companies, legislators, and other policymakers to develop appropriate health care policies and interventions to lessen the financial burden experienced by parents of chronically ill children. Providing more support services that address the physical, emotional, and financial needs of parents may improve the health outcomes of their chronically ill children

148 - The Perception of Communication: The Ways Clinicians and Parents of Chronically Ill Children Communicate

Children with chronic illnesses are often exposed to many medical facilities and providers who must speak to them about their illness. Due to the sensitivity of the topic and the emotional strain, the communication can be weaker or strained from the physicians. The aim of this research was to determine how parents are the main information source and how these parents and other clinicians perceive the communication of the information provider as weak. The participants included three parents and two clinicians who underwent an interview and filled out a questionnaire about communication independently in connection with a child’s illness (their own or those they have interacted with). Findings revealed that parents were the main source of information for children about their illness, not the physician, due to the age of their child, the scary atmosphere of doctor’s offices, and trust in the parents. Additionally, all participants reported negative experiences with doctor communication, such as confusing medical jargon, not listening to concerns, lack of decorum and not trusting the patients, which suggests that doctors need more communication training. Finally, the interviews revealed high personal evaluation of the participant’s communication skills but agreement with poor communication tactics in the questionnaire. Further research includes interviewing more people, including physicians and other members of the medical community to get a holistic view of the opinions of the public

A predictive model of Health Related Quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system

BACKGROUND: Parents of chronically ill children are at risk for a lower Health Related Quality of Life (HRQoL). Insight in the dynamics of factors influencing parental HRQoL is necessary for development of interventions. Aim of the present study was to explore the influence of demographic and disease related factors on parental HRQoL, mediated by employment, income, leisure time, holiday and emotional support in a comprehensive model. METHODS: In a cross-sectional design, 543 parents of chronically ill children completed questionnaires. A conceptual model of parental HRQoL was developed. Structural equation modeling was performed to explore the relations in the conceptual model, and to test if the model fitted the data. RESULTS: The model fitted the data closely (CHISQ(14) = 11.37, p = 0.66; RMSEA = 0.0, 90%CI [0.00;0.034]. The effect of socio-demographic and medical data on HRQoL was mediated by days on holiday (MCS: beta = .21) and emotional support (PCS: beta = .14; MCS: beta = .28). Also, female gender (beta = -.10), age (beta = .10), being chronically ill as a parent (beta = -.34), and care dependency of the child (beta = -.14; beta = -.15) were directly related to parental HRQoL. CONCLUSION: The final model was slightly different from the conceptual model. Main factors explaining parental HRQoL seemed to be emotional support, care dependency, days on holiday and being chronically ill as a parent. Holiday and emotional support mediated the effect of demographic and disease-related factors on HRQoL. Hours of employment, leisure time and household income did not mediate between background characteristics and HRQoL, contrasting the hypothese

Psychosocial impact of targeted exome sequencing on parents of chronically ill children

Whole exome sequencing (WES) is a relatively new testing option, currently offered primarily in the pediatric setting, that is open to more uncertainty than single gene or gene panel testing. This uncertainty makes pre-test counseling challenging yet critical to ensure informed consent. Adaptation of counseling strategies for this type of testing requires a better understanding of parents' experiences throughout the WES testing process. However, the experience of parents of chronically ill children who have actually gone through the entire WES testing process has not been widely reported in the literature. Currently, analysis of exome test results at Children’s Hospital of Pittsburgh does not include the incidental findings that are typically reported in WES results (i.e. variants in genes that are not associated with the child’s present condition) and is, therefore, referred to as “targeted exome sequencing” (TES). This study was designed to gain an understanding of the psychosocial impact on parents of the TES testing process for chronically ill children in order to improve test education, consent and results disclosure processes and to better help parents cope with the results. Semi-structured interviews were conducted with 11 parents of children who received targeted exome sequencing results and thematic analysis was performed on transcripts generated from the interviews. The experiences and opinions of parents whose children received positive, likely negative or uncertain results were analyzed, in order to develop a robust understanding of the full TES process. This study has Public Health significance because the results may contribute to the development of updated recommendations for optimizing informed consent and results disclosure for TES

Using Online Photo Sharing to Support Parents with Type One Diabetic Children

The rise of online photo sharing platforms has encouraged an increasing number of people to share online their lived experience as a carer of a child with a chronic condition. This study aims to explore the effectiveness of using photo sharing platforms to support parents of chronically ill children. We use individual interviews and analysis of Instagram posts to study parents of Type 1 diabetic children who engage in photo sharing. Findings show online photo sharing supports parents in coping with their child’s condition and in sharing their experience with and supporting other parents. Photos have a significant capacity to deliver personal experience and therefore in enhancing relationships between participants. Participants express greater ability of photos over text in validating their experience. More specifically, personal photos create more trust in the provided information. This supports the idea that photo sharing can provide opportunities for emotions-focused coping skills better than text

Paid Family and Medical Leave: Research and Lessons for the District of Columbia

This literature review highlights the main findings in current research looking at paid family and medical leave policies, and then examines how these experiences can inform the development of a paid leave policy in the District of Colombia. The need for paid family and medical leave is high, and paid leave would benefit nearly all employees at some point in their working lives. One in every five adults has taken family leave in the past three years. Support for these programs is generally very favorable among both employees and employers as well. The most common problem with current paid leave programs is a lack of awareness or ability to use the benefit. Any paid family and medical leave policy implementation must be accompanied with some sort of education campaign whether it is directed at workers or done through employer buy-in. There are many lessons to learn from existing paid family and medical leave programs, but ultimately the current programs are still very successful

Off-label, off-limits? Parental awareness and attitudes towards off-label use in paediatrics

Off-label drug use in paediatrics is associated with an increased risk of adverse drug reactions. Any risk–benefit analysis has to be based on value judgments that should include parents' views. However, nothing is known so far about the parents' perspective on this critical issue. Therefore, a quantitative survey with parents of healthy and chronically ill children was carried out (n = 94). Knowledge about the practise of off-label use is generally poor in both groups. Surprisingly, this is also true for the parents of children with chronic disease. Nine percent of the parents of chronically ill children and 20% of the parents of healthy children would refuse treatment with an off-label drug. Parents who have poor knowledge about the practise of off-label use tend to refuse to volunteer their child for study participation. Therefore, the information of parents on the off-label use of drugs is important to meet ethical standards and to increase the parents' acceptance of medical studies with children

Brazilian study of adaptation and psychometric properties of the Coping Health Inventory for Parents

The Coping Health Inventory for Parents (CHIP) evaluates coping patterns of parents of chronically ill children and assesses different coping strategies using three subscales. This study aimed to translate and transculturally adapt the CHIP for a Brazilian sample and investigate the preliminary psychometrics of the scale. Rating scale Rasch analysis was performed on CHIP responses, and the psychometric performance of each of the three subscales was tested. Two hundred twenty parents of individuals with health problems participated in the study, answering a sociodemographic questionnaire—the Brazilian version of the CHIP—and Folkman and Lazarus’s coping questionnaire. All items exhibited good fit to the measurement model, although response categories were not used as intended and little variability on person parameter estimates was obtained. These preliminary results suggested that each construct being measured by the three subscales should be treated separately, corroborating the theoretical model of the original instrument. Suggestions to address the psychometric limitations of the instrument were made in order to improve measurement precision

Les attitudes des parents à l’égard de l’informatique et leur appréciation de l’utilisation du logiciel Vie familiale et impact de la maladie

Le logiciel Vie familiale et impact de la maladie intègre quatre tests adaptés pour l'intervention en service social et donne une rétroaction immédiate à l'utilisateur sur dix résultats présélectionnés. Cet article décrit1) les attitudes des parents d'enfants atteints d'une maladie chronique à l'égard de l'utilisation de l'ordinateur comme support à l'intervention clinique et 2) leurs réactions à la suite de l'utilisation interactive du logiciel. Même lorsqu'ils ont peu ou pas d'expérience avec les ordinateurs, les parents font une évaluation positive du programme Vie familiale, quels que soient leur âge, leur sexe ou leur degré d'instruction.The software Family Life and Impact of an lllness integrates four psychosocial tests adapted to social work intervention and provides immediate feedback to the user often selected scores. This article describes 1) the attitudes of the parents of chronically ill children to computer technology used as a support to clinical practice and 2) their reactions to the interactive software. Even when they have little or no experience with computers/ the parents make a positive evaluation ofthe Family Life program, regardless of their age, sex or education