Putting children forward for epilepsy surgery:a qualitative study of UK parents' and health professionals' decision-making experiences

Background Against a backdrop of recommendations for increasing access to and uptake of early surgical intervention for children with medically intractable epilepsy, it is important to understand how parents and professionals decide to put children forward for epilepsy surgery and what their decisional support needs are. Aim The aim of this study was to explore how parents and health professionals make decisions regarding putting children forward for pediatric epilepsy surgery. Methods Individual interviews were conducted with nine parents of children who had undergone pediatric epilepsy surgery at a specialist children's hospital and ten healthcare professionals who made up the children's epilepsy surgery service multidisciplinary healthcare team (MDT). Three MDT meetings were also observed. Data were analyzed thematically. Findings Four themes were generated from analysis of interviews with parents: presentation of surgery as a treatment option, decision-making, looking back, and interventions. Three themes were generated from analysis of interviews/observations with health professionals: triangulating information, team working, and patient and family perspectives. Discussion Parents wanted more information and support in deciding to put their child forward for epilepsy surgery. They attempted to balance the potential benefits of surgery against any risks of harm. For health professionals, a multidisciplinary approach was seen as crucial to the decision-making process. Advocating for the family was perceived to be the responsibility of nonmedical professionals. Conclusion Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences.

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

Variables motivating parents to choose a specific type of private school

The purpose of this study was to investigate the reasons associated with parents' choices of specific types of private schools. The researcher hoped to determine if there were any significant differences in the reasons parents reported for enrolling their child in a specific private school. Studies in the past have explored why parents choose private schools. This study focused on why parents chose a specific type of private school, what were the variables involved, and were there any significant differences in the motivation of parents with children enrolled in different types of private schools.^ The study gathered data using a survey instrument which centered on 14 variables generally associated with the choice of private schools. The survey asked parents to rate the variables using a Likert type scale. The Likert rating was used because it does not require respondents to choose between variables. The general areas of emphasis were (a) academics, (b) religion and values/morals, (c) nurturing educational environment, and (d) proximity and convenience of the school. The survey also gather qualitative data in the form of comments volunteered by over a third of the respondents.^ The survey was mailed to 560 randomly selected families from 30 private high schools in a 50 mile radius of Miami, Florida. The 10 high schools, represented five types of private schools, Roman Catholic, Episcopal, Independent, Jewish, and Fundamentalist Christian. After four mailings a total of 401 surveys were returned for a rate 72%.^ Significant differences appeared as the data was analyzed using ANOVA and Tukey's HSD pairwise analysis. The variables showing significant differences between types of schools were (a) quality of instruction, (b) commitment of teachers, (c) emphasis on religion, (d) small class size, (e) well-defined academic goals, (f) proximity of the school's location, (g) preparation for desired secondary schools/colleges, and (h) convenience of school's operating schedule.^ Parents appeared to have specific reasons for choosing a particular private school. They appeared to look for a school that would satisfy the special needs of their child and would be compatible with their own values, morals, and personal philosophy. ^

A study of the relationship between parental self-efficacy and indicators of school involvement exhibited by Hispanic parents of elementary school children

The purpose of this study was to examine the relationship between Hispanic parents' sense of self-efficacy at various degrees of acculturation to the United States and specific indicators of school involvement in their elementary school children's education. It assessed the effects of acculturation on the level of parental self-efficacy and their degree of school involvement. The theoretical framework guiding this investigation was Bandura's theory of self-efficacy which advocates that the amount of effort a person devotes to the accomplishment of a specific outcome is related to a person's beliefs in their capabilities regardless of actual competencies.^ The research method involved a correlational design measuring levels of parental self-efficacy, acculturation, degree of school involvement and related demographic characteristics. Multiple regression analysis was performed to determine the degree of relationships existing between the predictor variables of self-efficacy and level of acculturation, and level of school involvement. The data was subjected to a path analysis to test the validity of the causal model advanced in this study specifying a positive relationship between the constructs of acculturation, parental self-efficacy and level of school involvement.^ A total of 109 Hispanic parents of students enrolled in five elementary public schools in Dade County, Florida, were selected for participation in the study. Results revealed a significant positive correlation r =.23, p $<$.05 between level of parental self-efficacy and number of hours parents spent helping their children with homework. A statistically significant positive correlation was found between acculturation and level of self-efficacy r =.21, p $<$.05. Statistically significant positive correlations were also found between acculturation and such indicators of parental school involvement as participation in parent-teacher conferences r =.20, p $<$.05, volunteering at school, r =.22, p $<$.05, attendance at school sponsored sports activities r =.26, p $<$.01, and volunteering in field-trips r =.28, p $<$.01.^ The multiple regression analysis equation predicting level of homework assistance provided by parents and self-efficacy was statistically significant, F(2,106) = 3.59, p $<$.03. The beta weights revealed that self-efficacy contributed the most to the prediction of homework assistance by parents, B =.258, p $<$.009. In turn, the variable of acculturation was the most significant predictor of number of school based parent involvement activities, B =.281, p $<$.05 level. The path analysis confirmed the results obtained in the multiple regression analyses, establishing self-efficacy as having a direct effect on the level of homework assistance provided by parents. Conversely, the variable of acculturation had a direct effect on the number of school based parent involvement activities. ^

A qualitative study of the impact of an educational intervention on older parents of adults with disabilities engaged in the phenomenon of future-care planning

This phenomenological study describes the impact of an educational intervention on the day-to-day experiences of older parent caregivers of adults with developmental disabilities who were engaged in the process of future-care planning. Qualitative strategies of individual and focus group interviewing were used with a purposive sample of older caregivers. Participants were members of an existing parent support group. Twenty-three caregivers representing 18 families were queried before and after the education program. The disabilities represented were mental retardation, cerebral palsy and autism. Parents whose children live at or away from home were included. The intervention was conducted on five Saturdays over a two month period; the duration of the study was five months. Findings used typical words of the respondents from their individual and focus group interviews to describe feelings, attitudes and experiences in making future-care plans. Data from verbatim transcriptions and researcher's field notes were coded, analyzed, sorted into themes, and subjected to interpretive analysis. Respondents showed a positive change in attitudes and actions after participating in the education program, regardless of their initial stage in care planning. Fears were replaced by hope and determination; hesitation and ineptitude by feelings of competence and confidence; and procrastination and delay by purposeful actions. Other key findings: use of a planning document greatly aided caregivers; barriers to planning were often intrinsic and amenable to education; residential plans were the most difficult aspect of planning; listening to the experiences of other parent caregivers was helpful; and making burial plans for their offspring was one aspect of planning parents wished to do themselves. ^

Safety habits promoted by Hispanic parents for school-aged and adolescent children

Accidents are the leading cause of death among children. Compliance with safety measures have been shown to reduce morbidity and mortality in children. However, Hispanic parents and children have not been adequately studied in the literature in regard to trauma and safety habits utilized. In this exploratory-descriptive study, a convenience sample of 48 Hispanic parents were questioned about their child's activities. The purpose was to determine what safety equipment was used during these activities and how often they were used. Responses to an English/Spanish questionnaire were summarized by frequencies and percentages. Findings suggested that these Hispanic children were at risk for injury due to a low percentage of children wearing the necessary protective equipment. Therefore, education must stress consistent use of safety equipment if injuries are to be prevented. ^

Academic achievement orientation of West Indian American parents and adolescents

Literature addressing academic achievement orientation of Black adolescents in the United States often depicts poor school related attitudes and adaptation patterns, low academic achievement, and deficient family backgrounds. However, some researchers maintained that certain Black immigrant groups possessed positive academic achievement orientations and exemplary academic achievements (Ogbu, 1991; Gibson, 1991; Vernez, & Abrahamse, 1996). In this study, I attempted to combine qualitative data from multiple sources (surveys, interviews, observations, literature, and document analysis), using standard case study methodology and the constant comparative method of analysis to understand the relationship that existed between the academic achievement orientation of a select group of West Indian American parents and adolescents in Broward County, Florida. The sub-sample of 11 families, comprising 15 adolescents and 13 parents, was selected through maximum variation sampling from a pool of 23 families. The findings were presented as a single composite case study. The participants possessed specific, longstanding educational and career goals for the children. The parents were deeply involved and were knowledgeable of their children's schools and academic progress. While mothers were the parents most actively involved in the schools, fathers were strong authoritative figures. Families evidenced a strong moral religious base with set rules of behavior, firm parenting practices, and established chains of authority. Family members emphasized education over material things; reading over audiovisual or social activities; family cohesion over individual wishes; and academics over extracurricular activities. The parents' strong positive academic achievement orientation was communicated to the children and reinforced by relatives, family friends, and others. In turn, the adolescents possessed positive school-related attitudes and attributional styles. While they admitted their parents were somewhat strict, they voluntarily complied with the rules and were highly motivated to succeed because they believed their parents deeply cared for them and that education leads to success and upward mobility. Each adolescent was pursuing an academic track and planning for college and specific profession. The findings support Ogbu's cultural ecological model (1991). I recommend these findings to teachers, counselors, administrators, parents, and others working with West Indian American families. ^

Selecting a college or university: A study of students and their parents

This case study investigated the decision-making process of high-achieving high school students and their parents in selecting a college or university. The conceptual framework that guided this study included theoretical and empirical research framed around a three-phase model of college choice. Parental influence dominated the first phase of this model. The search phase, which was the second and the most crucial one, included financial considerations related to this decision, admissions considerations during the search phase, the psychology of decision making, and advertising strategies for teenagers. Once students completed the search phase they developed expectations of the institutions they considered prior to making the final decision. The study employed qualitative methods using individual interviews with students and their parents. ^ Six high-achieving high school seniors from a South Florida high school and their parents were selected to participate in this study. Of these students, four were female and two were male. Participants were individually interviewed on two separate occasions over a three-month period. Students and their parents were interviewed separately, with one exception, during the first set of interviews and together during the second. The data obtained from these interviews were transcribed and these transcripts were coded, categorized, analyzed, and sorted into major themes and submitted to interpretive analysis. ^ In-depth descriptions of participants' experiences during the decision-making process are described in the study. Financial factors—which included the cost of college, the socio-economic status of the family, and scholarship possibilities—drove the selection process for these students and their parents, most of whom reported their family incomes between the lower-middle to upper-middle class range. All of these students took advantage of the Bright Futures Scholarship Program, other scholarship opportunities, and the lower tuition costs of in-state public institutions. The effectiveness of recruitment techniques, such as brochures, campus visits, the development of college Web sites, and the overall impact of Internet resources, was assessed by the researcher. ^ As these students had progressed through the search phase, they developed perceptions of potential institutions as they were assisted by those around them. The value of familiarity with institutions and the use of heuristics were quite evident in the final analysis of this study, based on what the students communicated about how their knowledge of and comfort in these institutions affected their decisions. Parental influence played an important role in the selection process for the students in this study as the parents clearly directed the process, by the constant advice they gave their children and by the financial limitations they communicated to them. ^

An analysis of Haitian parents' perceptions of their children with disabilities

Parental involvement is an integral part of the educational system in the U.S. Yet, parents from non-mainstream racial/ethnic backgrounds have not fully grasped the nature of parental involvement expectations in the educational process and how these expectations may impact student achievement. The purpose of this study was to identify Haitian parents’ perceptions of their children with disabilities and the education these children were receiving. Several authors have conducted studies on parents of children with disabilities to better gain an understanding of the level of their involvement with their children’s education, their perceptions of the children, and their views on the school system (Harry, 1992a, 1992b). In this study, Haitian parents of children with disabilities were interviewed using an interview protocol. Through these interviews, this study explored 10 Haitian parents’ perceptions of their child with a disability, the education the child was receiving, their interaction with the school system, and how the disability had affected their relationship with their child and their involvement with the school. Findings of the present study revealed that these Haitian parents seldom disagreed with school personnel and did not seem to fully grasp the different methods available to address their concerns as parents of children with disabilities nor the role they were expected to play in the process. The majority did not have basic literacy skills in Creole or English. The parents in this study were overwhelmed by school written communication. Additionally, this study discovered that parents’ perceptions were guided by two core concepts: coping mechanisms and locus of control. Parents with an internal locus of control, who tended to be more educated, focused inward to find solutions to problems encountered. Those with an external locus of control relied on outside influences to resolve their problems. Parental involvement was strongly influenced by their values, beliefs, customs, and conceptual knowledge about disability; all closely aligned with culture and acculturation. Overall, these parents’ perceptions greatly influenced their thoughts and behaviors when they realized that their children with disabilities might fall short of their immigrant dreams of success they held for these children.

Educating Parents on the Accelerated Reading Program

The Accelerated Reader Program was developed by Paul, VanderZee, Rue and Swanson at the Institute for Academic Excellence. The intention was to provide a computer-based reading program that would be recreational for students and that would provide information to teachers about the students. The majority of the research conducted to date targets the use of the program within the classroom. Results of the program only mention the participation of parents in the program as merely being informed of its existence. Parents are not necessarily included as active players in the daily routines. In fact, it is the lack of research found on the relationship between parent participation and student reading success and reading motivation that fueled the direction of this research. Thus, it created the perfect scenario to investigate the possible connection between parental involvement practices and the success of the Accelerated Reader Program.

Parents Acquiring Learning Strategies (PALS): How Empowering Hispanic Parents Increases Parental Involvement and Student Achievement

Some Hispanic parents in Miami-Dade County show limited involvement in the educational process of their children. Currently, Miami-Dade County Public schools consists of an increasingly high number of language minority students who come from homes where parents are limited in their English proficiency. Consequently, these parents have difficulty assisting their children with schoolwork and often feel they lack adequate skills to involve themselves in school curricula. The lack of parental involvement by this population has a negative impact on students’ learning and their academic achievement. The purpose of this study is to impact the level of participation of these families and to study its ultimate effect on students’ academic achievement.

It Takes a Village to Educate a Child: Guiding Parents on How to Implement FCAT Strategies With Their Children During Home Learning

The purpose of this study is to examine the effects of parental involvement on students' academic achievement. This research further proposes to investigate the effects that reading comprehension workshops for parents will have on the level of their involvement. Moreover, results from the study will contribute to the establishment of effective structures of family involvement. The following research questions will guide the study: Is there an increase in parents' confidence in their abilities to help their child in school as a result of parent workshops? Will there be a gain in parents' understanding of FCAT strategies through the use of parent workshops? Will there be an improvement in students' test scores because of parental involvement in parent workshops?

Parents’ Comfort Level: Does it Reflect in the Help They Provide Their Children During Home Learning?

In recent years the literature on parental involvement and how it affects children during home learning has emphasized the relevance of promoting student achievement through parental involvement. Research points to a strong connection on the positive effects for families, children, and school when schools extend themselves to parents and involve them to support their children’s development and learning (Olsen & Fuller, 2003) Consequently, the purpose of this research is to attempt to investigate if parents’ comfort level with reading reflects the help that they provide their children at home with their home learning. Our goal is to increase parents’ level of efficacy in relation to helping their children with home learning as it relates to the reading benchmarks.

Analysis of Haitian Parents’ Perceptions of the Education of Their Children with Disabilities

This study explored Haitian parents’ perceptions of their children with disabilities. Findings revealed parents’ perceptions were guided by two core concepts: coping mechanisms and locus of control. Parental involvement was strongly influenced by values, beliefs, customs, and conceptual knowledge that were closely aligned with culture and acculturation.

Time spent with children and working parents' willingness to medicate ADHD-like behaviors

ADHD, which refers to one of the most common behavioral problems among children, is subject to controversial arguments surrounding its nature and its primary treatment with psychiatric medications. At the heart of the problem are parents, whose responsibility includes providing pivotal information to clinicians for the diagnosis and deciding whether their children will receive medications. This study investigates the relationship between working parents' willingness to medicate ADHD-like behaviors and the time they are able to spend with their children during a regular workday. The importance of time spent with children derives from the observation that it is likely to influence not only parents' judgments of their children's behaviors but the behaviors themselves. The relationship was investigated using a subsample of 551 working parents (452 parents reporting no child with problems and 99 parents reporting child with problems) drawn from a population-based telephone survey of parents in the Miami-Dade and Broward counties of Florida. A series of path analyses, controlling for selected socio-demographic and family variables, showed that spending more time with their children during a regular workday was significantly related to being less willing to medicate ADHD-like behaviors. The association was stronger for parents reporting having a child with emotional and behavioral problems (β = −.20) and faint for other parents (β = −.06). The interpretation of the study findings emphasizes the vagueness surrounding the nature of ADHD and the events and procedures leading to the diagnosing of a child, as well as the delicate situations in which parents find themselves.