Maternal Informal Learning Experiences that Shape Parenting Practices.

Objective: Current understanding of the linkage between maternal education and parenting practices has largely been informed using a narrow definition of educational attainment-the highest level of education an individual has completed. However, the proximal processes that shape parenting, including informal learning experiences, are also important to understand. Less is known about the informal learning experiences that shape parenting decisions and practices. To this end, we conducted a qualitative inquiry about the informal learning experiences of mothers of children ages 3 to 4 years with the specific goal of understanding how maternal informal learning experiences shape parenting decisions and practices. Design: We conducted interviews with 53 mothers from across the United States who had previously participated in a randomized controlled trial (RCT) of an intervention targeting infant care practices. We recruited a purposive sample of mothers chosen to maximize diversity across educational attainment and adherence to infant care practices targeted in the RCT. Using a grounded theory approach, data were analyzed using an iterative process for organizing codes and themes that mothers identified as informal learning experiences. Results: We identified seven themes representing distinct types of maternal informal learning experiences that impact parenting practices, including: (1) experiential learning during childhood; (2) experiential learning during adulthood; (3) interpersonal interactions including via social media; (4) experiences with non-interactive media sources; (5) informal trainings; (6) beliefs; and (7) current circumstances. Conclusions: Multiple informal learning experiences inform the parenting decisions and practices of mothers with varying levels of formal educational attainment.

Parents' and children's decision-making and experiences in pediatric epilepsy surgery.

BACKGROUND: In pediatric epilepsy surgery, little research has been conducted on parents' decision-making for or against surgery, their satisfaction with the surgical outcome, as well as their children's personal experiences with the process. OBJECTIVE: This study explores (1) factors that may influence parents' decision-making, (2) factors associated with their postoperative satisfaction, and (3) their children's involvement in decision-making and their experiences with epilepsy surgery. METHODS: Self-developed questionnaires were provided to parents and their children in Germany, Switzerland, and Austria. Clinical and psychosocial differences between parents who decided for or against surgery, as well as associations between postoperative factors and the parents' satisfaction were statistically analyzed. RESULTS: Fifty-one questionnaires (42 parent and nine patient questionnaires) were evaluated. Parents who decided for epilepsy surgery reported significantly more frequently to have received a good medical consultation and a consistent recommendation. They made significantly less use of information websites, internet forums, and patient organizations. Their children were classified as more intelligent and resisted surgery less. Most of the parents were satisfied with the surgical outcome (83%). Parents were significantly more satisfied when their children had fewer medication side effects, their memory or concentration had improved, their character or behavior had changed in a positive direction, or when their children were more independent or less excluded. They were also significantly more content when they had more free time to themselves and their professional situation or their relationship with their children, friends, or other family members had improved. However, no significant association was found between parental satisfaction and reduced number of medications or improved seizure outcome. Although the children were reported to have been minimally involved in the decision-making process, they were satisfied with their involvement. CONCLUSIONS: A good medical consultation that involves the children and considers the family's living conditions is a crucial factor for parents' decision-making on pediatric epilepsy surgery. For parents' satisfaction, a positive change in their child's character or behavior and an improved psychosocial situation of the family are more important than postoperative seizure frequency or number of antiepileptic drugs (AEDs). Therefore, the medical consultation should not only focus on clinical factors, but also point out psychosocial and behavioral changes that may occur after the surgical treatment.

Transporting Children in Autonomous Vehicles: An Exploratory Study.

OBJECTIVE: Identify factors that impact parents' decisions about allowing an unaccompanied child to ride in an autonomous vehicle (AV). BACKGROUND: AVs are being tested in several U.S. cities and on highways in multiple states. Meanwhile, suburban parents are using ridesharing services to shuttle children from school to extracurricular activities. Parents may soon be able to hire AVs to transport children. METHOD: Nineteen parents of 8- to 16-year-old children, and some of their children, rode in a driving simulator in autonomous mode, then were interviewed. Parents also participated in focus groups. Topics included minimum age for solo child passengers, types of trips unaccompanied children might take, and vehicle features needed to support child passengers. RESULTS: Parents would require two-way audio communication and prefer video feeds of vehicle interiors, seatbelt checks, automatic locking, secure passenger identification, and remote access to vehicle information. Parents cited convenience as the greatest benefit and fear that AVs could not protect passengers during unplanned trip interruptions as their greatest concern. CONCLUSION: Manufacturers have an opportunity to design family-friendly AVs from the outset, rather than retrofit them to be safe for child passengers. More research, especially usability studies where families interact with technology prototypes, is needed to understand how AV design impacts child passengers. APPLICATION: Potential applications of this research include not only designing vehicles that can be used to safely transport children, seniors who no longer drive, and individuals with disabilities but also developing regulations, policies, and societal infrastructure to support safe child transport via AVs.

Extended family support for parents faced with life-support decisions for extremely premature infants.

PURPOSE: To outline parents' descriptions of extended family involvement and support surrounding decision making for their extremely preterm infant. DESIGN: Collective case study design in a prospective, descriptive, longitudinal research. Seventy-five digitally recorded interviews were done with parents before and after the birth. SAMPLE: Fifty-four parents (40 mothers, 14 fathers). MAIN OUTCOME VARIABLE: Categories of family involvement and support in the parents' decision making. RESULTS: Most parents did not seek advice from family members for life-support decisions made prenatally. Instead, parents made the decision as a couple with their physician without seeking family input. Family members provided certain types of support: emotional support, advice and information, prayer, and instrumental help such as child care. Most parents described at least one way their family supported them. For postnatal and end-of-life decisions, parents were more likely to seek advice from extended family in addition to the other forms of support.

Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness.

Objective: To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. Methods: We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression. Results: Higher reported levels of trust were associated with lower preferences for autonomous decision making (Spearman correlation = -0.24; 95% confidence interval [CI] = -0.36 to -0.01; p < 0.008). Among parents with higher levels of trust, increasing anxiety scores were associated with decreasing preference for autonomy, whereas among parents with lower levels of trust, increasing anxiety scores showed an increasing preference for autonomy (regression coefficient = -0.01; 95% CI = -0.02 to -0.001; p ≤ 0.03). Conclusions: Decreasing trust in physicians is associated with a higher preference for autonomous decision making. Parents who have higher levels of anxiety exhibit this association more strongly. Decision support for parents of children with serious illness should use strategies to respect parental decision-making preferences, address potential distrust, and provide mental health support to parents who are anxious or depressed.

Documenting and Understanding Parent's Intervention Choices for Their Child with Autism Spectrum Disorder.

Understanding why parents choose some interventions but not others for their child with autism is important for a number of reasons. Estimating the proportion of evidence-based interventions engaged, identifying the agencies influencing parental decisions, and elucidating the barriers or reasons leading to intervention rejection or discontinuation can result in better service provision. New Zealand parents (n = 570) of a child with autism reported what interventions were being engaged, and why some interventions were engaged but not others. Funding was a major determinant of intervention engagement, while medical professionals exerted the most influence. Sources of support were not related to intervention engagement, but parental perceptions of their child's symptom severity were. Finally, non-engagement does not necessarily reflect parental opposition to an intervention, but rather the existence of barriers.

Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents' Decision-Making Process.

BACKGROUND: In the context of pediatric chronic conditions, patients and families are called upon repeatedly to make treatment decisions. However, little is known about how their decision making evolves over time. The objective was to understand parents' processes for treatment decision making in pediatric chronic conditions. METHODS: We conducted a qualitative, prospective longitudinal study using recorded clinic visits and individual interviews. After consent was obtained from health care providers, parents, and patients, clinic visits during which treatment decisions were expected to be discussed were video-recorded. Parents then participated in sequential telephone interviews about their decision-making experience. Data were coded by 2 people and analyzed using framework analysis with sequential, time-ordered matrices. RESULTS: 21 families, including 29 parents, participated in video-recording and interviews. We found 3 dominant patterns of decision evolution. Each consisted of a series of decision events, including conversations, disease flares, and researching of treatment options. Within all 3 patterns there were both constant and evolving elements of decision making, such as role perceptions and treatment expectations, respectively. After parents made a treatment decision, they immediately turned to the next decision related to the chronic condition, creating an iterative cycle. CONCLUSION: In this study, decision making was an iterative process occurring in 3 distinct patterns. Understanding these patterns and the varying elements of parents' decision processes is an essential step toward developing interventions that are appropriate to the setting and that capitalize on the skills families may develop as they gain experience with a chronic condition. Future research should also consider the role of children and adolescents in this decision process.

A meta-ethnography and theory of parental ethical decision making in the neonatal intensive care unit.

OBJECTIVE: To synthesize the existing qualitative literature about parent ethical decision making in the neonatal intensive care unit (NICU) and to investigate the potential impact of culture on parents' decision making experiences. DATA SOURCES: PubMed, CINAHL plus, and PsychInfo using the search terms parental decision making, culture, race, decision making, and parental decisions. STUDY SELECTION: Qualitative research studies investigating decision making for infants in the NICU from the parents' perspective were included. Studies involving older pediatric populations were excluded. DATA EXTRACTION: Ten primary qualitative research articles were included. The primary author read all manuscripts and tabulated themes related to parents' ethical decision making. DATA SYNTHESIS: Study findings were synthesized using meta-ethnography involving translating concepts of separate studies into one another, exploring contradictions, and organizing these concepts into new theories. Key themes included parent involvement in decision making, parental role, necessity of good information, need for communication, desire for hope and compassion conveyed by providers, decision making satisfaction, and trust in caregiving team. A preliminary theoretical framework of ethical parent decision making was modeled based on the proposed relationships between the themes. CONCLUSIONS: Parent preferences for their involvement in decision making, their perceptions of communication with providers, and their relationships with providers are all important factors in the experience of making decisions for their infants. Needs of parents were the same regardless the ethnic or racial diversity of study participants.

Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review.

Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues for health-care providers and parents who face the challenge of making end-of-life decisions for newborns. The purpose of this integrative literature review was to evaluate parental involvement in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings revealed that establishing good relationships and clear communication between health-care providers and parents builds trust and eases stress placed on parents making decisions about the care of their infant. Palliative care programs provide support for parents and facilitate their decision making. Parents can be educated about how to communicate with health-care providers. Educating nurses on how to provide end-of-life care may also help improve support for parents during this difficult time. Additional research is recommended to examine parents' needs during and after end-of-life care decisions for their newborn.