Browsing by Subject "Families"
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Item Co-Investigation and Co-Education in ‘Family as Faculty’ Approaches: A Repositioning of Power(Taylor & Francis, 2021) Santamaría Graff, CristinaFamily as Faculty (FAF) approaches originate from family-centered healthcare models and have been adapted in special education teacher education programs to positively influence and impact pre-service special education teachers’ dispositional understandings of working and collaborating with parents/families. However, the majority of research centered on these approaches fails to address issues of equity, specifically uneven power relationships between teachers and families. This paper expands upon FAF approaches by integrating conceptual framings linked directly to critical pedagogy, such as co-investigation and co-education, as integral components in addressing power relations between future special education teachers and multiply marginalized families of children with disabilities. Deliberate repositioning of parents/families as co-investigators/co-educators within research and teacher education programs targets uneven power dynamics to further assist future teachers in critical self-reflection of their own power and privilege in relation to the students and families with whom they will work.Item Development Of A Brief Measure Of Communication Quality: The 5- And 10-Item Family Inpatient Communication Surveys(Oxford University Press, 2022) Burke, Emily; Slaven, James; Taylor, Tracy; Monahan, Patrick; Sachs, Greg; Torke, Alexia; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public HealthCommunication quality between clinical care teams and families impacts important outcomes like satisfaction, depression, and anxiety. Assessment tools must be efficient and reliable to be useful in the clinical environment. We report the development of 5 and 10-item versions of the validated 30-item Family Inpatient Communication Survey (FICS). Data were from 364 surrogate decision makers (SDMs) for incapacitated older adults in the ICU. Most SDMs were adult children (66.8%). SDMs were 70.9% female, 68.9% white, with a mean age of 58.3. Exploratory factor analysis revealed high internal reliability for the single-factor FICS5 (α= .88) and two-factor FICS10 (α= .93). The FICS10 reliably measures two subscales: information (α= .91) and emotional support (α=.81). Good discriminant and predictive validity were demonstrated when comparing total scores to outcomes at 6-8 weeks after hospital discharge, including anxiety (correlation coefficient (ρ)= -.13; p=.0234 ), depression (ρ =-.15; p=.0076), decision regret (ρ =--.15; p=.0066), and satisfaction (ρ =-..48; p<.0001). Repeating analysis with a new sample (n=188) revealed similar results with Cronbach’s alpha ranging from .81 to .93. The FICS5 revealed significant associations (p<.05) at 6-8 weeks after discharge with distress (-.22), while the FICS10 demonstrated significant associations with distress (-.28), anxiety (-.20), depression (-.19) and decision regret (-.27). Confirmatory factor analysis indicated adequate fit (CFI: FICS5= .994, FICS10= .994; RMSEA: FICS5= .093, FICS10= .103). The FICS provides clinicians and interventionists with a reliable, low burden tool to evaluate communication quality and respond quickly, which could impact satisfaction and other important outcomes for patients and families.Item Evaluation of the burdens and benefits of participation in research by parents of children with life-limiting illnesses(RCN Publishing, 2019-09-16) Hopper, Audrey; School of NursingBACKGROUND: Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants. AIM: To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents' experiences of having a child with life-limiting cancer participate in a Phase I clinical trial. DISCUSSION: Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants' experiences. CONCLUSION: This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research. IMPLICATIONS FOR PRACTICE: It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.Item Motivating Patients With Parkinson's Disease And Their Families To Discuss Preparation For End-Of-Life Care(Oxford University Press, 2022) Xu, Jiayun; Hickman, Susan; Huber, Jessica; Sudore, Rebecca; Shields, Cleveland; Moonesinghe, Dilhara; Parr, Aubrey; Kong, Taylor; School of NursingParkinson’s disease is the second most common neurological illness among older adults. Although most patients with Parkinson’s face communication challenges in advanced illness, few talk about care preferences and are unprepared for worsening illness as a result. Thus, the purpose of the study was to explore the experience of making end-of-life decisions or the preparation of making end-of-life decisions among patients with Parkinson’s, their family caregivers, and clinicians. The long-term goal of this study is to develop a medical decision-making resource for patients and families to better prepare for the end of life. We conducted one-hour semi-structured interviews with nine patients, 12 caregivers, and 12 clinicians to explore perceptions of whether end-of-life discussions may be difficult, the preferred timing of end-of-life information, and how to best motivate patients and their families to prepare. Descriptive thematic qualitative analysis methods were used to analyze the transcribed interviews. Participants were on average 59.7±15.3 years of age, 69.7% female, and 69.7% married. The predominant reasons for delaying end-of-life discussions were the unpredictability of Parkinson’s disease, limited illness and prognostic awareness, and clinicians not initiating the discussion earlier in the disease course. There was a mismatch in preferences for timing of end-of-life information, with patients and family wanting end-of-life information presented earlier in the illness than clinicians. All participants desired a resource to help patients and caregivers cope emotionally, to guide future decisions, and to help prompt conversations. Findings indicate that despite provider concerns, patients and their families want early information about end-of-life issues.Item Predicting Treatment Response of Adolescents with Serious Emotional Disturbance(APNA 25th Annual Conference, 2011-10-20) Oruche, Ukamaka M.System of care (SOC) philosophy values child-guided and family-driven care and emphasizes that services must be delivered in a way that enhances dignity, respects wishes and goals, maximizes opportunities for active involvement for adolescents and their families. Our specific aim was to was to examine whether changes in adolescent personal strengths and family functioning over 12 months predicted changes in behavioral and social functioning for adolescents with disruptive disorders who participated in a SOC program.Item A tradition of giving(2016-05-19) Osili, Una; Clark, Chelsea; Bergdoll, JonathanThis project examines an underexplored topic—intra-family connections across generations (as opposed to inter-family connections)—and takes it one step further. The study provides a more useful framework for understanding the transmission of giving attitudes and behaviors within families than what was previously available using a traditional generational lens.Item Trajectory Analysis for Identifying Classes of Attention Deficit Hyperactivity Disorder (ADHD) in Children of the United States(Bentham Open, 2024-05-21) Lee, Yu-Sheng; Sprong, Matthew Evan; Shrestha, Junu; Smeltzer, Matthew P.; Hollender, Heaven; Health Sciences, School of Health and Human SciencesBackground: Attention Deficit Hyperactivity Disorder (ADHD) is a mental health disorder that affects attention and behavior. People with ADHD frequently encounter challenges in social interactions, facing issues, like social rejection and difficulties in interpersonal relationships, due to their inattention, impulsivity, and hyperactivity. Methods: A National Longitudinal Survey of Youth (NLSY) database was employed to identify patterns of ADHD symptoms. The children who were born to women in the NLSY study between 1986 and 2014 were included. A total of 1,847 children in the NLSY 1979 cohort whose hyperactivity/inattention score was calculated when they were four years old were eligible for this study. A trajectory modeling method was used to evaluate the trajectory classes. Sex, baseline antisocial score, baseline anxiety score, and baseline depression score were adjusted to build the trajectory model. We used stepwise multivariate logistic regression models to select the risk factors for the identified trajectories. Results: The trajectory analysis identified six classes for ADHD, including (1) no sign class, (2) few signs since preschool being persistent class, (3) few signs in preschool but no signs later class, (4) few signs in preschool that magnified in elementary school class, (5) few signs in preschool that diminished later class, and (6) many signs since preschool being persistent class. The sensitivity analysis resulted in a similar trajectory pattern, except for the few signs since preschool that magnified later class. Children's race, breastfeeding status, headstrong score, immature dependent score, peer conflict score, educational level of the mother, baseline antisocial score, baseline anxious/depressed score, and smoking status 12 months prior to the birth of the child were found to be risk factors in the ADHD trajectory classes. Conclusion: The trajectory classes findings obtained in the current study can (a) assist a researcher in evaluating an intervention (or combination of interventions) that best decreases the long-term impact of ADHD symptoms and (b) allow clinicians to better assess as to which class a child with ADHD belongs so that appropriate intervention can be employed.Item Vaccinated members of Luther family.(Indiana State Board of Health, 1904-09)Mrs. Frank Luther and children, vaccinated and in same rooms with the father when he had smallpox, but they did not have the disease.