Parent resuscitation preferences for young people with severe developmental disabilities.
Child; Female; Humans; Male; Adult; Attitude to Health; Choice Behavior; Massachusetts; Program Evaluation; Analysis of Variance; Organizational Policy; adolescent; Preschool; retrospective studies; Parents/education/psychology; DNAR; Attitude to Health; Developmental Disabilities/th [Therapy]; Health Education/og [Organization & Administration]; Parents; Resuscitation Orders/px [Psychology]; Advance Care Planning/og [Organization & Administration]; Advance Care Planning/organization & administration; Consent Forms; Developmental Disabilities/co [Complications]; Developmental Disabilities/complications/therapy; documentation; Health Education/organization & administration; Parents/ed [Education]; Parents/px [Psychology]; Resuscitation Orders/psychology; Skilled Nursing Facilities/og [Organization & Administration]; Skilled Nursing Facilities/organization & administration; Treatment Refusal/psychology; Treatment Refusal/px [Psychology]
OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not., SETTING: Pediatric skilled nursing facility in Massachusetts., PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years., MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR., RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053)., CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.
2006
Friedman SL
Journal Of The American Medical Directors Association
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jamda.2005.06.004" target="_blank" rel="noreferrer">10.1016/j.jamda.2005.06.004</a>
Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care
Female; Humans; Male; Adult; Health Care Surveys; Prospective Studies; Massachusetts; Boston; Needs Assessment; Practice; adolescent; Attitudes; Adolescent Transitions; Health Knowledge; Aging/psychology; Continuity of Patient Care/organization & administration; Counseling/organization & administration; Cystic Fibrosis/psychology/therapy; Day Care/organization & administration; Preventive Medicine/organization & administration; Pulmonary Disease (Specialty)/statistics & numerical data
The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children's hospital. Thirty-two patients >/=16 years old diagnosed with CF were recruited from a pediatric tertiary care setting. During face-to-face interviews, patients were asked 27 structured questions and completed a 30-item self-administered questionnaire on preventive counseling by healthcare providers and on transition issues. The median age of patients was 25.5 years (range, 16-43 years); 69% of patients identified a pulmonologist as their "main doctor," even though 78% had a primary care provider. Participants felt that 13-16 years of age was the best time for them to begin spending time alone with their main doctor. Less than half of the participants recalled receiving preventive counseling during the previous 12 months, and more patients wanted to discuss issues than actually did. Qualitative data emphasized the importance of independence in making decisions in healthcare and establishing relationships with providers, and many patients did not desire to transfer care to an adult hospital. Participants identified adult-focused services such as inpatient rooms, discussion groups, work options, and social service support that would enhance care. In conclusion, the majority of adolescent/young adult patients with CF receiving care in a pediatric institution reported satisfaction with their healthcare. However, patients identified preventive issues that they desired to be more regularly addressed, starting in early adolescence, and changes in the delivery of services to enhance transition to adult-oriented care. This study underscored the understanding of the integration of transition planning into the facilitation of healthcare decision-making by the adolescent in issues of self-care, sexuality, education, and finances. Future initiatives to enhance the care of patients with CF should provide training of pulmonologists in preventive care and increased attention to helping patients utilize appropriate primary-care services during the adult years. In addition, prospective studies are needed to compare outcomes of CF patients who have transitioned and transferred to adult hospitals and those transitioning to adult-oriented services in a pediatric institution.
2003
Zack J; Jacobs CP; Keenan PM; Harney K; Woods ER; Colin AA; Emans SJ
Pediatric Pulmonology
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/ppul.10342" target="_blank" rel="noreferrer">10.1002/ppul.10342</a>
Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students
Female; Humans; Male; Questionnaires; Massachusetts; Health Behavior; Emergency Service; Practice; adolescent; Hospital/utilization; Empirical Approach; Professional Patient Relationship; Attitudes; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Health Knowledge; Adolescent Health Services/utilization; Confidentiality; Community Health Centers/utilization; Physicians' Offices/utilization; School Health Services/utilization; Students
OBJECTIVE--To assess adolescent knowledge, perceptions, and attitudes about health care confidentiality. DESIGN--Anonymous self-report survey with 64 items addressing confidentiality issues in health care. SETTING--Rural, suburban, and urban high schools in central Massachusetts. PARTICIPANTS--Students in ninth through 12th grades from three schools. RESULTS--A total of 1295 students (87%) completed the survey: 58% had health concerns that they wished to keep private from their parents, and 69% from friends and classmates; 25% reported that they would forgo health care in some situations if their parents might find out. There were differences in response by gender, race, and school. About one third were aware of a right to confidentiality for specific health issues. Of those with a regular source of care, 86% would go to their regular physician for a physical illness, while only 57% would go there for questions about pregnancy, the acquired immunodeficiency syndrome, or substance abuse that they wished to keep private. Sixty-eight percent had concerns about the privacy of a school health center. CONCLUSIONS--A majority of adolescents have concerns they wish to keep confidential and a striking percentage report they would not seek health services because of these concerns. Interventions to address confidentiality issues are thus crucial to effective adolescent health care.
1993
Cheng TL; Savageau JA; Sattler AL; DeWitt TG
Jama
1993
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/jama.269.11.1404" target="_blank" rel="noreferrer">10.1001/jama.269.11.1404</a>
Assessing mothers' attitudes about the physician's role in child health promotion
Child; Female; Humans; Adult; Attitude to Health; Questionnaires; Massachusetts; Physician's Role; Preschool; Adolescent Transitions; Child welfare; health promotion; Mothers/psychology/statistics & numerical data
OBJECTIVE: This study assessed maternal attitudes about the physician's role in child health promotion. METHODS: Home interviews were conducted with 200 Massachusetts mothers (with one child age 2 to 3 years) enrolled in a health maintenance organization. RESULTS: Mothers chose growth and nutrition, physical development, and illness as the most important topics and felt that providers have the ability to prevent problems and to help. Psychosocial and safety issues were less important, although mothers felt susceptible to these issues and believed they greatly affected children's health. CONCLUSIONS: On all issues, mothers believed physicians were more effective in helping families after, not before, problems arose. The Health Belief Model provided insight into attitudes and possible interventions.
1996
Cheng TL; Savageau JA; Bigelow C; Charney E; Kumar S; DeWitt TG
American Journal Of Public Health
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2105/ajph.86.12.1809" target="_blank" rel="noreferrer">10.2105/ajph.86.12.1809</a>
Into the water--the clinical clerkships
Humans; Physician-Patient Relations; Massachusetts; Curriculum; Schools; Medical; empathy; Students; Teaching/methods; Clinical Clerkship/methods; Medical/psychology; Mentors
Treadway K; Chatterjee N
The New England Journal Of Medicine
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1056/NEJMp1100674" target="_blank" rel="noreferrer">10.1056/NEJMp1100674</a>
Research participation experiences of parents of children with cancer who were asked about their child's prognosis
adolescent; Child; Female; Humans; infant; Male; Neoplasms; Adult; Parents; Prognosis; Massachusetts; Hospitals; Research; Pediatric; Preschool; Surveys and Questionnaires
BACKGROUND: In questionnaire-based research, human subject protection committees must assess the emotional impact of the study on participants. Without clear data about the risks and benefits of participating in such studies, however, review board members must use personal judgment to assess emotional harm. OBJECTIVE: To examine experiences of distress and value of participation in a study of prognosis communication among parents of children with cancer, and to identify factors associated with predominantly distressing research experiences. METHODS: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, in the first year after the child's cancer diagnosis. The survey focused on the child's prognosis and parent-physician communication; at the end, we asked parents how distressing and how useful completing the survey had been to them personally. RESULTS: Only 1% of parents found research participation to be "very" distressing. The majority of parents were "not at all" distressed by participating (62%), and most reported that the questionnaire was at least "a little" useful to them personally (69%). Overall, 18% of parents gave higher ratings for distress than for utility. Parents were more likely to experience research participation as predominantly distressing when they found prognostic information to be upsetting (odds ratio [OR] 5.38, p=0.005). CONCLUSION: Most participating parents were able to respond to questions about their child's prognosis with little or no distress. Even when distress was present, it was often accompanied by a perception that participating was of value.
Olcese ME; Mack JW
Journal Of Palliative Medicine
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2011.0304" target="_blank" rel="noreferrer">10.1089/jpm.2011.0304</a>