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Kang-Yi, C. Systematic review of community-based health interventions on depression for older adults with heart disease. Assessment of a brief CES-D measure for depression in homebound medically ill older adults.
Evidence-based practice in older adults with mental health disorders. Roberts Ed.
Treatments for depression in older persons with dementia. Problem solving therapy for depression in adults: A systematic review. Gellis, Z D. Problem solving therapy for late life depression in home care elderly: A randomized controlled trial. Brown, E. Screening and assessment of late life depression in home health care: Issues and challenges.
Hayden has extensive experience as a Health Care Administrator and Consultant. Johnson training community health workers. Hayden has served in the leadership of the American Public Health Association community based and education activities.
J Public Health Manag Pract. He has substantial experience with organizing and implementing community-based outreach and educational activities for older adults with an emphasis on community engagement and multi-culturalism. A model for improving the treatment and care of Alzheimer's disease patients through interdisciplinary research.
Advancing Alzheimer's diagnosis, treatment, and care: Recommendations from the Ware Invitational Summit. Ethnoracial differences in the clinical characteristics of Alzheimer's disease at initial presentation at an urban Alzheimer's disease center. Am J Geriatr Psychiatry. Design of comprehensive Alzheimer's disease centers to address unmet national needs. Association between cognition and function in patients with Parkinson disease with and without dementia.
Mov Disord. Alzheimer Disease and Associated Disorders. Everyday decision-making ability in older persons with cognitive impairment. Preference-based quality of life in patients with Alzheimer's disease. Alzheimers Dement.
Poon has led the Geriatric Education Center-based collaboration with Penn over the past five years with an emphasis on developing interprofessional education and practice models. Interprofessional education: ongoing and planned activities at Pennsylvania Schools of Pharmacy. Academic Medicine, ; Community health worker intervention to decrease cervical cancer disparities in Hispanic women.
Journal of General Internal Medicine, ; Hospital protocols for the inpatient care of older adults: results from a statewide survey. Journal of the American Geriatrics Society, ;58 10 Adapting a patient satisfaction instrument for low literate and Spanish-speaking populations: Comparison of three formats.
Patient Education and Counseling, ; Development of a revised health care system distrust scale. Do palliative consults improve patient outcomes?
Journal of the American Geriatrics Society. PM R 6 11 , Telephone-based care management for older adults initiated on psychotropic medication. Int J Geriatr Psychiatry. Prognosis for functional deterioration and functional improvement in late life among community-dwelling persons. PM R 5 5 , Nursing home assessment of cognitive impairment: development and testing of a brief instrument of mental status.
J Am Geriatr Soc 56 11 , Streim JE. Unique tools of the trade: nursing homes and research in geriatric psychiatry. J Am Geriatr Psychiatry 13 6 , Streim, J. Drug treatment of depression in frail elderly nursing home residents. Am J Geriatr Psychiatry , Lessons from geriatric psychiatry in the long-term care setting. Reviews have been published that discuss ethical and logistical issues in conducting research with the dying and bereaved 2 — 8 ; however, most bereavement reviews focus on research participants who have lost adult family members and who were recruited from single sites.
Methodological considerations specific to multicenter parental bereavement research have not been adequately explored. Multicenter research enhances recruitment of participants with diverse racial, ethnic and geographic backgrounds and is essential for gaining an understanding of heterogeneity in bereavement. The purpose of this paper is to discuss ethical and logistical issues found by the CPCCRN to be problematic to multicenter research with bereaved parents and to explore research strategies that may be practicably implemented.
This information will be used to plan future intervention trials that assess complicated grief as an outcome. Power analysis for the study indicated that parents will need to participate; accrual in this 2-year study is proceeding according to the anticipated schedule. The survey consists of the Inventory of Complicated Grief, 13 scales to assess proposed risk factors, and demographics.
Ethics and logistics are therefore highly interrelated. Not all ethical and logistical issues are discussed in this report, only those that were found by the CPCCRN to be problematic to multicenter parental bereavement research.
These issues include privacy; confidentiality; voluntariness; minimizing risks; working with multiple Institutional Review Boards IRBs ; researcher qualifications, training and support; and methods of data collection.
Privacy Privacy in research requires potential participants to have the right to control access to themselves and their information.
To promote privacy, initial contact with the bereaved may be best accomplished by a written explanation of the research and invitation to participate. For the qualitative study, 12 a letter informed parents that a research coordinator would telephone them within two weeks to request their participation in an interview. For the survey study, the letter was accompanied by survey booklets to be completed by the parents.
The letter informed parents that if the booklets were not returned within 1 month, a research coordinator would telephone them to confirm that they had received the booklets and give them the option of completing the booklets by telephone.
Respect for personal information requires that confidentiality be maintained. In the CPCCRN qualitative study, digitally recorded telephone interviews presented a challenge to confidentiality because voice is a biomarker that can potentially identify research participants. Confidentiality was maintained by secure transmission of voice recordings to the DCC via the Internet using a bit encrypted Secure Sockets Layer connection.
Researchers were prevented from listening to interviews conducted at sites other than their own. Such limited access to the recordings helped to protect participant confidentiality as well as that of the researchers and their institutions.
For example, if a parent made negative comments during an interview about a specific health care provider, these comments would only become available to researchers at other sites after being transcribed in a deidentified form.
For the CPCCRN bereavement studies, contact letters sent to parents contained the essential elements of informed consent. For the survey study, consent was implied by return of the completed survey in the mail, or obtained verbally from parents who completed the survey by telephone. Verbal consent was documented in the research record by the research coordinator administering the survey. Whether the bereaved should be considered vulnerable in research and in need of enhanced protection has been debated.
Letters were printed on hospital letterhead, addressed by hand and signed by both the site investigator and research coordinator.
Surveys were accompanied by return envelopes addressed to the local site. Hand-written thank you cards were sent to participants. This personalized approach may have led some parents to the misconception that the aim of the research was to provide direct feedback to the staff at the local site. When parents expressed this misconception, research coordinators reiterated the multicenter nature of the research and the aim of summarizing research findings to yield new knowledge rather than to provide specific feedback to individuals.
Issues affecting voluntariness that may arise when participants have prior relationships with the recruiting institution include the possibility that they may find it difficult to refuse, or fear that refusing may jeopardize their ability to receive future care. For the CPCCRN bereavement studies, participant response was defined as passive refusal if the parent agreed to be interviewed or surveyed by telephone but failed to keep the appointment, or agreed to complete surveys and return them by mail but never did so.
Minimizing risks Research has shown that the bereaved can participate safely in research and that many find the process helpful. In the CPCCRN bereavement studies, parents were not specifically asked about their reaction to research participation. Although some bereaved parents may be willing to participate in research, the CPCCRN was careful to minimize potential risks. At the end of each telephone contact, parents were reminded of these bereavement support services.
IRBs at some sites required an emergency plan in case a parent seemed severely distressed or suicidal. These plans included calling a designated psychologist familiar with the study who would be available to the parent, or community emergency services.
Working with multiple IRBs A growing body of literature addresses the variability of IRB judgments across sites participating in multicenter studies. The investigator responded to these concerns by providing the IRB with references to studies that safely completed telephone surveys with bereaved parents. Ultimately, the IRB approved telephone contact after reviewing the information and rationale. Therefore, investigators had to consider how a proposed title might affect participants.
The investigator was required to present a list of deceased children to the risk management team. The team was empowered to exclude eligible parents based on the perceived risk to the institution.
Gate-keeping by a risk management team can be detrimental to the validity of research findings because bereaved parents who are especially angry or dissatisfied may be systematically eliminated from the research. To date, the risk management team has prevented contact with only 2 of 32 eligible families.
Other researchers have voiced their opposition to gate-keeping mandates in the absence of formal studies showing benefit to research designs that employ such prior approvals.
The paucity of evidence and inadequate training may contribute to physicians' reluctance to meet with parents after a child's death. Family perspectives must be strongly considered when planning supportive interventions during the complex experience of bereavement. The objective of this study was to investigate parents' perspectives regarding the desirability, content and conditions of a physician-parent conference conducted after their child's death in the pediatric intensive care unit PICU.
The medical records of the deceased children were reviewed to obtain the parents' contact information and primary language. The study was approved by the Institutional Review Board at each site. Informed consent was obtained from all participants.
Recruitment Parents were contacted consecutively beginning with those whose child died 12 months earlier. Initial contact occurred via a mailed letter that originated from the hospital where the child died.
The letter asked parents to participate in a research interview. Parents were telephoned two weeks later to explain the details of the study and schedule interviews.
If both parents of one child agreed to participate, separate interviews were scheduled. Interviews A committee of CPCCRN investigators developed an interview guide to elicit parents' experiences with and perceptions about meeting with their child's intensive care physician after their child's death.
The interview guide was based on the bereavement literature 19 - 23 and the clinical experience of the investigators. Spanish versions of the interview guide were developed by forward and back translation.
To standardize interview procedures, interviewers participated in training sessions that included didactics, modeling of interview techniques, role-playing and feedback.