Family Denial Research Articles

Exploring cultural differences in the understanding of Alzheimer’s Disease and related dementias among Alaska Natives and providers in Alaska

AbstractBackgroundThe proportion of the Native population aged 65+ is projected to increase between 2015 and 2045, from 7‐12%, and informal caregivers and health care providers are ill‐prepared to meet the demand of Alzheimer’s Disease and related disorders (ADRD). There is an increasing urgency to better understand Alaska Native views of ADRD.MethodGuided by Kleinman’s explanatory model of illness, a qualitative, research design was utilized to gather data on experiences with ADRD. 21 interviews with Alaska Native caregivers and 12 interviews with health care providers in rural and urban communities were completed. Using Nvivo qualitative software, thematic analysis was used to obtain cultural perspectives on ADRD. This study was approved by the University and tribal review boards.ResultMany Alaska Natives view ADRD as a natural part of the aging process, resulting in not always seeking medical care. Caregivers challenges included family denial, exhaustion and isolation, and family distancing themselves due to fear and limited understanding of ADRD. Caregiving benefits included spending time with older adult, learning family history, and sharing experiences with other caregivers. Healthcare provider challenges included rigidity of the healthcare system, no research on Alaska Natives, limited health literacy, limited community resources, and no knowledge of Alaska Native views of ADRD.ConclusionUnderstanding the cultural underpinnings of ADRD provides insight into how health care providers can integrate cultural beliefs into treatment to improve the processes of care that may mitigate the impact of ADRD on individuals and families. Culturally‐responsive education and training about ADRD is crucial to connecting Alaska Natives with ADRD to care that can assist them in aging more comfortably

Three Major Interrelated Factors Contributing to Homelessness Issue among Former Prisoners in Malaysia

Homelessness issue among former prisoners in Malaysia upon their release is of great concern. Hence, this study aimed to identify the predominant factors influencing homelessness issue among former prisoners in Malaysia. Imprisonment is usually assumed to be a negative life event and can act as a hindrance for the former prisoner to successfully integrate after being freed from prison. Imprisonment and past criminal records are the biggest contributors to becoming homeless. This is a fact because imprisonment causes the former prisoners to lose his source of income, personal belongings, ability to seek shelter and personal relationships due to family rejection, addiction and unemployment. This study was based on the Ecological Model of Homeless by Nooe and Patterson. The selection of this model was considered appropriate and aligned with the objectives of the study which aimed to identify the factors that lead to the life of the homeless among former prisoners. In this study, nineteen former prisoners, regardless of the type of offence committed, were selected using the snowball sampling method and were interviewed. The findings revealed that family denial, unemployment, and drug addiction were the three major interrelated factors that contribute to the homelessness issue among the former prisoners during their reintegration process. Housing security is a risk factor of homelessness.

Cultural construction of ADRD among Alaska natives and providers in Alaska

AbstractBackgroundThe proportion of the Native population aged 65+ is projected to increase between 2015 and 2045, from 7‐12%, and health care providers are ill‐prepared to meet the demand of Alzheimer’s Disease and related disorders (ADRD). There is an increasing urgency to better understand Alaska Native views of ADRD.MethodGuided by Kleinman’s explanatory model of illness, a qualitative, research design was utilized to gather data on experiences with ADRD. 21 interviews with Alaska Native caregivers and 12 interviews with health care providers in rural and urban communities were completed. Using Nvivo qualitative software, thematic analysis was used to obtain cultural perspectives on ADRD. This study was approved by the University ad tribal review boards.ResultMany Alaska Natives view ADRD as a natural part of the aging process, resulting in not always seeking medical care. Caregivers challenges included family denial, exhaustion and isolation, and family distancing themselves due to fear and limited understanding of ADRD. Caregiving benefits included spending time with older adult, learning family history, and sharing experiences with other caregivers. Healthcare provider challenges included rigidity of the healthcare system, no research on Alaska Natives, limited health literacy, limited community resources, and no knowledge of Alaska Native views of ADRD.ConclusionUnderstanding the cultural underpinnings of ADRD provides insight into how health care providers can integrate cultural beliefs into treatment to improve the processes of care that may mitigate the impact of ADRD on individuals and families. Culturally‐responsive education and training about ADRD is crucial to connecting Alaska Natives with ADRD to care that can assist them in aging more comfortably.

Sociocultural Barriers to Early Diagnosis of Autism Spectrum Disorder


 
 
 Objective: To qualitatively explore community, family, and health care system barriers to early diagnosis of autism spectrum disorder (ASD) in children. Study Design: A phenomenological qualitative approach was used to explore mothers' experiences of receiving ASD diagnosis for their children. Place and Duration of Study: The study was conducted at Autism Resource Centre Islamabad, from March 2018 to August 2018. Materials and Methods: In-depth qualitative interviews of eight mothers of children diagnosed with ASD, who were above 36 months of age. Results: Using thematic analysis, three major themes were identified as barriers in reaching ASD diagnosis i.e. parent's lack of knowledge and misperceptions of ASD; health care system issues like undefined pathway to care, dissatisfaction with medical or associated professionals, delays due to structural and process barriers; and family factors such as stigma around mental health and disability, family denial and financial constraints. Conclusion: Additional educational outreach to families, de-stigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to parents of at-risk children may decrease delays in ASD diagnosis among children.
 
 

Desafios da enfermagem no processo de doação para transplante de órgãos: revisão integrativa

Objetivo: Identificar os desafios enfrentados pela enfermagem no processo de doação para transplantes de órgãos. Métodos: Revisão integrativa, realizada nas bases de dados Medical Literature Analysis and Retrieval System Online (MEDLINE), Scientific Eletronic Libray Online (SciELO), Biblioteca Virtual em Saúde (BVS) e Literatura Latino-americana e Caribe em Ciências da Saúde (LILACS), no período de 2014 a 2019. Os descritores associados foram: Obtenção de Tecidos e Órgãos, Transplante e Enfermagem Resultados: A amostra foi composta por 9 artigos que apresentam a necessidade de promover educação continuada no processo de captação e revelam dificuldades nas estratégias de saúde para disseminar informações sobre a importância do ato da doação e promoção da sensibilização. Os desafios enfrentados pela equipe de enfermagem afetam o planejamento e as estratégias para o estímulo ao ato de doar, o que impacta nas dificuldades frente ao processo de doação e captação de órgão para transplante. Considerações finais: Os principais desafios encontrados pela enfermagem durante o processo de doação foram: dificuldades na identificação e confirmação da morte encefálica e a negação/recusa familiar. E como soluções aos desafios estão: priorizar as comissões intra-hospitalares, as avaliações clínicas e a comunicação adequada da equipe com a família.

Using Online Communication Skills Training to Increase Organ Donation Authorization.

Family denial of organ donation from deceased donor-eligible patients is a major contributor to the deficit of transplantable organs in the United States. Does an evidence-based communication intervention improve deceased organ donor authorization rates from family decision-makers? This implementation and dissemination study used Communicating Effectively about Donation on Organ Procurement Organization professionals responsible for discussing donation and obtaining authorization from family decision-makers. A 14-month, nationwide social marketing campaign generated a sample of 682 requesters, yielding a final analyzable sample of 253 participants. Serving as their own controls, participants spent the first 3 months in a preintervention period, completed the web-based intervention, and progressed to a 3-month postintervention period. Participants completed brief online weekly surveys to assess the intervention's impact on their communication skills. Authorization rates did not improve overall between the pre- and postintervention periods. A differential effect of the intervention on 3 distinct groups of requesters was found: one group exhibited high and stable authorization rates pre-post (78%-74%); a second group had low initial authorization rates that increased after exposure to the intervention (46%-73%); the third had low and variable rates of authorization that failed to improve after the intervention (45%-36%). This study underscores the value of evidence-based communication training. Training targeted to requesters' skill levels is needed to realize overall improvements in individual performance, the quality of donation discussions, and rates of family decision-maker authorization to solid organ donation.

Análise dos motivos para não doação de órgãos em hospital de referência na Amazônia

Objetivo: analisar os motivos para não doação de órgãos em hospital de referência na Amazônia. Método: foi realizado um estudo transversal, com os pacientes do Hospital Metropolitano de Urgência e Emergência, após declaração de morte cerebral. Resultados: observamos que no hospitalmetropolitano, 65% das famílias foram abordadas, porém 73% destas não permitiram a doação, sendo 68% das recusas pelo desejo de manutenção do corpo íntegro. Conclusão: no hospital metropolitano, a justificativa principal de negação familiar da doação foi o desejo do corpo íntegro. A não abordagem familiar foi devido à contraindicação médica ou impossibilidade de localizar a família em tempo hábil.

Attitudes and practices of general practitioners towards elderly patients with cognitive deficits

BackgroundTunisia has experienced a considerable increase in degenerative diseases associated with aging including in particular dementia and Alzheimer's disease.ObjectivesTo evaluate the diagnostic procedures of cognitive impairments in general medicine and to identify obstacles concerning the early diagnosis of dementia in these patients.MethodsAn email questionnaire was sent to a sample of general practitioners (GPs) working in the Sfax region, Tunisia.ResultsWe received 55 answers. When facing a mnesic complaint, 20% of GPs perform a screening of cognitive disorders. Among reasons leading to early identification, memory complaints (76.4%) was the most mentioned by GPs surveyed. the Mini Mental State was the most used (34.5%) by general practitioners. Twenty-nine point one percent (29.1%) of physicians conducted a comparative assessment 6 to 12 months later if the initial evaluation was normal and 83.6% send the patient to a specialist in case of a detected disorder. For GPs, in 58.2% of the cases, the major impediment is the lack of time, in 32.7% of the cases it is patient's and family's denial and in 23.6% of the cases it is the absence of effective medical treatment. A cross analysis shows that GPs who have had further training in geriatrics have a better approach.ConclusionOur study shows a lack in the early identification of cognitive impairment in the elderly by GPs. Develop simple cognitive tests, reinforce training of doctors and promote research to develop new drugs would improve early diagnosis and management of dementia.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study

Background: In Asian societies including Pakistan, a complex background of illiteracy, different familial dynamics, lack of patient’s autonomy, religious beliefs, and financial constraints give new dimensions to code status discussion. Barriers faced by physicians during code status discussion in these societies are largely unknown. Aim: To determine the barriers and perceptions in discussion of code status by physicians. Design: Questionnaire-based cross-sectional study. Setting and participants: This study was conducted in the Department of Medicine of The Aga Khan University Hospital, Karachi, Pakistan. A total of 134 physicians who had discussed at least five code statuses in their lifetime were included. Results: A total of 77 (57.4%) physicians responded. Family-related barriers were found to be the most common barriers. They include family denial (74.0%), level of education of family (66.2%), and conflict between individual family members (66.2%). Regarding personal barriers, lack of knowledge regarding prognosis (44.1%), personal discomfort in discussing death (29.8%), and fear of legal consequences (28.5%) were the top most barriers. In hospital-related barriers, time constraint (57.1%), lack of hospital administration support (48.0%), and suboptimal nursing care after do not resuscitate (48.0%) were the most frequent. There were significant differences among opinions of trainees when compared to those of attending physicians. Conclusion: Family-related barriers are the most frequent roadblocks in the end-of-life care discussions for physicians in Pakistan. Strengthening communication skills of physicians and family education are the potential strategies to improve end-of-life care. Large multi-center studies are needed to better understand the barriers of code status discussion in developing countries.

Abstract 11015: Why Don’t Heart Failure Patients Respond to Worsening Symptoms?

Background: Long delays in seeking medical care are common in patients with worsening symptoms of heart failure (HF) and lead to longer lengths of hospital stay, increased healthcare costs, and increased morbidity and mortality. However, patient-reported reasons for delay have rarely been explored. Objective: To describe patient-reported reasons for delay in seeking medical care for worsening symptoms. Methods: As part of a clinical trial designed to reduce HF readmission and mortality for worsening symptoms, we administered the HF Symptom Response Questionnaire to all patients prior to intervention. The instrument measures reasons why patients delay seeking treatment. All patients had a recent hospitalization for HF, were community dwelling in a rural location, and had no cognitive impairments as measured with the Mini-Cog. Results: A total of 614 HF patients (59% male, NYHA class III/IV 35%, 19% without a high school education, mean age 66±13 years, median b-type natriuretic peptide level 186 pg/ml [25th percentile = 72, 75th percentile = 462] were studied. The most common reasons for not seeking early treatment were symptom uncertainty (62.4%), symptoms seem vague or came on too gradually (67.4%), symptoms slightly different from last episode (55.2%) and the symptoms didn’t seem to be serious enough (62.2%). Other reasons include embarrassment at seeking treatment (23.9%), not wanting to second guess the doctor (21.7%), financial concerns (19.9%), transportation issues (16.4%), and other (10.7%). Reasons given in the other category included afraid/don’t like doctors or hospitals, care of pets at home, family needs them, not wanting to bother others, denial/don’t want to know/fear of knowing, and weather. Conclusions: Despite experiencing worsening HF symptoms of such intensity that hospitalization is required, most patients do not perceive that symptoms are intense or certain enough to warrant action. In many, treatment seeking decisions are superseded by factors not related to symptom appraisal such as family obligations, fear or denial, and embarrassment. Education to improve response to worsening HF symptoms requires skills in symptom appraisal, and counseling to overcome personal barriers to seeking treatment.

Intensive care medicine and organ donation: Exploring the last frontiers?

The main, universal problem for transplantation is organ scarcity. The gap between offer and demand grows wider every year and causes many patients in waiting list to die. In Spain, 90% of transplants are done with organs taken from patients deceased in brain death but this has a limited potential. In order to diminish organ shortage, alternative strategies such as donations from living donors, expanded criteria donors or donation after circulatory death, have been developed. Nevertheless, these types of donors also have their limitations and so are not able to satisfy current organ demand. It is necessary to reduce family denial and to raise donation in brain death thus generalizing, among other strategies, non-therapeutic elective ventilation. As intensive care doctors, cornerstone to the national donation program, we must consolidate our commitment with society and organ transplantation. We must contribute with the values proper to our specialization and try to reach self-sufficiency by rising organ obtainment.

Medicina intensiva y donación de órganos. ¿Explorando las últimas fronteras?

The main, universal problem for transplantation is organ scarcity. The gap between offer and demand grows wider every year and causes many patients in waiting list to die. In Spain, 90% of transplants are done with organs taken from patients deceased in brain death but this has a limited potential. In order to diminish organ shortage, alternative strategies such as donations from living donors, expanded criteria donors or donation after circulatory death, have been developed. Nevertheless, these types of donors also have their limitations and so are not able to satisfy current organ demand. It is necessary to reduce family denial and to raise donation in brain death thus generalizing, among other strategies, non-therapeutic elective ventilation. As intensive care doctors, cornerstone to the national donation programme, we must consolidate our commitment with society and organ transplantation. We must contribute with the values proper to our specialization and try to reach self-sufficiency by rising organ obtainment.

The ties that bind: Family barriers for adult women seeking to report childhood sexual assault in Australia

Synopsis In this article, we observe that barriers to the disclosure and reporting of sexual assault reside within families. We draw on qualitative survey data, as well as interviews with adult victims of childhood sexual assault, to show how women are impeded by family members when attempting to disclose or report sexual assault. Taylor and Putt (2007) identified three ‘family constraints on [sexual violence] reporting’ for women from culturally and linguistically diverse (CALD) backgrounds in Australia. These were: 1) Family denial that sexual violence exists, 2) Reluctance to report a partner perpetrator, and 3) Fear of being ostracised for bringing shame upon the family (p. 4). We examine whether similar barriers to reporting exist for adult female survivors of childhood sexual assault who are from non-CALD backgrounds. On the basis of our findings, we urge greater police and public recognition of, and sensitivity to barriers extant within non-CALD families that contribute to the under-reporting of sexual assault by women in Australia.

Cardiac life mechanical support in extrahospitalary donors after cardiac dead

Introduction: The Madrid Emergency Medical Service (SUMMA112) in collaboration with Madrid's hospitals are employed at a program of donation of patients’ organs that have suffered out-of-hospital cardiac arrest and no response of advanced life support (ALS). The study's aim is to assessment the use of mechanical cardio pump in this program. Material and method: descriptive retrospective study based on the summary of information of the clinical records of all the cases in which the donor's protocol has been activated in asystole (Code O) during the year 2009.It use two mechanical cardio pump: Autopulse – Zoll© and Lucas – Physio Control©. Results: A total of 52 cases. 84.6% men and 15.4% women. The average's age was 41 years (20–61). The average's time of arrival to place of the intervention was 11 min and 46 s. The average's time of arrival to the hospital from the entry of the alarm call was 79 min. There were obtained 100 organs (17 liver, 1 lungs, 56 kidneys, 10 bones and 16 eye tissue), an average near 2 by patient. In 17.3% they were not valid donors. The reasons of not donation were a failure extracorporeal pump in 1 cases, family denial in 5 cases, judge negative in 2 cases and biological reason in 2 of the cases (tumoral active pathology, positive serology, etc.). Autopulse© was used in 20 cases and Lucas© in 30 cases. In two cases do not use anyone. Conclusions: The use of these devices joins perfectly the non-heart beating donors procedure. The quality improves of the RCP and facilitates the work of the emergency team. It is necessary more studies to verify if his use increases the number of donated organs.

Identification of Variables That Influence Brain-Dead Donors' Family Groups Regarding Refusal

Objective To identify the variables that influenced brain-dead donor family groups to refuse donation. Methods The Tissue and Organ Procurement System in Venezuela designed a tool to register some phases of a family interview performed by transplant coordinators. This tool analyzed three phases. The first phase of the interview allowed the coordinator to evaluate the communication quality with the family group during a brain-death notification. The second phase assessed how families understood this notification, and the third phase identified the family grief sequence. Among the 186 interviews during 2007 to procure tissues and organs for transplantation, 37.63% ( n = 70) concluded as family refusals. A retrospective study sought to analyze these results. Results The average time between notification of brain death and the first approach to the family was 8.78 hours. Setting a place for interviews was done in 91.10% of cases. Previous knowledge about donation was seen in only 53.33% of cases. The main phase of family grief identified was denial (80%). The five reasons for family denial were: absolute denial, family disagreement, uncertainty about the destination of the donated organs and tissues, fear about deformation of the donor's body, and lack of acceptance of brain death. Conclusions Brain-death notification produced a deep sadness among family groups. There was a lack of knowledge regarding donation of tissues and organs. It was impossible to quantify the time needed by families to understand and accept brain death and to identify the grief sequence in order to avoid family refusals.

A family facing end of life issues of a person with learning disabilities – a personal reflection

Accessible summary A medical student works with a patient with a profound learning disability, gets to know the family and considers the overall effect of the condition on them. The family's denial of the illness can block understanding and creates problems for them all. Practical ways of helping the family to come to terms with their grief, now and in the future are considered. Working with people with learning disabilities is a positive experience and more medical students should be encouraged to do it. SummaryIn 2005, the Royal College of Psychiatry Faculty of Learning Disability's three judges unanimously awarded the inaugural Medical Student Essay Prize to Ian Harwood, a mature medical student at Barts & The London School of Medicine.This reflective piece records an undergraduate's contact with an adolescent suffering from advanced Sanfillipo Syndrome and her family. The initial impetus for the essay was the challenge of carrying out a history‐taking communication skills project when the patient has profound learning difficulties and cannot verbally communicate.Research into pathological grief in the general population is a relatively recent area of focus and it has been established that little work has been performed to examine the effects of bereavement and loss on people with learning disabilities (Dodd, Dowling & Hollins, 2005). The untimely death of a child, described in 1995 by Judd as ‘a death out of season’, is one of the most shocking and profoundly disturbing events that can occur. The role, nature and consequences of denial in such a family with a member with profound learning difficulties are explored. Existing research is used to justify concern for the family's future capacity to cope and relevant management strategies are proposed.It concludes that exposing medical students to people with learning disabilities and their families can provide valuable opportunities for both personal and professional growth.

The emotional and psychological impact of multiple sclerosis relapses

Acute relapses of multiple sclerosis (MS) are experienced as crises that disrupt the status quo for individuals with MS and their families. These unpredictable—and always unexpected—events elicit strong reactions, including grief, anxiety, anger, and guilt, as people struggle to understand why they occur. Although early relapses are a signal for most MS specialists to recommend treatment with one of the approved disease-modifying therapies, the remissions that follow contribute to patient and family denial about the realities of the disease, making it difficult for patients to begin and to adhere to ongoing treatment. Each ensuing attack confronts this denial, forcing patients and families to acknowledge the MS diagnosis and begin adapting to the demands of the illness in their daily lives. This paper discusses the meaning attributed by individuals and families to relapses leading to the MS diagnosis and the recommendation for disease-modifying therapy, the adjustments that are made by patients and their families to residual deficits following acute episodes, and suggestions for clinicians on how they might facilitate the adjustment process.

Differences in Problems Faced by Families with a Child Coping with a Serious Emotional Disorder or an Adult Member Coping with Mental Illness

Examination of similarities and differences in the issues families face can help determine whether models for families with a child coping with serious emotional disorder (SED/behavioral disorder (BD)) warrant inclusion in, or adaptation of, interventions for families with an adult member coping with a mental disorder. Families attending psycho-education workshops identified problems faced in managing their family member's illness. Composite lists of problems generated by 175 participants were categorized and sorted, using previously established methods for determining reliability and validity. Fourteen categories were identified for children and fifteen for adults, with ten overlapping. Family members attending the child-focused workshops more often listed mood symptoms and problem behaviors. Family members attending the adult-focused workshops more often listed family issues, denial and noncompliance, and positive symptoms of psychosis. Problems identified by families with a child coping with SED/BD may be sufficiently distinct from those of families with an adult coping with mental illness to warrant separate and distinct interventions.

Social workers' participation in the resolution of ethical dilemmas in hospice care.

Ethical dilemmas are inherent in every health care setting. A sample of hospice social workers with no direct access to a hospice ethics committee (N = 110) was surveyed regarding ethical issues in hospice care, how the issues were managed, and the extent to which social workers participated in resolution of ethical dilemmas. Common issues discussed were the patients' medical condition, involvement of family, and family denial of terminal illness. Difficult cases were discussed most often in interdisciplinary team meetings. Social workers were most involved in traditional social work activities, such as providing knowledge of community resources and patients' psychosocial histories and promoting self-determination in policies.

Trichotillomania. Presentation, etiology, diagnosis and therapy.

Trichotillomania (TTM) is an impulse disorder, in which patients chronically pull hair from the scalp and/or other sites. Very early onset of hair pulling in children under the age of 6 may be more benign and self-limiting than the more common syndrome of late childhood onset hair pulling. While far more women and adolescent girls appear for treatment, survey studies suggest chronic hair pulling also occurs in males. Diagnosis may be complicated by patient and family denial or ignorance of the hair pulling; accurate scalp examination and biopsy can be critical. Classic scalp biopsies for TTM feature trichomalacia, pigment clumps, peribulbar hemorrhage and hair canal pigment casts, and lack lymphocytic infiltrates seen in alopecia areata. Treatment is difficult: the tricyclic antidepressant clomipramine is the most promising agent, although many patients find it difficult to tolerate at adequate dosages, and treatment response may not be maintained over the long term. More benign medications have not demonstrated efficacy in controlled studies. Augmentation with topical preparations or psychotropic medications may be helpful for patients experiencing limited efficacy or relapse. Specialized psychotherapy, known as habit reversal training, is highly recommended; however, the treatment is intensive and highly specialized. Skilled therapists are difficult to locate.