scholarly journals Sex Disparities in Organ Donation: Finding an Equitable Donor Pool

2021 ◽  
Author(s):  
Erika Yee ◽  
Seyedeh Maryam Hosseini ◽  
Bianca Duarte ◽  
Shannon M. Knapp ◽  
Molly Carnes ◽  
...  
Keyword(s):  
Organ Donation ◽  
Family Member ◽  
Family Members ◽  
Survey Study ◽  
Organ Donors ◽  
Donor Pool ◽  
Willingness To Donate ◽  
Study Results ◽  
The Family ◽  
Sex Disparities

Background The majority of living organ donors are women, but few are deceased organ donors, which increases risks associated with sex mismatched organs. We sought to identify reasons for sex disparities in organ donation and strategies for equity. Methods and Results Using Amazon's Mechanical Turk, we examined US adults' perceptions regarding donation in a mixed‐methods survey study. Results were compared by sex with Fisher's exact test and T‐tests for quantitative results and qualitative descriptive analyses for write‐in responses. Among 667 participants (55% women), the majority of men (64.8%) and women (63.4%) self‐identified as registered donors. Women's willingness to donate their own organs to family members ( P =0.03) or strangers ( P =0.03) was significantly higher than men. Donors from both sexes were guided by: desire to help, personal experience, and believing organs would be useless to deceased donors. Non‐donors from both sexes were guided by: no reason, medical mistrust, contemplating donation. When considering whether to donate organs of a deceased family member, women were equally guided by a family member's wishes and believing the family member had no further use for organs. Men had similar themes but valued the family member's wishes more. Among non‐donors, both sexes would consider donation if more information was provided. Conclusions In a national survey, both sexes had similar reasons for becoming and not becoming an organ donor. However, compared with men, women were more willing to donate their organs to family members and strangers. Improving education and communicating wishes regarding organ donation with direct relatives may increase sex equity in deceased organ donation.

Abstract 16: Sex Disparities in Organ Donation: Finding an Equal Donor Pool

2020 ◽  
Vol 13 (Suppl_1) ◽  
Author(s):  
Erika Yee ◽  
Seyedeh Maryam Hosseini ◽  
Bianca Duarte ◽  
Shannon Knapp ◽  
Nancy K Sweitzer ◽  
...  
Keyword(s):  
Organ Donation ◽  
Family Member ◽  
Family Members ◽  
Organ Donor ◽  
Medical Mistrust ◽  
Organ Donors ◽  
Donor Pool ◽  
Men And Women ◽  
Willingness To Donate ◽  
Amazon's Mechanical Turk

Introduction: The majority of living organ donors are women, and the majority of deceased organ donors are men. This poses a problem for transplant candidates who have worsened survival with sex mismatched organs. The objective of this study was to identify reasons for disparities in organ donation between sexes and identify strategies to increase organ donors. Methods: We conducted a fifteen question survey using a crowdsourcing marketplace, Amazon’s Mechanical Turk, in September 2019. The survey assessed how participants make decisions about becoming an organ donor. The survey was distributed to U.S. adult participants, including eight write-in questions and two Likert scale questions. Qualitative descriptive analyses were used to understand reasons for and against becoming an organ donor. Quantitative results were compared with t test. Results: Among the 667 eligible participants representing 49 states, 54.9% were women and 63.1% were in the 18-40 age group. The majority of men (64.8%) and women (63.4%) were registered organ donors. Among men and women donors, three themes guided their willingness to donate: desire to help others, personal experience with organ donors/recipients, and believing organs would have no use to the donor once dead. Among men and women non-donors, decisions were guided by three themes: no reason, medical mistrust, considering becoming a donor. Themes varied by sex when considering whether to donate organs of a deceased family member. Women were guided equally by two themes: family member’s wishes and believing the deceased family member had no further use for organs. Men had similar themes but valued the family member’s wishes more. Women’s willingness to donate their own organs to family members (p=0.03) and strangers (p=0.02) was significantly higher than men. Among non-donors, both sexes would consider becoming organ donors if more information was provided. Conclusion: In a national survey of adults, women and men had similar reasons for becoming and not becoming an organ donor. However compared to men, women were more willing to donate their organs and more altruistic in the donation of family members’ organs. Women’s deceased organ donation may increase with further communication of women’s wishes before death and by improved public education about organ donation.

A Study on the Impact of Chinese Family Culture on Citizens' Voluntary Organ Donation

2020 ◽  
Author(s):  
Aijing Luo ◽  
Haiyan He ◽  
Wenzhao Xie ◽  
Zehua Xu ◽  
Wei Ouyang ◽  
...  
Keyword(s):  
Organ Donation ◽  
Family Members ◽  
Chinese Family ◽  
Family Culture ◽  
Willingness To Donate ◽  
Culture Model ◽  
The Family ◽  
Culture Models ◽  
Social And Cultural Factors ◽  
The Impact

Abstract Objectives: Family members’ attitude is the key factor in organ donation. This study aimed to analyze the attitude and willingness of families towards organ donation and to explore the impact of Chinese family culture on voluntary organ donation.Methods: Taking the family as a unit, a total of 15 families (59 family members) were interviewed using the semi-structured interviews.Results: Among the 59 participants, 58 had heard of organ donation, 30 were unwilling to donate organs, 25 had an intention to donate, and 13 were very taboo about it. 29 weren’t giving consent for family members’ donation, only 8 supported families to sign up as donors. Particularly, 7 participants could donate their organs but wouldn’t donate organs of family members. The family culture models were divided into the patriarchal family culture model (4 families), independent family culture model (8 families), patriarchal subversion family culture model (3 families). Based on the influence of social and cultural factors (taking national policy as an example) on the willingness to donate organs of relatives, the family culture models were divided into the stubborn family culture model (3 families), swing family culture model(9 families), and selfless dedication family culture model(3 families). Conclusions: Organ donation is still a taboo topic in Chinese families. Although the patriarchal family cultural model is no longer dominant, the father's thoughts and views still play an essential role in the whole family. Most families belong to the swing family culture model, and the willingness to donate is greatly influenced by social and cultural factors.

scholarly journals Reluctance and willingness for organ donation after death among the Slovene general population

2019 ◽  
Vol 58 (4) ◽  
pp. 155-163
Author(s):  
Nejc Berzelak ◽  
Danica Avsec ◽  
Tanja Kamin
Keyword(s):  
Organ Donation ◽  
Large Scale ◽  
Family Members ◽  
Group Differences ◽  
Organ Donors ◽  
Post Mortem ◽  
Face To Face ◽  
Slovenian Population ◽  
Attitudinal Factors ◽  
Willingness To Donate

Abstract Introduction The paper presents the findings of the first large-scale survey on post-mortem organ donation among the general Slovenian population. It focuses on the reported donation willingness, the barriers to joining the register of organ donors and the position towards consent to donate organs of deceased relatives. Methods A face-to-face survey was conducted on a probability sample of 1,076 Slovenian residents between October and December 2017. The performed analyses included estimations of means and proportions for target variables, an evaluation of between-group differences and a partial proportional odds model to study the relations between organ donation willingness and socio-demographic characteristics. Results The mean reported willingness to donate one’s own organs after death was 3.77 on a 5-point scale, with less than a third of respondents claiming to be certainly willing. Only 6% of those at least tentatively willing to donate organs were certain to join the register of organ donors in the future. The most frequently reported barriers to registration were unfamiliarity with the procedure and a lack of considering it beforehand. The reported willingness to donate organs of a deceased relative strongly depended on the knowledge of the relative’s wishes, yet 80% of the respondents did not discuss their wishes with any family members. Conclusions The findings confirm the gap between the reported donation willingness and joining the register of donors. Future post-mortem organ donation strategies need to consider socio-demographic and attitudinal factors of donation willingness and help stimulate the communication about organ donation wishes between family members.

scholarly journals Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Susanne A. Elsner ◽  
Sam S. Salek ◽  
Andrew Y. Finlay ◽  
Anna Hagemeier ◽  
Catherine J. Bottomley ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Family Member ◽  
Internal Consistency ◽  
Outcome Measure ◽  
Test Validity ◽  
Family Members ◽  
German Version ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

scholarly journals Durable Relationship and Family Members “by Analogy” in the European Union

2018 ◽  
Vol 10 (4) ◽  
pp. 175
Author(s):  
Tanel Feldman ◽  
Marco Mazzeschi
Keyword(s):  
Member State ◽  
Family Member ◽  
Family Members ◽  
The European Union ◽  
Member States ◽  
Registered Partnership ◽  
The Family ◽  
Definition Of ◽  
Union Citizen ◽  
The Eu

Rights of residence derived from a durable relationship with an EU citizen, are left to a relatively wide discretion of the Member States. Pursuant to Article 2.2 (b) Directive 2004/38/EC (“Directive”), “the partner with whom the Union citizen has contracted a registered partnership, on the basis of the legislation of a Member State, if the legislation of the host Member State treats registered partnerships as equivalent to marriage and in accordance with the conditions laid down in the relevant legislation of the host Member State” qualifies as family member. Provided that they have a durable relationship (duly attested) with an EU citizen, pursuant to Article 3.2(b), unregistered partners are as well beneficiaries of the Directive. The durable relationship was expressly excluded from the scope of Article 2(2)(b): “Unlike the amended proposal, it does not cover de facto durable relationships” (EU Commission, Document 52003SC1293). Article 3 (2)(a) covers “other family members” (no restrictions as to the degree of relatedness) if material support is provided by the EU citizen or by his partner or where serious health grounds strictly require the personal care of the family member by the Union citizen. Pursuant to Article 3.2, “other family members” and unregistered partners can attest a durable relationship, must be facilitated entry and residence, in accordance to the host Member State’s national legislation. In the light of Preamble 6 Directive, the situation of the persons who are not included in the definition of family members, must be considered “in order to maintain the unity of the family in a broader sense”. The questions discussed in this paper are the following: (i) are Member States genuinely considering the concept of durable relationship in view of maintaining the unity of the family in a broader sense? and (ii) how to overcome legal uncertainty and which criteria, both at EU and at international level, can be taken into account in order to assess whether a durable relationship is genuine and should be granted the rights set forth by the Directive?

scholarly journals Study of Mental Health Status of the Family Members of Disappeared Persons of Kashmir

2015 ◽  
Vol 3 (1) ◽  
Author(s):  
Suhail Ahmad Bhat ◽  
Dr. Shawkat Ahmad Shah
Keyword(s):  
Mental Health ◽  
Family Member ◽  
Family Members ◽  
Family Type ◽  
Emotional Control ◽  
Normal Person ◽  
Frequency Method ◽  
Significant Difference ◽  
The Family ◽  
Anxiety Depression

While trying to portray the picture of mayhem and woes of family members of those who disappeared, it fails to fully convey the agony of the survivors. Their emotions are so intense that a normal person can hardly help his emotional shutters. Even a single experience with a family member of a disappeared person makes one to ponder that how unbearable it is to be a mother, father, wife or son of disappeared person. Their search for the disappeared family member along with hardships of daily life, social stigmas, economic and educational needs have left their mental health par below average level. One finds the words of depression, stress, anxiety, sleeplessness and melancholy in their everyday lexicon. With such a despondent picture of family members of disappeared persons in mind, the present attempt was made to study the nature of their mental health. To achieve this objective, data was collected from 217 family members of disappeared persons of Kashmir. The frequency method and t-test were used to obtain the results. The results of the study showed that majority of the family members scored high in negative dimensions of mental health namely, anxiety, depression and loss of behavioral and emotional control and low in positive dimensions of mental health namely, general positive affect, emotional ties and life satisfaction. A significant difference was found in mental health on the basis of gender, age and family type.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

How Substance Problems Affect the Family Unit

2019 ◽  
pp. 72-78
Author(s):  
Dennis C. Daley ◽  
Antoine Douaihy
Keyword(s):  
Family Member ◽  
Family Life ◽  
Family Members ◽  
Emotional Pain ◽  
Loved One ◽  
Family Unit ◽  
The Family

A family unit is a system in which various parts have an impact on other parts. This chapter looks at how families, concerned others, and friends are affected by a loved one’s SUD. Any family member may be hurt by a loved one with an SUD. The effects may vary among families and among members within the same family, but emotional pain and disruption of family life are common. Attention often centers on the member with the SUD, while overall family pain and distress are ignored. Individuals with SUDs often “underfunction,” which means that other members of the family have to pick up the slack and “overfunction.” This dynamic may change how family members communicate or relate to one another. The effects on families vary from mild to severe—in which a family is torn apart by an SUD.

Trauma Patients’ Attitudes toward Organ Donation at an Urban Level I Trauma Center

2018 ◽  
Vol 84 (9) ◽  
pp. 1493-1497
Author(s):  
John D. Cull ◽  
Katarina Ivkovic ◽  
Benjamin Manning ◽  
Edie Y. Chan
Keyword(s):  
United States ◽  
Organ Donation ◽  
Trauma Center ◽  
Family Members ◽  
Organ Donor ◽  
The United States ◽  
Trauma Patients ◽  
Willingness To Donate ◽  
Patient Responses ◽  
Level I

Many health-care workers (HCWs) surveyed at a trauma center believed their patients distrusted the organ allocation system. This study compares urban trauma patients’ (TPs) attitudes toward organ donation with attitudes from the 2012 National Survey of Organ Donation Attitudes (NSODA). TPs presenting to the trauma clinic between September 2014 and August 2015 were surveyed. Patient responses were compared with the 2012 NSODA. One hundred and thirty-three TPs (95.0%) responded to the survey. Compared with the 2012 NSODA, groups were similar with regard to a patient's desire for OD after death (Trauma: 62.4% [Confidence interval [CI]: 53.6–70.7] vs NSODA: 59.3% [CI: 56.6–61.8]) and the belief that doctors are less likely to save their life if they are an organ donor (24.8% [CI: 17.7–33.0] vs 19.6% [CI: 18.3–21.0]). Approximately, 30 per cent of patients believed discrimination prevented minority patients from receiving transplants (27.1 [CI: 19.7–35.5] vs 30.3 [CI: 28.8–31.9]). TPs were less likely than the NSODA group to donate a family members’ organs, if they did not know the family members’ wishes (56.4% [CI: 47.5–65.0] vs 75.6% [CI: 68.7–71.8]); TPs were less likely to believe the United States transplant system uses a fair approach to distribute organs (47.4% [38.7–56.2] vs 64.6% [CI: 63.0–66.2]). Adjusting for race, both groups were similar in their willingness to donate a family members’ organs; black TPs were less likely to believe the United States transplant system, which follows a fair approach in distributing organs (43.0% [CI: 32.4–54.2] vs 63.7% [59.7–67.6]). Despite HCWs perceptions, TPs had a positive view of OD. Educating HCWs on patient attitudes toward OD may decrease institutional barriers to OD.

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