Family-centered Decision Research Articles

Experiences of Indonesian women with breast cancer underwent treatment decision-making: A qualitative study.

Patients with breast cancer face a complex situation upon receiving their diagnosis and considering future treatment options. In Indonesian culture, relatives and others significantly influence decision-making processes. Understanding the perspectives of Indonesian women with breast cancer regarding treatment decision-making can enhance satisfaction with the care provided. This study aimed to explore the experiences of Indonesian women with breast cancer regarding treatment decision-making. A qualitative descriptive study design was utilized. Purposive sampling was employed to select the study participants. In-depth interviews were conducted with 15 women with breast cancer between March and June 2023. The data were analyzed using thematic analysis. Three main themes were developed: 1) Emotional impact and uncertainty in cancer care, 2) Clear communication and support for patients, and 3) Family-centered decision-making in treatment planning. This study highlights the perspectives of Indonesian women with breast cancer on treatment decision-making. Nurses play a crucial role in providing clear information to patients and their families during the decision-making process. Understanding the experiences of women with breast cancer can help support and empower patients through effective communication while they undergo treatment.

Development and Evaluation of a Web-Based Family-Centered Decision Support Tool About Firearm Storage.

Many youth in the USA have access to a loaded and unlocked firearm in their home. Discussions between adult family members have the potential to positively influence firearm storage. Work with firearm-owning parents to develop and obtain preliminary data about the efficacy of a family-centered decision support tool about firearm storage. We adapted the Ottawa Personal Decision Guide for Two to the issue of firearm storage, producing the Family Safety Check-In. Subsequently, we evaluated its acceptability and impact on intentions to make a plan with their partner (or other adult sharing parental duties) about safer firearm storage. Participants were parents/guardians of at least one school-aged child, had firearms in their home, and resided in the USA (n = 402). They completed a web-based pre-test survey, were randomized to the Family Safety Check-In or an American Academy of Pediatrics (AAP) informational resource about firearm storage for families, and then completed a post-test survey. The Family Safety Check-In had higher ratings for acceptability (B = 1.24, 95% CI = 0.58-1.90) and appropriateness (B = 1.46, 95% CI = 0.72-2.19) than the AAP resource. Participants in the Family Safety Check-In condition also had greater intentions to make a plan with their partner about storing firearms more safely (OR = 1.90, 95% CI = 1.26-2.87). The Family Safety Check-In is a promising direction for harm reduction that warrants further evaluation.

Family-centered decision making: A culturally responsive collaborative approach among Asians living in the United States.

Compared to Western cultures, self-determination needs are expressed and pursued differently in Asian cultures, where interdependence and achieving greater good for the group are prioritized. To accommodate these needs, we propose the use of family-centered decision making (FCDM) to complement the shared decision-making (SDM) practice, fostering collaborative psychiatric care for Asian individuals residing in the United States. This article synthesizes various literature to outline the similarities and differences between SDM and FCDM, discuss implementation steps, challenges associated with implementation, potential solutions, and future research considerations. Our review suggests that FCDM is more responsive to and inclusive of Asian cultural experience, better reflecting these cultures' expression of self-determination. We propose a five-step framework for FCDM implementation in psychiatric rehabilitation for Asian and Asian American individuals, while identifying three further practical considerations: logistical difficulties, intrafamilial differences, and making the decision to use FCDM or not. Given the heterogeneity of Asian individuals in the United States, we urge providers to allow flexibility in practicing FCDM. We outline the important components for providers to help individuals with psychiatric disabilities distinguish between the characteristics of FCDM and SDM, evaluate the potential pros and cons of utilizing FCDM, and then initiate FCDM if appropriate or requested by the individuals. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Real-world experience implementing Advance Care Planning in the Asia-Pacific: ACP in Japan

Promoting Advance Care Planning (ACP) in the super-aged society of Japan has become increasingly important for supporting older adults to continue to live in the community until the end of life. To promote ACP further in Japan, Japanese family-centered decision-making and high-context culture need to be taken into account. Therefore, we describe the environmental and historical backgrounds surrounding ACP in Japan, and based on the results, introduce research and education programs regarding its implementation.

SUPPORTING FAMILY CAREGIVING FOR PERSONS WITH DEMENTIA FROM CULTURAL AND LIFE-COURSE PERSPECTIVES

Abstract Providing person-centered and culturally sensitive support for persons with dementia and their family caregivers is critically important. This symposium focuses on understanding and supporting decision-making and family caregiving through a lens of a life course perspective. The first study explored Black and White family caregivers’ experience of adjusting to their new role as caregivers of persons with dementia during the COVID-19 pandemic. The pandemic added to the complexity of their challenges and demonstrated the need for person-centered support. The second study provided insights into Chinese American family caregivers’ attitudes toward and the preference of shared family decision-making on tube feeding for their family members with dementia. Almost all the participants considered pain and discomfort relief as a priority in decision making. The third study synthesized the literature on decision aid interventions for family caregivers of older adults with advanced dementia regarding tube feeding. The study found that culturally sensitive and family-centered decision aid interventions are needed to support the decision-making of tube feeding. The fourth study used data from two national databases and identified positive aspects of caregiving. It highlighted the significance of tailoring support for family caregivers based on their caregiving responsibilities and care recipients’ cognitive status to enhance the positive aspects of caregiving. The last scoping review identified and synthesized existing technology-based interventions to address social isolation and loneliness among informal dementia caregivers. The results suggested that technology-based interventions could reduce feelings of loneliness and improve caregiver well-being.

Ethical Healthcare Attitudes of Japanese Citizens and Physicians: Patient-Centered or Family-Centered?

Background In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence moral decision-making. Therefore, this study examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined. Methods Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes. Results Approximately, 95% of physicians were patient-centered in explaining the patient’s severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient’s wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions. Conclusions In relatively low-conflict situations, such as the announcement of a patient’s medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice.

Culturally Adapted Consensus Definition and Action Guideline: Japan's Advance Care Planning.

A conceptual framework for advance care planning is lacking in societies like Japan's valuing family-centered decision-making. A consensus definition of advance care planning with action guideline adapted to Japanese society. We conducted a multidisciplinary modified Delphi study 2020-2022. Thirty physicians, 10 healthcare and bioethics researchers, six nurses, three patient care managers, three medical social workers, three law experts, and a chaplain evaluated, in 7 rounds (including two web-based surveys where the consensus level was defined as ratings by ≥70% of panelists of 7-9 on a nine-point Likert scale), brief sentences delineating the definition, scope, subjects, and action guideline for advance care planning in Japan. The resulting 29-item set attained the target consensus level, with 72%-96% of item ratings 7-9. Advance care planning was defined as "an individual's thinking about and discussing with their family and other people close to them, with the support as necessary of healthcare providers who have established a trusting relationship with them, preparations for the future, including the way of life and medical treatment and care that they wish to have in the future." This definition/action guideline specifically included support for individuals hesitant to express opinions to develop and express preparations for the future. Adaptation of advance care planning to Japanese culture by consciously enhancing and supporting individuals' autonomous decision-making may facilitate its spread and establishment in Japan and other societies with family-centered decision-making cultures.

Making the case for multidisciplinary pediatric aerodigestive programs.

Multidisciplinary pediatric aerodigestive centers have been proposed to address the needs of children with complex multi-system problems affecting the respiratory and upper gastrointestinal tracts. The setup of a multidisciplinary service allows for the complex coordination needed between different subspecialties. This allows for rapid communication and family-centered decision making and agreement on further diagnostic and/or therapeutic next steps such as offering triple endoscopy when indicated. Triple endoscopy entails performing rigid upper airway assessment, flexible bronchoscopy and upper gastrointestinal endoscopy and has been linked to reduced time to diagnosis/treatment, reduced costs and anesthesia exposure. This review summarizes the available literature on the structure and benefits of multidisciplinary pediatric aerodigestive services.

Decisional needs of patients with recurrent high-grade glioma and their families.

BackgroundHigh-grade gliomas are aggressive and life-threatening brain tumors. At the time of recurrence, the patients and their families need to decide on future treatment. None of the treatment options are curative, and tradeoffs between benefits and harms must be made. This study aimed to explore the patients’ and family members’ decisional needs when making the decision.MethodsWe performed semi-structured individual interviews with patients and family members to explore their experiences during the decision making. A phenomenological hermeneutical analysis was conducted.ResultsA total of 15 patients and 14 family members aged 22-79 years participated in the study. Most of the family members were partners to the patient. The findings were centered around three interrelated and concurrently occurring themes: (I) A patient- and family-centered decision making, including the subtheme of being a supportive family member; (II) Balanced information and a trustful professional encounter; and (III) The value of hope. We found that both the patients and family members preferred to be involved in the decision making and that a trustful relationship with the surgeon, balanced and tailored information, and sufficient time to make the decision were essential. The experience of hope had a significant influence on patients’ decisions.ConclusionThis study found that patient and family involvement, balanced information, and hope were the primary decisional needs of patients and family members at the time of recurrent high-grade glioma. Patients and family members can have different decisional needs, making individual needs assessment essential to decisional support.

Culture Differences in Advance Care Planning and Implications for Social Work Practice

Advance care planning (ACP) is the process of making plans and decisions regarding end-of-life care (EOLC) in advance while one has the physical and cognitive capacity to do so. However, even if health practitioners recognize the importance of ACP, they may be constrained by social and cultural factors in engaging their clients in ACP. This study examined cultural differences in ACP and various strategies that social workers use to initiate conversations on ACP in a range of settings. Using the case study method, we conducted in-depth interviews with 7 social workers who work in South Korea, 2 Korean-American social workers working in the Korean-American communities in the US, and 3 American social workers serving diverse populations in the US. Their practice sites include: university hospitals, day care centers, a community senior center, a nursing home, and a hospice agency. Social workers in both countries emphasized the need to build rapport with their clients early on and to empower them to take the lead in their ACP while they were still healthy. In Korean and Korean-American communities, social workers recognized their clients’ reluctance to speak about EOLC and highlighted the importance of communicating with their family due to their clients’ preference for family-centered decision-making. When doing this, a step-by-step approach in giving relevant information was recommended. We identified relationship-building, empowerment, and culturally sensitive approaches as common strategies in initiating discussions on ACP in both countries.

Navigating Evolving Ethical Questions in Decision Making for Gender-Affirming Medical Care for Adolescents

As more young people feel safe to outwardly identify as transgender or gender expansive (TGE), meaning that their gender identity does not align with the sex they were assigned at birth, an increasing number of youth who identify as TGE seek gender-affirming medical care (GAMC). GAMC raises a number of ethical questions, such as the capacity of a minor to assent or consent, the role of parents or legal guardians in decisions about treatment, and implications for equitable access to care when differing parental or custodial viewpoints are present. These questions are further complicated by the difficulties in explaining the limits of long-term research in GAMC, with regard to the preservation of fertility, for example. We present two de-identified composite case studies to highlight dilemmas that may arise and offer recommendations to better support patient- and family-centered decision making for GAMC. These include employing a multidisciplinary shared decision-making approach, disentangling informed consent and assent from chronological age, developing a consistent approach to the assessment of decisional capacity, and developing age-appropriate informational materials.

Family members’ attitudes towards disclosure of cancer diagnosis to patients in China.

12131 Background: Informed consent is very important aspect of treatment, in western countries, a diagnosis of malignancy should be delivered the paient directly. It was the decision of the patient for further disclosure. However, in China, people are always family centered decision making, a diagnosis of cancer is traditionally delivered to the family members, with a protective assumption. We used anonymized questionnaire to investigate the attitude of Chinese people towards to cancer diagnosis disclosure and correlated factors. Methods: This is a survey study conducted by a web system named “Wenjuan Xing”. The study questionnaires were designed in dual English and Chinese. answered by the same person. The regarding questions that answered by the same person are as following: “If your close family member is diagnosed with a malignant tumor, would you like to tell him the truth?”, “If yes/no, what’s your reason?”. Demographic information include gender, age, economic status, education level, health condition, residential region, occupation, nationality and major reasons. The survey link was placed on Wechat contact of these investigators, social media and also distributed in Oncology Center of a general hospital in Mainland China. The answers of the questions were captured directly online, data can also be exported into excel format for compiled analysis. Results: A total of 1470 people completed the survey questions from January to July 2020. The potential factors which influence disclosing diagnosis were registered, 1041 (70.8%) family members are in favor of informing the diagnosis to patients, 429 (29.2%) are not. The main reasons for disclosure diagnosis are ‘it is his or her life, he/she has to be in control’ (N=832) and she or he can plan his/her remaining life and leave the world with no regret (N=588). The famliy member who hide the diagnosis worry that paitents could not handle the stress would have poor quality of life (N=295) and die faster(N=323). 1425(96.9%) people want to know the diagnosis if they have a malignanti tumor, while 45 (3.1%) don’t want to know.The univariate analysis revealed educational level, health condition and residential region are correlated to disclosing diagnosis. The logistic regression anaylsis show a significant effort to disclosing diagnosis(OR= 1.9, 95% CI (1.4, 2.7) P<0.001).Interaction and stratified analyses were conducted according to education level and redidential region (P interaction= 0.0406). In the high education level group, people who live in other countries(America, Europe) (P=0.009 OR=29.7 CI 2.3-375.7) more likely to disclose the diagnosis compared to mainland in China. Conclusions: The majority of Chinese people want to know the diagnosis. People who have higher education level and live in western countries more likely prefer disclosure of diagnosis to patients.

The Information Needs of Chinese Family members of Cancer Patients in the Online Health Community: What and Why?

Meeting the information needs of cancer patients’ family members is critical for improving care quality and family members’ well-being. An online health community (OHC) can be an effective channel to provide information support, thus attracting many cancer patients’ family members. Several studies have examined the information needs of cancer patients’ family members in OHCs. However, most of them only focused on health-related information needs for improving patients’ physical well-being and did not consider the context of information seeking. Furthermore, most of these studies were conducted in Western countries; thus, their findings may not be generalizable to Chinese culture that emphasizes family-centered decision-making, protection of family members toward the patients, and collectivism.In this study, we investigated what kinds of information Chinese family members of cancer patients seek in the OHC and why they seek them. Hence, we analyzed 8,334 messages for information seeking posted by 2,788 family members in one of the most significant Chinese online cancer communities. Stressful events that trigger information needs were also identified for further studying the context of information needs. Based on qualitative content analysis, we discussed the information needs of cancer patients’ family members in the OHC and the potential impacts of Chinese culture on family members’ information needs. Furthermore, the results confirmed that information seeking could be a method to help family members of cancer patients cope with stressful events in the journey of cancer.

Family-Centered Decision Making for East Asian Adults With Mental Illness.

Self-determination is a critical element of shared decision making among people recovering from mental illness. However, shared decision making between the patient and caregiver may not align with the accepted values of East Asian communities. Family-centered decision making may be considered a more adaptive approach for use among East Asian service users and their mental health care providers.

Toma de decisiones centradas en la familia en la enfermedad renal crónica avanzada. De la autonomía individual a la autonomía familiar o comunitaria

The increase in the incidence and prevalence rate of Chronic Kidney Disease poses challenges and ethical dilemmas that patients, family members and health professionals must face daily. The objective of this article is to present a reflection on the way in which patients make recourse to third parties as participants in their decision-making, which would require an approach based on solidarity autonomy. The analysis of twelve semi-structured interviews conducted with patients 60 years of age and older, from different programs of the Nephrology Unit of the Hospital Universitario San Ignacio in the period 2017-2018 Colombia, is presented. This article proposes the need for family-centered decision making of patients with chronic diseases, before their state is advanced and states of unconsciousness prevent their self-determination, considering the social determination of autonomy.

How Psychosocial Factors Contribute to Japanese Older Adults' Initiation of Advance Care Planning Discussions: A Qualitative Study.

Objectives: This study aimed to reveal the features of older adults' advance care planning (ACP) discussions by identifying psychosocial factors related to their discussions in Japan, where people value family-centered decision making. Methods: A qualitative study using in-depth interviews was conducted with 39 participants (aged ≥65 years) recruited from the outpatient department of a community hospital in Fukushima, Japan. Data were analyzed using the grounded theory approach. Results: Through experiences of family caregiving, participants became aware of their own feelings about the end of life. Equal relationship with family members was important for lowering the threshold for having discussions. Some participants and their families in the same generation reached agreements on ACP; however, they were willing to yield to children's decision making despite these discussions. Discussions: These findings provide insights into the psychosocial factors in relation to ACP discussions and support for the role of ACP discussions in the family-centered decision-making culture.

UNDERSTANDING BARRIERS TO PALLIATIVE CARE USE AMONG ASIAN AMERICANS: A SYSTEMATIC REVIEW

Despite the well-documented clinical and public health impacts of palliative care on older patients’ end of life experiences, racial and ethnic disparities in palliative care use still remain. However, empirical evidence on the sources of disparities is lacking, particularly for Asian Americans. Given the rapid growth and increasing cultural diversity of the older Asian population in the United States, a systematic review was conducted to provide a comprehensive overview of the best available evidence on the barriers to palliative care use among Asian Americans. Search was conducted using six electronic databases (PubMed, CINAHL, PsycINFO, EMBASE, Cochrane Library, and Google Scholar), and all procedures of the study have been guided by Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols (PRISMA-P). A total of 23 studies published in the U.S. since 1998 were included. Individual level barriers to palliative care service use among Asian Americans identified by the study included lack of palliative care knowledge, lack of insurance, cultural beliefs, language barrier, attitude toward death, family centered decision-making. Provider level barriers included lack of training and experience about palliative care, patient-provider discordance in language and culture, and absence of policy or guidance for providers. Although racial disparities in palliative care for Asian Americans were evident, Asian Americans were underrepresented in palliative research. Future research effort should be directed toward the development of culturally sensitive palliative care services and policies that reduce racial and ethnic specific barriers.

Management Strategies during a VA ECMO Run in a Neonate with E. Coli Septic Shock Masquerading as Hypoxic Ischemic Encephalopathy

Advances in neonatal care for hypoxic respiratory failure, with high-frequency ventilation and inhaled nitric oxide, have led to a decreased need for extracorporeal membrane oxygenation (ECMO). However, neonates resistant to such therapies are more complex and at higher risk of mortality. One such population includes those with hypoxic ischemic encephalopathy (HIE) undergoing controlled hypothermia (CH). We present a challenging case of a full-term neonate with inotrope-resistant Escherichia coli septic shock, profound coagulopathy, hypoxic respiratory failure, and HIE requiring CH and venoarterial (VA) ECMO. We illustrate that family-centered decision-making, ECMO, primary team, and subspecialist support is critical to success. In addition, we share the strategic medical interventions concomitantly used with VA ECMO to aid in the survival of this high-risk infant such as continuous veno-venous hemofiltration with AN69 membrane for cytokine and fluid removal, prostaglandin use to relieve right ventricular strain in malignant pulmonary hypertension, and cautious use of bronchoscopy to assist in lung recruitment.

Teaching and evaluating interprofessional teamwork using sequenced instruction and TeamSTEPPS™ Team Performance Observation Tool (TPOT)

Abstract This paper describes a semester-long interprofessional education (IPE) program focused on teaching health care students the knowledge and competencies needed to provide patient-centered collaborative care through a sequence of learning activities. To strengthen and expand IPE efforts at a large Midwestern university, graduate physical therapy, occupational therapy, and nurse practitioner students were enrolled in a one credit hour revised course on interprofessional case management. Students completed five sessions of coursework in which they studied pre-session online modules to acquire knowledge about provider roles and interprofessional communication, practiced conducting patient interviews and peer-teaching through student-led role plays, and worked in interprofessional teams on an unfolding patient case study, facilitated by faculty. At the end of the course, students were asked to self-rate and reflect on their team's performance for leadership, team structure, situation monitoring, mutual support and communication using 16 items from the TeamSTEPPS™ Team Performance Observation Tool (TPOT). Of 98 students enrolled in the course, 63 participated in the study (64.3% response rate). Students assessed all subscales, as well as the overall team performance, very positively with mean values above 4.5 on a scale with values from 1 (strongly disagree) to 5 (strongly agree); however, non-Caucasian students rated two subscales (situation monitoring and mutual support) significantly lower than Caucasian students. Student reflections emphasized patient-centeredness, respect for the other disciplines, and family-centered decision-making. Positive quantitative and qualitative results demonstrate a promising model for teaching the knowledge and skills health profession students need to provide interprofessional health care.

Comparing Chinese and European American mental health decision making

Background: Shared decision making (SDM) tends to reflect more Western values of individualism and empowerment, values that may be foreign to East Asian healthcare preferences for collectivism and family involvement: family centered decision making (FCDM).Aims: To show that Chinese will be more likely to believe FCDM would be more pleasing for them if they were the patient. Conversely, European Americans will respond more favorably to SDM. To examine effects of Western acculturation on FCDM compared to SDM.Method: In this study, preferences for FCDM versus SDM and doctor-led decision making (DrDM) were examined in a vignette study completed online by European Americans (n = 298) and Chinese (n = 327). Research participants read a vignette about Lily (a depression patient) presenting with symptoms of depression. After reading the vignette, participants completed items representing two sets of outcomes: three perceptions of impact on Lily and how participants might respond for themselves in a similar decision making situation.Results: Chinese rated FCDM greater than European and Chinese Americans. Chinese Americans mostly responded similar to European Americans and not Chinese.Conclusion: European Americans prefer SDM more for mental health services. Chinese value FCDM more than European Americans. Preferences of Chinese living in America seem to parallel European Americans.