Personal Life Goals Research Articles

Abstract C005: Predictors of advance care planning documentation in female patients with breast cancer: A multilevel model analysis

Abstract Background: Advance care planning (ACP) is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. Likewise, ACP is associated with multiple benefits, such as lower rates of hospitalizations and reduced futile, aggressive cancer treatment at the end of life. However, ACP rates remain low in the U.S., especially for patients with advanced cancer. Despite being more likely to be diagnosed at advanced stages and hospitalized due to advanced cancer with poor prognosis, the Black and Hispanic/Latino populations continue to have meager rates of ACP. Research has shown that both individual-level and systems-level factors contribute to these racial disparities in ACP. Considering these disparities among vulnerable populations, interventions that increase ACP among minority patients with cancer are needed. Objective: To analyze using multilevel model analysis the predictors of ACP documentation in female patients with breast cancer over 5 years in the UChicago Health System. Methods: Using the Clinical Data Research Warehouse, this study included women diagnosed with breast cancer (N=7,814) from 2016 to 2021. Descriptive statistics were performed to characterize ACP, and potential differences in ACP rates among control variables were assessed using odds ratio (OR) estimations. Significantly correlated variables were included as covariates in the multivariate analyses through a logistic regression model. The multilevel random-effects (mixed-effects) model, using restricted maximum likelihood estimation, examined the pattern of ACP documentation; in the multilevel model, level 1 modeled the changes in individual ACP documentation, and level 2 included the between-subjects effects of the predictors of documentation. Results: 13.76% of women with breast cancer filled out at least one type of ACP documentation, 4.25% filled out the Power of Attorney, 5.75% filled out the Advance Directive, and 8.92% filled out the Code Status. Increasing age and being black/African-American seem to be related to an increased likelihood of completion of at least one type of ACP documentation. While increasing BMI and outpatient services seem to be related to a decrease in the likelihood of completing at least one type of ACP documentation. Conclusion: Understanding the factors related to ACP documentation will allow us to manage them and improve their completion. These results will help to inform the development of tools to increase the integration of ACP into care, especially those that are technology-based. Further work could include designing a predictive model to prioritize patients requiring ACP. Providing knowledge about ACP in nonclinical areas can lead to increased education about ACP and its benefits to families and communities. Citation Format: Andres Mauricio Garcia Sierra, Marcia Tan. Predictors of advance care planning documentation in female patients with breast cancer: A multilevel model analysis [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C005.

Feasibility of Nurse-Facilitated Advance Care Planning Among Older Veterans in a Dialysis Unit and an Oncology Infusion Center.

Many veterans with serious illnesses, such as end-stage kidney disease requiring dialysis and advanced cancer requiring treatment infusions, must make complex decisions about their current and future medical care. Advance care planning (ACP) is a process where individuals identify, express, and communicate their personal values, life goals, and preferences for care. ACP may be feasible in chemotherapy infusion centers or chronic dialysis centers during patient treatment. We assessed the feasibility of a licensed vocational nurse (LVN) facilitator to help veterans review the PREPARE for Your Care program (www.prepareforyourcare.org) and complete an advance directive (AD) in an outpatient hemodialysis unit or a chemotherapy infusion center. PREPARE For Your Care is an evidence-based online program with written pamphlets and ADs that prepares patients to participate with clinicians in making medical decisions. We measured the time to complete a session and the level of assistance required from LVNs via LVN self-report. Self-reported ease-of-use, comfort, and helpfulness were assessed on a 10-point Likert scale from 1 (not at all) to 10 (very). Twenty-eight patients were enrolled (mean age ± SD: 67 ± 11 years); all (100%) completed PREPARE and the AD within 1 session. The mean completion time was 100 (±40) minutes. Most of the patients required considerable assistance from the LVN. The mean scores were 8.0 of 10 for ease-of-use (±2.3), 7.7 of 10 (±2.8) for comfort, and 8.2 of 10 (±2.3) for helpfulness. This pilot study demonstrates that using PREPARE as an ACP tool for veterans may be feasible for patients during hemodialysis and chemotherapy infusion. Patients required considerable assistance from the LVN to complete PREPARE. Hemodialysis and chemotherapy infusion are opportunities when patients have time and space to consider ACP.

The Italian law 219/2017: informed consent and advance directives. When the patient-doctor communication time is law, but it is forgotten

The Italian law 217/2019 on "Informed consent and advance directives" is an important step forward in the redefinition of patient-doctor relationships. The law points out the principles of the decisional autonomy and freedom of the patient to choose the treatment options. However, it is underestimated and largely unapplied by the Italian cardiologists. The main elements of patient-doctor communication are present in the law. The most important is the time devoted to the patient-doctor relationship, necessary to ease the disease awareness. This time is clearly emphasized in the law, but the healthcare institutions did not arrange for the appropriate organizational procedures. Through the advance directives (ADs) the patients may express their own wishes about healthcare treatments, as well as their consent or refusal regarding the diagnostic or therapeutical doctors' suggestions, allowing their respect in case they become incompetent. This right is supported by the patients' designation of a healthcare proxy, who can interact for them with the healthcare team. However, after 6 years since the law enactment, only 0.4% of the Italian citizens signed ADs, due to insufficient information and organization by the healthcare authorities. In the Law, the advance care planning is closely related to ADs. In this process, the adults can understand and share their personal values, life goals and preferences, in order to define the potential future medical care and to discuss all the issues with family and physicians. These processes can be integrated in a broader shared decision-making, a strong tool of the patient-doctor alliance.

Co-designing strategies to improve advance care planning among people from culturally and linguistically diverse backgrounds with cancer: iCanCarePlan study protocol

BackgroundAdvance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds.MethodA mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds.DiscussionThe project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.

How adult children of incarcerated parents experience ambiguous loss.

Families can experience grief when they lose a loved one to incarceration. Although there has not been a death, the removal of a family member from day-to-day life and the uncertainty and stigma surrounding incarceration pose major challenges. We applied consensual qualitative research methods to understand the unique grief experience that adult children have when a parent is incarcerated. Our findings elaborate on the impacts of the loss, the complicating factors of stigma and disenfranchisement, as well as how individuals have made meaning and pursued healing from this experience over time. Impacts included changes to member roles within the new family structure and difficulty forming secure bonds with peers. Participants characterized stigma toward their parent as extending to themselves and complicating their ability to openly miss their parent or process complicated reactions to the incarceration. Despite systemic challenges, participants set their personal life goals and used a combination of problem-focused coping and distancing themselves from the incarceration to successfully manage the loss. Consistent with these findings, mental health professionals serving this population can validate incarceration as a loss, repair ambiguity in family roles, develop an accepting therapeutic relationship that reduces perceived stigma, and identify possibilities for activism.

Effects of Centrality of Religiosity and Dyadic Coping on Psychological Well-Being of Married Couples who Postpone Parenthood

Religiosity and dyadic coping are among the factors important for the quality of marriage, satisfaction with the relationship and the sense of happiness of the spouses. Well-being, mainly in the aspect of personal development or life goals, seems to be particularly important for couples planning to conceive a child in the near or distant future. The study involved 51 married couples postponing parenthood. Their dyadic coping, psychological well-being and the centrality of religiosity were studied. The actor-partner interdependence model was used for the dyadic analyses. There were no differences in the well-being between the spouses, however, women rated in dyadic coping and religiosity higher. The centrality of the spouses’ religiosity, and especially the congruence of their religious beliefs, seems to have a significant impact on their well-being. The obtained results seem to shed new light on the importance of dyadic coping by spouses and their religiosity for the well-being of each of them.

Health system barriers to access to quality sexual and reproductive health and rights in relation to family planning and contraception

Background: Access to reproductive health information and services is critical to health, well-being, and the ability to achieve personal and corporate life and work goals. Within the context of sexual and reproductive health rights (SRHR), the health system should adopt a life course approach to achieve a continuum of care. This spectrum needs to span from conception to the care of the aging woman across all contexts and must encompass humanitarian crises, climate change, and environmental exposures while embracing the ongoing digital transformation narrative. Current challenges relating to family planning and contraception (FPC) within the Kenyan context typically arise from highly prevalent unfavorable sociocultural norms and traditions.
 Selected SRHR intervention programs: Programs that promote girls’ education and enhance community engagement to effect sociobehavioral change programing have high transformative potential. Some of these programs include the provision of contraception, adolescent, and youth-friendly programs (AYFS), intimate partner violence intervention programs, HIV prevention, use of multipurpose product technologies (MPT), prevention of abortion-related mortality, provision of access to maternity care, and continuous improvement of quality of care.
 Conclusion: Obstetricians and gynecologists must commit to governance leadership that focuses on SMART advocacy, the establishment of health system resilience to provide access, effective coverage, and rights-based approaches. These are vital to the provision of optimal FPC care in Kenya.

A Philosophical Approach to Talent Development

ABSTRACT High ability and talent development literature present different and sometimes competing or contradictory goals for talent development. One side emphasizes that talents should be developed to enable individuals with high abilities to make societal contributions, while the other side focuses on the individual’s personal life goals. This article investigates how the philosophical theories of Aristotle and Kant can contribute to a better understanding of talent development and its goals. Both of these theories provide a normative basis for an ethical duty to develop one’s talents and suggest that the dichotomy between societal and personal interests should not exist. Talent development should aim for realizing one’s potential and contribute to a meaningful way of living driven by self-determined goals that integrate personal interests and societal contributions. It is suggested that talent development should include a wide range of talents, including moral talents.

ADVANCE CARE PLANNING IN PRIMARY CARE: ENGAGING ACCOMPANIED OLDER ADULTS WITH COGNITIVE IMPAIRMENT

Abstract Alzheimer’s Disease and Related Dementias (ADRD) are among the most profoundly disabling and costly of all health conditions, and persons living with dementia are at heightened risk for high utilization of burdensome and costly end-of-life care. Family caregivers are at the forefront of managing ADRD, however, they are not routinely engaged in primary care discussions about prognosis and the healthcare preferences of the people for whom they care. Advance care planning (ACP) is a longitudinal communication process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. Early initiation of ACP, communication with the primary care team, and the inclusion of associated caregivers is imperative in ADRD care due to progressive and devastating effects on decision-making capacity connected with the disease. SHARE, a multicomponent communication intervention, engaged 273 patient-family caregiver dyads in a randomized-controlled trial collecting baseline and six-month survey data related to experiences in the primary care setting. 145 patient-caregiver dyads assigned to the intervention received an offer for a facilitated advance care planning conversation. This symposium will highlight 6-month outcomes from caregiver-reported surveys. Attendees will gain a perspective on ACP considerations in a cognitively impaired population including ethical considerations and the factors influencing preparedness for medical decision making for involved family caregivers. Additional attention concerning the quality and content of ACP conversations with patient-caregiver dyads and the development of a fidelity tool for usage with audio-recorded ACP conversations will be presented.

Palliative Care in Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease of the motor neurons. Given the evolutive characteristics of this disease, palliative care principles should be a foundation of ALS care. A multidisciplinary medical intervention is of paramount importance in the different phases of disease. The involvement of the palliative care team improves quality of life and symptoms, and prognosis. Early initiation is of paramount importance to ensuring patient-centered care, when the patient has still the capability to communicate effectively and participate in his medical care. Advance care planning supports patients and family members in understanding and sharing their preferences according to their personal values and life goals regarding future medical treatment. The principal problems which require intensive supportive care include cognitive disturbances, psychological distress, pain, sialorrhrea, nutrition, and ventilatory support. Communication skills of health-care professionals are mandatory to manage the inevitability of death. Palliative sedation has peculiar aspects in this population, particularly with the decision of withdrawing ventilatory support.

Higher education decision making of Australian women with caring responsibilities

It is well established that women bear greater caring responsibilities than men, however little is known about how this care work influences the decision-making processes of female carers who are considering Higher Education (HE). These deliberations occur well before women commit to enrolling and frequently result in carers making decisions to delay or not pursue HE, with consequences for their own careers and the persistence of gender inequalities more broadly. A scoping review of academic literature published since 1980 which followed the PRISMA-ScR process for scoping reviews was conducted to answer the research question “What is the scope of the literature regarding the influence of caregiver responsibilities on Australian women’s tertiary education decision making processes?” Studying the literature in one national context enabled the influences of personal as well as contextual influences to be identified. The results show that very little is known about how women who have caring responsibilities make decisions about whether or not to undertake HE studies. Important issues were identified such as the lack of a clear definition of carer and recognition of this cohort as an equity group. A complex array of personal, cultural and structural factors which may enable women’s HE decisions were identified, including the desire to achieve personal life goals, the encouragement and support of family members and supportive workplaces. However, constraints such as competing time demands, the continuing prevalence of traditional gendered expectations and idealised notions of HE students as unencumbered were also noted. No studies directly addressed decision-making processes, or how the many elements combined to influence female carers prior to enrolment. The paucity of research points to an urgent need for studies which will address the gaps in knowledge. This review points to new directions in research and decision-making theories to encompass the role of context and care in decisions, and provides some advice meanwhile to inform career practitioners, HE providers and career researchers.

The care planning umbrella: The evolution of advance care planning.

The care planning umbrella: The evolution of advance care planning.

Physical, Mental, and Social Health of Adult Patients with Sickle Cell Disease after Allogeneic Hematopoietic Stem Cell Transplantation: A Mixed-Methods Study

Patients with sickle cell disease (SCD) experience a considerable physical and psychosocial disease burden. In recent years, the application of allogeneic hematopoietic stem cell transplantation (HSCT) to treat adults with SCD has increased. A thorough understanding of patients' physical, mental, and social health before and after cure is needed to meet the needs of this growing group of patients. We aimed to explore the perspectives of adult SCD patients on the changes in their experienced health and personal life goals after being cured. A mixed-methods approach was used, comprising a semistructured interview and a set of 9 Patient Reported Outcomes Measurement Information System (PROMIS) measures. Adult SCD patients who underwent HSCT at least 1 year earlier were eligible to participate in the study. Interviews were thematically analyzed using MAXQDA software. PROMIS T scores were compared with reference scores of the general population using SPSS Statistics. Ten patients participated in the study; their median age was 29.5 years (range, 19 to 49 years), and their median time since HSCT was 2.7 years (range, 1.0 to 3.5 years). Themes from the interviews were (1) pain/living pain free, (2) physical well-being, (3) mental well-being, (4) perspective/ outlook, (5) education/work, (6) family/friends, and (7) activities/participation. Following the PROMIS framework, we described these themes in a narrative synthesis according to health domain and categorized in 4 chronological time phases: before HSCT, first year post-transplantation, current situation, and future expectations. Physical health improved greatly, but transplantation-related toxicity, ongoing pain from avascular osteonecrosis, and fatigue negatively impacted quality of life in some patients. Furthermore, emotional struggles during the post-transplantation period were common, and patients expressed a need for psychological help. Patients reported improvements in social health and the ability to pursue personal life goals. The mean T scores of all PROMIS measures fell within the normal symptom limits compared with reference data of the general population, although, large variations were observed among the participants, matching our qualitative findings. In general, adult SCD patients experienced improved physical, mental, and social health after cure by HSCT and were able to pursue personal life goals. Yet they found themselves confronted with a new and unfamiliar reality that brought different challenges. Pain due to irreversible avascular osteonecrosis continued to have a negative impact. Clinicians should aim to help patients have realistic expectations before transplantation and offer timely psychological care.

Exploring readiness for implementing goal-oriented care in primary care using normalization process theory.

To use normalization process theory (NPT) to build a strategy for the implementation of goal-oriented care (GOC) in primary care in Flanders, Belgium. GOC is a possible approach to more coordinated and integrated care and tailors care to patients' personal life goals. The concept has gained interest among policy makers and researchers, but the main drivers for successful implementation are the primary healthcare professionals (PHCPs) who need to see added value of GOC in order to embed it into their daily practice. NPT, developed to understand the processes of implementing new ways of organizing care, offers a useful lens to understand adoption of GOC in primary care practice. PHCPs (n = 131) who participated in a 2-hour community meeting on GOC were asked to complete the Normalization MeAsure Development survey. This 23-item survey is based on NPT and describes participants' views about how an intervention would impact their work, their expectations about it, and whether it could become a routine part of their work. The NPT constructs coherence (sense-making work) and cognitive participation (relational work) showed positive tendency toward implementation of GOC. The participants had an initial understanding on GOC and there was much interest in supporting and start working with this approach. The other constructs collective action (operational work) and reflexive monitoring (appraisal work) will need further efforts to trigger implementation. A common ground is needed to integrate GOC as a common practice which can be achieved by intensive interprofessional collaboration.

Life meaning constructed from dignity therapy in traditional Chinese culture: A qualitative analysis of dignity therapy generativity documents.

To examine the thematic features of dignity therapy generativity documents of advanced cancer patients receiving chemotherapy in mainland China from the perspective of meaning-making during dignity therapy. This is a qualitative descriptive study. Content analysis was used to analyze 24 dignity therapy generativity documents derived from a quasi-experimental trial of dignity therapy for advanced cancer patients receiving chemotherapy in a daycare center at a cancer hospital in northern China. Among the 24 advanced cancer patients whose generativity documents were analyzed, 14 were male and ranged in age from 26 to 78years (average=50.3). Two dimensions emerged from the data: (1) the sources of meaning in life, which consisted of social relationships, things and circumstances providing meaning in life, and (2) the ultimate meaning in life, referring to finding one's real self and realizing the purpose in life, including personal life goals, dignity and autonomy, and morality of patients. The multidimensional constructs of meaning in life with distinctive traditional Chinese cultural characteristics could provide insights into dignity-conserving care for advanced cancer patients with Chinese culture and provide evidence for refining the implementation protocol of DT through intentionally addressing the ultimate meaning of patients in the therapeutic session.

Quality of Life and Personal Life Goals of Adult Sickle Cell Disease Patients after Curative Allogeneic Stem Cell Transplantation: A Mixed Methods Study

Introduction: Sickle cell disease (SCD) is associated with poor quality of life (QoL) and early mortality. In the Netherlands, allogeneic hematopoietic stem cell transplantation (HSCT) as curative treatment option for adult SCD patients was first introduced in 2018. A thorough understanding of the impact of undergoing HSCT on QoL is essential for health care professionals to be able to meet the needs of this patient population. Aim: To explore the perspectives of adult SCD patients on the impact of curative HSCT on physical, mental, and social health. Methods: Adult SCD patients who underwent HSCT at the Amsterdam UMC ≥ 1 year ago were eligible for this study. A mixed methods approach consisting of an exploratory qualitative design and a questionnaire component was used. All patients participated in a semi-structured interview on their experienced QoL and personal life goals. Interviews were audio recorded, transcribed, and coded using MAXQDA® software. Results were analyzed using Thematic Analysis. Additionally, participants completed a Patient Reported Outcome Measurement Information System (PROMIS®) questionnaire measuring 9 item banks on physical, mental, and social health at the time of the interview. Results of the PROMIS® questionnaires (T-scores) were related to reference T-scores of the general Dutch population using descriptive statistics (IBM SPSS statistics 28.0). Results: Ten SCD patients with a median age of 29.5 years (range 19-49) participated in the study between October 2021 and May 2022. The median time since HSCT was 2.7 years ranging from 1 to 3.5 years. Mean T-scores of all participants fell within normal limits for all 9 PROMIS® item banks, as compared to the Dutch general population (Table 1). However, T-scores varied between patients. Two patients with serious avascular bone necrosis (AVN), developed prior to HSCT, scored mild, moderate, or severe on ≥7 of 9 item banks. Another patient scored mild or moderate on all 3 mental health item banks. These differences between patients, as well as a general satisfaction with their current QoL despite having experienced physical and psychosocial difficulties were reflected in the outcome of the interviews. Eight central themes emerged from the Thematic Analysis: (1) pain, (2) physical wellbeing, (3) mental wellbeing, (4) perspective, (5) counseling/guidance, (6) education and work, (7) family and friends, and (8) activities and participation. These themes were categorized in mental, physical, and social health, following the PROMIS framework, and subsequently described based on four phases: before HSCT, HSCT - 1st year post transplantation, current situation, and future expectations. Most patients reported to experience improved physical, mental, and social health after HSCT and being able to set and achieve personal life goals. However, many participants also described an (ongoing) mental impact of having had SCD their whole life even after curation by HSCT. They expressed a clear need for psychological counseling before, during, and after HSCT. Furthermore, persistence of pain due to AVN had a negative influence on the perceived physical health of some patients. Several patients experienced a discrepancy between their expectations of HSCT and the outcome; either above- or below-expected. Conclusion: QoL of adult SCD patients who underwent curative HSCT seemed generally comparable to the Dutch general population; patients reported to experience improved QoL, and the ability to pursue personal life goals. However, the physical, mental, and social impact after curation can be extensive, ranging from positive to negative and differed between patients. Patients expressed a need for psychological support before, during, and after HSCT. Moreover, irreversible SCD-related organ damage can negatively influence the QoL of transplant recipients and patient expectations should be actively discussed by health care professionals before HSCT. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Vulnerability and Resilience: Phenomenological Analysis of Cancer Patients Value Directives.

Personal values are individual conceptions of the desirable appraisals and actions that guide our attitudes and behaviour. Advance care planning (ACP) now emphasises the consideration of personal life goals and values expressed as a Values Directive (VD) to guide discussions concerning medical treatment. To investigate the diversity of values, experiences and adaptations expressed in cancer patients VDs. Contents of the VDs of ACPs of cancer patients who participated in a randomised control trial comparing a video intervention showing values communication between cancer patient-caregivers with usual care were analysed. Qualitative phenomenological content analysis was used to understand how participants made meaning of their lived experiences. Forty-two participants completed an ACP (37.2% response rate), with 97.6% of these completing a VD (57.1% female, mean age 72 years, 30.1% gastrointestinal cancer). Participants described diverse adjustments to frailty and adaptive coping with deteriorating functionality. Emotional and financial concerns were eased through experiencing benevolence and trust established through family and friendship bonds and reciprocation of care. Death anxiety and ambivalence were expressed concurrently with the experiential acceptance of dying. Secular and sacred rituals featured as an affirmation of their faith or beliefs. Cancer patients seek to make meaning of their experiences, concurrently posturing vulnerability and resilience, despite conflicting emotions and experiences. Given that the choices people make as they approach dying relate to their most deeply held values, ACP conversations should explore how patients draw from their values and life goals to optimise their adaptations to illness.

A Descriptive and Phenomenological Exploration of the Spiritual Needs of Chinese Children Hospitalized with Cancer.

Spiritual well-being is the fourth dimension of health, as equally important as physical, mental, and social well-being. The shadow of death associated with cancer triggers children to explore their personal values, meanings, and life goals throughout the illness trajectory, enabling them to identify their unique spiritual needs. Chinese children are generally non-religious, unlike Western children, which affects their spiritual needs. To address the literature gaps, we applied a qualitative, descriptive, phenomenological approach for exploring the spiritual needs of Chinese children hospitalized with cancer. Purposive sampling was conducted in two public hospitals with special wards for pediatric oncology patients in Hunan Province, China. Consequently, 22 children, hospitalized with cancer, were recruited and individually interviewed using a semi-structured interview format. We conducted a thematic analysis of the interview transcripts. Four important themes were identified: the need for self-exploration, inner needs, need for a connection with others, and need for a connection with gods, supernatural powers, and fictional characters. We found that culture significantly influenced the spiritual needs of Chinese children with cancer. Hope was a key factor motivating the children to continue cancer treatment. To address their unique spiritual needs, culturally specific interventions should be developed and incorporated into their care to enhance their spiritual well-being.

"I Wish Someone had Asked Me Earlier"-Perspectives on Advance Care Planning in Surgery.

"I Wish Someone had Asked Me Earlier"-Perspectives on Advance Care Planning in Surgery.

Perceived facilitators of and barriers to mental health treatment engagement among decision-making competent adolescents in Greece

BackgroundA subset of adolescents with mental disorders are likely to have decision-making capacity that facilitates their therapy engagement. However, there are high rates of drop-out in mental health settings.AimThis study aims to identify perceived barriers to or facilitators of mental health care engagement among adolescents with decision-making competence in Greece.MethodsA qualitative study was conducted using semi-structured interviews of adolescents with a wide range of mental health problems. In addition, two psychometric assessment measures were used to define who to include or exclude from the study sample.ResultsPositive attitudes and experiences with therapy were reported as strong (“major”) facilitators of therapy engagement for adolescents with mental disorders, whereas negative experiences with therapy were reported as strong barriers to it. Furthermore, and most importantly, a “good” adolescent-therapist relationship was reported as a strong facilitator, whereas negative experiences of participants with their therapist were reported as strong barriers. Moreover, goals such as getting rid of symptoms, improving personal well-being, and improving social skills and relationships (especially with peers) emerged as strong facilitators of therapy engagement. Importantly, the early remission of symptoms emerged from the study as a strong barrier to therapy engagement for participants. Among the weaker (“minor”) perceived facilitators were goals such as confessing to a trustworthy person, becoming able to achieve personal expectations and life goals, enhancing independence and self-esteem, and developing a positive self-image. The (active or supportive) role of family emerged as a facilitator. The stigma related to mental health emerged as both a (“minor”) facilitator of and barrier to therapy engagement for participants. Friends were reported as having a role ranging from neutral to mildly supportive.ConclusionA number of more or less strong barriers and facilitators were identified that, for the most part, were consistent with prior literature. However, the authors identified some nuances that are of clinical importance. For instance, adolescents are most likely to terminate the treatment prematurely if they experience early symptom remission. Highlighting the role of therapy in achieving their goals or improving their families’ well-being might be used by therapists to reduce the attrition rate.