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Palliative Medicine May 2024Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and...
BACKGROUND
Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care.
AIM
To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development.
DESIGN
A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews.
SETTING/PARTICIPANTS
Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents.
RESULTS
Four generated themes included: 1. ''; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having '': control and responsibility; 4. Enabling patient and carer control of their records: ''.
CONCLUSIONS
Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.
PubMed: 38813756
DOI: 10.1177/02692163241255511 -
PloS One 2024Foster care programs at animal shelters have emerged as an important tool for promoting animal welfare and supporting shelter life-saving efforts. Preliminary evidence...
Foster care programs at animal shelters have emerged as an important tool for promoting animal welfare and supporting shelter life-saving efforts. Preliminary evidence suggests that foster caregiving may also be health-promoting for humans. The goals of this study were to investigate the experiences of foster caregivers at animal shelters based on measures of positive and negative affect, quality of life, and grief, and to describe human-animal attachment among foster populations. Between March 2022 and 2023, 131 foster caregivers from five shelters in the United States completed three online surveys before, during and after providing foster care to a shelter animal. Positive affect decreased significantly from baseline to post-foster (F = 5.71, p<0.01), particularly among dog caregivers (F = 6.17, p<0.01). Negative affect remained unchanged (F = 0.47, p = 0.63). Foster caregivers perceived their foster animal provided companionship, affection and emotional support, although dog foster caregivers reported significantly higher emotional (U = 313.50, p<0.01) and social/physical quality of life (t = 4.42, p<0.01) than cat foster caregivers. Caregivers reported low mean avoidant and anxious attachment, suggesting they were able to develop secure bonds with their foster animals. Retention of fosters was also strong, with 86% of caregivers reporting they were likely to provide foster care in the future. Our findings suggest that fostering at animal shelters may serve as a One Health intervention to offer companionship, affection and emotional support to human caregivers while promoting animal welfare. However, these benefits did not translate to improvements in caregiver mental wellbeing, so caution should be applied when considering foster caregiving as a potential mental health promotion tool.
Topics: Humans; Quality of Life; Animals; Caregivers; Dogs; Female; Male; Human-Animal Bond; Grief; Adult; Mental Health; Middle Aged; Prospective Studies; Animal Welfare; Surveys and Questionnaires; Foster Home Care; Young Adult; Aged
PubMed: 38776263
DOI: 10.1371/journal.pone.0301661 -
BMC Psychiatry May 2024Nowadays, moderate gaming behaviors can be a pleasant and relaxing experiences among adolescents. However, excessive gaming behavior may lead to gaming disorder (GD)...
BACKGROUND
Nowadays, moderate gaming behaviors can be a pleasant and relaxing experiences among adolescents. However, excessive gaming behavior may lead to gaming disorder (GD) that disruption of normal daily life. Understanding the possible risk factors of this emerging problem would help to suggest effective at preventing and intervening. This study aimed to investigate the prevalence of GD and analyze its possible risk factors that adolescents with GD.
METHODS
Data were collected between October 2020 and January 2021. In total, a sample of 7901 students (4080 (52%) boys, 3742 (48%) girls; aged 12-18 years) completed questionnaires regarding the Gaming-Related Behaviors Survey, Gaming Disorder Symptom Questionnaire-21 (GDSQ-21); Behavioral Inhibition System and Behavioral Activation System Scale (BIS/BAS Scale); Emotion Regulation Questionnaire (ERQ); Short-form Egna Minnenav Barndoms Uppfostran for Chinese (s-EMBU-C); and Adolescent Self-Rating Life Events Checklist (ASLEC).
RESULTS
The prevalence of GD was 2.27% in this adolescent sample. The GD gamers were a little bit older (i.e., a higher proportion of senior grades), more boys, with more gaming hours per week in the last 12 months, with more reward responsiveness, maternal rejecting and occurrence of negative life events (e.g., interpersonal relationships, being punished and bereavement factors).
CONCLUSION
These possible risk factors may influence the onset of GD. Future research in clinical, public health, education and other fields should focus on these aspects for provide target prevention and early intervention strategies.
Topics: Humans; Adolescent; Male; Female; China; Risk Factors; Prevalence; Child; Internet Addiction Disorder; Video Games; Adolescent Behavior; Surveys and Questionnaires; Behavior, Addictive
PubMed: 38773555
DOI: 10.1186/s12888-024-05826-9 -
PLOS Global Public Health 2024Over 98% of stillbirths and neonatal deaths occur in Low- and Middle-Income Countries, such as Tanzania. Despite the profound burden of perinatal loss in these regions,...
Over 98% of stillbirths and neonatal deaths occur in Low- and Middle-Income Countries, such as Tanzania. Despite the profound burden of perinatal loss in these regions, access to facility or community-based palliative and psychosocial care is poor and understudied. In this study we explore perinatal loss through the lens of front-line healthcare providers, to better understand the knowledge and beliefs that guide their engagement with bereaved families. A Knowledge Attitudes and Practices survey addressing perinatal loss in Tanzania was developed, translated into Swahili, and administered over a 4-month period to healthcare professionals working at the Kilimanjaro Christian Medical Center (KCMC). Results were entered into REDCap and analyzed in R Studio. 74 providers completed the survey. Pediatric providers saw a yearly average of 5 stillbirths and 32.7 neonatal deaths. Obstetric providers saw an average of 11.5 stillbirths and 13.12 neonatal deaths. Most providers would provide resuscitation beginning at 28 weeks gestational age. Respondents estimated that a 50% chance of survival for a newborn occurred at 28 weeks both nationally and at KCMC. Most providers felt that stillbirth and neonatal mortality were not the mother's fault (78.4% and 81.1%). However, nearly half (44.6%) felt that stillbirth reflects negatively on the woman and 62.2% agreed that women are at higher risk of abuse or abandonment after stillbirth. A majority perceived that women wanted hold their child after stillbirth (63.0%) or neonatal death (70.3%). Overall, this study found that providers at KCMC perceived that women are at greater risk of psychosocial or physical harm following perinatal loss. How women can best be supported by both the health system and their community remains unclear. More research on perinatal loss and bereavement in LMICs is needed to inform patient-level and health-systems interventions addressing care gaps unique to resource-limited or non-western settings.
PubMed: 38768103
DOI: 10.1371/journal.pgph.0003227 -
BJPsych Bulletin May 2024This paper presents an emerging understanding of the psychodynamics of suicide loss, derived from over 1500 accounts of suicide bereavement shared by families, friends...
This paper presents an emerging understanding of the psychodynamics of suicide loss, derived from over 1500 accounts of suicide bereavement shared by families, friends and clinicians. It identifies clear patterns in the responses of the bereaved, particularly the formation of delusional narratives that often place them at the centre of blame for the death. These narratives have a profound impact on well-being, increase the risk of mental illness and elevate the likelihood of death by suicide. They not only cause harm to the bereaved but also permeate and distort our systemic and societal responses. Understanding why suicide unleashes such painful and dangerous forces helps mitigate the widespread harm and distress that often follows such a death. This knowledge also enables us to effectively and compassionately support those bereaved.
PubMed: 38764387
DOI: 10.1192/bjb.2024.37 -
BMC Palliative Care May 2024Annually, approximately five per cent of dependent children - aged under eighteen years - in the United Kingdom (UK), experience parental death. Nurses and social...
Priorities for enhancing nurses' and social workers' competence and confidence in helping families support dependent children through parental death. A classic-Delphi survey.
BACKGROUND
Annually, approximately five per cent of dependent children - aged under eighteen years - in the United Kingdom (UK), experience parental death. Nurses and social workers caring for parents with life-limiting illnesses, including cancer, help families support their children. However, these professionals have been found to lack confidence and competence in fulfilling this role.
METHODS
We conducted three rounds of a classic-Delphi survey to identify and measure a panel of topic experts' consensus on the priorities and issues for nurses and social workers when supporting families and children through parental death. The Delphi survey was conducted with a panel of UK topic experts (n=43) including lead health and social care professionals (n=30), parents bereaved of a partner whilst parenting dependent children (n=6), academics (n=4) and bereaved young adults (n=3).
RESULTS
Ninety per cent (n=18/20) of the issues for nurses and social workers and all (7/7) of the priorities rated and ordered in the survey achieved consensus. Key priorities were 1) training in opening conversations with families about dependent children, 2) training and support for nurses and social workers to manage their own and others' emotions arising from conversations with parents about children's needs regarding parental death, and 3) increasing nurses' and social workers' knowledge of sources of information to support families before the death of a parent.
CONCLUSION
We identified priorities for UK nurses and social workers. Further research is needed to identify which of these nurses and social workers would benefit most from support, and how any resultant interventions could enhance confidence and competence in helping families to support children through parental death.
Topics: Humans; Delphi Technique; Social Workers; United Kingdom; Adult; Female; Male; Nurses; Surveys and Questionnaires; Parental Death; Child; Clinical Competence; Middle Aged
PubMed: 38760809
DOI: 10.1186/s12904-024-01452-0 -
Cureus Apr 2024Intensive care units (ICUs) are designed for critically ill patients who often experience high mortality rates owing to the severity of their conditions. Although the... (Review)
Review
Family Members' Feedback on the "Quality of Death" of Adult Patients Who Died in Intensive Care Units and the Factors Affecting the Death Quality: A Systematic Review and Meta-Analysis.
Intensive care units (ICUs) are designed for critically ill patients who often experience high mortality rates owing to the severity of their conditions. Although the primary goal is patient recovery, it is crucial to understand the quality of death in the ICU setting. Nevertheless, there is a notable lack of systematic reviews on measured death quality and its associated factors. This study aims to conduct a quantitative synthesis of evidence regarding the quality of death in the ICU and offers a comprehensive overview of the factors influencing this quality, including its relationship with the post-intensive care syndrome-family (PICS-F). A thorough search without any language restrictions across MEDLINE, CINAHL, PsycINFO, and Igaku Chuo Zasshi databases identified relevant studies published until September 2023. We aggregated the results regarding the quality of death care for patients who died in the ICU across each measurement tool and calculated the point estimates and 95% confidence intervals. The quantitative synthesis encompassed 19 studies, wherein the Quality of Dying and Death-single item (QODD-1) was reported in 13 instances (Point estimate: 7.0, 95% CI: 6.93-7.06). Patient demographic data, including age and gender, as well as the presence or absence of invasive procedures, such as life support devices and cardiopulmonary resuscitation, along with the management of pain and physical symptoms, were found to be associated with a high quality of death. Only one study reported an association between quality of death and PICS-F scores; however, no significant association was identified. The QODD-1 scale emerged as a frequently referenced and valuable metric for evaluating the quality of death in the ICU, and factors associated with the quality of ICU death were identified. However, research gaps persist, particularly regarding the variations in the quality of ICU deaths based on cultural backgrounds and healthcare systems. This review contributes to a better understanding of the quality of death in the ICU and emphasises the need for comprehensive research in this critical healthcare domain.
PubMed: 38756296
DOI: 10.7759/cureus.58344 -
PloS One 2024Which kinds of grievances garner support from the public on online platforms? Focusing on national online petitioning, one of the forms of direct democracy in...
Which kinds of grievances garner support from the public on online platforms? Focusing on national online petitioning, one of the forms of direct democracy in contemporary politics, we examine the content and characteristics of petitions that succeeded in attracting public attention and support. Using our comprehensive data on online petitions that were submitted to the executive office between 2017 and 2022 in South Korea, our analysis yields three important findings. First, a mix of post-materialist topics such as human rights and gender equality and materialist topics such as safety and environment turn out to be salient among petitions that meet the signature threshold. Second, online petitions the contents of which reveal either moral emotions or Confucian attitudes are more likely to gain public support compared to others. Third, keywords that are related to moral claims asking for the apprehension of perpetrators on behalf of victims, such as 'victim,' 'perpetrator,' 'kid,' and 'punishment,' appear most frequently inside the petitions that cross the signature threshold. Such findings provide implications for understanding both the potentials and limitations of national online petitioning in contemporary democracies.
Topics: Republic of Korea; Humans; Internet; Politics; Democracy; Grief
PubMed: 38753871
DOI: 10.1371/journal.pone.0302373 -
Prolonged grief disorder symptomology in three African countries: A network analysis and comparison.Global Mental Health (Cambridge,... 2024Bereavement is a globally prevalent life stressor, but in some instances, it may be followed by a persistent condition of grief and distress, codified within the 11th...
BACKGROUND
Bereavement is a globally prevalent life stressor, but in some instances, it may be followed by a persistent condition of grief and distress, codified within the 11th edition of the International Classification of Diseases (ICD-11) as prolonged grief disorder (PGD). Network analysis provides a valuable framework for understanding psychological disorders at a nuanced symptom-based level.
AIM
This study novelly explores the network structure of ICD-11 PGD symptomology in a non-Western sample and assesses the replication of this across three African country sub-samples in these data.
METHODOLOGY
Network models were estimated using the "Inventory of Complicated Grief-Revised" in a sample of trauma-exposed individuals who experienced bereavement throughout life ( = 1,554) from three African countries (Ghana, = 290; Kenya, = 619; Nigeria, = 645). These networks were statistically evaluated using the network comparison test.
RESULTS
It was found that "Feelings of Loss" and "Difficulty moving on" were the most central symptoms in the combined sample network. These findings were largely consistent for the Ghana and Nigeria sub-samples, however, network structure differences were noted in the Kenya sub-sample.
CONCLUSION
The identified PGD network highlights particular indicators and associations across three African samples. Implications for the assessment and treatment of PGD in these cultural contexts warrant consideration.
PubMed: 38751724
DOI: 10.1017/gmh.2024.54 -
BMC Nursing May 2024Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. Canada's legislation is the first to permit Nurse Practitioners (NP) to serve as independent MAiD...
Developing a survey to measure nursing students' knowledge, attitudes and beliefs, influences, and willingness to be involved in Medical Assistance in Dying (MAiD): a mixed method modified e-Delphi study.
BACKGROUND
Medical Assistance in Dying (MAiD) was legalized in Canada in 2016. Canada's legislation is the first to permit Nurse Practitioners (NP) to serve as independent MAiD assessors and providers. Registered Nurses' (RN) also have important roles in MAiD that include MAiD care coordination; client and family teaching and support, MAiD procedural quality; healthcare provider and public education; and bereavement care for family. Nurses have a right under the law to conscientious objection to participating in MAiD. Therefore, it is essential to prepare nurses in their entry-level education for the practice implications and moral complexities inherent in this practice. Knowing what nursing students think about MAiD is a critical first step. Therefore, the purpose of this study was to develop a survey to measure nursing students' knowledge, attitudes and beliefs, influences, and willingness to be involved in MAiD in the Canadian context.
METHODS
The design was a mixed-method, modified e-Delphi method that entailed item generation from the literature, item refinement through a 2 round survey of an expert faculty panel, and item validation through a cognitive focus group interview with nursing students. The settings were a University located in an urban area and a College located in a rural area in Western Canada.
RESULTS
During phase 1, a 56-item survey was developed from existing literature that included demographic items and items designed to measure experience with death and dying (including MAiD), education and preparation, attitudes and beliefs, influences on those beliefs, and anticipated future involvement. During phase 2, an expert faculty panel reviewed, modified, and prioritized the items yielding 51 items. During phase 3, a sample of nursing students further evaluated and modified the language in the survey to aid readability and comprehension. The final survey consists of 45 items including 4 case studies.
DISCUSSION
Systematic evaluation of knowledge-to-date coupled with stakeholder perspectives supports robust survey design. This study yielded a survey to assess nursing students' attitudes toward MAiD in a Canadian context.
CONCLUSION
The survey is appropriate for use in education and research to measure knowledge and attitudes about MAiD among nurse trainees and can be a helpful step in preparing nursing students for entry-level practice.
PubMed: 38745233
DOI: 10.1186/s12912-024-01984-z