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Disease modifying therapies for children with spinal muscular atrophy - parents' experiences of hopes, grief and need for rehabilitation for their child.

PURPOSE: To investigate how parents of children with SMA who are treated with disease modifying therapies cope with hopes and worries relate … d the hope related to the effect af disease modifying therapies. At the same time, they experienced grief related to the uncertainty of the disease progression while hoping for normalcy in the future: a 'normal' child and a 'normal' life. Finally, they struggled with balancing professional counseling to maintain hope. CONCLUSIONS: The families need coo …

Лиминальное пространство между надеждой и горем: феномен неопределенности, испытываемый людьми, живущими с повторно излучающим множественный склероз.

СТРУКТУРА: Люди с хроническим заболеванием, страдающие множественным склерозом, подвергаются различной степени глубокой неопределенности. Неопределенность связана с неблагоприятными психологическими последствиями, такими, как чувство повышенной уязвимости, уклонение от принятия решений, страх, беспокойство, тревожное расстройство и даже депрессия. Исследования в области множественного склероза сосредоточены главным образом на научных, практических и психосоциальных вопросах неопределенности. Для сравнения, экзистенциальная неопределенность была недостаточно изучена, даже несмотря на то, что он

Совпадение в аннотации оригинала
BACKGROUND: People with the chronic disease Multiple Sclerosis are subjected to different degrees of profound uncertainty. Uncertainty has b … nce of uncertainty can be described as a stumbling motion across the liminal space between hope and grief while dealing with oscillating feelings of unrest concerning the body, self, and others. The following four constituents further illuminate the meaning of the phenomenon: Having to constantly (re)define unfamiliar and intangible bodily changes on on …

Ethical and Psychological Considerations for Posthumous-Assisted Reproduction for Adolescents and Young Adults With Poor Cancer Prognosis in the Context of Grief.

OBJECTIVE: Families or loved ones of adolescents and young adults (AYA) with a poor cancer prognosis who preserved fertility and did not survive treatment may choose to pursue posthumous assisted reproduction (PAR; i.e., use of preserved reproductive material for future family-building attempts). Decisions about PAR may be occurring in the context of grief and bereavement, which is associated with ethical and psychological considerations because grief can complicate a person's capacity for informed decision-making. METHODS: Through the use of a five-step ethical decision-making model, the Ame…

Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review.

The purpose of this mixed methods systematic review was to identify factors associated with anticipatory grief, post-death grief, and prolonged grief in informal carers of people living with Motor Neuron Disease (MND) to inform future research and practice. Six electronic databases were searched and two quantitative and eight qualitative studies were identified. Five overarching themes were generated through thematic synthesis. The findings suggest that there are factors that may affect different grieving processes. It might be particularly important to target some factors prior and after the …

A Latent Class Analysis on Symptoms of Prolonged Grief, Post-Traumatic Stress, and Depression Following the Loss of a Loved One.

BACKGROUND: The loss of a significant other can lead to variety of responses, including prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. The aim of this study was to replicate and extend previous research that indicated that three subgroups of bereaved individuals can be distinguished based one similar post-loss symptom profiles using latent class analysis (LCA). The second aim was to examine whether sociodemographic and loss-related characteristics as well as the extent of meaning making were related to classes with more pervasive psychopathology. METHODS…

From neurotic guilt to existential guilt as grief: the road to interiority, agency, and compassion through mourning. Part I.

This study proposes through a case illustration that psychoanalytic patients who can process both aggression and loss through a mourning process are able to free themselves from pathological self attack when the object relations work of attachment, psychic holding, and separation transpires. In the case of Helen discussed here, transformation through a "developmental mourning process" results in the evolution of powerful psychological capacities for interiority, self agency, and interpersonal compassion. This developmental mourning process is endowed with the assimilation and psychic fantasy s

From neurotic guilt to existential guilt as grief: the road to interiority, agency, and compassion through mourning. Part II.

This study is a continuation of an article that was published in the previous issue of The American Journal of Psychoanalysis (Volume 66, Number 3, September 2006). The case of Helen is illustrated in terms of the analysand's developmental mourning, countertransference, interiority, antilibidinal ego, and transformation of aggression into self-agency.

Factors Influencing Occupational Grief Among Pediatric Emergency and Intensive Care Unit Nurses in South China: A Cross-Sectional Study.

AIM: This study aimed to assess the level of occupational grief among pediatric emergency and intensive care unit nurses and identify the factors influencing it. DESIGN: Descriptive cross-sectional study. METHODS: Conducted from March to May 2024, the study included 265 pediatric nurses from 13 tertiary hospitals in South China. Data were collected via electronic questionnaires, which encompassed sociodemographic questions, the Chinese Version of the Grief Traits and State Scale for Nurses (GSSNs), the Disenfranchised Grief Scale (DGS), the Chinese Version of the Professional Grief Support S…

Long-term grief experiences of parents who lost a child to cancer - Results from a multicenter cross-sectional study.

BACKGROUND: Childhood cancer deaths may be associated with persistent parental grief. Evidence on grief symptoms beyond ten years post-loss remains limited. AIMS: We described grief symptoms, identified grief profiles, and examined associations between grief intensity and sociodemographic, cancer-related characteristics, and time since death. DESIGN: This multicenter cross-sectional survey was conducted in Switzerland (July 2022-July 2023). We used PG-13. Items were rated on a 5-point scale (1-5). We calculated the sum score to assess grief intensity (range 11-55). We employed descriptive st…

Prevalence, Correlates, and Psychiatric Burden of Prolonged Grief Disorder in U.S. Military Veterans: Results From a Nationally Representative Study.

OBJECTIVES: To examine the point prevalence and correlates of prolonged grief disorder (PGD) in a nationally-representative sample of United States (U.S.) veterans. METHODS: Data were analyzed from the National Health and Resilience in Veterans Study, a nationally representative study of 2,441 U.S. veterans. RESULTS: A total of 158 (weighted 7.3%) veterans screened positive for PGD. The strongest correlates of PGD were adverse childhood experiences, female sex, non-natural causes of death, knowing someone who died from coronavirus disease 2019, and number of close losses. After adjusting for…

Renal transplant failure and disenfranchised grief: participants' experiences in the first year post-graft failure--a qualitative longitudinal study.

BACKGROUND: Renal transplant failure has a devastating impact on patients and their families. However, little research has been conducted in … ct on all participants, regardless of time since transplantation and resulted in feelings of shock, grief, loss, anger, guilt and depression. Dialysis was disruptive and demanding and served as a constant reminder of transplant failure and lost freedom. Participants grieved the loss of their 'previous life' and 'imagined future' but, beyond the understa …

Virtual rescripting after loss using deepfake technology in prolonged grief treatment: a study protocol for a multiple baseline design.

Background: Prolonged grief disorder (PGD) is characterized by severe and persistent grief that impairs daily functioning. Cognitive behavioural therapy is the first-line treatment but yields only small-to-moderate effects. Imagery rescripting, which targets distressing loss-related memories, is increasingly used for PGD and related trauma complaints. Incorporating deepfake technology into imagery rescripting, i.e. virtual rescripting, may increase emotional engagement and facilitate processing of the loss, potentially improving treatment outcomes. However, this approach has not yet been empir…

Grief, bias, and vigilance: A holistic rural case of pediatric diabetic ketoacidosis unmasked through diagnostic insight-A case report.

Diabetic ketoacidosis (DKA) is a life-threatening complication of type 1 diabetes mellitus. In emotionally charged situations such as bereavement, symptoms may be misattributed to psychological distress, risking delayed diagnosis. We report a 12-year-old girl who presented to a rural primary health center (PHC) with lethargy, shortness of breath, and persistent crying following her grandmother's sudden death. The overlap of grief-related psychological distress and evolving metabolic symptoms created a diagnostic challenge, initially masking an underlying endocrine emergency. However, through c…

"I thought he had longer than that": family caregivers' experiences of grief, loss, and bereavement in residential aged care.

BACKGROUND: Residential aged care is increasingly becoming the final place of care for many older adults in high-income countries. For many families, grief begins well before the death of their loved one, emerging as early as the time of entry into residential care. This grief often continues as they witness ongoing decline and deterioration and extends into bereavement following the resident's death. While caregiver grief is well recognised, there is limited understanding of how these experiences unfold across this full journey and the specific challenges families face at each stage. This stu…

Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.

OBJECTIVE: To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease. METHODS: Seventy-five carers from the UK and USA participated in this cross-sectional study, between July 2021 and February 2023. Participants completed assessments on: anticipatory grief (MMCGI-SF, comprising three sub-scales: Personal Sacrifice Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation); person with MND (pwMND) behavioral changes (MiND-B) and disease severity (ALSFRS-R); carer-pwMND emotional bond (R…

'Every Woman Wants to Know What Came out of Her Body': Grief Experiences of Women After Stillbirth in Nigeria.

Stillbirth commonly affects women in Nigeria, but their experiences of grief following stillbirth is under explored. This study aimed to describe Nigerian women's experiences of grief after stillbirth. Face-to-face, semi-structured interviews were conducted with 20 women in Nigeria who experienced stillbirth. The results from the thematic analysis suggest that mothers had an unmet need to see their stillborn baby, and they experienced communication challenges such as being blindsided/misled about the baby during their interactions with health personnel. The participants experienced emotional a…

Adult separation anxiety in patients with complicated grief versus healthy control subjects: relationships with lifetime depressive and hypomanic symptoms.

BACKGROUND: Around 9% to 20% of bereaved individuals experience symptoms of complicated grief (CG) that are associated with significant distress and impairment. A major issue is whether CG represents a distinctive nosographic entity, independent from other mental disorders, particularly major depression (MD), and the role of symptoms of adult separation anxiety. The purpose of this study was to compare the clinical features of patients with CG versus a sample of healthy control subjects, with particular focus on adult separation anxiety and lifetime mood spectrum symptoms. METHODS: A total of…

Professional traumatic grief in neurosurgery: domains, red flags, and first-line support for trainees and surgeons, informed by a nursing framework.

OBJECTIVE: Complications and deaths are unavoidable in neurosurgery, and although their emotional impact on surgeons and trainees is increasingly recognized, distress, burnout, and silent attrition remain substantial. In parallel, fields such as nursing and psychology have developed rich frameworks for understanding and supporting professional grief, suggesting opportunities for collaboration. Herein, the authors aimed to 1) use a nursing-derived professional traumatic grief (PTG) framework to describe how this construct might manifest in neurosurgeons and neurosurgical trainees after major ad…

Quality of End-of-Life Care for Adolescent and Young Adult Patients with Cancer and Depression and Grief in Bereaved Families: A Secondary Analysis.

BACKGROUND: Adolescent and young adult (AYA) patients with cancer face numerous challenges, particularly at the end-of-life. However, little is known about how the patients and their families experience end-of-life care. OBJECTIVE: We aimed to compare the quality of end-of-life palliative care and the levels of depression and grief among bereaved families of AYAs and middle-aged patients with cancer, and to identify associated factors. METHODS: We conducted a secondary analysis of a nationwide mortality follow-back survey based on death certificates of patients who died from cancer in 2017 a…

Nurses' grief after patient loss: a cross-sectional study of coping strategies and emotional impact in a Nigerian tertiary hospital.

BACKGROUND: Nurses frequently develop close therapeutic relationships with patients and experience significant emotional distress when patients die. Despite extensive literature on caregiver burden in palliative care, there is limited data on how nurses in resource-constrained settings cope with grief and the downstream effects on their well-being and practice. This study aimed to examine grief coping strategies, emotional responses, and perceived mental health impacts among nurses following patient loss in a tertiary specialist hospital in Northern Nigeria. METHODS: We conducted a cross-sect…