Communication about incurable illness and remaining life between spouses and patients with incurable illness receiving specialized home care: effects of a family caregiver-targeted web-based psycho-educational intervention.

Background: Web-based interventions targeted at family caregivers has become a quickly expanding research field, none the least since a growing number of patients with incurable illness are being cared for at home. Spouses, who are also family caregivers, constitute an especially vulnerable group in need of support when they are cohabitating with the ill patient and research shows that communication regarding the illness is important, yet challenging. This study therefore explored effects of a family caregiver-targeted web-based psycho-educational intervention on communication about incurable illness and remaining life between spouses and patients receiving specialized home care.

Being between life and death-experiences of COVID-19 survivors 12 to 18 months after being treated in intensive care.

Purpose: This study aims to explore the experiences of care, psychosocial support, and psychosocial wellbeing among patients treated for COVID-19 in intensive care 12 to 18 months after discharge.

Methods: This study used a qualitative approach with a descriptive design. Semi-structured interviews were performed with 20 adult patients treated for COVID-19 12 to 18 months after being discharged from a university hospital in Sweden.

The Family Talk Intervention Among Families Affected by Severe Illness: Hospital Social Workers' Experiences of Facilitators and Barriers to its Use in Clinical Practice.

Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study.

Place of care and death preferences among recently bereaved family members: a cross-sectional survey.

Objectives: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members' preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person's preferred place of death and involvement in decision-making about care.

Methods: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses.

Results: Of the 485 participants, 70.

Critical care nurses' experiences of ethical challenges in end-of-life care.

Background: In Swedish intensive care units, nine percent of patients do not survive despite receiving advanced life-sustaining treatments. As these patients transition to end-of-life care, ethical considerations may become paramount.

Aim: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context.

Patient experiences of randomised placebo-controlled trial participation during end-of-life palliative cancer care.

Background: Performing clinical trials in palliative cancer care is known to be challenging.

Objective: This study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo-controlled trial while receiving palliative cancer care at end of life.

Method: A descriptive design with a qualitative approach was used.

Family caregivers' experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention - A qualitative study.

Purpose: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods: The study used an inductive qualitative descriptive design based on framework analysis.

Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness.

Posttraumatic Growth After Struggling With the Loss of a Parent in Young Adulthood.

This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5-8 months after the loss and at a 6-month follow-up, about 14-18 months after the loss.

Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention.

Objectives: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges.

Objectives: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

Methods: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics.

Web-based support for spouses of patients with life-threatening illness cared for in specialized home care - A feasibility study.

Objectives: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

Enabling professional and personal growth among home care nurses through using the Carer Support Needs Assessment Tool Intervention-An interpretive descriptive study.

Aim: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention.

Background: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice.

Grief reactions in relation to professional and social support among family members of persons who died from sudden cardiac arrest: A longitudinal survey study.

Background: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symptoms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its association with professional and social support among bereaved family members after a close person's death from sudden CA.

Methods: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support.

Registered nurses' experiences of caring for patients in hospitals transitioning from curative to palliative care: A qualitative study.

The aim of this study was twofold: to illuminate registered nurses' experiences of palliative care and of caring for patients transitioning from curative to palliative care in hospitals. A qualitative descriptive design was used. Group interviews were conducted with 11 registered nurses in three different hospital settings.

Factors Associated With Symptoms of Prolonged Grief and Psychological Distress Among Bereaved Family Members of Persons Who Died From Sudden Cardiac Arrest.

Background: Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with an increased risk of prolonged grief disorder and psychological distress.

Objectives: The aims of this study were (1) to explore the associations between symptoms of prolonged grief and psychological distress and (2) to identify factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest.

Methods: This cross-sectional survey included bereaved adult family members.

A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation-a feasibility study.

Purpose: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.

Methods: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process.

Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care.

Objective: The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history.

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation.

Objective: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers' preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time.

A survey study of family members' encounters with healthcare services within the care of older people, psychiatric care, palliative care and diabetes care.

The aim of this study was to describe and compare family members' experiences of approach in encounters with healthcare professionals and possible feelings of alienation in the professional care within four care contexts: the care of older people, psychiatric care, palliative care and diabetes care. The design was an explorative cross-sectional survey study. Data were collected in Sweden using the Family Involvement and Alienation Questionnaire-Revised (FIAQ-R).

Psychotropic medication use in parents of survivors of adolescent cancer: A register-based cohort study.

Background: The aim was to investigate psychotropic medication use in parents of survivors of adolescent cancer from the acute post-diagnostic phase and up to 2 years following the cancer diagnosis.

Methods: This study had a nationwide register-based cohort design comparing psychotropic medication use in parents of adolescent survivors of cancer (n = 2323) to use in parents of cancer-free controls (n = 20,868). Cox proportional hazards models, adjusted for cancer diagnostic group, parents' age, country of birth, education level, marital status and previous mental health problems estimated the risk of use from the time of the cancer diagnosis up to 2 years later.

How parents of dependent children reason about their partner's impending death due to cancer.

This paper explores how bereaved parents with dependent children reasoned about their partner's impending death due to cancer. Questionnaires were used to collect data from 42 cancer-bereaved parents of dependent children in Sweden. The results showed that most of the parents had thought, at least once, that death would be best for their partner's own sake.

Higher Self-Esteem Associated With Less Symptoms of Anxiety and Depression Among Young Adults After the Loss of a Parent to Cancer-A Longitudinal Study.

The purpose of the study was to examine associations between self-esteem and symptoms of anxiety and depression among young adults who lost a parent to cancer. Older adolescents and young adults, aged 16 to 28 years, who had lost their parent to cancer and had accepted an invitation to join a support group, completed a questionnaire 5 to 8 months after the loss and a similar questionnaire about 10 months later (follow-up). Of a total of 77 young adults who participated in the study, 56 completed both questionnaires.

Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care.

Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care.

Intensity of Predeath Grief and Postdeath Grief of Family Caregivers in Palliative Care in Relation to Preparedness for Caregiving, Caregiver Burden, and Social Support.

The intensity of predeath grief is associated with postdeath grief in family caregivers of patients in palliative care. Different factors during caregiving may influence this association. To examine (1) the intensity of grief in relation to preparedness for caregiving, caregiver burden, and social support, and (2) if these variables moderate associations between predeath and postdeath grief.