Mai-Britt Guldin

• Aarhus University

Introduktion Tab og sorg bliver ofte betragtet som noget vi enten skal arbejde os igennem, komme videre fra eller lære at leve med. Disse idéer er opstået via teorier som har formet vores forståelse af hvad tab og sorg betyder i et menneskeliv. Alle de dominerende teorier om sorg er opstået indenfor bestemte discipliner eller teoriretninger og foku...

Background Incurable cancer is a major contributor to societal suffering and disability, and palliative rehabilitation is recommended to be integrated within and between cancer services at all healthcare levels. However, little knowledge exists on how integration of palliative rehabilitation in cancer is understood and achieved in clinical practice...

Background Caring for a family member can be demanding, particularly when caregivers experience profound distress. Supportive interventions may help prevent mental and physical illness in the caregiver. General practice plays a key role by regularly engaging with patients and caregivers, thereby being able to identify their support needs, offer tal...

This chapter discusses integrating grief support and spiritual care in palliative care. It explores the existential dimension of grieving and focuses on the process of loss both patients and families are going through. First, the state of the art of grief research is sketched, and some reasons are given why until now the existential dimension of lo...

Knowledge about effective coping strategies is important to support bereaved adolescents who have lost a parent. We used data on 104 bereaved adolescents (13-17 years) from the FALCON nationwide questionnaire study of parentally bereaved families. We examined associations between adolescents' control-oriented and escape-oriented coping strategies (...

Background: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-...

Background Experiencing the illness and death of a child is a traumatic experience for the parents and the child’s siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. Aim We aimed to synthesize the empirical literature regarding...

Despite the vast developments in research on loss and grief, dominant grief models fall short in reflecting the comprehensive issues grieving persons are facing. Three causes seem to be at play: grief is usually understood to be connected to death and other types of loss are under-researched; the majority of research is done from the field of psych...

Background Improving the organisational aspects of the delivery of palliative care in order to support patients throughout their disease trajectory has received limited attention. Aim To investigate the opportunities and barriers related to organising palliation for people with terminal cancer and their families. Methods An explorative interview...

Purpose: WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes...

This article explores how bereaved individuals co-construct social support and social norms in the social interaction of 14 bereavement group meetings in Denmark. To study this, we used a discourse analytical approach focusing on how the participants position their social supporters. The results show that the participants designate, uphold, and pre...

Background Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of l...

Difficulties in recruiting newly bereaved families and following them over time present a major barrier in grief research following the death of a spouse/parent. We established FALCON-the first prospective nationwide cohort of families with children below age 18 years whose parent died in Denmark between April 2019 and July 2021. Data from parents...

Background The Domus study, a randomized controlled trial (RCT), evaluated the effect of home-based specialized palliative care (SPC) reinforced with a psychological intervention for the patient-caregiver dyad on increasing advanced cancer patients’ time spent at home, as opposed to hospitalized, and the number of home deaths. As palliative care ex...

Resumen Objetivo: El objetivo de este trabajo es describir y comparar el tipo y las características de atención al duelo en Europa y España, así como actualizar e identificar avances en España con el fin de mejorar la atención al duelo. Método: Estudio observacional, descriptivo, prospectivo y comparativo. Realizado a partir de los datos del grupo...

Background Relatives of terminally ill patients most often experience distress. Advance Care Planning (ACP) has been developed to plan end-of-life care and support patients and relatives. ACP has been shown to have a positive impact on relatives of terminally ill patients and may affect their healthcare-seeking behaviour. The aim of the study was t...

Context The Danish health care system provides palliative care for terminally ill patients and their family caregivers. However, initiatives to support family caregivers are not systematically organized. Objectives We aimed to examine the association between self-reported experience of missing contact to health care professionals involved in palli...

PurposeThe Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I.Methods Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of...

Background The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim The aim of...

What is already known about the topic? • • Previous studies show a lack of consensus about appropriate bereavement support in palliative care, hence, a rigorous approach to agreeing and implementing a bereavement framework was required. What this paper adds? • • A Delphi study achieved consensus on a set of best-practice recommendations for bereave...

The psychological consequences of losing a parent to cancer are unclear. We investigated whether experiencing parental death to cancer before 18 years of age increases the risk of psychotropic medication. We used register data of all children born in Denmark between 1 January 1987 and 31 December 2016 (N = 1,488,846). We assessed rate ratios (RRs)...

PurposeDepression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mor...

Background: Functional impairment is essential in the diagnostic criteria for prolonged grief disorder (PGD) in the ICD-11. It refers to the negative impact on everyday life, including inability to maintain the usual level of functioning. We aimed to assess the extent of functional impairment, emotion-related role limitation, and impaired social fu...

Background The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking. Aim To describe physical and mental health status in caregivers of patients at the end of life, and to invest...

Background Family caregivers to patients who are severely ill have high use of primary health care and psychotropic medication. However, it remains sparsely investigated whether healthcare services target the most vulnerable caregivers. Aim This study aimed to examine associations between family caregivers’ grief trajectories of persistent high-gr...

Specialised palliative care trials often fail to address intervention effects on caregiver anxiety and depression, particularly in bereavement. We evaluate effects of specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression in a randomised controlled trial (RCT). Patients with incurable cancer and limite...

Objective Specialized palliative care (SPC) interventions increasingly include patient–caregiver dyads, but their effects on dyadic coping are unknown. We investigated whether an SPC and dyadic psychological intervention increased aspects of dyadic coping in patients with advanced cancer and their caregivers, whether dyad characteristics moderated...

Background: Most individuals adjust to the loss of a close person, but some experience adverse grief that challenges everyday life. No previous study has examined the development of grief symptoms in trajectories over time. We aimed to investigate trajectories of grief symptoms in bereaved partners and non-partners of severely ill patients startin...

Purpose Losing a loved one to death is a common and natural life-course experience. Still, bereavement has been associated with an increased risk of suicidal behavior and psychiatric hospitalization and little is known of how to counter these adverse events. We aimed to study the effect of early treatment in primary care with talk therapy (TT) or a...

Background: Mental stress is associated with higher mortality, but it remains controversial whether the association is causal or a consequence of a higher physical disease burden in those with a high mental stress load. Understanding causality is important when developing targeted interventions. We aimed to estimate the effect of mental stress on...

The loss of a close relative is a common event, yet it is associated with increased risk of serious mental health conditions. No large-scale study has explored up to now the importance of the bereaved person's relation to the deceased while accounting for gender and age. We performed a nationwide Danish cohort study using register information from...

Background Caregiving is strenuous and it may be associated with adverse psychological outcomes. During the palliative care trajectory, there are unique opportunities for providing support and preventing poor bereavement outcome. However, the tasks of palliative care staff in relation to caregivers are often unclear in the daily practice. Assessmen...

Objective: Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for pat...

Objective: Severe grief symptoms in family caregivers during end-of-life cancer trajectories are associated with complicated grief and depression after the loss. Nevertheless, severe grief symptoms during end-of-life caregiving in caregivers to cancer patients have been scarcely studied. We aimed to explore associations between severe pre-loss gri...

Context: Complicated grief and depressive symptoms in bereaved caregivers have been associated with female gender, spousal relation and pre-loss psychological distress, but population-based, prospective studies are scarce. Objectives: We aimed to investigate whether severe pre-loss grief and depressive symptoms, caregiver burden, preparedness fo...

Context: Timely recognition of the terminal phase of life will benefit patients and caregivers as it may facilitate advance care planning and support. Objectives: To investigate the remaining lifetime of patients entering a physician-assessed terminal phase and to analyse variation in remaining lifetime according to diagnosis and socio-demograph...

Er mennesket grundlæggende styret af fornuft eller følelse? Det ældgamle spørgsmål: Er følelser konstruktive størrelser eller uhensigtsmæssige forstyrrelser i et menneskeliv? Hvordan beriger følelserne vores liv, og spiller de en rolle i vores sundhed og sygdom? . I Jane Austens roman Fornuft og følelse, som finder sted i den engelske overklasse i...

Purpose: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been conducted in specialized palliative care settings. Therefore, caregiver studies with a population-bas...

Background: Scientific models to explain bereavement and plan interventions have developed over 25 years. The extent to which these developments are implemented by services is unknown. Aims: To describe bereavement care planning in palliative care. Specifically to determine: How is need for bereavement care identified Who makes decisions about supp...

Objective: Caregivers of terminally ill patients may experience anticipatory grief or low levels of preparedness for the patient's impending death. Both concepts are related to a forewarning of the impending loss. Anticipatory grief has been suggested to be grief work before the loss, which would improve bereavement outcome, but recent studies ind...

Importance Parental death from suicide is associated with increased risk of suicide in the bereaved child, but little is known about the long-term risks of suicide after parental death from other causes. A better understanding of this association may improve suicide prevention efforts.Objective To examine the long-term risks of suicide after pare...

The Bereavement Care Taskforce of the EAPC has conducted a survey on bereavement care service provision in Europe. Mai-Britt guldin, irene Murphy, Orla keegan, Barbara Monroe, Maria Antonia lacasta reverte and inger Benkel report on the results. One of the key findings is that not all palliative care services seem to prioritise bereavement care as...

Recent studies have suggested that stress in a pregnant mother may affect the future health of the unborn child negatively. An excellent proxy for health problems is the use of healthcare resources. Using nationwide data, we examined whether persons born to mothers who lost a close relative during pregnancy have more contacts to general practice. P...

The philosophy of palliative care recognizes that end-of-life care impacts the whole family. Consequently, palliative care involves support for the family during illness and after the patient's death. Until recently, no clinical guidelines on bereavement support existed in palliative care. Little is known about the extent of bereavement follow-up p...

Objective: Bereavement is likely to result in an increased healthcare utilization. However, little is known about the impact of bereavement on an entire healthcare system, and there is no knowledge of what bereavement requires in terms of healthcare planning. Improved knowledge of patterns of healthcare utilization during bereavement may help opti...

Background: The burden of caregiving can have various negative consequences. There is a need for health professionals to be able to measure the burden of caregiving among relatives of end-stage cancer patients in a valid way. The Burden Scale for Family Caregivers (BSFC) has 28 items and was developed as a clinical tool for measuring the self-repo...

Background. The loss of a loved person may lead to complicated grief (CG). General practitioners (GPs) consider bereavement care to be important but find training for this task to be insufficient. We hypothesized that improvement in skills that facilitate early identification of CG and enhance GPs' clinical care may reduce adverse health outcomes.A...

There is little research on complicated grief (CG) in family caregivers in palliative care. The aim of the study was to assess the levels of complicated grief and depression in family caregivers after the death of a relative with cancer, to identify their need for support, to compare the palliative team staff's risk assessment of the relatives' gri...

Bereavement is a condition which most people experience several times during their lives. A small but noteworthy proportion of bereaved individuals experience a syndrome of prolonged psychological distress in relation to bereavement. The aim of the study was to develop a clinical tool to identify bereaved individuals who had a prognosis of complica...

The aim of this study was to assess the factorial structure of complicated grief (CG) and investigate the relationship between CG and posttraumatic stress disorder (PTSD) through the assessment of models combining both constructs. The questionnaire was completed by elderly, married respondents with a history of at least one significant, interperson...

Sorg er et eksistentielt livsvilkår de fleste mennesker gennemlever flere gange i deres liv. I de fleste tilfælde er sorg pinefuld om end ikke udtryk for psykopatologi. Teoretikere har beskæftiget sig med fænomenet sorg gennem det seneste århundrede. Teorierne handler om beskrivelsen af sorgreaktionen, hvordan forskellige personligheder håndterer s...