Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary-4 Dimensional, a mixed-methods study.

Background: The Utrecht Symptom Diary-4 Dimensional (USD-4D), an adaptation of the Edmonton Symptom Assessment System, supports healthcare providers (HCPs) in identifying, monitoring, and exploring multidimensional symptoms and needs of patients in the palliative phase. For the USD-4D to be optimally implemented in clinical palliative care, it is essential to know and understand the needs of HCPs when using it.

Objective: To identify and interpret the needs of HCPs when using the USD-4D in clinical palliative care, operationalized as perceived facilitators and barriers.

Fostering a Trusting Relationship With Family in Dementia Special Care Units: A Participatory Action Research Project.

Aim: To explore experiences of nursing home staff in implementing self-designed interventions to foster trusting relationships with family in practice.

Design: This qualitative study used a Participatory Action Research approach.

Methods: Data collection included focus groups (n = 15), interviews (n = 28) and observations (n = 5).

The Spiritual Dimension of Parents' Experiences Caring for a Seriously Ill Child: An Interview Study.

Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective.

'It is important to feel invited': what patients require when using the Utrecht Symptom Diary - 4 Dimensional, a qualitative exploration.

Background: In palliative care, the Utrecht Symptom Diary - 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients' autonomy, it is essential to know what patients need to use it.

Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care.

COVID-19 as a Crisis of Confinement: What We Can Learn From the Lived Experiences of People With Intellectual Disabilities in Care Institutions.

While the COVID-19 crisis has affected people all around the world, it has not affected everyone in the same way. Besides glaring international differences, disparities in personal and situational factors have resulted in strikingly dissimilar effects even on people within the same country. Special attention is required in this regard for people with intellectual disabilities (ID) who are vulnerable to marginalization and precarization during crises as concerns over safety and public health are likely to trump consideration for inclusion and care.

How to provide existential and spiritual support to people with mild to moderate dementia and their loved ones. A pilot study.

Background: People with mild to moderate dementia and their loved ones may experience strong existential and spiritual challenges due to the disease. People with dementia could therefore benefit greatly from ongoing conversational support. Within the literature and in supportive practice, there are very few tools that help professionals provide this type of support.

The Impact of Hospice Care Structures on Care Processes: A Retrospective Cohort Study.

Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care.

The Undercommons of Childbirth and Their Abolitionist Ethic of Care. A Study into Obstetric Violence Among Mothers, Midwives (in Training), and Doulas.

Engaging in dialogue with critical mothers, midwives, midwives in training, and doulas in the Netherlands, this study furthers the theoretical understanding of both obstetric violence and the activist resistance against it. Obstetric violence is understood as part of a process of relational separation, leaving the pregnant person isolated. The activist resistance against it is consequently theorized as the abolitionist building of an alternative "otherworld" of radical relational care.

Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

Unlabelled: The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents.

Better spiritual support for people living with early stage dementia: Developing the diamond conversation model.

Background: People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support.

The integrated process model of loss and grief - An interprofessional understanding.

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 psychology and on pathological forms of grief, hardly integrating research from other disciplines; and the existential suffering related to grief is not recognized or insufficiently integrated in the dominant models. In this paper, we propose an integrated process model (IPM) of loss and grief, distinguishing five dimensions of grief: physical, emotional, cognitive, social, and spiritual.

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.

Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals.

Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care.

Family involvement in dementia special care units in nursing homes: A qualitative care ethical study into family experiences.

Aim: To explore the moral dimension of family experiences with being involved in the care of their loved one with dementia in the nursing home, using the care ethical framework of Tronto.

Design: This qualitative study used a care ethical approach in which empirical data and care ethical theory were dialectically related and mutually informing.

Methods: Fifteen close family members of nursing home residents with dementia were interviewed between February 2020 and October 2020.

Nursing assistants' perceptions and experiences with the emotional impact of providing palliative care: A qualitative interview study in nursing homes.

Aim: To gain insight into the perceived emotional impact of providing palliative care among nursing assistants in Dutch nursing homes, their strategies in coping with this impact and associated needs.

Design: Exploratory qualitative study.

Methods: In 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted.

Questioning the value of present life: The lived experience of older people who see no future for themselves.

Objectives: To describe the lived experience of older people who see no future for oneself in the context of aging and the possible development of a wish to die.

Methods: Data were collected from 34 interviews with people of 55-92 years. A phenomenological hermeneutical analysis was performed using crafted stories as an analytical device.

Role-Perceptions of Dutch Spiritual Caregivers in Implementing Multidisciplinary Spiritual Care: A National Survey.

Background: During the course of their disease, patients are, apart from suffering physical discomfort, also confronted with psychological, social, and spiritual challenges. However, healthcare professionals often lack the knowledge and skills to address the spiritual dimension and are in need of support for taking this responsibility. Spiritual caregivers are experts in spiritual care, but their contribution to the integration of this care by other healthcare professionals is largely unknown.

Hospice Care Access: a national cohort study.

Objectives: Hospice care in the Netherlands is provided in three different types of hospice facilities: volunteer-driven hospices (VDH), stand-alone hospices (SAHs) and hospice unit nursing homes (HU). The organisational structures range from care directed by trained volunteers in VDH to care provided by multiprofessional teams in SAH and HU units.This study aims to characterise the patient populations who access Dutch hospices and describe the patient profiles in different hospice types.

Identifying, exploring and integrating the spiritual dimension in proactive care planning: A mixed methods evaluation of a communication training intervention for multidisciplinary palliative care teams.

Background: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans.

Aim: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans.

[Physician-assisted dying at home in the Netherlands: what do general practitioners face? An qualitative interview study].

Objective: To explore what Dutch general practitioners (GPs) need and what their felt responsibilities and considerations are during (decision-making for) physician assisted dying (PAD) in the context of palliative care in the home-setting.

Design: A qualitative interview study was performed as part of a larger interview-study exploring the experiences of patients, relatives, and other care-professionals with PAD.

Method: Purposive sampling was adopted to select eleven GPs with experience in end-of-life decision-making and with sufficient variety on the domains of age, gender, work setting and additional expertise.

[Unintended pregnancy with complex problems: how can we prevent this?].

General practitioners (GP's) are confronted with patients with complex psychosocial problems that run the risk of having unintended and unwanted pregnancies. This raises two questions: 1) to what extend do GP's have the right to enter the private sphere of patients in order to discuss whether they should have children? And 2) how can such a conversation be successful? Based on a case, in this contribution we argue that GP's can play an important role in sustaining the autonomy of patients with complex problems and we provide suggestions on how to start a conversation about this topic. The contribution ends by sketching how GP's can get support in situations like this by a governmental national program Nu Niet Zwanger (Not Pregnant Now), that supports health care professionals in sustaining the autonomy of vulnerable groups in choices around pregnancy and contraception.

Clinicians' perceptions of the emotional impact of providing palliative care: A qualitative interview study.

Objectives: Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed.

Family involvement in nursing homes: an interpretative synthesis of literature.

Background: Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice.

Aim: To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home.

Spiritual conversation model for patients and loved ones in palliative care: a validation study.

Objectives: In palliative care, validated tools for professionals that facilitate day-to-day spiritual conversations with patients and loved ones are scarce. The objective of this study was to validate the Diamond spiritual conversation model across different palliative care settings as well as professional and educational levels.

Methods: An online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings.