Despite the vast developments in research on loss and grief, dominant grief models fall short in ... more 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 underresearched; 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 integrated process model integrates therapies, tools, and models within different scientific theories and paradigms to connect disciplines and professions. The comprehensive and existential understanding of loss and grief has relevance for research, clinical settings and community support.
ObjectivesIn palliative care, validated tools for professionals that facilitate day-to-day spirit... more ObjectivesIn 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.MethodsAn online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings. The five polarities of the Diamond model: holding on–letting go, doing–undergoing, remembering–forgetting, me–the other and believing–knowing were operationalised and evaluated on reported occurrence.ResultsIn conversations with patients, palliative care professionals reported letting go of loved ones (81.8%), dealing with pain and suffering (88.1%), dealing with issues from the past (67.2%), dealing with own versus loved one’s wishes (69.4%) and giving meaning to death (66.7%) as themes occurring regular...
Background People with mild to moderate dementia and their loved ones may experience strong exist... more 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. Professionals may therefore be unaware of, or uncertain of, how support can be given. Objective To develop and test support approaches that may enable professionals to better conduct conversations with attention for existential and spiritual issues. Methods Participatory action research was conducted with dementia care professionals who spoke to 62 clients and 36 loved ones. Research consisted of two cycles of analyzing support, formulating strategies to try, testing and reflecting on the success of these actions and formulating new ones. The Diamond model for existential and spiritual issues regarding mild to moderate dementia, developed in previous research, was used as a framework.
Background: Spirituality refers to the dynamic dimension of human life that relates to the way th... more 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. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents’ perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
The concept of dignity is notoriously vague. In this paper it is argued that the reason for this ... more The concept of dignity is notoriously vague. In this paper it is argued that the reason for this is that there are three versions of dignity that are often confused. First we will take a short look at the history of the concept of dignity in order to demonstrate how already from Roman Antiquity two versions of dignity can be distinguished. Subsequently, the third version will be introduced and it will be argued that although the three versions of dignity hang together, they should also be clearly distinguished in order to avoid confusion. The reason for distinguishing the three versions is because all three of them are only partially effective. This will be demonstrated by taking the discussion about voluntary 'dying with dignity' as an example. Inspired by both Paul Ricoeur's concept of ethics and the ethics of care a proposition will be done as to how the three versions of dignity may sustain each other and help achieve what neither one of the versions can do on its own.
Based on our empirical research on global meaning in people with spinal cord injury and people wi... more Based on our empirical research on global meaning in people with spinal cord injury and people with stroke, we formulated 'inner posture' as a concept in rehabilitation. Inner posture, as we concluded from our empirical data, refers to the way in which people bear what cannot be changed. It helps them to live with their injury. Considering that much has already been written about meaning from a variety of disciplines, the question arises whether the concept of inner posture adds something new to the existing literature, or is just another name for a phenomenon that has already been described before in different terms. In this paper, we aim to investigate this and to clarify our conceptualization, by comparing the concept of inner posture with influential concepts in healthcare literature which seem to be more or less related. In the work of Puchalski regarding spirituality, Pargament regarding religion, Eliott regarding hope and Frankl regarding attitude, we found definitions and descriptions that seemed to come close to the phenomenon we refer to as inner posture. Because these concepts have various theoretical backgrounds, the comparison can help to better understand our concept of inner posture, through a process of dialogue between traditions, following Gadamer's notion of dialogue as fusion of horizons of understanding. We conclude that inner posture differs from the other concepts in several ways. Some of these differences are more fundamental, other are partial. This suggests that we identified a new perspective on a phenomenon partially described earlier. The comparison also inspired us to slightly adjust our definition and to formulate new research questions.
Chronic cardiovascular diseases (CVD) are diseases with marked morbidity. Patients are often advi... more Chronic cardiovascular diseases (CVD) are diseases with marked morbidity. Patients are often advised to change their lifestyle to prevent complications and impairment of their diseases. Compliance, however, is influenced by multiple factors. Initial studies show that spirituality is an important aspect in health behavior and lifestyle changing, but to health professionals like nurses this is unknown. The aim of this review is to investigate and synthesize evidence about the role of spirituality in lifestyle changing in patients with chronic CVD. A comprehensive search was conducted in electronic databases Academic Search Premier, E-journals, Medline and PubMed, published between the years 2000-2015. After selection based on pre-set inclusion criteria, studies were retrieved and evaluated on quality using the criteria of the QOREC. Twelve studies with a qualitative empirical design and mixed methods were included. This review shows that spirituality, is related to the self-management of patients with chronic diseases. For instance, lifestyle changes are experienced as a continuous inner battle. Religion gives strength, but is also experienced as a struggle. Feelings of guilt and becoming a victim influence patients' experience. For effectively advising patients with CVD on lifestyle changes, nurses cannot ignore this factor but further investigation is required.
Achtergrond van het onderzoek Onder artsen bestaat terughoudendheid over euthanasie bij wilsonbek... more Achtergrond van het onderzoek Onder artsen bestaat terughoudendheid over euthanasie bij wilsonbekwame patienten met dementie op basis van een schriftelijke euthanasieverklaring. Een van de redenen hiervoor is dat de situatie van gevorderde dementie de mogelijkheid tot betekenisvolle communicatie en gezamenlijke besluitvorming beperkt, terwijl artsen dit juist als noodzakelijk ervaren. Dit heeft geleid tot een groeiende behoefte aan houvast hoe om te gaan met dit dilemma. Inhoud van het DALT-project Er wordt gebruik gemaakt van een combinatie van diverse onderzoeksmethoden, waaronder vragenlijstonderzoek, interviews, een literatuurstudie van de juridische, rechtstheoretische en ethische literatuur en een Delphi-studie naar de toepasbaarheid van de zorgvuldigheidsvoorwaarden bij wilsonbekwame patienten met dementie. De doelstelling van het onderzoek is een handreiking voor het zorgvuldig omgaan met euthanasieverklaringen van wilsonbekwame patienten met dementie. Relevantie voor de praktijk In dit onderzoek zal de focus voornamelijk liggen op concrete casuistiek, met daarbij aandacht voor het perspectief van de arts. Het onderzoek beoogt de verbinding te maken tussen de resultaten van (fundamenteel) rechtstheoretisch en ethisch onderzoek en de dagelijkse praktijk.
While the COVID-19 crisis has affected people all around the world, it has not affected everyone ... more 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. This article explores the lived experiences during the pandemic of people with ID living in care institutions in the Netherlands. Particular attention is paid to the challenges involved in living through periods of confinement and separation in what may be called “vulnerable spaces.” Drawing from interviews with individuals with a mild ID who have been restricted in seeing family and friends through the closed access of group homes to visits from outsiders, as well as interviews with their relatives and support workers, the article considers the ways in which stakeholders have responded to these spatial policies and negotiated the meaning of living space in times of crisis.
hoogleraar zorgethiek en geestelijk begeleidingswetenschappen; bijzonder hoogleraar ethische en s... more hoogleraar zorgethiek en geestelijk begeleidingswetenschappen; bijzonder hoogleraar ethische en spirituele vragen in de palliatieve zorg vanuit de Associatie van Highcare Hospices; vicepresident European Association for Palliative Care Samenvatting Spirituele zorg is een essentieel deel van palliatieve zorg en een groeiend terrein van wetenschappelijk onderzoek. In 2010 verscheen in Nederland de eerste consensus-based richtlijn op dit terrein, die uitgangspunt is voor deze bijdrage. Volgens de richtlijn is spirituele zorg een opdracht voor alle disciplines, waarbij de geestelijk verzorger als de inhoudelijk deskundigste beschouwd wordt. Alle disciplines kunnen hun bijdragen leveren op de niveaus van (A) aandacht, (B) Begeleiding en (C) Crisisinterventies. Daarvoor worden eenvoudige instrumenten aangereikt die helpen het gesprek te openen, betekenislagen te onderscheiden en om te gaan met hoop in de palliatieve zorg.
AimTo gain insight into the perceived emotional impact of providing palliative care among nursing... more AimTo 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.DesignExploratory qualitative study.MethodsIn 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted. Participants were recruited via personal networks and social media. Interviews were open‐coded by three independent researchers following the thematic analysis approach.ResultsThree themes emerged regarding the elements that contribute to the emotional impact of providing palliative care in nursing homes: impactful situations (e.g. witnessing suffering and sudden deaths), interactions (e.g. close relationship and receiving gratitude) and reflection on provided care (e.g. feeling fulfilment or feeling inadequate in caring). Nursing assistants used different strategies to cope, including emotional processing activities, their attitude towards death and work and gaining experience. Participants experienced a need for more education in palliative care and organized peer group meetings.ConclusionElements that play a role in how the emotional impact of providing palliative care is perceived by nursing assistants can have a positive or negative impact.Implications for the Profession and/or Patient CareNursing assistants should be better supported in coping with the emotional impact of providing palliative care.ImpactIn nursing homes, nursing assistants are most involved in providing daily care to residents and have a signalling role in recognizing the deteriorating conditions of residents. Despite their prominent role, little is known about the emotional impact of providing palliative care among these professionals. This study shows that although nursing assistants already undertake various activities to reduce the emotional impact, employers should be aware of the unmet needs in this area and the responsibility they have in this regard.Reporting MethodThe QOREQ checklist was used for reporting.Patient or Public ContributionNo patient or public contribution.
Despite the vast developments in research on loss and grief, dominant grief models fall short in ... more 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 underresearched; 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 integrated process model integrates therapies, tools, and models within different scientific theories and paradigms to connect disciplines and professions. The comprehensive and existential understanding of loss and grief has relevance for research, clinical settings and community support.
ObjectivesIn palliative care, validated tools for professionals that facilitate day-to-day spirit... more ObjectivesIn 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.MethodsAn online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings. The five polarities of the Diamond model: holding on–letting go, doing–undergoing, remembering–forgetting, me–the other and believing–knowing were operationalised and evaluated on reported occurrence.ResultsIn conversations with patients, palliative care professionals reported letting go of loved ones (81.8%), dealing with pain and suffering (88.1%), dealing with issues from the past (67.2%), dealing with own versus loved one’s wishes (69.4%) and giving meaning to death (66.7%) as themes occurring regular...
Background People with mild to moderate dementia and their loved ones may experience strong exist... more 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. Professionals may therefore be unaware of, or uncertain of, how support can be given. Objective To develop and test support approaches that may enable professionals to better conduct conversations with attention for existential and spiritual issues. Methods Participatory action research was conducted with dementia care professionals who spoke to 62 clients and 36 loved ones. Research consisted of two cycles of analyzing support, formulating strategies to try, testing and reflecting on the success of these actions and formulating new ones. The Diamond model for existential and spiritual issues regarding mild to moderate dementia, developed in previous research, was used as a framework.
Background: Spirituality refers to the dynamic dimension of human life that relates to the way th... more 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. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents’ perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
The concept of dignity is notoriously vague. In this paper it is argued that the reason for this ... more The concept of dignity is notoriously vague. In this paper it is argued that the reason for this is that there are three versions of dignity that are often confused. First we will take a short look at the history of the concept of dignity in order to demonstrate how already from Roman Antiquity two versions of dignity can be distinguished. Subsequently, the third version will be introduced and it will be argued that although the three versions of dignity hang together, they should also be clearly distinguished in order to avoid confusion. The reason for distinguishing the three versions is because all three of them are only partially effective. This will be demonstrated by taking the discussion about voluntary 'dying with dignity' as an example. Inspired by both Paul Ricoeur's concept of ethics and the ethics of care a proposition will be done as to how the three versions of dignity may sustain each other and help achieve what neither one of the versions can do on its own.
Based on our empirical research on global meaning in people with spinal cord injury and people wi... more Based on our empirical research on global meaning in people with spinal cord injury and people with stroke, we formulated 'inner posture' as a concept in rehabilitation. Inner posture, as we concluded from our empirical data, refers to the way in which people bear what cannot be changed. It helps them to live with their injury. Considering that much has already been written about meaning from a variety of disciplines, the question arises whether the concept of inner posture adds something new to the existing literature, or is just another name for a phenomenon that has already been described before in different terms. In this paper, we aim to investigate this and to clarify our conceptualization, by comparing the concept of inner posture with influential concepts in healthcare literature which seem to be more or less related. In the work of Puchalski regarding spirituality, Pargament regarding religion, Eliott regarding hope and Frankl regarding attitude, we found definitions and descriptions that seemed to come close to the phenomenon we refer to as inner posture. Because these concepts have various theoretical backgrounds, the comparison can help to better understand our concept of inner posture, through a process of dialogue between traditions, following Gadamer's notion of dialogue as fusion of horizons of understanding. We conclude that inner posture differs from the other concepts in several ways. Some of these differences are more fundamental, other are partial. This suggests that we identified a new perspective on a phenomenon partially described earlier. The comparison also inspired us to slightly adjust our definition and to formulate new research questions.
Chronic cardiovascular diseases (CVD) are diseases with marked morbidity. Patients are often advi... more Chronic cardiovascular diseases (CVD) are diseases with marked morbidity. Patients are often advised to change their lifestyle to prevent complications and impairment of their diseases. Compliance, however, is influenced by multiple factors. Initial studies show that spirituality is an important aspect in health behavior and lifestyle changing, but to health professionals like nurses this is unknown. The aim of this review is to investigate and synthesize evidence about the role of spirituality in lifestyle changing in patients with chronic CVD. A comprehensive search was conducted in electronic databases Academic Search Premier, E-journals, Medline and PubMed, published between the years 2000-2015. After selection based on pre-set inclusion criteria, studies were retrieved and evaluated on quality using the criteria of the QOREC. Twelve studies with a qualitative empirical design and mixed methods were included. This review shows that spirituality, is related to the self-management of patients with chronic diseases. For instance, lifestyle changes are experienced as a continuous inner battle. Religion gives strength, but is also experienced as a struggle. Feelings of guilt and becoming a victim influence patients' experience. For effectively advising patients with CVD on lifestyle changes, nurses cannot ignore this factor but further investigation is required.
Achtergrond van het onderzoek Onder artsen bestaat terughoudendheid over euthanasie bij wilsonbek... more Achtergrond van het onderzoek Onder artsen bestaat terughoudendheid over euthanasie bij wilsonbekwame patienten met dementie op basis van een schriftelijke euthanasieverklaring. Een van de redenen hiervoor is dat de situatie van gevorderde dementie de mogelijkheid tot betekenisvolle communicatie en gezamenlijke besluitvorming beperkt, terwijl artsen dit juist als noodzakelijk ervaren. Dit heeft geleid tot een groeiende behoefte aan houvast hoe om te gaan met dit dilemma. Inhoud van het DALT-project Er wordt gebruik gemaakt van een combinatie van diverse onderzoeksmethoden, waaronder vragenlijstonderzoek, interviews, een literatuurstudie van de juridische, rechtstheoretische en ethische literatuur en een Delphi-studie naar de toepasbaarheid van de zorgvuldigheidsvoorwaarden bij wilsonbekwame patienten met dementie. De doelstelling van het onderzoek is een handreiking voor het zorgvuldig omgaan met euthanasieverklaringen van wilsonbekwame patienten met dementie. Relevantie voor de praktijk In dit onderzoek zal de focus voornamelijk liggen op concrete casuistiek, met daarbij aandacht voor het perspectief van de arts. Het onderzoek beoogt de verbinding te maken tussen de resultaten van (fundamenteel) rechtstheoretisch en ethisch onderzoek en de dagelijkse praktijk.
While the COVID-19 crisis has affected people all around the world, it has not affected everyone ... more 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. This article explores the lived experiences during the pandemic of people with ID living in care institutions in the Netherlands. Particular attention is paid to the challenges involved in living through periods of confinement and separation in what may be called “vulnerable spaces.” Drawing from interviews with individuals with a mild ID who have been restricted in seeing family and friends through the closed access of group homes to visits from outsiders, as well as interviews with their relatives and support workers, the article considers the ways in which stakeholders have responded to these spatial policies and negotiated the meaning of living space in times of crisis.
hoogleraar zorgethiek en geestelijk begeleidingswetenschappen; bijzonder hoogleraar ethische en s... more hoogleraar zorgethiek en geestelijk begeleidingswetenschappen; bijzonder hoogleraar ethische en spirituele vragen in de palliatieve zorg vanuit de Associatie van Highcare Hospices; vicepresident European Association for Palliative Care Samenvatting Spirituele zorg is een essentieel deel van palliatieve zorg en een groeiend terrein van wetenschappelijk onderzoek. In 2010 verscheen in Nederland de eerste consensus-based richtlijn op dit terrein, die uitgangspunt is voor deze bijdrage. Volgens de richtlijn is spirituele zorg een opdracht voor alle disciplines, waarbij de geestelijk verzorger als de inhoudelijk deskundigste beschouwd wordt. Alle disciplines kunnen hun bijdragen leveren op de niveaus van (A) aandacht, (B) Begeleiding en (C) Crisisinterventies. Daarvoor worden eenvoudige instrumenten aangereikt die helpen het gesprek te openen, betekenislagen te onderscheiden en om te gaan met hoop in de palliatieve zorg.
AimTo gain insight into the perceived emotional impact of providing palliative care among nursing... more AimTo 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.DesignExploratory qualitative study.MethodsIn 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted. Participants were recruited via personal networks and social media. Interviews were open‐coded by three independent researchers following the thematic analysis approach.ResultsThree themes emerged regarding the elements that contribute to the emotional impact of providing palliative care in nursing homes: impactful situations (e.g. witnessing suffering and sudden deaths), interactions (e.g. close relationship and receiving gratitude) and reflection on provided care (e.g. feeling fulfilment or feeling inadequate in caring). Nursing assistants used different strategies to cope, including emotional processing activities, their attitude towards death and work and gaining experience. Participants experienced a need for more education in palliative care and organized peer group meetings.ConclusionElements that play a role in how the emotional impact of providing palliative care is perceived by nursing assistants can have a positive or negative impact.Implications for the Profession and/or Patient CareNursing assistants should be better supported in coping with the emotional impact of providing palliative care.ImpactIn nursing homes, nursing assistants are most involved in providing daily care to residents and have a signalling role in recognizing the deteriorating conditions of residents. Despite their prominent role, little is known about the emotional impact of providing palliative care among these professionals. This study shows that although nursing assistants already undertake various activities to reduce the emotional impact, employers should be aware of the unmet needs in this area and the responsibility they have in this regard.Reporting MethodThe QOREQ checklist was used for reporting.Patient or Public ContributionNo patient or public contribution.
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Papers by Carlo Leget