Anne Goossensen | University for Humanistic Studies (original) (raw)

Papers by Anne Goossensen

Research paper thumbnail of “It is important that we also remain a person ourselves”: A qualitative study about the role of healthcare and social welfare services by Dutch parents caring for a child with profound intellectual and multiple disabilities at home

SSM - Qualitative Research in Health, Aug 1, 2023

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Research paper thumbnail of Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study)

Death Studies, Mar 9, 2023

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Research paper thumbnail of Conceptual Description and Philosophical Underpinning of the Social Intervention ‘Alzheimer Whispering’

Journal of social intervention: Theory and Practice, Jun 30, 2022

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Research paper thumbnail of Caregiving for ageing parents: A literature review on the experience of adult children

Nursing Ethics, Nov 22, 2019

Background:More and more adults in their fifties and sixties are confronted with the need to supp... more Background:More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.Aim:This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.Method:A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.Ethical consideration:Ethical requirements were respected in every phase of the research process.Findings:Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.Discussion:Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.Conclusion:Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

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Research paper thumbnail of Grief after Pandemic Loss: Factors Affecting Grief Experiences (the CO-LIVE Study) (#236876363)

Journal of Loss & Trauma, Jul 3, 2023

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Research paper thumbnail of Parents caring for children with normal life span threatening disabilities: a narrative review of literature

Scandinavian Journal of Caring Sciences, Dec 21, 2018

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Research paper thumbnail of Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study)

BMJ Open, Mar 1, 2023

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Research paper thumbnail of Veranderen en vernieuwen in de verslavingszorg (9): over exposure en sensitiviteit

Verslaving, Jun 1, 2010

ABSTRACT U hebt er vast weleens mee te maken gehad: implementatie, innovatie, zorgvernieuwing of ... more ABSTRACT U hebt er vast weleens mee te maken gehad: implementatie, innovatie, zorgvernieuwing of reorganisatie. Het doorvoeren van vernieuwingen is aan de orde van de dag. Het vergt veel energie en ... leidt helaas in lang niet alle gevallen tot de gewenste uitkomsten (zoals zorg met betere effecten, vanuit een soepeler lopende zorgorganisatie). In een serie bijdragen verken ik theorieën en instrumenten voor vernieuwingsprocessen in de verslavingszorg.

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Research paper thumbnail of Veranderen en vernieuwen in de verslavingszorg (6): over leerstijlen en contexten

Verslaving, Mar 1, 2009

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Research paper thumbnail of Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey

Palliative Medicine, Nov 25, 2022

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Research paper thumbnail of P-277 Palliative care volunteers in europe: qualitative analysis of volunteer activities and experiences

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Research paper thumbnail of Normative tensions in filial caring for a mother with dementia: A narrative perspective

Dementia, Apr 29, 2021

This article aims to gain insight in the normative struggles of adult children caring for their a... more This article aims to gain insight in the normative struggles of adult children caring for their ageing mother living with dementia. Two Dutch autobiographical books written by siblings recording their own caregiving experience were analysed using a narrative design. Children appear to understand their normative concerns through six fields of tension. Our analysis shows that filial caregivers describe two distinct approaches to deal with these normative tensions. One approach aims to preserve the child’s pre-existing personal beliefs and values, but also causes the child to demonstrate rigid and uncompromising behaviour at odds with the needs of their parent. The other approach is more reflective and flexible, prioritizing the needs of the vulnerable person over previously held values, providing an opportunity for better care. We conclude that caregiving children have to find their way between being faithful to their principles and showing moral flexibility.

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Research paper thumbnail of Ilive project volunteer study: Delivery of a novel training programme for volunteer coordinators, to underpin development and implementation of hospital palliative care volunteer services

Palliative Medicine, 2021

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Research paper thumbnail of Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

BMJ Open

IntroductionAdequately addressing the needs of patients at the end of life and their relatives is... more IntroductionAdequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.Methods and analysisThe iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last we...

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Research paper thumbnail of “Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities

Journal of Intellectual & Developmental Disability

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Research paper thumbnail of Dying in times of COVID-19: Experiences in different care settings – An online questionnaire study among bereaved relatives (the CO-LIVE study)

Palliative Medicine, 2022

Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across ... more Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. Aim: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. Design: An open observational online survey was developed and disseminated via social media and public fora (March–July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. Participants: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. Results: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home ( n = 68), in a hospital ( n = 114), nursing home ( n = 176) or hospice ( n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nu...

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Research paper thumbnail of Vrijwilligers en kwaliteit: Mag je een gegeven paard in de bek kijken?

Pallium, 2018

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Research paper thumbnail of Er Zijn

Pallium, 2017

SamenvattingVrijwilligers leveren een belangrijke bijdrage in de zorg voor mensen in de palliatie... more SamenvattingVrijwilligers leveren een belangrijke bijdrage in de zorg voor mensen in de palliatieve fase en hun naasten.1,2,3 Er zijn ruim 11.000 VPTZ-vrijwilligers actief in Nederland.a Veel organisaties in de palliatieve terminale zorg zouden niet kunnen bestaan zonder vrijwilligers. Toch is niet voor iedereen duidelijk wat zij precies doen en wat hun waarde is. Wat is de kern van hun bijdrage en hoe is de kwaliteit ervan te evalueren?

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Research paper thumbnail of The social–political challenges behind the wish to die in older people who consider their lives to be completed and no longer worth living

Journal of European Social Policy, 2017

In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increas... more In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on ‘completed life in old age’ ...

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Research paper thumbnail of Caring for children with profound intellectual and multiple disabilities: images and metaphors expressed by Dutch parents

Disability & Society

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Research paper thumbnail of “It is important that we also remain a person ourselves”: A qualitative study about the role of healthcare and social welfare services by Dutch parents caring for a child with profound intellectual and multiple disabilities at home

SSM - Qualitative Research in Health, Aug 1, 2023

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Research paper thumbnail of Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study)

Death Studies, Mar 9, 2023

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Research paper thumbnail of Conceptual Description and Philosophical Underpinning of the Social Intervention ‘Alzheimer Whispering’

Journal of social intervention: Theory and Practice, Jun 30, 2022

Bookmarks Related papers MentionsView impact

Research paper thumbnail of Caregiving for ageing parents: A literature review on the experience of adult children

Nursing Ethics, Nov 22, 2019

Background:More and more adults in their fifties and sixties are confronted with the need to supp... more Background:More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.Aim:This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.Method:A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.Ethical consideration:Ethical requirements were respected in every phase of the research process.Findings:Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.Discussion:Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.Conclusion:Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

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Research paper thumbnail of Grief after Pandemic Loss: Factors Affecting Grief Experiences (the CO-LIVE Study) (#236876363)

Journal of Loss & Trauma, Jul 3, 2023

Bookmarks Related papers MentionsView impact

Research paper thumbnail of Parents caring for children with normal life span threatening disabilities: a narrative review of literature

Scandinavian Journal of Caring Sciences, Dec 21, 2018

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Research paper thumbnail of Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study)

BMJ Open, Mar 1, 2023

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Research paper thumbnail of Veranderen en vernieuwen in de verslavingszorg (9): over exposure en sensitiviteit

Verslaving, Jun 1, 2010

ABSTRACT U hebt er vast weleens mee te maken gehad: implementatie, innovatie, zorgvernieuwing of ... more ABSTRACT U hebt er vast weleens mee te maken gehad: implementatie, innovatie, zorgvernieuwing of reorganisatie. Het doorvoeren van vernieuwingen is aan de orde van de dag. Het vergt veel energie en ... leidt helaas in lang niet alle gevallen tot de gewenste uitkomsten (zoals zorg met betere effecten, vanuit een soepeler lopende zorgorganisatie). In een serie bijdragen verken ik theorieën en instrumenten voor vernieuwingsprocessen in de verslavingszorg.

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Research paper thumbnail of Veranderen en vernieuwen in de verslavingszorg (6): over leerstijlen en contexten

Verslaving, Mar 1, 2009

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Research paper thumbnail of Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey

Palliative Medicine, Nov 25, 2022

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Research paper thumbnail of P-277 Palliative care volunteers in europe: qualitative analysis of volunteer activities and experiences

Bookmarks Related papers MentionsView impact

Research paper thumbnail of Normative tensions in filial caring for a mother with dementia: A narrative perspective

Dementia, Apr 29, 2021

This article aims to gain insight in the normative struggles of adult children caring for their a... more This article aims to gain insight in the normative struggles of adult children caring for their ageing mother living with dementia. Two Dutch autobiographical books written by siblings recording their own caregiving experience were analysed using a narrative design. Children appear to understand their normative concerns through six fields of tension. Our analysis shows that filial caregivers describe two distinct approaches to deal with these normative tensions. One approach aims to preserve the child’s pre-existing personal beliefs and values, but also causes the child to demonstrate rigid and uncompromising behaviour at odds with the needs of their parent. The other approach is more reflective and flexible, prioritizing the needs of the vulnerable person over previously held values, providing an opportunity for better care. We conclude that caregiving children have to find their way between being faithful to their principles and showing moral flexibility.

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Research paper thumbnail of Ilive project volunteer study: Delivery of a novel training programme for volunteer coordinators, to underpin development and implementation of hospital palliative care volunteer services

Palliative Medicine, 2021

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Research paper thumbnail of Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

BMJ Open

IntroductionAdequately addressing the needs of patients at the end of life and their relatives is... more IntroductionAdequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.Methods and analysisThe iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last we...

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Research paper thumbnail of “Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities

Journal of Intellectual & Developmental Disability

Bookmarks Related papers MentionsView impact

Research paper thumbnail of Dying in times of COVID-19: Experiences in different care settings – An online questionnaire study among bereaved relatives (the CO-LIVE study)

Palliative Medicine, 2022

Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across ... more Background: The COVID-19 pandemic and restricting measures have affected end-of-life care across different settings. Aim: To compare experiences of bereaved relatives with end-of-life care for a family member or friend who died at home, in a hospital, nursing home or hospice during the pandemic. Design: An open observational online survey was developed and disseminated via social media and public fora (March–July 2020). Data were analyzed using descriptive statistics and logistic regression analyses. Participants: Individuals who lost a family member or friend in the Netherlands during the COVID-19 pandemic. Results: The questionnaire was filled out by 393 bereaved relatives who lost a family member or friend at home ( n = 68), in a hospital ( n = 114), nursing home ( n = 176) or hospice ( n = 35). Bereaved relatives of patients who died in a hospital most often evaluated medical care (79%) as sufficient, whereas medical care (54.5%) was least often evaluated as sufficient in nu...

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Research paper thumbnail of Vrijwilligers en kwaliteit: Mag je een gegeven paard in de bek kijken?

Pallium, 2018

Bookmarks Related papers MentionsView impact

Research paper thumbnail of Er Zijn

Pallium, 2017

SamenvattingVrijwilligers leveren een belangrijke bijdrage in de zorg voor mensen in de palliatie... more SamenvattingVrijwilligers leveren een belangrijke bijdrage in de zorg voor mensen in de palliatieve fase en hun naasten.1,2,3 Er zijn ruim 11.000 VPTZ-vrijwilligers actief in Nederland.a Veel organisaties in de palliatieve terminale zorg zouden niet kunnen bestaan zonder vrijwilligers. Toch is niet voor iedereen duidelijk wat zij precies doen en wat hun waarde is. Wat is de kern van hun bijdrage en hoe is de kwaliteit ervan te evalueren?

Bookmarks Related papers MentionsView impact

Research paper thumbnail of The social–political challenges behind the wish to die in older people who consider their lives to be completed and no longer worth living

Journal of European Social Policy, 2017

In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increas... more In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on ‘completed life in old age’ ...

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Research paper thumbnail of Caring for children with profound intellectual and multiple disabilities: images and metaphors expressed by Dutch parents

Disability & Society

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