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Article ; Online: Insight into the content of and experiences with follow-up conversations with bereaved parents in paediatrics: A systematic review.

van Kempen, Merel M / Kochen, Eline M / Kars, Marijke C

Acta paediatrica (Oslo, Norway : 1992)

2022 Volume 111, Issue 4, Page(s) 716–732

Abstract: Aim: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content of ... ...

Abstract	Aim: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content of follow-up conversations between bereaved parents and regular healthcare professionals (HCPs) in paediatrics and how parents and HCPs experience these conversations. Methods: Systematic literature review using the methods PALETTE and PRISMA. The search was conducted in PubMed and CINAHL on 3 February 2021. The results were extracted and integrated using thematic analysis. Results: Ten articles were included. This review revealed that follow-up conversations are built around three key elements: (1) gaining information, (2) receiving emotional support and (3) facilitating parents to provide feedback. In addition, this review showed that the vast majority of parents and HCPs experienced follow-up conversations as meaningful and beneficial for several reasons. Conclusion: An understanding of what parents and HCPs value in follow-up conversations aids HCPs in conducting follow-up conversations and improves care for bereaved parents by enhancing the HCPs' understanding of parental needs.
MeSH term(s)	Bereavement ; Child ; Communication ; Follow-Up Studies ; Humans ; Parents/psychology ; Pediatrics
Language	English
Publishing date	2022-02-07
Publishing country	Norway
Document type	Journal Article ; Review ; Systematic Review
ZDB-ID	203487-6
ISSN	1651-2227 ; 0365-1436 ; 0803-5253
ISSN (online)	1651-2227
ISSN	0365-1436 ; 0803-5253
DOI	10.1111/apa.16248
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Article ; Online: Effective communication in palliative care from the perspectives of patients and relatives: A systematic review.

Engel, Marijanne / Kars, Marijke C / Teunissen, Saskia C C M / van der Heide, Agnes

Palliative & supportive care

2023 Volume 21, Issue 5, Page(s) 890–913

Abstract: Objectives: In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes ... ...

Abstract	Objectives: In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. Methods: A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. Results: In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. Significance of results: Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.
MeSH term(s)	Humans ; Palliative Care ; Hospice and Palliative Care Nursing ; Patients ; Adaptation, Psychological ; Communication
Language	English
Publishing date	2023-09-20
Publishing country	England
Document type	Systematic Review ; Journal Article ; Review
ZDB-ID	2454009-2
ISSN	1478-9523 ; 1478-9515
ISSN (online)	1478-9523
ISSN	1478-9515
DOI	10.1017/S1478951523001165
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Article ; Online: The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.

Engel, Marijanne / Brouwer, Marije A / Jansen, Nienke / Leget, Carlo / Teunissen, Saskia Ccm / Kars, Marijke C

Palliative medicine

2023 Volume 37, Issue 9, Page(s) 1303–1325

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Child ; Humans ; Parenting ; Religion ; Palliative Care ; Spirituality ; Parents
Language	English
Publishing date	2023-07-17
Publishing country	England
Document type	Systematic Review ; Journal Article ; Review ; Research Support, Non-U.S. Gov't
ZDB-ID	639247-7
ISSN	1477-030X ; 0269-2163
ISSN (online)	1477-030X
ISSN	0269-2163
DOI	10.1177/02692163231186173
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Article ; Online: Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol.

Joren, Chantal Y / Kars, Marijke C / Kremer, Leontien C M / Rippen, Hester / Verhagen, A A Eduard / Aris-Meijer, Judith L

BMJ paediatrics open

2023 Volume 7, Issue 1

Abstract: Introduction: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC ... ...

Abstract	Introduction: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was developed and has shown to be successful. The ICP can be seen as an instrument to facilitate coordination, quality and continuity of PPC. However, in practice, an ICP is often completed too late and for too few children. We aim to improve the coordination, quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family by further developing and implementing the ICP in the Netherlands. Methods and analysis: To evaluate the original ICP, ICP 1.0, interviews and questionnaires will be held among parents of children who have or have had an ICP 1.0 and healthcare professionals (HCPs) who used ICP 1.0. Based on the results, ICP 1.0 will be further developed. An implementation strategy will be written and the renewed ICP, ICP 2.0, will be nationally tested in an implementation period of approximately 7 months. During the implementation period, ICP 2.0 will be used for all children who are registered with Children's Palliative Care teams. After the implementation period, ICP 2.0 will be evaluated using interviews and questionnaires among parents of children who received ICP 2.0 and HPCs who worked with ICP 2.0. Based on these results, ICP 2.0 will be further optimised into the final version: ICP 3.0. Ethics and dissemination: This study received ethical approval. The ICP 3.0 will be disseminated through the Dutch Centre of Expertise in Children's Palliative Care, to ensure wide availability for the general public and HCPs within PPC. Additionally, we aim to publish study results in open-access, peer-reviewed journals and to present results at national and international scientific meetings.
MeSH term(s)	Humans ; Child ; Male ; Female ; Palliative Care/methods ; Hospice and Palliative Care Nursing ; Parents ; Health Personnel ; Netherlands
Language	English
Publishing date	2023-01-16
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ISSN	2399-9772
ISSN (online)	2399-9772
DOI	10.1136/bmjpo-2022-001677
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Article ; Online: Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

Brouwer, Marije A / Bas-Douw, Barbara C / Leget, Carlo J W / Engel, Marijanne / Teunissen, Saskia C C M / Kars, Marijke C

European journal of pediatrics

2023 Volume 183, Issue 2, Page(s) 629–637

Abstract: 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 ... ...

Abstract	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. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. Conclusion: Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. What is known: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. What is new: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.
MeSH term(s)	Child ; Humans ; Parents ; Palliative Care ; Spirituality ; Qualitative Research ; Spiritual Therapies
Language	English
Publishing date	2023-11-11
Publishing country	Germany
Document type	Journal Article
ZDB-ID	194196-3
ISSN	1432-1076 ; 0340-6199 ; 0943-9676
ISSN (online)	1432-1076
ISSN	0340-6199 ; 0943-9676
DOI	10.1007/s00431-023-05314-4
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Article ; Online: Anxiety in Hospice Inpatients With Advanced Cancer, From the Perspective of Their Informal Caregivers: A Qualitative Study.

Duijn, Jette M / Zweers, Danielle / Kars, Marijke C / de Graeff, Alexander / Teunissen, Saskia C C M

Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association

2021 Volume 23, Issue 2, Page(s) 155–161

Abstract: Anxiety is a common symptom in patients with advanced cancer. Early recognition of anxiety is difficult, especially when the physical condition of patients declines and patients are not able to verbally express about their concerns. Under these ... ...

Abstract	Anxiety is a common symptom in patients with advanced cancer. Early recognition of anxiety is difficult, especially when the physical condition of patients declines and patients are not able to verbally express about their concerns. Under these circumstances, informal caregivers may be a valuable source of information. The aim of this study was to explore anxiety in hospice inpatients with advanced cancer from the perspective of their informal caregivers. Fourteen informal caregivers were interviewed; 64% were women and the median age was 55 years. Informal caregivers assessed patients' anxiety as moderate to severe and identified a negative impact of anxiety on physical, psychological, social, and spiritual dimensions of the patients' lives. They indicated a variety of expressions of anxiety and mentioned physical and mental deterioration as an important source of anxiety. Informal caregivers recognized patients' needs as having a safe environment, presence of people around, and a sense of control over the situation. Although the patients' perspective is the gold standard, informal caregivers can be a valuable source of information in identifying anxiety and providing personalized support. Therefore, informal caregivers should be more involved in the care for anxious patients to improve early recognition of anxiety and to ameliorate anxiety management for this vulnerable patient population.
MeSH term(s)	Anxiety ; Caregivers ; Female ; Hospices ; Humans ; Inpatients ; Middle Aged ; Neoplasms/complications
Language	English
Publishing date	2021-02-18
Publishing country	United States
Document type	Journal Article
ZDB-ID	2070862-2
ISSN	1539-0705 ; 1522-2179
ISSN (online)	1539-0705
ISSN	1522-2179
DOI	10.1097/NJH.0000000000000729
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Article ; Online: Coping Strategies of Adolescent and Young Adult Survivors of Childhood Cancer: A Qualitative Study.

Belpame, Nathalie / Kars, Marijke C / Deslypere, Eva / Rober, Peter / Van Hecke, Ann / Verhaeghe, Sofie

Cancer nursing

2020 Volume 44, Issue 6, Page(s) E395–E403

Abstract: Background: Many adolescent and young adult (AYA) survivors of childhood cancer are dealing with late effects of the cancer and its treatment.: Objective: The aim of this study was to explore how AYA survivors cope with their childhood cancer ... ...

Abstract	Background: Many adolescent and young adult (AYA) survivors of childhood cancer are dealing with late effects of the cancer and its treatment. Objective: The aim of this study was to explore how AYA survivors cope with their childhood cancer experience and its long-term consequences. Methods: This is a descriptive qualitative study in which 21 semistructured interviews with AYA survivors of childhood cancer were conducted. A thematic analysis was conducted by a multidisciplinary research team and supported by NVivo 10. Results: Five coping strategies, which facilitated in living a normal life, of which some were developed during their cancer experience, were identified: (1) focusing on the "here and now," (2) refraining from discussing the cancer experience, (3) recalling and preserving positive memories, (4) redefining the impact positively, and (5) consolidating and preserving a sense of togetherness. Conclusions: Even long after completing treatment, the cancer experience remained deeply ingrained in AYA survivors' lives. Although they did not perceive their survivorship as a large problem in their current lives, coping with being a childhood cancer survivor did take effort. The deployment of specific coping strategies helped them to remain focused on the positive outlook in life and to deal with the long-term physical and psychosocial consequences of the cancer experience aimed at ultimately leading a normal life. Implications for practice: This study emphasizes the current individual frame of reference of the AYA survivor as the point of departure for psychosocial support. Healthcare professionals are advised to acknowledge and respect the value and function of the AYA survivors' coping strategies used.
MeSH term(s)	Adaptation, Psychological ; Adolescent ; Cancer Survivors ; Child ; Humans ; Neoplasms/therapy ; Qualitative Research ; Survivors ; Young Adult
Language	English
Publishing date	2020-08-01
Publishing country	United States
Document type	Journal Article
ZDB-ID	391995-x
ISSN	1538-9804 ; 0162-220X
ISSN (online)	1538-9804
ISSN	0162-220X
DOI	10.1097/NCC.0000000000000865
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Article ; Online: Impacts of an advance care planning intervention on close relationships.

Bulli, Francesco / Toccafondi, Alessandro / Kars, Marijke C / Caswell, Glenys / Kodba-Čeh, Hana / Lunder, Urska / Pollock, Kristian / Seymour, Jane / van Delden, Johannes J M / Zwakman, Marieke / Korfage, Ida J / Van der Heide, Agnes / Miccinesi, Guido

Palliative & supportive care

2023 , Page(s) 1–6

Abstract: Objectives: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs).: Methods: Within the ACTION ... ...

Abstract	Objectives: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs). Methods: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices Results: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by Significance of results: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.
Language	English
Publishing date	2023-05-30
Publishing country	England
Document type	Journal Article
ZDB-ID	2454009-2
ISSN	1478-9523 ; 1478-9515
ISSN (online)	1478-9523
ISSN	1478-9515
DOI	10.1017/S1478951523000482
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Article ; Online: Advance Care Planning in the Netherlands.

van der Steen, Jenny T / Engels, Yvonne / Touwen, Dorothea P / Kars, Marijke C / Reyners, Anna K L / van der Linden, Yvette M / Korfage, Ida J

Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen

2023 Volume 180, Page(s) 133–138

Abstract: The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations ... ...

Abstract	The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches.
MeSH term(s)	Humans ; Netherlands ; Germany ; Advance Care Planning ; Nursing Homes ; Palliative Care
Language	English
Publishing date	2023-07-21
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	2412512-X
ISSN	2212-0289 ; 1865-9217
ISSN (online)	2212-0289
ISSN	1865-9217
DOI	10.1016/j.zefq.2023.06.003
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Article ; Online: Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.

van Driessche, Anne / Beernaert, Kim / Deliens, Luc / Kars, Marijke C / Lyon, Maureen E / Barrera, Maru / Dussel, Veronica / Bidstrup, Pernille / Rosenberg, Abby R / Akard, Terrah F / Cohen, Joachim / De Vleminck, Aline

European journal of pediatrics

2023 Volume 182, Issue 10, Page(s) 4683–4706

Abstract: In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of ... ...

Abstract	In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment. Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents. Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.
MeSH term(s)	Humans ; Child ; Psychosocial Intervention ; Randomized Controlled Trials as Topic ; Parents/psychology ; Neoplasms/therapy ; Research Personnel
Language	English
Publishing date	2023-08-10
Publishing country	Germany
Document type	Journal Article
ZDB-ID	194196-3
ISSN	1432-1076 ; 0340-6199 ; 0943-9676
ISSN (online)	1432-1076
ISSN	0340-6199 ; 0943-9676
DOI	10.1007/s00431-023-05139-1
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