Nari Heitkamp - Academia.edu (original) (raw)

Papers by Nari Heitkamp

Journal of Palliative Medicine

Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of c... more Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging situation for all participants. Objectives: Our goal was to investigate the first step of ACD and identify its challenges and helpful communication strategies to develop a conversation guide for initiating the pACP process and structure the conversational opening. Methods: We performed a participant observation of 11 initial ACD and 24 interviews with 13 HCPs and 20 parents of 11 children cared for by 3 different palliative care teams in southern Germany. Qualitative data collection was supplemented by a questionnaire. Content analysis and conversation analysis were used for evaluation. Results: Parents and HCPs start the process with different expectations, which can lead to misunderstandings and confusion. HCPs gain parental cooperation when they express the purpose of the meeting clearly and early, provide structure and guidance, and give parents time to talk about their experiences and feelings. Addressing dying and death is hard for both sides and requires a sensitive approach. Conclusions: Initiating ACD is extremely challenging for all participants. HCPs and parents should clarify expectations and aims at the beginning of the conversation. Future research should focus on how HCPs can be trained for this task and how the right timing for introducing ACD to families can be identified. Clinical Trial Registration number 049-12.

Supplemental material, Hein_et_al._Online_Suppl._Material_Table_with_quotes_end for Identifying k... more Supplemental material, Hein_et_al._Online_Suppl._Material_Table_with_quotes_end for Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study by Kerstin Hein, Kathrin Knochel, Vedrana Zaimovic, Daniel Reimann, Anna Monz, Nari Heitkamp, Gian Domenico Borasio and Monika Führer in Palliative Medicine

Alzheimer Disease & Associated Disorders, 2022

Primary progressive aphasia (PPA) may present with three distinct clinical sybtypes: semantic var... more Primary progressive aphasia (PPA) may present with three distinct clinical sybtypes: semantic variant PPA (svPPA), nonfluent/agrammatic variant PPA (nfvPPA), and logopenic variant PPA (lvPPA). The aim was to examine the utility of the German version of the Repeat and Point (R&P) Test for subtyping patients with PPA. During the R&P Test, the examiner reads out aloud a noun and the participants are asked to repeat the word and subsequently point to the corresponding picture. Data from 204 patients (68 svPPA, 85 nfvPPA, and 51 lvPPA) and 33 healthy controls were analyzed. Controls completed both tasks with >90% accuracy. Patients with svPPA had high scores in repetition (mean=9.2±1.32) but low scores in pointing (mean=6±2.52). In contrast, patients with nfvPPA and lvPPA performed comparably in both tasks with lower scores in repetition (mean=7.4±2.7 for nfvPPA and 8.2±2.34 for lvPPA) but higher scores in pointing (mean=8.9±1.41 for nfvPPA and 8.6±1.62 for lvPPA). The R&P Test had high accuracy discriminating svPPA from nfvPPA (83% accuracy) and lvPPA (79% accuracy). However, there was low accuracy discriminating nfvPPA from lvPPA (<60%). The R&P Test helps to differentiate svPPA from 2 nonsemantic variants (nfvPPA and lvPPA). However, additional tests are required for the differentiation of nfvPPA and lvPPA.

Journal of Pain and Symptom Management, 2021

CONTEXT Decision-making in pediatric palliative care concerns mainly children without decision-ma... more CONTEXT Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals. METHODS Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analysed, systematized and translated these results into a pedACP program draft, which was revised by the participants. RESULTS The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility. CONCLUSION Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders.

Palliative Medicine, 2020

Background: Although international guidelines recommend discussions about goals of care and treat... more Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks. Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focu...

Journal of Pain and Symptom Management, 2018

It is also useful for the development of a QoL assessment tool as well as for the development of ... more It is also useful for the development of a QoL assessment tool as well as for the development of common care goals.

Journal of Neurolinguistics, 2016

The semantic variant of primary progressive aphasia (svPPA) presents with a degradation of semant... more The semantic variant of primary progressive aphasia (svPPA) presents with a degradation of semantic knowledge due to atrophy of the anterior temporal lobe and is characterized by impaired confrontation naming and impaired single-word comprehension. So far, little is known about the development of symptoms and their order of occurrence in the preclinical phase, and information regarding written text production is scarce. We had the unique opportunity to analyze the diary of a man written over a time span of 12 years before he was diagnosed with svPPA. We sought to identify the earliest indicators of cognitive change in his diary entries, and to track the important changes over time. Based on transcripts of the entries (one week every six months) we assessed the overall structure, vocabulary, surface dysgraphia and semantic paraphasia, syntax, and morphology. We found changes in all domains up to seven years before the clinical diagnosis. The earliest changes concerned the vocabulary, with decreased variety and increased use of high frequency words. This was followed by syntactic and morphological errors. We found no increase of surface dysgraphia. Semantic paraphasias increased only during the last three years but characterized the entries of the last year. We were therefore able to further corroborate recent findings regarding difficulties in the morpho-syntactic domain in this patient group. In this natural context for written text production, such errors seem, in addition to changes in vocabulary, to be the first error types to appear, possibly as a result of compensating for the degradation of semantic representations.

Klinische Neurophysiologie, 2010

The thesis at hand focuses on two main aspects: Firstly, the written text production in the precl... more The thesis at hand focuses on two main aspects: Firstly, the written text production in the preclinical phase of the semantic variant of primary progressive aphasia embedded in a longitudinal study; secondly, on the examination of Proper Names in patients suffering from Alzheimer´s Disease in a fluency task setting. Both studies focus on aspects which have not been subject to scientific research so far. The broad analysis of linguistics in written text production covered the levels of semantics, syntax and morphology and also included the examination of vocabulary and punctuation. The results showed an early onset of symptoms (approximately nine years before the clinical diagnose took place). Most surprising was the finding of an overwhelming amount of morphologic errors and an extreme usage of quotation marks. The results thus deepen the insight in the process of how the syndrome manifests itself in text production even before clinical diagnosis takes place. The fluency tasks for P...

Journal of Palliative Medicine

Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of c... more Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging situation for all participants. Objectives: Our goal was to investigate the first step of ACD and identify its challenges and helpful communication strategies to develop a conversation guide for initiating the pACP process and structure the conversational opening. Methods: We performed a participant observation of 11 initial ACD and 24 interviews with 13 HCPs and 20 parents of 11 children cared for by 3 different palliative care teams in southern Germany. Qualitative data collection was supplemented by a questionnaire. Content analysis and conversation analysis were used for evaluation. Results: Parents and HCPs start the process with different expectations, which can lead to misunderstandings and confusion. HCPs gain parental cooperation when they express the purpose of the meeting clearly and early, provide structure and guidance, and give parents time to talk about their experiences and feelings. Addressing dying and death is hard for both sides and requires a sensitive approach. Conclusions: Initiating ACD is extremely challenging for all participants. HCPs and parents should clarify expectations and aims at the beginning of the conversation. Future research should focus on how HCPs can be trained for this task and how the right timing for introducing ACD to families can be identified. Clinical Trial Registration number 049-12.

Supplemental material, Hein_et_al._Online_Suppl._Material_Table_with_quotes_end for Identifying k... more Supplemental material, Hein_et_al._Online_Suppl._Material_Table_with_quotes_end for Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study by Kerstin Hein, Kathrin Knochel, Vedrana Zaimovic, Daniel Reimann, Anna Monz, Nari Heitkamp, Gian Domenico Borasio and Monika Führer in Palliative Medicine

Alzheimer Disease & Associated Disorders, 2022

Primary progressive aphasia (PPA) may present with three distinct clinical sybtypes: semantic var... more Primary progressive aphasia (PPA) may present with three distinct clinical sybtypes: semantic variant PPA (svPPA), nonfluent/agrammatic variant PPA (nfvPPA), and logopenic variant PPA (lvPPA). The aim was to examine the utility of the German version of the Repeat and Point (R&P) Test for subtyping patients with PPA. During the R&P Test, the examiner reads out aloud a noun and the participants are asked to repeat the word and subsequently point to the corresponding picture. Data from 204 patients (68 svPPA, 85 nfvPPA, and 51 lvPPA) and 33 healthy controls were analyzed. Controls completed both tasks with >90% accuracy. Patients with svPPA had high scores in repetition (mean=9.2±1.32) but low scores in pointing (mean=6±2.52). In contrast, patients with nfvPPA and lvPPA performed comparably in both tasks with lower scores in repetition (mean=7.4±2.7 for nfvPPA and 8.2±2.34 for lvPPA) but higher scores in pointing (mean=8.9±1.41 for nfvPPA and 8.6±1.62 for lvPPA). The R&P Test had high accuracy discriminating svPPA from nfvPPA (83% accuracy) and lvPPA (79% accuracy). However, there was low accuracy discriminating nfvPPA from lvPPA (<60%). The R&P Test helps to differentiate svPPA from 2 nonsemantic variants (nfvPPA and lvPPA). However, additional tests are required for the differentiation of nfvPPA and lvPPA.

Journal of Pain and Symptom Management, 2021

CONTEXT Decision-making in pediatric palliative care concerns mainly children without decision-ma... more CONTEXT Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals. METHODS Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analysed, systematized and translated these results into a pedACP program draft, which was revised by the participants. RESULTS The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility. CONCLUSION Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders.

Palliative Medicine, 2020

Background: Although international guidelines recommend discussions about goals of care and treat... more Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks. Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focu...

Journal of Pain and Symptom Management, 2018

It is also useful for the development of a QoL assessment tool as well as for the development of ... more It is also useful for the development of a QoL assessment tool as well as for the development of common care goals.

Journal of Neurolinguistics, 2016

The semantic variant of primary progressive aphasia (svPPA) presents with a degradation of semant... more The semantic variant of primary progressive aphasia (svPPA) presents with a degradation of semantic knowledge due to atrophy of the anterior temporal lobe and is characterized by impaired confrontation naming and impaired single-word comprehension. So far, little is known about the development of symptoms and their order of occurrence in the preclinical phase, and information regarding written text production is scarce. We had the unique opportunity to analyze the diary of a man written over a time span of 12 years before he was diagnosed with svPPA. We sought to identify the earliest indicators of cognitive change in his diary entries, and to track the important changes over time. Based on transcripts of the entries (one week every six months) we assessed the overall structure, vocabulary, surface dysgraphia and semantic paraphasia, syntax, and morphology. We found changes in all domains up to seven years before the clinical diagnosis. The earliest changes concerned the vocabulary, with decreased variety and increased use of high frequency words. This was followed by syntactic and morphological errors. We found no increase of surface dysgraphia. Semantic paraphasias increased only during the last three years but characterized the entries of the last year. We were therefore able to further corroborate recent findings regarding difficulties in the morpho-syntactic domain in this patient group. In this natural context for written text production, such errors seem, in addition to changes in vocabulary, to be the first error types to appear, possibly as a result of compensating for the degradation of semantic representations.

Klinische Neurophysiologie, 2010

The thesis at hand focuses on two main aspects: Firstly, the written text production in the precl... more The thesis at hand focuses on two main aspects: Firstly, the written text production in the preclinical phase of the semantic variant of primary progressive aphasia embedded in a longitudinal study; secondly, on the examination of Proper Names in patients suffering from Alzheimer´s Disease in a fluency task setting. Both studies focus on aspects which have not been subject to scientific research so far. The broad analysis of linguistics in written text production covered the levels of semantics, syntax and morphology and also included the examination of vocabulary and punctuation. The results showed an early onset of symptoms (approximately nine years before the clinical diagnose took place). Most surprising was the finding of an overwhelming amount of morphologic errors and an extreme usage of quotation marks. The results thus deepen the insight in the process of how the syndrome manifests itself in text production even before clinical diagnosis takes place. The fluency tasks for P...