Background: Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group. Objectives: The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions. Methods: Terminally ill parents diagnosed were surveyed using a validated instrument ‘Schedule for Meaning in Life Evaluation (SMiLE)’. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients. Results: In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be. Conclusion: The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.

Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. There is little research on digital memories for children. The study aims to understand how this service is used and its influence on children through responses of terminally ill parents and close persons. An anonymous online survey, accessible between September 2023 and November 2023, was conducted among terminally ill parents and their close persons with support from the Family Audiobook Association in Germany. Analyses were carried out using SPSS. 186 respondents, 95 terminally ill parents, and 91 close persons completed the online survey. Almost all terminally ill parents felt eased to have recorded a family audiobook. The two groups showed differences in how they used the family audiobook and how often they listened to it. While some children listen to the family audiobook with their bereaved parents or friends, other children are not yet ready for this, according to the open-ended responses of terminally ill parents and close persons. The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents.

BackgroundThe use of digital health applications (German acronym DiGA) for comprehensive patient care is increasing rapidly. Patients with non-organic insomnia can be prescribed an application to manage insomnia. Due to the high prevalence of insomnia in patients with cancer, we were interested in the effect of it and what barriers need to be overcome for its use. The focus of existing studies on acceptance and benefits prompted us to emphasise the analysis of barriers and thus to formulate possible solutions.MethodsTo analyse the barriers of use, the study population (patients with self-reported tiredness or sleep disturbance via validated instruments and cancer disease) was divided into 3 groups. In groups 1 (patients who refused to participate in advance) and 2 (patients who refused a prescription), short close-ended questionnaires were used for non-response assessment by treating oncologists. Problem-centred guidelines were used for the telephone interviews with group 3 (patients who did not provide information on DiGA use). Alternatively, group 3 was invited to complete and return the close-ended questionnaire. A quantitative analysis of the non-response reasons was conducted using SPSS in groups 1 and 2, while MAXQDA was used for the qualitative data in group 3.ResultsPatients refused to participate at several stages of our study. Quantitative data are available for groups 1 and 2. In the largest group 1, 62% of patients refused to participate due to non-subjective sleep disturbance (177 out of 189 patients) during recruitment by treating oncologists, despite high scores on the screening tool. In the small group 2 (11 out of 15), the most common reasons for withdrawal documented by the oncologists were loss of interest and deteriorating health. The problem-centred qualitative interviews with group 3 (17 patients) revealed that some of them used the prescribed DiGA, despite not being included in the main study and being categorized as lost to follow-up.ConclusionAnalysis of barriers to DiGA use showed that reducing administrative barriers and providing digital and personal support can increase acceptance of the use of DiGAs among cancer patients. Additionally, screening tools can act as a door opener to further communication regarding DiGAs.Trial registrationGerman Register of Clinical Trials DRKS00034198, registration date: 7/05/24 (retrospectively registered).

Background: Resilience is an increasingly used term in medicine and subject to various definitions, often not easy to grasp. There are established core concepts for patients receiving palliative care, for example, meaning in life, that have already been researched a lot. Resilience, relative to these concepts, is a new object of research in palliative care, where it has so far been used predominantly with regard to the well-being of teams. Aim: To explore how experts in palliative care define the concept of resilience and its suitability for patients, significant others, and professionals. Design: Qualitative study using summarizing content analysis according to Mayring. Setting/participants: Twenty-one health and social care professionals with expertise caring for persons with life-threatening/limiting illnesses and their relatives were interviewed in three individual interviews and four focus groups. All conversations were recorded, transcribed, coded via MAXQDA, and validated by another researcher. Results: Resilience has been described as something procedural, dynamic, individual, and flexible. In connection with well-known concepts such as posttraumatic growth or terms from the field of mindfulness, social environment or personal factors have also been linked to resilience. Resources such as spirituality can contribute to resilience, and resilience itself can function as a resource, for example, by contributing to quality of life. An active use of the term in practical work with patients or relatives is rare, but it is used in education or team measures. Limited lifespan can pose a challenge to an active use of the concept of resilience. Conclusion: Resilience as a very individual approach provides added value to other core concepts of palliative care. Within the palliative context, the normative dimension of resilience must be well reflected. A broader definition of resilience is recommended, leaving room for everyone to find their own form of resilience. The concept of resilience in palliative care includes opportunities as well as risks and should, therefore, be implemented carefully, requiring specific training.

Background Terminally ill parents with minor children require comprehensive support. We find a broad range of interventions such as Dignity therapy or Life Review. There are several studies concerning the effects of biographical interventions in palliative care, but research on the usage of digital reminiscence is sparse. Since 2017, terminally ill parents have been offered the opportunity to record an audio book for their minor children. It also offers parents with a terminal illness the opportunity to use their own voice to influence how and what aspects of themselves they want to be remembered. This professionally supported, voluntary service is free of charge and unique in Germany. The objective of this study was to provide novel insights into the satisfaction with and use of the family audiobook, as well as the effects on children, by surveying the terminally ill parent and their related persons. Methods A survey was conducted online among terminally ill parents and their related persons, who were identified and contacted through the Family Audiobook Association in Germany. The anonymous online survey was accessible between September 2023 and November 2023. A descriptive analysis of the quantitative data was conducted using the statistical software package SPSS. Results 186 respondents, 95 terminally ill parents and 91 related persons, provided responses to the online survey. Almost all terminally ill parents felt eased to have recorded a family audio book. The two groups exhibited differences in the manner in which they used and listened to the family audiobook. The open answers provided insight into the emotional and situational context in which the audiobook was being used. While some children are observed listening to family audiobooks with their parents or friends, other children are not yet ready for this. Conclusions The audiobook offers terminally ill parents with minor children a valuable opportunity to tell their own biographical story, to offer support to the bereaved in remembering and to preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents with minor children.

The expansion of palliative care for patients with amyotrophic lateral sclerosis (ALS) developed in a region of North Rhine-Westphalia rather by chance. A specialist palliative home care team was taken aback by the numerous challenges and significant needs of patients, their caregivers and healthcare professional. A pilot study using mixed methods and a theory-based data analysis helped to comprehend the underlying mechanisms in care networks. Semi-structured expert interviews (n = 15), an assessment of 50 ALS patients and a quantitative survey of 196 hospice and palliative care services were conducted to differentiate and refine the patients’ needs. ALS patients have multifaceted needs, including physical symptoms, psychosocial and financial issues and/or spiritual needs. Addressing these comprehensive needs requires complex solutions. Healthcare professionals demonstrated a greater willingness to provide additional support and allocate more time for appointments with ALS patients compared to patients with other diseases. Sociologically, a network's effectiveness is based on jointly agreed goals. So, social networks and game theories demonstrate that shared network goals are associated with knowledge, network size, heterogeneity, interrelations, and communication. Therefore, it is possible to develop a comprehensive care concept and a regional care network for ALS.

Zusammenfassung Hintergrund An zwei Standorten wurden die palliativen Versorgungsstrukturen, sektorenübergreifenden Übergänge und Verlaufswege von Patienten mit einem palliativen Versorgungsbedarf untersucht. Der systematische Vergleich von Gemeinsamkeiten und Unterschieden anhand der exemplarischen Fokussierung auf den Themenkomplex „Schmerz“ soll Auskunft darüber geben, inwiefern diese mit standortspezifischen Palliativversorgungskonzepten (integriert und kooperativ) zusammenhängen. Methodik Die Studie verfolgt ein Mixed-methods-Design. Neben einer Dokumentenanalyse von anonymisierten Patientenakten ( n = 774) wurden Experteninterviews ( n = 20), Interviews mit Patienten und Angehörigen ( n = 60) sowie Fokusgruppen ( n = 12) durchgeführt. Ergebnisse Die systematische vergleichende Analyse liefert Hinweise auf konzeptunabhängige Gemeinsamkeiten (z. B. soziodemografische Verteilungen, erschwerte medikamentöse Schmerzbehandlung aufgrund rechtlicher Rahmenbedingungen) wie auch konzeptabhängige Unterschiede (z. B. Verlaufswege, erleichterte kontinuierliche Symptomkontrolle durch integrierte Versorgungsstrukturen) im Rahmen integrierter oder kooperativer Palliativversorgung. Diskussion Gemeinsamkeiten und Unterschiede hinsichtlich der hier fokussierten Schmerzthematik bzw. der im Raum stehenden Symptomlast und ihre organisatorische Bearbeitung werden als Effekte der jeweiligen Organisationsstruktur (= konzeptabgängig) sowie konzeptunabhängiger äußerer Einflussfaktoren greifbar.

Nachwuchsförderung baut auf tragfähiger, konstruktiver Zusammenarbeit auf, die eine kollegiale Betreuung, regelmäßige Unterstützung nicht nur während des Promotionsvorhabens sowie fachliche und methodische Qualifizierungsangebote beinhaltet. Mittelstraß (2011) betont, dass „die Förderung des eigenen Nachwuchses das Wichtigste in der Wissenschaft“ sei [1]. Denn „wo die Förderung des eigenen Nachwuchses, die selbst schon im Studium anzusetzen ist, ausbleibt oder nur unzureichend bleibt, trocknet der Boden aus, auf dem Forschung wächst“ [1].

Transitions at the End of Life Abstract. Transitions in places of care are often associated with a high symptom burden, a constantly growing care network and / or frequent changes between ambulatory and inpatient care. Interface problems occur at the organizational, communication, information, and knowledge levels, as well as in the networking of care facilities and services. Indications of care deficits at the end of life and the extent to which unsuccessful symptom relief or frequent changes between ambulatory and inpatient care can be cushioned are discussed on the basis of study results. At the end of life, open empathic conversations, symptom relief, psycho-social support, and, if necessary, the addressing of spiritual questions with needs-based availability of facilities and services are important cornerstones for the dying and the bereaved. An overview of the various kinds of hospice and palliative care services in the ambulatory and inpatient sector, including those for the bereaved, will also be presented.

ZusammenfassungPalliativversorgung ist die aktive und umfassende Versorgung von Menschen jeden Alters mit erheblichem gesundheitsbezogenem Leiden als Folge unterschiedlichster schwerer und fortschreitender Erkrankungen und insbesondere am Lebensende. Die Einbindung der Palliativversorgung sollte dabei nicht als absoluter Wechsel von einer vorher auf Heilung gerichteten Zielsetzung zu einer ab jetzt nur noch symptomlindernden Behandlung verstanden werden, sondern vielmehr als gradueller Übergang von einer kurativen hin zu einer mehr und mehr palliativen Behandlung. Zur Identifikation von Patientinnen und Patienten mit palliativem Versorgungsbedarf ist bei potentiell lebenslimitierenden Erkrankungen ein Screening sinnvoll. Ebenso kann eine Einteilung in Palliativphasen (stabil, instabil, sich verschlechternd und sterbend) hilfreich sein.

Im Frühjahr 2020 wurden als Teil der Schutz- und Hygienemaßnahmen im ersten Lockdown auch die Fort- und Weiterbildungskurse in den von der Deutschen Krebshilfe geförderten Akademien als Präsenzveranstaltungen auf unbestimmte Zeit verschoben oder ganz abgesagt. Im Verlauf des Frühjahrs wurde schnell klar, dass (gemeinsam) neue Wege beschritten und alternative Lehrformate entwickelt werden müssen.

Background Increasing the quality of life is one of the objectives of palliative care. Meaning in life has a significant influence on the perceived quality of life. We found no studies focusing on patients with young children. Methods Young parents diagnosed with life-limiting disease could participate and create an audiobook. Patients were assessed using Schedule for Meaning in Life Evaluaton (SMiLE) pre and post intervention. The SMiLE is a validated instrument to assess meaning in life. Patients list their individual items that provide meaning in life. In a second step they are requested to rate their current level of satisfaction and in a last step they are asked to rank the importance of each item. Overall indices of weighting, satisfaction and importance are calculated. In addition, participants were interviewed twice over the course regarding expectations, concerns, motivation, and experiences. Results The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years could be included. The involvement with the SMiLE made patients think about their resources. Most important items were in decreasing order family (100%), social relations (79.6%), leisure time (61.1%), nature/animals (38.9%), and home/garden (29.6%). Index of weighting (IOW) was 81.5, index of satisfaction (IOS) was 71.4, and a total SMiLE Index (IOWS) was 72.4. Parent felt limited by their illness in being a mother or father, as they wanted to be. Conclusion Items relevant for young parent showed differences to evaluations of cancer patients and palliative care patients. Most important item for meaning in life is the family numerated by all participants. The results indicate that evaluation of meaning in life is a coping strategy and helps young parent with young children.

Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. The contents of the audiobooks are not part of the evaluation. The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of 7 years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention. Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

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