Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE.

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.

OBJECTIVES: The aim was to explore similarities and differences between seriously ill parents with young children and palliative care patients in Germany to find the best way to support them. METHODS: The Meaning in Life questions were used to find this out. Two researchers asked seriously ill parents about different things that make their lives meaningful. The researchers then compared the results with data from other seriously ill patients in need of palliative care. In Germany, 54 seriously ill parents with young children were interviewed between February 2017 and September 2020. The children were usually seven years old. The compared group consisted of 100 palliative care patients and was mostly older than 49 years. For seriously ill patients most important were family, social relations, leisure time, nature/animals, and home/garden. The values seemed similar, but there are clear differences between the groups. Parents felt their illness limited them in being a mother or a father. CONCLUSION: The questions helped patients helped to remember meaning in life and set goals. The things that mattered to seriously ill parents were different from those that mattered to palliative care patients. All participants said that family was the most important thing for meaning in life. The results show that thinking about meaning in life can help.

A comparison of answers to the meaning in life from seriously ill parents with young children with the answers of other seriously ill patients Background: Caring for seriously ill patients with young children can be very stressful. The quality of life depends on meaning in life. No studies were found that focus on the needs of this patients.

Use of the FallAkte Plus System as an IT Infrastructure for the North Rhine-Westphalian General Practice Research Network: Mixed Methods Usability Study.

BACKGROUND: Primary care research networks can generate important information in the setting where most patients are seen and treated. However, this requires a suitable IT infrastructure (ITI), which the North Rhine-Westphalian general practice research network is looking to implement. OBJECTIVE: This mixed methods research study aims to evaluate (study 1) requirements for an ITI and (study 2) the usability of an IT solution already available on the market, the FallAkte Plus (FA+) system for the North Rhine-Westphalian general practice research network, which comprises 8 primary care university institutes in Germany's largest state. METHODS: In study 1, a survey was conducted among researchers from the institutes to identify the requirements for a suitable ITI. The questionnaire consisted of standardized questions with open-ended responses. In study 2, a mixed method approach combining a think-aloud approach and a quantitative survey was used to evaluate the usability and acceptance of the FA+ system among 3 user groups: researchers, general practitioners, and practice assistants. Respondents were asked to assess the usability with the validated system usability scale and to test a short questionnaire on vaccination management through FA+. RESULTS: In study 1, five of 8 institutes participated in the requirements survey. A total of 32 user requirements related primarily to study management were identified, including data entry, data storage, and user access management. In study 2, a total of 36 participants (24 researchers and 12 general practitioners or practice assistants) were surveyed in the mixed methods study of an already existing IT solution. The tutorial video and handouts explaining how to use the FA+ system were well received. Researchers, unlike practice personnel, were concerned about data security and data protection regarding the system's emergency feature, which enables access to all patient data. The median overall system usability scale rating was 60 (IQR 33.0-85.0), whereby practice personnel (median 82, IQR 58.0-94.0) assigned higher ratings than researchers (median 44, IQR 14.0-61.5). Users appreciated the option to integrate data from practices and other health care facilities. However, they voted against the use of the FA+ system due to a lack of support for various study formats. CONCLUSIONS: Usability assessments vary markedly by professional group and role. In its current stage of development, the FA+ system does not fully meet the requirements for a suitable ITI. Improvements in the user interface, performance, interoperability, security, and advanced features are necessary to make it more effective and user-friendly. Collaborating with end users and incorporating their feedback are crucial for the successful development of any practice network research ITI.

'Not a panacea' - Expert perspectives on the concept of resilience and its potential for palliative care.

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.

What experts think about resilience in palliative care Why was this study done? Resilience is described as a process of coping with stress or adversity while remaining physically and mentally functional. Resilience is subject to a range of definitions. In the context of palliative care, where many other concepts, such as meaning in life, are already used, the definition of resilience also represents a challenge. We wanted to learn how people working in palliative care, defined by us as experts, understand and use the concept of resilience. In addition, there are three different target groups for resilience: patients, significant others and professionals. We wanted to learn about the differences in the application of resilience to these groups. What did the researchers do? We conducted interviews with a total of 21 experts in individual and group settings (so-called focus groups). All interviews and focus groups were audiotaped and transcribed verbatim to analyse them precisely using qualitative methods. What did the researchers find? This study shows how resilience is understood in the work field of the participants: namely as something procedural, dynamic, individual and flexible but normative at the same time. Factors such as the social environment, the number and intensity of crises already experienced (known as the idea of posttraumatic growth), aspects from the field of mindfulness or spirituality can contribute to developing resilience, which is why we call these things resources for resilience. Experts use the term resilience less in their daily work with patients or significant others, but more in education. What do the findings mean? The concept of resilience in palliative care involves both risks and opportunities. Practical work with the concept has to be well reflected and must be applied sensitively. Therefore, it is essential that professional as well as informal caregivers receive specific training that also includes respect for each individual's personal concept of resilience.

[Concept-dependent and -independent care effects of site-specific care concepts using "pain" as an example]. / Konzeptabhängige und -unabhängige Versorgungseffekte standortspezifischer palliativer Versorgungskonzepte am Beispiel "Schmerz".

BACKGROUND: Structures of palliative care, cross-sectoral transitions and care pathways of patients with palliative care needs were investigated at two sites. The systematic comparison of similarities and differences using the topic of 'pain' as an example is intended to provide information on the extent to which these are related to site-specific palliative care concepts (integrated and cooperative). METHODS: The study follows a mixed-methods design. In addition to a document analysis of anonymised patient records (n = 774), expert interviews (n = 20), as well as interviews with patients, relatives (n = 60) and focus groups (n = 12), were conducted. RESULTS: The systematic comparative analysis provides evidence for concept-independent commonalities (e.g. sociodemographic distribution, aggravated pain treatment) as well as concept-dependent differences (e.g. care pathways, facilitated continuous symptom control through integrated care structures) in the context of integrated or cooperative palliative care. DISCUSSION: Commonalities and differences with regard to the topic of pain, as focused on here, and its organisational management become tangible as effects of the respective organisational structure (= concept-dependent) as well as concept-independent external influencing factors.

Audiobooks from terminally ill parent for their children - a qualitative evaluation.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

Patients' priorities in a reminiscence and legacy intervention in palliative care.

BACKGROUND: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients' priorities and primary concerns. OBJECTIVE: This study looks at themes emerging in a reminiscence intervention with patients confronted with a life-limiting disease. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. SETTING/SUBJECTS: Seventeen patients who were receiving palliative care at the University Hospital Bonn participated in interviews reviewing parts or phases of their lives. RESULTS: Patients expressed satisfaction and a sense of well-being with the intervention. Major themes emerging in the interviews were the factors involved in the development and expression of personality, such as character-forming influences, self-image, self-awareness, and philosophy of life. Talking about personality was entangled with influences from growing up, qualification/job, partner/spouse, children, resources, twists of fate/crossroads, and coping. CONCLUSION: The topics emerging from the interviews differed from the scope of guiding questions in common reminiscence methods like Life Review or Dignity Therapy. The underlying motivation of patients seemed to be the search for identity and continuity in one's life.

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study.

BACKGROUND: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. METHODS: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. RESULTS: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. CONCLUSIONS: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.

["He is not that important anymore" : General practitioners in a specialized palliative home care setting from a patient's point of view]. / "Der spielt im Moment nicht mehr ganz die Rolle" : Der Hausarzt in der spezialisierten ambulanten Palliativversorgung aus Patientenperspektive.

BACKGROUND: The outpatient medical care of palliative patients (PPs) has always fallen within the duties of general practitioners. Since the specialized palliative out-patient care (SAPV) legislation in 2007 palliative home care teams (PCTs) were established, providing holistic medical, nursing, and psychosocial support for patients with life-limiting illness and their care providers. OBJECTIVES: The article explores the role of GPs in palliative home care settings with PCTs from the patient's perspective. MATERIALS AND METHODS: From December 2014 to January 2015 we conducted 23 qualitative, semi-structured interviews with severely ill patients receiving specialist palliative care at home in Germany. The theory-based analysis followed the qualitative content analysis according to Mayring. RESULTS: The expectations of PPs towards their GP in integrated palliative care were influenced by individual criteria such as availability, intensity and duration of the doctor-patient-relationship. In relation to the quality of the long-term relationship and more specifically for basic medical care GPs still play an important role. On the other hand, PCTs are becoming increasingly important. In addition to the pain-management and symptom control responsibilities, they meet the daily care needs of PPs and their caregivers by coordinating the care network as well as providing psychosocial support and 24/7-care. CONCLUSIONS: Shifting of traditional tasks from GPs to PCTs influences the role of the GP. PCTs can unburden the GP from unrealistic expectations and improve the patients' quality of life. However, this leads to a tendency for reduced importance of the GP.