"Loneliness is a monotonous thing": descriptive qualitative research on the loneliness of caring relatives.

BACKGROUND: The phenomenon of loneliness is increasing worldwide. Caring relatives (CRs) are at high risk of suffering from loneliness. Although some studies have already investigated the issue of loneliness among CRs, there is a lack of evidence to help understand the experience of loneliness in depth. The aim of this study is to record and analyse the experience of loneliness among CRs of chronically ill people. Specifically, the aim is to develop a conceptual model based on the concepts of social, emotional, and existential loneliness. METHODOLOGY: A qualitative-descriptive research design with narrative semistructured interviews was chosen. Thirteen CRs-three daughters, six wives and four husbands-participated in the study. The participants were an average of 62.5 years old. The interviews took place from September 2020 to January 2021 and lasted an average of 54 min. The data were analysed inductively using coding. The analysis was carried out in the following three coding phases: initial open coding, axial coding, and selective coding. The central phenomenon was abductively generated from the main categories. RESULTS: A chronic illness gradually changes the participants' normal lives over time. A feeling of social loneliness is experienced, as their quality of social contacts no longer meets their needs. Thoughts about the future and the question of why are omnipresent can create a feeling of existential loneliness. Lack of communication in the partnership or in the family relationship, the changed personality of the ill person as well as the resulting role shift are stressful. Moments of closeness and tenderness become rare, and a change in togetherness takes place. In such moments, there is a strong feeling of emotional loneliness. Personal needs rapidly fade into the background. One's own life comes to a standstill. Accordingly, loneliness is perceived by the participants to be a stagnant life and is experienced as monotonous and painful. Feelings such as helplessness, powerlessness, frustration, anger, and sadness accompany this loneliness. CONCLUSION: The study results show that the feeling of loneliness is present and experienced in a similar way by CRs, regardless of age and relationship to an ill person and that a need for action must derive from this. With the conceptual model, it is possible to offer versatile starting points for nursing practice, such as sensitization, to foster further research into the topic.

[Caring relatives in General practice-General practitioners' perspectives and solution approaches]. / Pflegende Angehörige in der hausärztlichen Praxis ­ Hausärztliche Sichtweisen und Lösungsansätze.

BACKGROUND: General practitioners are usually responsible for the early detection of burden due to informal care and the coordination of adequate measures. Their individual perspectives and approaches for identifying and supporting caregiving relatives have hardly been examined yet. OBJECTIVE: The study therefore examined subjective perspectives of general practitioners regarding the identification and care of family caregivers in general practitioners' practices. The results will help to evaluate the needs for improvement and conditions for implementation of an instrument to identify informal carers. MATERIAL AND METHODS: To answer the question, we conducted 12 guideline-based expert interviews with general practitioners from Saxony-Anhalt. To evaluate the interviews, we used qualitative content analysis (Mayring). RESULTS: With respect to the medical care and support of caring relatives, the examination of subjective attitudes and perspectives confirmed that general practitioners occupy a central position. It also showed possibilities to improve or to facilitate support of caring relatives. Time-dependent problems and a lack of communication complicate support. Home care services and regional consulting services are available but a systematic cooperation and coordination of competences is still lacking. CONCLUSION: A screening instrument for family caregivers (identification, measuring subjective burden) represents a meaningful intervention. The special requirements and characteristics of interventions used in general medical practice have to be researched, the burden scale for family caregivers should be adapted and implemented accordingly. The cooperation of all actors must be a central aspect of future efforts.

[The method of "town hall talks": a study protocol]. / Die Methode der "Rathausgespräche": ein Studienprotokoll.

BACKGROUND AND AIM: Society is responsible for strengthening "caregiver-sensitive" communities based on the principle of social services to the public and are thus oriented towards the appreciation of caring relatives (CR) of people with dementia (PwD), their capability for self-care and participation. This requires methods to emphasize the social value of informal care and to re-evaluate existing support services. The article aims to present the method of "town hall talks". METHOD: In 20 communities throughout Germany a public town hall talk in which CR, actors in the community (AC) and the citizens enter into a dialogue, was conducted. In three moderated discussion groups the question of communal responsibility for the provision of resources was addressed. These resources should encourage the CR ability of self-care as well as strategies for their support. In order to make a statement regarding the success of the project planning, three pilot town hall talks were evaluated. PREVIOUS RESULTS: The recruitment of the population sample and the organization of the town hall talks in particular are administratively and logistically challenging. The project can only be successful through networking and intensive cooperation between scientists and the communities. In terms of content and logistics, the project planning of the pilot town hall talks was successful. The method received excellent ratings from the majority of the CR and AC. CONCLUSION: Regarding the creation of caregiver-sensitive communities the town hall talks promise great potential. The specific benefit of the method for the CR and the community will be examined.

[Treatment of dementia patients in a geriatric day clinic : Improvement of behavioral abnormalities and distress of caring relatives]. / Therapie mit Demenzkranken in einer geriatrischen Tagesklinik : Verbesserung von Verhaltensauffälligkeiten und Belastungserleben der Angehörigen.

BACKGROUND AND OBJECTIVE: The aim of the study was to evaluate a specific treatment concept for patients suffering from dementia in a geriatric day clinic with respect to improvement of dementia-related behavioral abnormalities and effects on distress of the caring relatives. MATERIAL AND METHODS: Designed as a naturalistic study with a sample of 34 dementia patients (average age 83 years, 62% female, 82% mild dementia, 18% moderate dementia) surveyed at three time points, the dementia-related behavioral symptoms and the relatives' distress were measured using the neuropsychiatric inventory. A waiting time before treatment was implemented as a control condition. RESULTS: Compared with waiting time, a significant improvement of dementia-related behavioral abnormalities was found after treatment, especially in patients suffering from moderate dementia. The distress of caring relatives was clearly reduced. CONCLUSION: The interprofessional treatment of patients with dementia using a specific program in a geriatric day clinic leads to a clear improvement in behavioral symptoms and positively influences the distress of caring relatives.

[Providing knowledge and support for caring relatives with the smartphone - the MoCaB project]. / Über das Smartphone Wissen und Unterstützung für pflegende Angehörige bereitstellen.

Providing knowledge and support for caring relatives with the smartphone - the MoCaB project Abstract. Background: Caring relatives often have a lack of knowledge of illness and care options. Surveys, as part of the MoCaB (Mobile Care Backup) project, showed that this is often experienced as a burden. Aim: The aim is to support caring relatives by increasing their knowledge. Therefore care-relevant knowledge and instructions for self-care should be provided according to their needs. Methods: The core element of the mobile application, personalized knowledge transfer in dialogue form, will be developed in a participative process with potential users. The relevant evidence-based nursing knowledge was reviewed by experts and written down for the target group. Results: So far, 86 relevant topics have been identified and formulated. First usability tests showed that the content itself, the used expressions and the presentation via the MoCaB app are well received. Outlook: In a next step, the app will be tested in the home setting with caring relatives and, in order to identify any further need and areas for improvement.

Das Potenzial neuer Technologien zur Unterstützung von Pflege über eine räumliche Distanz - Literaturstand und qualitative Befunde.

The potential of technological assistance to support distance caregiving - literature review and empirical results Abstract.Background: Due to demographic change, increasing labour mobility and changing family patterns, social relationships often exist over long distances. Supporting relatives over a distance is therefore a highly topical issue but still little discussed, also in Germany and Switzerland. Aim: The project "DiCa" (2016 - 2019) with an interdisciplinary research team from Germany (EH Ludwigsburg) and Switzerland (Careum School of Health, Zurich) aims to investigate different dimensions of "Distance Caregiving". This paper deals with the possible use of new technologies to support these care arrangements. Methods: Based on a literature review, qualitative interviews were conducted with "Distance Carers" and partner companies in Germany to investigate the use of new technologies in the context of "Distance Caregiving". Results: There are initial approaches concerning technical solutions in home care and in companies. So far communication options via telephone and smartphone and flexible working time and workplace regulations have played an important role. However, the potential of new technologies does not seem to be fully explored. Conclusions: In order to make the most of the various possibilities of innovative technologies in the context of "Distance Caregiving" for those affected but also for companies, well-researched information and independent advice and counseling are required for all parties involved in the care process.

"I Needed to Know, No Matter What I Do, I Won't Make It Worse"-Expectations and Experiences of Last Aid Course Participants in Germany-A Qualitative Pilot Study.

BACKGROUND: The need to care for a loved one in a palliative state can lead to severe physical as well as psychological stress. In this context, Last Aid courses have been developed to support caring for relatives and to stimulate the public discussion on death and dying. The purpose of our pilot study is to gain an understanding of the attitudes, values, and difficulties of relatives caring for a terminally ill person. METHODS: A qualitative approach was used in form of five semi-structured guided pilot interviews with lay persons who recently attended a Last Aid course. The transcripts of the interviews were analyzed following Kuckartz's content analysis. RESULTS: Overall, the interviewed participants have a positive attitude toward Last Aid courses. They perceive the courses as helpful as they provide knowledge, guidance, and recommendations of action for concrete palliative situations. Eight main topics emerged during analysis: expectations regarding the course, transfer of knowledge, reducing fear, the Last Aid course as a safe space, support from others, empowerment and strengthening of own skills, and the improvement needs of the course. CONCLUSIONS: In addition to the expectations before participation and the knowledge transfer during the course, the resulting implications for its application are also of great interest. The pilot interviews show initial indications that the impact, as well as supportive and challenging factors regarding the ability to care for relatives to cope, should be explored in further research.

Development and Psychometric Properties of the Community Implementation Behaviour Questionnaire (CIBQ) in the Context of Supporting Caring Relatives of People with Dementia.

The Theoretical Domains Framework (TDF) investigates the determinants influencing the implementation behaviour of actors in healthcare. Caring for people with dementia (PWD) can be burdensome. Therefore, caring relatives (CRs) often rely on support of various actors in their community (CAs). However, the support of this target group is not sufficient, and the implementation of support services needs to be optimised. As it stands, there is no German-language questionnaire to investigate the factors that influence the implementation behaviour of CAs. Therefore, based on the TDF, the Community Implementation Behaviour Questionnaire (CIBQ) was developed in this study. A total of 205 CAs from 16 German communities were surveyed. The 34-item CIBQ asked about their implementation behaviour regarding support services for CRs of PWD. To identify the best model fit, the internal consistency and construct validity were computed. After adaptation, the final CIBQ consisted of ten domains and thirty-one items. The psychometric properties of the questionnaire are as follows: CMIN/DF = 1.63; SRMR = 0.05; RMSEA = 0.07; CFI = 0.92; Cronbach's alpha 0.74-0.89; inter-item correlation 0.38-0.88. The initial results show satisfactory internal consistency and construct validity of the CIBQ. Using the CIBQ enables the health and care optimisation of CRs of PWD.

Community support for caring relatives of people with dementia: qualitative analysis using the Theoretical Domains Framework.

Aim: Although caring relatives of people with dementia are a mainstay of many care systems, the availability of support services for them within the municipal community shows deficiencies. Adopting the Theoretical Domains Framework (TDF) this study aims to investigate 1) which of the TDF domains adapted to gerontology show up in public dialogue, and 2) the results that public dialogues produce in terms of support services for caring relatives. Subject and methods: The data consists of town hall meetings and focus groups from 14 municipal communities in Germany. Participants were caring relatives and stakeholders of the communities. A qualitative content analysis was conducted, focusing on the assessment of three TDF domains, namely knowledge, goals, and sociopolitical context as well as outcomes of care optimisation. Results: With regard to domain knowledge, it was evident that in every community there were actors aware of the situation and relevance of carers and their relatives. Only some actors mentioned goals for optimising the care of the target group. The sociopolitical context is often addressed through statements about incomplete requirements. Conclusion: Overall, a relation between the discussion about the domains in public dialogues and changes in supporting carers of people with dementia can be assumed. The results indicate that an increased discussion about the domains within town hall meetings influences the actors and their statements with regard to the improvement of support services for caring relatives of people with dementia. Since the domains were not developed exclusively for the outlined context, this approach can also be applied to other areas of care. Supplementary information: The online version contains supplementary material available at 10.1007/s10389-022-01744-w.

[What support does a mobile, assistive app provide for informal caregivers? A qualitative analysis of the MoCaB app user experience]. / Unterstützung pflegender Angehöriger durch eine mobile, assistive App. Eine qualitative Analyse der Perspektive von Nutzerinnen und Nutzern der App MoCaB.

BACKGROUND: In the joint project "Mobile Care Backup" funded by the German Federal Ministry of Education and Research, the smartphone-based app "MoCaB" was developed in close cooperation with informal caregivers. It provides individualized, algorithm-based information and can accompany and support caring relatives in everyday life. After a multi-step development, informal caregivers tested the MoCaB app in a home setting at the end of the research project. The goal was to find out how the test persons evaluate MoCaB and in which form the app can provide support to informal caregivers. METHODS: Eighteen test persons caring for relatives participated in a four-week test of MoCaB. Guideline-based qualitative interviews to record usage behavior and experiences with the app were conducted after two and four weeks of testing, transcribed and analyzed using qualitative content analysis. RESULTS: The test persons described the care-related information as helpful. The individualized, algorithm-based mode of information delivery and the exercises provided for family caregivers were generally rated as helpful, but their use depends on the individual usage style. Three dimensions can describe the effects of MoCaB: 1) expansion of care-relevant knowledge, 2) stimulation of self-reflection, and 3) behavior towards the care recipients. DISCUSSION: With few exceptions, the testing caregivers felt that the MoCaB app was enriching. The support dimensions have an effect at different points in everyday life and vary in intensity, depending on the duration of the existing care activity and the individual preferences of the users. CONCLUSION: The way in which caregivers used the app was not always consistent with the expected behaviors. This demonstrates the relevance of open-ended, qualitative research methods in the evaluation of health apps.