Home-based care for people living with dementia at the end of life: the perspective of experts.

BACKGROUND: In the last phase of their lives, people living with dementia often indicate restlessness, anxiety or pain. Further, their care is considered inadequate, as they are, for example, sometimes overtreated for curative care or undertreated for pain management. These patients also face multiple barriers in accessing palliative care. This qualitative study explores the perception of experts about how people living with dementia in Germany are cared for at home toward the end of their lives. METHODS: A total of 12 experts involved in outpatient/palliative care were recruited to constitute a purposive, heterogeneous sample. Interviews, which were structured using an interview guide, were conducted with physicians, nurses, representatives of health insurance funds, welfare associations, municipal counselling centres, scientists and coordinators of outpatient palliative care and voluntary work; the interviews were transcribed and analysed via thematic content analysis, based on Kuckartz's method. RESULTS: The analysis of the results led to the establishment of four main categories that focused on formal care arrangements, the roles of relatives in care arrangements, the specifics of dementia, and restrictions on access to palliative care. CONCLUSIONS: Suitable end-of-life care for people living with dementia and support for their relatives require resources and the conceptualisation of specific care arrangements to help minimise potential barriers that prevent access to palliative care.

[Do guidelines for care practice address the stability of home-based care arrangements for people with dementia?-A document analysis]. / Adressieren Handlungsempfehlungen der Versorgungspraxis die Stabilität von häuslichen Versorgungsarrangements von Menschen mit Demenz? ­ Eine Dokumentenanalyse.

BACKGROUND: The care of people with dementia (PwD) living at home is mainly provided by family carers who intend to maintain care at home for as long as possible. In the DZNE-SoCA project, a middle range theory of stability of home-based care arrangements for people living with dementia (SoCA-Dem theory) has been developed. The theory helps to understand the complex phenomenon of stability, provides a theoretical framework that can guide future research and can be used for the (further) development of home care structures. AIM: The aim of this substudy of the SoCA project was to examine whether the SoCA-Dem theory can guide German health and social care practice in dealing with family carers of PwD. MATERIAL AND METHODS: The two guidelines for healthcare professionals, the concept of the Centre for Quality in Care (ZQP) "Quality framework for counselling in care" and the DEGAM guidelines for general practitioners "Family carers of adults", were evaluated using a content analysis with respect to the SoCA-Dem theory. RESULTS: Most concepts that constitute stability are addressed in both guidelines. The SoCA-Dem theory illustrates the importance of the interaction between the different concepts for the stability of home-based care arrangements. In the guidelines, the dynamic interplay remains unclear. CONCLUSION: The SoCA-Dem theory seems to be compatible with the German health care context and can support a future shift from a stress-oriented view of giving care to a more comprehensive one.

Dyadic relationship, carer role, and resources: a theory-driven thematic analysis of interviews with informal carers focusing on the stability of home-based care arrangements for people living with dementia.

BACKGROUND: Most people with dementia live at home and are supported by informal carers. During the care trajectory, the creation of a stable care situation is a guiding principle of informal carers, who often manage complex care arrangements. A recently developed theory - 'Stability of home-based care arrangements for people living with dementia' (SoCA-Dem) - conceptualises how such care arrangements develop over time, and it highlights the relevance of the dyadic relationship, carer role, and resources with regard to the continuation of home-based care throughout the course of dementia. To further explore these three concepts, and to provide feedback for a further refinement of SoCA-Dem theory, this study aims to gain a deeper understanding of (1) how informal carers perceive their dyadic relationship, their carer role, and the resources of the care arrangement, and (2) how these concepts are interrelated. METHODS: This study was a secondary data analysis of n = 11 problem-centred interviews. Data were interpreted by a thematic qualitative text analysis. RESULTS: The findings distinguished subthemes within the concepts and uncovered their interrelations. The kinship relation, living situation and character of the dyadic relationship shaped informal carers' self-conception of the carer role. This influenced the integration of resources into the care arrangement. Conversely, the quantity and quality of informal and formal support resulted in a feeling of relief or overload in the carer role, that shaped the informal carers' way of living their dyadic relationship. The respective forming of the concepts had a significant impact with regard to the perceived stability or instability of the care situation in the examined care arrangements. CONCLUSIONS: This study provided valuable evidence for future research alignment and targeted refinement of the SoCA-Dem theory. Scholars should further explore the specifics of spousal versus parent-child-dyads to better understand the dyads' diverse strategies in the creation of stable home-based care arrangements. Furthermore, future research should focus on the complex dynamics of dyads, family networks, and service providers, and all actors' perspectives should be integrated in SoCA-Dem theory. Based on this growing knowledge base, innovative care interventions and structures should be developed to support people with dementia and their informal carers in better living and caring in the place of their choice.

Differences and commonalities of home-based care arrangements for persons living with dementia in Germany - a theory-driven development of types using multiple correspondence analysis and hierarchical cluster analysis.

BACKGROUND: Most persons with dementia live at home and want to stay there as long as possible. In most cases, informal carers such as spouses or children care for them. Together with other family members and professional carers, they form care arrangements to address the complex needs of persons with dementia. One major aim of informal carers is to keep the care arrangement stable. The middle-range theory of 'stability of home-based care arrangements for people living with dementia' (SoCA-Dem theory) offers a theory to understand what constitutes and influences the stability of home-based care arrangements. Based on this theory, the aim of this study was to (1) uncover the underlying structures of differences and commonalities of home-based care arrangements for persons living with dementia, (2) construct types of these care arrangements, and (3) compare these types with regard to their stability. METHOD: This is a secondary analysis of data from a convenience sample of n = 320 care arrangements for persons with dementia obtained in the observational DemNet-D study. Data were analysed using multiple correspondence analysis and hierarchical cluster analysis. Sociodemographic data and variables related to the structure of the care arrangement (D-IVA), burden of the informal carer (BICS-D), dementia severity (FAST), and quality of life of the person with dementia (QOL-AD) were included. RESULTS: The multiple correspondence analysis identified 27 axes that explained the entire variance between all care arrangements. The two axes 'dementia and care trajectory' and 'structure of the dyadic relationship' best distinguished care arrangements from each other and together explained 27.10% of the variance. The subsequent cluster analysis identified four types of care arrangements. Two types included spouse-centred care arrangements, and two types included child-centred care arrangements at different phases of the dementia and care trajectory. The types differ with regard to their stability. CONCLUSION: The results highlight the heterogeneity and commonality of care arrangements for persons living with dementia. They contribute to a better understanding of informal dementia home care. Furthermore, the results can guide the development of tailored support for persons living with dementia and their caring families.

Towards a middle-range theory of 'Stability of home-based care arrangements for people living with dementia' (SoCA-Dem): findings from a meta-study on mixed research.

BACKGROUND: Most people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability? METHODS: Within the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis. RESULTS: 99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of change and balancing over time; (2) the characteristics of the care arrangement, including needs, the carer role, the dyadic relationship and resources; and (3) the context, which is determined by society and culture and the respective healthcare system. The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer. DISCUSSION: This middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice. OTHER: This meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).

Mothers' and fathers' sense of security in the context of pregnancy, childbirth and the postnatal period: an integrative literature review.

BACKGROUND: From the individual perspective, security, which is essential to life quality, is characterised as an elementary human need that requires fulfilment. During the transition to parenthood, mothers and fathers are confronted with changes in physical and psychosocial processes that are accompanied by uncertainty and insecurity. Feelings of insecurity may have consequences affecting their pregnancy and childbirth experiences as well as their adaption to the parental role in the first weeks following childbirth. In this context, it is important to understand how parents express and interpret their sense of security to effectively support their security needs. This integrative review aimed to provide a critical synthesis of existing research on parents' experiences of their sense of security associated with pregnancy, childbirth and the postnatal period. METHODS: A literature search of the PubMed, CINAHL, PsycINFO and GESIS Sowiport databases was performed. Peer-reviewed papers that were published in English or German between 1990 and 2017 focusing on mothers' and fathers' experiences of sense of security in the context of maternity care were included. A thematic analysis was performed to organise and describe the findings. RESULTS: Eleven research-based papers met the inclusion criteria. Four key themes among the data were analysed: the meaning and manifestation of sense of security, sense of security in relation to confidence and control, lack of feeling secure and coping strategies, and factors influencing sense of security. CONCLUSIONS: The findings revealed a complex profile of the perception of security associated with pregnancy, childbirth and the postnatal period. Sense of security can depend on multiple internal and external factors, which can differ between mothers and fathers. Research on the experiences and perceptions associated with fathers' sense of security is lacking. Further research focused on the experiences of security from the parents' perspective is necessary. Midwives and other involved health professionals should be aware of their role in creating a sense of security among parents. Based on a local specific understanding of security experiences, professional caregivers have the opportunity to support parents more effectively with regard to their specific security needs.

Experiences of nurses with the care of patients with dementia in acute hospitals: A secondary analysis.

AIMS AND OBJECTIVES: To describe nurses' experiences in caring for people with dementia in acute hospital settings. BACKGROUND: Recent research suggests that nurses' experience in caring for people with dementia in acute hospitals is characterised by frustration, overall job dissatisfaction and feelings of powerlessness and guilt. Despite a growing body of knowledge concerning the care of people with dementia in acute care settings, it remains unclear how nurses in acute hospitals provide care for people with dementia and what general conditions characterise the nursing care provided to these patients. DESIGN: A qualitative secondary analysis was conducted. METHODS: Data were collected using audio-recorded focus group discussions with nurses in Germany and Austria. Overall, 12 focus group discussions, which were part of two larger research projects in Germany and Austria, were expanded into a qualitative secondary analysis (a content analysis). RESULTS: The findings show that nurses face great uncertainty in caring for people with dementia in acute hospital settings and that each nurse reacts in different ways to address this uncertainty. The results also underline that, even for nurses who provide some form of person-centred care, the hospital environment imposes several contextual constraints. CONCLUSIONS: Hospitals must minimise constraints to give every nurse the chance to perform person-centred care. Furthermore, it is important to sensitise nurses and give them sufficient training and education to enable them to care for people with dementia. RELEVANCE TO CLINICAL PRACTICE: The results may contribute to a better understanding of the factors that support or constrain person-centred nursing care for people with dementia in acute hospitals.

Individualized formulation-led interventions for analyzing and managing challenging behavior of people with dementia - an integrative review.

OBJECTIVE: Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence. METHODS: An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review. RESULTS: The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior. CONCLUSION: There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes.

Needs of relatives of breast cancer patients: the perspectives of families and nurses.

PURPOSE: Breast cancer is not only a stressful event for those afflicted, but also for their family and friends. In Germany, attention and support from professional nurses is almost exclusively given to the patient. But even relatives require information and support in order to keep their anxiety levels low and strength up. The aim of this study is to survey those needs and the current level of satisfaction, as well as to ascertain which needs are perceived by nurses. METHOD: Data were collected in a German-wide descriptive cross-sectional study surveying 242 relatives and 356 nurses from 150 randomly chosen certified breast care centers between August 2008 and February 2009. Two questionnaires developed for this study were used. RESULTS: The findings indicate that relatives need above all a) security and trust, followed by b) partnership of care and c) emotional support. Regarding satisfaction, relatives consider the need for "security and trust" to be most satisfied. Least fulfilled were those for "partnership of care" and "emotional support". The nurses regarded the importance of most of the relatives' needs to be higher than the relatives themselves. Even the fulfillment of needs was over-estimated. CONCLUSIONS: The targeted and professional involvement of relatives in the care of breast cancer patients is still not common practice. An initial step toward better family nursing is viewing families as an integral part of the patient and intentionally planning contact.

Stress and nursing care needs of women with breast cancer during primary treatment: a qualitative study.

PURPOSE: The primary surgical therapy for breast cancer represents a special phase in the course of the disease. The aim of this study was to find out the specific strains influencing the women affected during this time, and the needs and expectations they had of the nurses. METHOD: In a semistructured interview, 42 women at an early stage of breast cancer were asked about their strains and care needs. RESULTS: The results show that the women interviewed suffer more from psychological strains than physical ones, and express the wish for, above all, emotional support. Analysis of the interviews provides 4 categories of strains: immediate strains regarding the surgery, fear through uncertainty, change of self-perception and the strains caused by the social environment. Care needs can be divided into 3 main areas: wishes for (a) the relationship to the nurses, (b) professional competence and (c) the external conditions of care. CONCLUSIONS: Nurses can support the women well by listening to them, accepting their emotions and informing them in detail. Therewith, they can convey a sense of security to the women and help them to maintain hope and the ability to deal with reality.

[Self-rating and external rating of how women cope with breast cancer in the perioperative phase]. / Coping bei Frauen mit Brustkrebs im perioperativen Bereich - Selbst- und Fremdeinschätzung.

Little is known both about how women suffering from breast cancer cope with their illness in the perioperative phase and about the ability of nurses to assess this. By means of the self-rating and external rating versions respectively of the Bernese Coping Modes (BEFO), it was determined how breast cancer patients cope with their illness during primary surgical therapy. External rating was carried out by the nurses and two researchers. The nurses' rating based on their daily care experiences, and the researcher's rating based on a half-standardized interview. Participants were given the BEFO self-rating questionnaire. As with the patients themselves, the nurses and team members rated attention and care (H(A) 90,5-100%), tackling (H(A) 66,7-100%), passive co-operation (H(A) 59,5-100%) and acceptance/stoicism (H(A) 64,3-97,6%) as the strongest forms of coping. In ranking order of coping modes the researchers rated dissimulation and isolation/suppression and the nurses rated altruism much higher than the patients themselves. Several forms of coping revealed a clear dependence on age. The discrepancy between the ranking order of the nurses' rating versions and the patients' self-ratings were discussed on the basis of empirical findings on communication events between nurses and patients.

[Qualitative investigation into the strain endured by breast cancer patients in initial in-patient therapy]. / Qualitative Untersuchung zu Belastungen von Brustkrebspatientinnen in stationärer Ersttherapie.

In-patient hospital stays and primary breast cancer operations put a strain on the affected women, about which little is known to date. In order to gain a better understanding of this stress situation, 42 primary operated breast cancer patients were surveyed in qualitative interviews during their in-patient hospital stay. Besides suffering from existential anxieties and uncertainties, typical stresses for the perioperative area are the fear of the anaesthesia and operation, the uncertainty felt while waiting for the histological findings, the first change of dressing and the fitting of a prothesis as well as post-operative physical ailments. The area of psychological strain by far exceeds that of physical strain. For this reason, professional care in the perioperative senological area should include the qualified psychosocial support of the affected women, in addition to their classic physical care.

[The needs of breast cancer patients for nursing support during initial stationary treatment]. / Bedürfnisse von Brustkrebspatientinnen nach pflegerischer Unterstützung während der stationären Erstbehandlung.

The aim of this study is to explore the subjective care needs, specially directed at nurses, of women with breast cancer during primary surgical therapy. Investigations have revealed that psychosocial support of affected women can have a positive effect on how they cope with the disease and on the course of the disease. Guideline-aided qualitative interviews with 42 affected women were conducted for the study. Data analysis was performed according to the criteria of an embracing content analysis. The needs of those women interviewed concern three levels: the emotional level encompassing the aspects of nurturance, emotional support and communication in line with patients' needs, the problem level, in which reliable and professionelly correct care is important, and the organisational level, which stands for a patient-friendly organisational culture. Patients' expectations and needs toward nurses are varied, encompassing a wide spectrum of professional nursing care.

[Burden and coping strategies of women suffering from breast cancer during their surgical primary therapy--the view of nurses]. / Belastungen und Bewältigungsstrategien von Frauen mit Brustkrebs in der Phase der chirurgischen Primärtherapie--die Sicht der Pflegenden.

The findings illustrated in this article, are part of a larger research project funded/financed by the Deutsche Krebshilfe e.V., with the aim of gaining understanding of the stresses and strains, coping strategies and needs of women suffering from breast cancer during their surgical primary treatment. Breast cancer leads to a variety of burden for women and their families. To cope with the disease women use different strategies. External assessment and self-assessment of burden and coping sometimes result in different outcomes, such as experts overestimating their patients' fear or depression or uncovering coping strategies oblivious to the interviewees. Qualitative interviews with twelve nurses in three Northern German hospitals were conducted. The content analysis of the interviews followed Mayring's approach. Uncertainty and anxiety are common characteristics for the affected women. The observed strategies can be classified into five categories: to deny the disease, to withdraw from others, to communicate, to comprehend the disease, to accept the disease. Coping strategies such as withdrawal and denial present a challenge to the nurses' communication behaviour. The findings of the survey at hand indicate a demand for suitable care interventions, further education, and training for professionals nursing women with breast cancer. Scientifically supported nursing concepts and specialised nurses are expected to comply with the affected women's special requirements.