Sterben mit Demenz: die häufigsten Symptome : eine Literaturübersicht

Sensing, observing and interpreting the symptoms of persons suffering from dementia is very challenging. The difficulties lie in their restricted capacity to communicate and irregular transitions from a chronic-stable to an acute-critical condition both in the course of their symptoms and in the slow but continuous process of deterioration. The aim of this integrative literature review was to identify the symptoms dementia patients present in the final twelve months of their lives and to identify instruments for symptom assessment. To this end, a comprehensive literature search within the electronic databases Medline® (PubMed), Cinahl® (EBSCO), PsycINFO® (OVID) and Cochrane Library for systematic reviews® and for clinical trials® in both German and English was performed including publications from January 2000 to July 2012. Six symptoms were identified as frequent and common in the end-of-life phase of people with dementia: respiratory distress, pain, mood swings, restricted mobility, restricted food and fluid intake and behavioural and psychosocial symptoms. Knowledge of atypical symptom manifestation requires critical reflection about perceptions and observations, interpretation of these observations, development of assumptions and location within the context of everyday life in the meaning of clinical reasoning. Das Wahrnehmen, Beobachten und Interpretieren von Symptomen bei Personen mit Demenz in ihrer letzten Lebensphase ist herausfordernd. Die Schwierigkeiten liegen in der eingeschränkten verbalen Kommunikation, in wechselnden Übergängen von chronisch-stabilen zu akut-kritischen Symptomverläufen und in der langsamen aber stetigen Krankheitsverschlechterung. Das Ziel dieser integrativen Literaturübersicht war es Symptome demenzerkrankter Personen in ihren letzten zwölf Lebensmonaten zu erfassen. Hierzu wurden die elektronischen Datenbanken Medline® (PubMed), Cinahl® (EBSCO), PsycINFO® (OVID), Cochrane Library für systematische Reviews® und für klinische Studien® von Januar 2000 bis Juli 2012 in Deutsch und Englisch systematisch durchsucht. Es konnten sechs häufig und gemeinsam vorkommenden Symptome identifiziert werden: Atemnot, Schmerzen, Stimmungsschwankungen, eingeschränkte Mobilität, Ernährungsschwierigkeiten und herausforderndes Verhalten. Das Wissen um eine atypische Symptommanifestation erfordert ein klinisches Urteilsvermögen, das Wahrnehmungen und Beobachtungen kritisch reflektiert und interpretiert, die Entwicklung von Hypothesen und eine Einordnung in den Alltag ermöglicht

Neonatal care delivery for low birth weight infants in the context of continuum of care in Ghana

Introduction and Aims: Effectively coordinated care linkages have high tendency of minimising adverse events associated with low birth weight (LBW) infants. In Ghana, however, linkages across health settings and family support structures are not clearly laid-out. This study elicited the continuum of care for LBW infants to understand how linkages can be strengthened to optimise quality of care. Methods: This study adopted a constructivist grounded theory design. Data collection took place in a municipality in Ghana between 2020 - 2021 with families, health professionals and managers providing care in clinical and community-based facilities. Audio recorded in-depth interviews were analysed using initial and focused coding, constant comparative analysis, theoretical memos, and diagramming until theoretical sufficiency was determined. Results: Analysis of 25 interviews generated an interpretive theory showing that referral, discharge, and review processes were not systematically planned and documented. Neonatal care knowledge was lacking due to insufficient investments in coordination and trainings with awareness creation on newborn health thought to reduce misconceptions. Motivated staff, implementation of care guidelines and staff supervision were identified as enabling factors. Mothers lacked financial and practical support and needed assistance in balancing their hope and confidence and empowerment to care for their LBW infants. To overcome these challenges, early bonding and family involvement were helpful. Discussion: A coordinated care process, family, and community involvement through adoption of a family system approach is necessary. Implementing guidelines, providing training opportunities, involving stakeholders, and promoting committed leadership can improve quality in the care continuum

Health-system drivers influencing the continuum of care linkages for low-birth-weight infants at the different care levels in Ghana

Background: Low birth weight (LBW) is associated with short and long-term consequences including neonatal mortality and disability. Effective linkages in the continuum of care (CoC) for newborns at the health facility, community (primary care) and home care levels have a high tendency of minimizing adverse events associated with LBW. But it is unclear how these linkages work and what factors influence the CoC process in Ghana as literature is scarce on the views of health professionals and families of LBW infants regarding the CoC. Therefore, this study elicited the drivers influencing the CoC for LBW infants in Ghana and how linkages in the CoC could be strengthened to optimize quality of care. Methods: A constructivist grounded theory study design was used. Data was collected between September 2020 to February 2021. A total of 25 interviews were conducted with 11 family members of LBW infants born in a secondary referral hospital in Ghana, 9 healthcare professionals and 7 healthcare managers. Audio recordings were transcribed verbatim, analyzed using initial and focused coding. Constant comparative techniques, theoretical memos, and diagramming were employed until theoretical saturation was determined. Results: Emerging from the analysis was a theoretical model describing ten major themes along the care continuum for LBW infants, broadly categorized into health systems and family-systems drivers. In this paper, we focused on the former. Discharge, review, and referral systems were neither well-structured nor properly coordinated. Efficient dissemination and implementation of guidelines and supportive supervision contributed to higher staff motivation while insufficient investments and coordination of care activities limited training opportunities and human resource. A smooth transition between care levels is hampered by procedural, administrative, logistics, infrastructural and socio-economic barriers. Conclusion: A coordinated care process established on effective communication across different care levels, referral planning, staff supervision, decreased staff shuffling, routine in-service training, staff motivation and institutional commitment are necessary to achieve an effective care continuum for LBW infants and their families

Experiences of families and health professionals along the care continuum for low-birth weight neonates : a constructivist grounded theory study

Aims: To explore the experiences of health professionals and families concerning supporting low-birth weight (LBW) infants along the continuum of care (CoC) in Ghana with the goal to unveil new strategies to improve the quality of neonatal care. Design: A constructivist grounded theory. Method: Simultaneous data collection and analysis among health professionals alongside families with LBW infants from September 2020 to April 2021. The study used constructivist grounded theory strategies for data collection and analysis. Results: The analysis of 25 interviews resulted in a theoretical model describing 10 themes along the CoC for LBW infants, categorized into health and family systems drivers. In this paper, we focus on the latter. Early bonding and family involvement were empowering. Mothers needed assistance in balancing hope and confidence which enabled them to render special care to their LBW infants. Providing mothers with financial and domestic support as well as creating awareness on newborn health in communities were important. Conclusion: To achieve family involvement, a coordinated CoC must entail key players and be culturally inclusive. It must be applied at all levels in the CoC process in a non-linear faction. This can help LBW infants to thrive and to reach their full developmental potential. Impact: The theoretical model developed shows the importance of family involvement through family systems care for a comprehensive response in addressing needs of health professionals and families with LBW infants and bridging the fragmentations in the neonatal CoC in Ghana. Context-tailored research on family systems care in the neonatal period is necessary to achieve a quality CoC for LBW infants and their families. Patient or Public Contribution: Caregivers and providers participated by granting in-depth interviews. Care providers further contributed through their feedback on preliminary findings