Health Literacy in Adults with Chronic Diseases in the Context of Community Health Nursing: A Scoping Review.

Background: Health literacy was identified as a main determinant in self-care of chronic diseases. This results in responsibilities for health professionals for daily practice. For primary care setting, special requirements arise due to the heterogeneity of communities. The objective of this scoping review was to explore and map the scope of the research material on strategies led by community health nurses to improve health literacy in (patients with) chronic diseases. This review aimed to identify gaps in the literature and existing approaches on promoting health literacy by community nurse practitioners. Methods: The following criteria were included for the research: Adults with chronic diseases, health literacy, community health nursing and primary healthcare. All types of searches for studies from 1970 to present were carried out in electronic databases and in a Google and a Google Scholar search. The search procedure is presented in a flow chart. Results: From all reviewed studies, nine records were included in the review. Findings with regard to the increase in health literacy in self-management of chronically ill patients were identified. Conclusion: Studies focusing on specific demands with regard to the role of community health nurses need to be carried out in depth.

Nurses' attitudes towards family importance in nursing care across Europe.

AIMS AND OBJECTIVE: To explore differences in nurses' attitudes regarding the importance of family in nursing care and factors associated with nurses' attitudes across 11 European countries. BACKGROUND: Family involvement in healthcare has received attention in many European healthcare systems. Nurses have a unique opportunity to promote family involvement in healthcare; however, their attitudes and beliefs may facilitate or impede this practice. DESIGN: A cross-sectional survey across European countries. METHOD: A broad convenience sample of 8112 nurses across 11 European countries was recruited from October 2017 to December 2019. Data were collected using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire. We used the STROBE checklist to report the results. RESULTS: There were significant differences in nurses' attitudes about families' importance in nursing care across Europe. Country was the factor with the strongest association with the total scores of the FINC-NA. Older age, higher level of education, increased years since graduation, having a strategy for the care of families in the workplace, and having experience of illness within one's own family were associated with a higher total FINC-NA score. Being male and working in a hospital or other clinical settings were associated with a lower total FINC-NA score. CONCLUSION: Nurses' attitudes regarding the importance of family in nursing care vary across 11 European countries. This study highlights multiple factors associated with nurses' attitudes. Further research is necessary to gain a deeper understanding of the reasons for nurses' different attitudes and to develop a strong theoretical framework across Europe to support family involvement in patient care. The inclusion of family healthcare programs in the baccalaureate curriculum may improve nurses' attitudes. RELEVANCE FOR CLINICAL PRACTICE: In clinical practice, the focus should be on identifying influencing factors on nurses' attitudes to enhance families' importance in nursing care across Europe.

The prevalence of young carers - a standardised survey amongst school students (KiFam-study).

BACKGROUND: Children and adolescents who provide care, assistance or support for a chronically ill family member are called young carers. While there is a growing body of research about their specific situation, needs and impact of caring, only very few studies provide information on prevalence rates. OBJECTIVES: The aim was to provide prevalence data for young carers in Germany, and to describe and quantify the nature and extent of their help. DESIGN: A cross-sectional study. SETTINGS: Data collection took place between 2016 and 2017 in 44 secondary schools (fifth to 13th grade) in North Rhine-Westphalia, Germany. PARTICIPANTS: A total of 6313 students aged from 10 to 22 years participated in this study. They represent 0.5% of the basic population. METHODS: Based on the results of a preliminary qualitative study, a standardised electronic questionnaire was developed, which comprised four subject areas: socio-demographic information, general daily aids, health-related quality of life and chronic illness within the family. Statistical analyses included chi-square tests for nominal data and univariate analyses of variance for metrical data together with 95% confidence intervals. RESULTS: 19.6% (n = 1238) of all respondents state that someone in their family needs help due to a chronic illness. Nevertheless, not all of them are involved in caring activities. The prevalence of those defined as young carers in this study is 6.1% (n = 383), 64% are girls. They take on a wide range of activities. In addition to domestic work, they help their ill relatives with mobility, dressing and undressing, medication, feeding, personal hygiene and with intimate care. CONCLUSIONS: The data provide a good insight into the situation of young carers. The prevalence rate is higher than expected. It refers to the social relevance of this topic and the need for further investigations.

Early caregiving experiences and the impact on transition into adulthood and further life: a literature review.

Internationally, there is a growing body of knowledge about young carers, but there is a lack of research about their experiences in later life and about how their caregiving responsibility influences their transition into adulthood and affects them in their future life. The aim of this literature review is to present the experiences of young adult carers in the phase of life in which many decisions are made for one's own life as an adult. In addition, the retrospective perspective of former caregivers will be described, too. Thirteen studies, published in English or German, were included after critical appraisal. Of these, six focused on the phase of transition and seven gave their attention to the retrospective. The analysis was performed explorative in line with the Grounded Theory Method. The findings of the literature review provide insights into the family situations at the time of caregiving and into the tasks of former young carers. They also impart the positive and negative effects. Former young carers assumed responsibilities they did not want to take over. They often took on the parental role. In retrospective, especially older female siblings felt that they had to change roles, often taking over the mother's role. In this role, they sometimes felt overwhelmed and left alone. Adult former carers feel mentally less healthy and insufficiently strengthened due to the long-term care or support they have given. But there are also positive effects pointed out by former young carers. Many of them are distinguished by outstanding social skills in adulthood. They feel well prepared for life through the care experiences and appreciate the practical skills they have learned. The results of this literature review show that the caring experiences influence the life of former young carers and determine their further life course.

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.

The Perspective of Families With a Ventilator-Dependent Child at Home. A Literature Review.

This literature review gives an overview about the existing research concerning the experiences of families with a child with ventilation at home. The number of children with home-ventilation is increasing. Children who receive homecare have the possibility of growing up in their familiar environment and participate in social life. In comparison to children living in institutions, children at home show advantages in their physical, psychological, emotional, social and cognitive development. However, homecare of a child with ventilation places high demands on all family members. Parents assume divergent roles and live with losses. Especially mothers feel isolated, partially through self-imposed isolation. While parents are concerned about this dilemma, talk about their anxieties and strive for stability, children focus on other aspects of their life. They see the ventilator as a positive technique that helps them breathe. The children underline the importance of friends and would like to meet them without nurses in attendance. They strive for normalcy and independence like healthy children, asking for acceptance of themselves and their wishes. There are only few studies about the experience of families with a child with ventilator. Most studies are from the mother's perspective. Parents and children ascribe different importance to the ventilation. Further research should usefully explore the experiences of families with children using home-ventilation. The different perspectives of all family members have to be taken into consideration.

[Motherhood at the Age of 35 and Over: The Risk of Advanced Maternal Age as Perceived by Women - a Literature Study]. / Mutterschaft ab 35 Jahren: Das Altersrisiko in der Wahrnehmung von Frauen ­ eine Literaturstudie.

Background Delaying motherhood is an ongoing trend in industrialized countries worldwide. The higher the mother´s age, the greater the risks for fertility, pregnancy, childbearing, and for the newborn. The psychosocial situation of women who are conscious of pregnancy risks is thus negatively affected. This paper aims to answer the question as to how women experience the risks of age. Methodology An systematic search of the international literature was carried out between December 2015 and March 2016, using the electronic databases PubMed, CINAHL, PsycINFO, Sowiport, as well as a manual search. The inclusion criterion was the perception of reproductive age risks of motherhood at an advanced age, defined as ≥ 35 years. Results Eleven studies with different designs were evaluated. The participants were sufficiently informed about decreasing fertility rates and the increasing risk of trisomy 21, but less knowledge was shown about the remaining age-associated risks. The awareness of these risks made women feel anxious and scared. They showed various strategies for dealing with their concern: information management, associated with problems of overand misinformation and, in contrast, information avoidance. Other strategies were distraction from thinking about the risks, the need for control and good preparation, or emotional distancing from the pregnancy. The women´s personal risk assessment was complex. They related their social circumstances and their lifestyle and thought about the medical attributions in relative terms. By focusing on giving birth to a healthy child, the mothers often neglected to prepare themselves for living with the newborn. Postpartum they were overwhelmed by the care needed by the newborn child. Discussion The age risk cannot be assessed adequately by those affected. Various phenomena determined through risk research may also appear. There was a meaningful difference between the medically assessed risk and the women's perceived risk. Taking the women´s experience with ageassociated risks and the consequences of motherhood into consideration, it seems necessary to discuss the concept of age risk. Healthcare professionals should focus on health support and encourage older pregnant women to familiarize themselves with family-orientated care of a newborn family member.

Gender disparities in German home-care arrangements.

An ageing population correlates with rising needs for long-term care (LTC). Support programmes should consider the specific needs of the various subgroups of care dependents and family caregivers. The objective of this study was to analyse the gender-specific disparities in home-care arrangements in Germany, and for this purpose, survey and insurance claims data were used. A survey of 2545 insured care recipients with high-level care needs was conducted in 2012 with the Barmer GEK, a major German statutory healthcare insurance. Insurance claims data were provided for a follow-up, focussing on the group aged 60 years and older. For statistical comparison, chi-squared test and t-tests were used, and a p-value < 0.05 was considered statistically significant. Most care recipients are female, and they are on average 2 years older than males. Men receive family care mostly from their wives, whereas widows frequently live alone and receive care from daughters, sons, other relatives, neighbours and friends, as well as from professional nursing services. Furthermore, women more often anticipate the need for (further) professional assistance and move in with a relative or to an assisted living facility or a nursing home in good time. The desired rate for relocation to a nursing home was higher than the anticipated, and during the 6-month follow-up, the actual rate of relocations was in between both. In summary, the caring situation of men and women is different. Care-receiving men are most often cared for by their wives. Widowed women need a social network and their children in order to remain in their own home. To provide better home-care arrangements for women in this situation, the family and social networks need a stronger focus in politics and research. To stabilise the home-care situation of men with high-level care needs, their wives need more support.

Experiências de ser um ex-jovem cuidador: efeitos na transição para a idade adulta e na atual situação de vida / Experiences of being a former young carer: effects in the transition into adulthood and in the present life situation

Este estudo qualitativo tem por objetivo descrever experiências de adultos com responsabilidade de prestação de cuidados durante a infância. Dezesseis entrevistas semiestruturadas com ex-jovens cuidadores foram realizadas e analisadas utilizando procedimentos de codificação aberta e axial e técnicas de comparação constante. Ser responsável enquanto criança, em termos de prestação de cuidados, tem um impacto sobre todos os envolvidos. Ao entrar na idade adulta, a maioria dos ex-jovens cuidadores mantem a responsabilidade para com a pessoa doente. Sentem-se divididos entre o esforço de tentar organizar sua vida de uma nova forma e aferrar-se a uma vida em que a responsabilidade é ainda uma preocupação dominante. Eles permanecem em silêncio sobre a prestação de cuidados devido ao receio de memórias dolorosas ou pela incapacidade de reconhecer-se como ex-jovens cuidadores. O conhecimento da situação de ex-jovens cuidadores permite melhorar a compreensão de como a prestação de cuidados molda a transição para a vida adulta e pode ajudar a evitar um papel de cuidador inadequado para atuais crianças prestadoras de cuidados.

This qualitative study aims to describe the experiences of adults with caring responsibilities during their childhood. 16 semi-structured interviews with former young carers were conducted and analyzed using open and axial coding procedures and constant comparison techniques. Being responsible as a child in terms of caregiving has an impact on every person concerned. When entering adulthood, most former young carers maintain the responsibility for the ill person. They feel torn between the effort of trying to arrange their life in a different way and holding on to a life where responsibility is still a dominant concern. They remain silent about caregiving due to the fear of painful memories, or the inability to recognize themselves as former young carers. Knowledge of former young carers' situation can improve the understanding of how caring shapes the transition into adulthood and can help to prevent an inappropriate caring role of actual caregiving children.

The perspective of siblings of children with chronic illness: a literature review.

This review gives an overview about the existing research concerning siblings' perspective within the familial experiences of childhood chronic illness. Besides attaining a conception of their world, it was intended to identify the unacknowledged issues concerning siblings' experience. Four databases were systematically searched. The analysis was concentrated on nine literature reviews. As a result, we identified a map of dimensions of experiences-well-elaborated as well as fragmentary. Many of the studies were conducted by a proxy and not from the sole siblings' perspective. Further research should concentrate on the sole siblings' perspective, in order to make siblings' voices audible.

Vaginal birth after cesarean in German out-of-hospital settings: maternal and neonatal outcomes of women with their second child.

BACKGROUND: To offer vaginal birth after cesarean (VBAC) in a hospital setting is recommended in international guidelines, but offering VBAC in out-of-hospital settings is considered controversial. This study describes neonatal and maternal outcomes in mothers who started labor in German out-of-hospital settings. METHOD: In a retrospective analysis of German out-of-hospital data from 2005 to 2011, included were 24,545 parae II with a singleton pregnancy in a cephalic presentation at term (1,927 with a prior cesarean and 22,618 with a prior vaginal birth). RESULT: The overall VBAC rate was 77.8 percent. The intrapartum transfer rate to hospital was 38.3 percent (prior cesarean) versus 4.6 percent (prior vaginal) (p < 0.05), and the 10-minute Apgar < 7 rate was 0.6 versus 0.2 percent (p < 0.05), and the nonemergency intrapartum transfer rate was 91.5 versus 85.0 percent (p < 0.05). Prolonged first stage of labor was the most common reason for intrapartum transfer in both groups. The leading reason for postpartum transfer was retained placenta. DISCUSSION: There was a high rate of successful VBAC in this study. The high nonemergency transfer rate for women with VBAC might mean that midwives are more cautious when attending women with a prior cesarean in out-of-hospital settings. Further studies are necessary to evaluate which women are suitable for VBAC in out-of-hospital settings.

Which need characteristics influence healthcare service utilization in home care arrangements in Germany?

BACKGROUND: We see a growing number of older adults receiving long-term care in industrialized countries. The Healthcare Utilization Model by Andersen suggests that individual need characteristics influence utilization. The purpose of this study is to analyze correlations between need characteristics and service utilization in home care arrangements. METHODS: 1,152 respondents answered the questionnaire regarding their integration of services in their current and future care arrangements. Care recipients with high long-term care needs answered the questionnaire on their own, the family caregiver assisted the care recipient in answering the questions, or the family caregiver responded to the questionnaire on behalf of the care recipient. They were asked to rank specific needs according to their situation. We used descriptive statistics and regression analysis. RESULTS: Respondents are widely informed about services. Nursing services and counseling are the most used services. Short-term care and guidance and training have a high potential for future use. Day care, self-help groups, and mobile services were the most frequently rejected services in our survey. Women use more services than men and with rising age utilization increases. Long waiting times and bad health of the primary caregiver increases the chance of integrating services into the home care arrangements. CONCLUSION: The primary family caregiver has a high impact on service utilization. This indicates that the whole family should be approached when offering services. Professionals should react upon the specific needs of care dependents and their families.

Did increased availability of pediatric palliative care lead to improved palliative care outcomes in children with cancer?

BACKGROUND: Awareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer. METHODS: In 2005 we interviewed a cohort of 48 bereaved parents who had a lost a child to cancer approximately five years earlier (2000 cohort), and in 2010 we interviewed another cohort of 48 parents who had lost a child due to cancer approximately five years before (2005 cohort). Children of the 2000 cohort were cared for by six specialized oncology departments in North-Rhine-Westphalia (NRW), Germany, and children of the 2005 cohort by 16 specialized pediatric oncology departments in NRW, Germany. Parents of both cohorts were interviewed using the Survey of Caring for Children with Cancer (SCCC). RESULTS: The children of both parental cohorts were similar in terms of disease characteristics and sociodemographic variables. Children suffered in a very similar manner from core symptoms such as pain and dyspnea. However, symptom treatment increased for all symptoms. In case of treatment of anxiety the increase was statistically significant (p=0.035). Location of care changed with almost three-quarters of the 2005 cohort receiving palliative home care, significantly more than in the 2000 cohort (p=0.007). Additionally, fewer children of the 2005 cohort died in the intensive care unit. CONCLUSION: While the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life.

Children dying from cancer: parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions.

In this study, we investigated the experience of children who died of cancer, as perceived by their parents. All the pediatric oncology departments in one German federal state were contacted and asked to invite parents who had lost a child to cancer in the period 2005-2006 to participate. Those parents who accepted were interviewed by means of a semi-structured questionnaire. In the participating 16 departments, 158 children died in 2005-2006. Parents of 48 children (38.3 percent) agreed to participate and were interviewed. Nearly all of the children had suffered from at least one distressing symptom. Pain and fatigue occurred most frequently. Symptoms were successfully treated over 65 percent of the time. In all, 64 percent of the children received home care services; 50 percent died at home, and only 10 percent in the ICU. Results suggest that some progress has been made in pediatric palliative care. To further improve end-of-life care for children with cancer, it is also necessary to evaluate parents' perspectives on structures for pediatric palliative care delivery.

Germany's First Young Carers Project's Impact on the Children: Relieving the Entire Family. A Qualitative Evaluation.

BACKGROUND: In 2009, the first German young carers project "SupaKids" was implemented in a large German city. The project's concept was mainly based on findings of a prior Grounded Theory study, and the concept's aim was to focus on supporting enrolled families (especially the children) in order to prevent negative effects. Quantitative as well as qualitative data have been assessed for the project's evaluation. In this paper, first results on the mainly qualitative evaluation concerning the project's impact are presented. RESULTS: The project has an impact on the entire family. Both parents and children perceive the project as a kind of shelter, where they a) are allowed to be as they are, b) don't have to explain themselves, c) meet others in similar situations, d) may deposit their sorrows, e) have a first port of call for any problem, f) experience a hiatus from the domestic situation, and g) find friends and peers. All enrolled families value this shelter as a copious relief. CONCLUSIONS: The project's concept has delivered an optimal performance in practice: the family-orientation seems to be appropriate, the concept's modules seem to be all-embracing, and the modular body of the concept has been confirmed. The project relieves the entire family. TRIAL REGISTRATION NUMBER: NCT00734942.

[The impact of caring on young carer's lives. An international literature review (1990-2006)]. / Kinder und Jugendliche als pflegende Angehörige: Wie sich pflegerische Hilfen auf ihr Leben auswirken können. Eine internationale Literaturstudie (1990-2006).

Children growing up with chronically ill parents and those who are involved into the care of their parents are at risk to experience adverse effects on their whole development. This literature study is part of a research project that intends to work out a basis for specific support for young carers and their families in Germany. Questions concerning the impact on young carers, and also experiences of growing up with a chronically ill parent where addressed to the last 15 years' relevant literature. Children experience positive as well as negative effects, but it is difficult to distinguish between caring responsibilities and the impact of growing up with a chronically ill parent. Positive effects are a good sense of self-esteem, maturity, identity, a close relation to the parents, as well as feeling well prepared for further life. Negative effects become apparent for the child's physical, psychosocial and educational development. Not every young carer experiences negative effects, and not every child of a chronically ill parent will necessarily experience disadvantage. Nevertheless, research results refer to the need for action in order to prevent negative consequences for the child's future life. Projects of support need to integrate the whole family and besides supporting the children, the parents need to be stabilised as well.