Healthcare interventions for older people with dementia and family caregivers in Europe: A scoping review.

AIM: This study aimed to examine the extent, range and variety of research in Europe describing healthcare interventions for older people with dementia (PwD) and family caregivers. METHODS: This was a scoping review and followed the PRISMA Scoping Review guideline. MEDLINE, CINAHL and Cochrane library databases were searched for studies published between 2010 and 2020. Studies reporting healthcare interventions in Europe for PwD over 65 years and their family caregivers were included. RESULTS: Twenty-one studies from six European countries were included. The types of healthcare intervention identified were categorized as follows: (1) family unit intervention (interventions for both PwD and their family caregiver), (2) individual intervention (separate interventions for PwD or family caregivers) and (3) family caregiver only intervention (interventions for family caregivers only but with outcomes for both PwD and family caregivers). CONCLUSIONS: This review provides insight into healthcare interventions for older PwD and family caregivers in Europe. More studies are needed that focus on the family as a unit of care in dementia.

Relatives' experiences of the transition from intensive care to home for acutely admitted intensive care patients-A qualitative study.

BACKGROUND: Acute admission to an intensive care unit (ICU) can negatively affect quality of life for patients and their relatives. Relatives play an important caregiving role after the patient's admission. More knowledge and understanding of their needs are necessary as the patient transitions home. AIM: This study aims to explore relatives' experiences of acutely admitted ICU patients' transition from the ICU to a general ward and then home. STUDY DESIGN: A qualitative study with a phenomenological approach was conducted. Interviews were in-depth and featured open-ended questions. The interviews took place after the patients transitioned from ICU to home and were conducted online by videoconference. Data were analysed using Colaizzi's seven-step method. RESULTS: Twelve relatives of acutely admitted ICU patients were interviewed. Five main themes emerged: (1) mixed feelings, (2) sense of not being involved, (3) limited information provision, (4) lack of acknowledgement as a caregiver, and (5) an uncertain future perspective. Relatives experience major uncertainties during transitions and prefer to be actively involved in care and care decisions. CONCLUSIONS: This study indicates that relatives of ICU patients experience a lack of guidance during the transitions from the ICU to a general ward and to home, or a follow-up facility. More focus is needed on the themes of mixed feelings, the sense of not being involved, limited information provision, lack of acknowledgement as a caregiver, and an uncertain future perspective. This increased focus might improve the guidance during these transitions. RELEVANCE TO CLINICAL PRACTICE: The insights from this study may help to improve the care of patients and their relatives during the transitions.

The Subjective Component of the Dutch Objective Burden Inventory: A Psychometric Analysis.

BACKGROUND: The reliability and validity of the subjective component of the Dutch Objective Burden Inventory (DOBI) are unknown. OBJECTIVE: The validity and reliability of the subjective component of the DOBI were examined in caregivers of individuals with heart failure, using the original 38- and a 24-item version. METHODS: In an online cross-sectional investigation, confirmatory factor analysis was used to examine factorial validity. In examining convergent validity, corrected item-dimension correlations assessed item performance and associations between subjective subscale scores and the Bakas Caregiving Outcomes Scale. Cronbach's α examined internal consistency. RESULTS: The original 4-factor solution was retained and both the original and shorter versions of the subjective component of the DOBI supported adequate construct validity and internal consistency. CONCLUSIONS: Both the 38- and 24-item forms of the subjective DOBI supported construct validity and reliability. Further studies examining the usefulness of both versions are needed in carers of individuals with more severe HF.

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.

Physicians and nurses view on their roles in communication and collaboration with families: A qualitative study.

BACKGROUND: Families are introduced as new partners in interprofessional communication and collaboration during hospitalisation of an adult patient. Their introduction into the healthcare team has consequences for the roles and responsibilities of all healthcare professionals. Role clarification is thus needed to create optimal communication and collaboration with families. AIM: To gain insight into how physicians and nurses view their own roles and each other's roles in communication and collaboration with families in the care of adult patients. METHODS: A qualitative interpretive interview design was used. Fourteen semi-structured interviews, with seven physicians and seven nurses, were conducted. Data were analysed according to the steps of thematic analysis. For the study design and analysis of the results, the guidelines of the consolidated criteria for reporting qualitative studies (COREQ) were followed. The ethical committee of the University Medical Center Groningen approved the study protocol (research number 202100640). FINDINGS: Thematic analysis resulted in three themes, each consisting of two or three code groups. Two themes "building a relationship" and "sharing information" were described as roles that both nurses and physicians share regarding communication and collaboration with families. The role expectations differed between physicians and nurses, but these differences were not discussed with each other. The theme "providing support to family" was regarded a nurse-specific role by both professions. CONCLUSION: Physicians and nurses see a role for themselves and each other in communication and collaboration with families. However, the division of roles and expectations thereof are different, overlapping, and unclear. To optimise the role and position of family during hospital care, clarification and division of the roles between physicians and nurses in this partnership is necessary.

Involvement of adult children in treatment decision-making for older patients with cancer - a qualitative study of perceptions and experiences of oncology surgeons and nurses.

BACKGROUND: Many older patients with cancer have their family members, often their adult children, involved in a process of treatment decision-making. Despite the growing awareness that family members can facilitate a process of shared decision-making, strategies for involving family members are scarce. Furthermore, literature about shared decision-making pays little attention to family involvement or to the impact that family relations have on the decision process. The purpose of this study was to explore how surgeons and nurses perceive the involvement of adult children of older patients with cancer in treatment decision-making. Subsequently, it identified strategies to ensure family involvement in the decision-making process, used in clinical practice. METHODS: Qualitative open in-depth interviews were conducted with 13 surgeons and 13 nurses working in a university or general hospital. Qualitative content analysis was conducted according to the steps of thematic analysis. RESULTS: Both nurses and surgeons indicated that adult children's involvement in decision-making about treatment increases when patients become frail. They mentioned several characteristics of adult children's behaviour during the decision-making process. Most of these characteristics are beneficial, but they also can be challenging. The distinct nature of adult children's involvement can help older patients with cancer reach better-informed treatment decisions. Health professionals reported six strategies to support positive family involvement in decision-making about treatment. CONCLUSION: Adult children may facilitate a process of shared decision-making and help patients reach well-informed treatment decisions. Health professionals' strategies deliberately support positive family involvement.

Healthcare practices and interventions in Europe towards families of older patients with cardiovascular disease: A scoping review.

BACKGROUND: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure. AIMS: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps. MATERIALS & METHODS: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020. RESULTS: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members' reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach. DISCUSSION: This scoping review provides insight into a variety of healthcare practices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families' well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.

Effects of family nursing conversations on families in home health care: A controlled before-and-after study.

AIM: To assess the effects of family nursing conversations on family caregiver burden, patients' quality of life, family functioning and the amount of professional home health care. DESIGN: A controlled before-and-after design. METHODS: Intervention group families participated in two family nursing conversations incorporated in home health care; control group families received usual home health care. Patients and family members completed a set of questionnaires on entering the study and 6 months later to assess family caregiver burden, family functioning and patients' quality of life. The amount of home health care was extracted from patient files. Data were collected between January 2018-June 2019. RESULTS: Data of 51 patients (mean age 80; 47% male) and 61 family members (mean age 67; 38% male) were included in the results. Family caregiver burden remained stable in the intervention group whereas it increased in the control group. Family functioning improved significantly compared with the control group for patients and family members in the intervention group. No significant effects on patients' quality of life emerged. The amount of professional home health care decreased significantly in the intervention group whereas it remained equal in the control group. CONCLUSION: Family nursing conversations prevented family caregiver burden, improved family functioning, but did not affect patients' quality of life. In addition, the amount of home health care decreased following the family nursing conversations. IMPACT: Countries with ageing populations seek to reduce professional and residential care and therefore encourage family caregiving. Intensive family caregiving, however, places families at risk for caregiver burden which may lead to increased professional care and admission into residential care. This study demonstrates that family nursing conversations help nurses to prevent family caregiver burden and improve family functioning while decreasing the amount of home health care.

Health practices in Europe towards families of older patients with cancer: a scoping review.

INTRODUCTION: In Europe, cancer is one of the predominant causes of mortality and morbidity among older people aged over 65. A diagnosis of cancer can imply a negative impact on the quality of life of the older patients and their families. Despite research examining the impact of cancer on the family, it is unclear what kind of information is available about the types of clinical practice towards older patients with cancer and their families. The aim is to determine the extent, range and variety of research in Europe describing health practices towards families of older patients with cancer and to identify any existing gaps in knowledge. METHODS: Scoping review. RESULTS: A total of 12 articles were included, showing that family interventions are generally based on end-of-life care. Most studies used a qualitative approach and involved different types of family member as participants. Most studies were conducted in the UK. CONCLUSIONS: Review findings revealed limited knowledge about health practices in Europe towards families with an older patient with cancer. This review indicates a need to increase family-focused research that examines health practices that meet the needs of families of older patients with cancer. Seeing cancer as a chronic disease, there is an urgent need for the implementation of family-focused interventions.

The importance of families in nursing care: attitudes of nurses in the Netherlands.

INTRODUCTION: Positive attitudes towards family involvement in nursing care are essential for improving the involvement of and collaboration with patients' families. The aim of this study is to explore nurses' attitudes towards the importance of families in nursing care. METHOD: Using a cross-sectional design, hospital and homecare nurses completed the Families Importance to Nursing Care (FINC-NA) scale, Dutch language version, consisting of four subscales. Data were analysed using descriptive statistics and regression analyses. RESULTS: A total of 426 hospital and homecare nurses were eligible for analysis (mean (SD) age 42 years (13), 93% female). The mean (SD) attitude of nurses was 63.8 (12) (100-point scale) on the FINC-NA. Less than half of the nurses (44%) considered family as a collaboration partner, and 37% of nurses stated that families should be invited to actively participate in planning patient care. The nurses' attitudes were explained by years of work experience in nursing, work setting and existing policy regarding families in patient care. CONCLUSION: This study identifies areas of improvement regarding to nurses' attitudes towards the importance of families in nursing care in order to establish a more family-focused approach in nursing care. Nursing policies should facilitate working with families as part of regular nursing processes. Furthermore, the importance of family involvement in care should be an explicit matter of concern for nursing educational institutions and for policy making within healthcare organisations.

Family caregivers' perceived level of collaboration with hospital nurses: A cross-sectional study.

AIM: To describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses. BACKGROUND: Collaboration between hospital nurses and family caregivers is of increasing importance in older patient's care. Research lacks a specific focus on family caregiver's collaboration with nurses. METHOD: Using a cross-sectional design, 302 caregivers of older patients (≥70 years) completed the 20-item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse and influence on decisions. Data were analysed with descriptive statistics and bivariate correlations. RESULTS: Family caregivers rated their level of trust in nurses and nurses' accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001). CONCLUSION: Family caregivers' collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions. IMPLICATIONS FOR NURSING MANAGEMENT: Insight into family caregivers' collaboration with nurses will help nurse managers to jointly develop policy with nurses on how to organise more family caregivers' involvement in the standard care for older persons.

Psychometric Examination of the Dutch Objective Burden Inventory in Heart Failure Caregivers.

BACKGROUND: Psychometric properties of the 38-item version of the Dutch Objective Burden Inventory (DOBI) have been evaluated primarily in older female caregivers, with no published studies that vary by a different gender and age distribution. OBJECTIVE: The aim of this study was to test the construct validity and reliability of the DOBI in caregivers of individuals with heart failure from the United States and other countries. METHODS: This secondary analysis from a cross-sectional study used an online survey. Factorial validity was tested with confirmatory factor analysis, item performance was examined with ordinal item response analysis, and convergent validity was tested correlating DOBI subscale scores with Bakas Caregiving Outcomes Scale scores. Internal consistency reliability was assessed with Cronbach α. RESULTS: Item response analysis removed 14 items. Confirmatory factor analysis retained the original 4-factor solution. Original and reduced instruments demonstrated good internal consistency. Validity was supported by meaningful associations with the Bakas Caregiving Outcomes Scale. CONCLUSIONS: Both the original 38-item DOBI and the reduced 24-item DOBI had support for their construct validity and internal consistency. The 24-item DOBI may be a useful alternative to the 38-item version, because it maintains psychometric properties of the original instrument while decreasing data collection burden. However, more research is needed to assess whether the shorter version is useful in assessing objective caregiving burden.

Nurses' application of the components of family nursing conversations in home health care: a qualitative content analysis.

AIM: The purpose of this study was to describe how nurses apply the components of family nursing conversations in their home healthcare practice. METHOD: A qualitative content analysis with a deductive approach was conducted. Home healthcare nurses conducted family nursing conversations with families from their practice. Families were selected based on three nursing diagnoses: risk of caregiver role strain, caregiver role strain or interrupted family processes. Nurses audio-recorded each conversation and completed a written reflection form afterwards. Transcripts of the audio-recorded conversations were analysed in Atlas.ti 8.0 to come to descriptions of how nurses applied each component. Nurses' reflections on their application were integrated in the descriptions. RESULTS: A total of 17 conversations were audio-recorded. The application of each component was described as well as nurses' reflections on their application. Nurses altered or omitted components due to their clinical judgment of families' needs in specific situations, due to needs for adjustment of components in the transfer from theory to practice or due to limited skill or self-confidence. CONCLUSION: All of the components were applied in a cohesive manner. Nurses' application of the components demonstrates that clinical judgment is important in applying them. Further training or experience may be required to optimise nurses' skill and self-confidence in applying the components. This study demonstrates the applicability of the family nursing conversations components in home health care, allowing exploration of the working mechanisms and benefits of family nursing conversations for families involved in long-term caregiving in future studies.

The association of collaboration between family caregivers and nurses in the hospital and their preparedness for caregiving at home.

Family caregivers of an older person who was recently hospitalized often feel unprepared for their new or expanded tasks. Quality and continuity of care for older people is expected to improve when nurses collaborate with family caregivers as partners in care. The aim of this study was to explore the unique contribution of collaboration between family caregivers of older patients and hospital nurses as a possible predictor for preparedness of caregiving after hospital discharge. With a cross sectional design, a postal survey was sent to 777 family caregivers of home-dwelling hospitalized patients (≥70 years). Regression analyses were used to test the association between collaboration and preparedness for caregiving. In total, 506 (68%) family caregivers responded of whom 281 (38%) were eligible. Their mean (SD) age was 65 (13) and 71% were female. Family caregivers' level of collaboration with nurses was significantly associated with their preparedness for caregiving.

Students growing up with a chronically ill family member; a survey on experienced consequences, background characteristics, and risk factors.

BACKGROUND: Students living with a chronically ill family member may experience significant pressure, stress, and depression due to their caregiving situation. This may also lead to them delaying or dropping out of school when the combination of being a caregiver and their education program are too demanding. This survey study aims to explore the consequences for students of bachelor or vocational education programs when they are growing up with a chronically ill family member and the influence of various background characteristics and risk factors. METHODS: A survey was sent to 5997 students (aged 16-25 years) enrolled in bachelor or vocational education programs in the north of the Netherlands. The content of the survey was based on a literature study and consultation with experts. Descriptive statistics, Chi-square tests, and logistic regression analyses were performed. RESULTS: A total of 1237 students (21%) responded to the survey. A sub group of 237 (19%) students (mean age 21(2.2); 87% female) identified themselves as growing up with a chronically ill family member. More than half (54.9%) of these students indicated that they experienced negative consequences in daily life. A significant association (OR .42, p < .02) was found for these consequences and the level of education for which attending vocational education yields a higher risk. In addition, growing up with a mentally ill family member was associated with a 2.74 (p = .04) greater risk of experiencing negative consequences in daily life compared to students living with a family member with a physical disorder or multiple disorders. CONCLUSION: Since a substantial number of students growing up with a chronically ill family member indicate serious physical, mental, and social consequences as a result of this care situation, awareness for this specific age-group is needed. Students with a mentally ill family member and students undertaking vocational education appear to be especially at risk. Further research is required in order to gain insight that is more in-depth into the exact type of problems that these students encounter and the specific needs that they have regarding support.

Psychometric evaluation of a revised Family Collaboration Scale.

Measuring family caregivers' experiences of collaboration with nurses is important in the context of health care reforms that advocate an increased role of families in care. The Family Collaboration Scale (FCS) measures collaboration between nurses and family caregivers, however, the scale has a broad scope. Thus, the aim of this study was to construct a measure that is focused on collaboration only. After revision, a 25-item version of the FCS was sent to 777 family caregivers of hospitalized patients (≥70 years). Psychometric evaluation was employed by the Non-Parametric Item Response Theory to evaluate how items of the revised FCS behave. In total, 302 (39%) family caregivers were found eligible, mean (SD) age 65 (13) and 71% female. A 20-item FCS is proposed showing good psychometric properties. This study contributes to the limited knowledge of measuring collaboration between family caregivers and nurses.

Measuring Change in Nurses' Perceptions About Family Nursing Competency Following a 6-Day Educational Intervention.

This study describes nurses' perspectives about their experience of being involved in a 6-day educational intervention which focused on the development of competency in family nursing practice with a particular emphasis on family nursing conversations. The foundational knowledge of the educational intervention was based on the Calgary Family Assessment Model (CFAM) and the Calgary Family Intervention Model (CFIM). A research design incorporating quantitative and qualitative measurement was used. Before and after the family nursing educational intervention, nurse participants (n = 18) completed the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) instrument. The outcomes were analyzed using paired-samples t tests. FINC-NA scores increased by 6.94 points (SD = 5.66, p < .001). To complement the quantitative findings, in-depth interviews were conducted with all of the participants. Participants reported increased awareness of the importance of families in nursing care. In addition to an increase in positive attitudes about families, participants perceived that their knowledge and skills regarding family nursing conversations were more comprehensive. A 6-day educational intervention with a focus on reflection appears useful in helping nurses to "think family" and encouraging perceptions of increased competence in family nursing conversations.

Exploring partners' perspectives on participation in heart failure home care: a mixed-method design.

AIM: To describe the partners' perspectives on participation in the care for patients with heart failure receiving home care. BACKGROUND: Partners are often involved in care of patients with heart failure and have an important role in improving patients' well-being and self-care. Partners have described both negative and positive experiences of involvement, but knowledge of how partners of patients with heart failure view participation in care when the patient receives home care is lacking. DESIGN: A convergent parallel mixed-method design was used, including data from interviews and questionnaires. METHODS: A purposeful sample of 15 partners was used. Data collection lasted between February 2010 - December 2011. Interviews were analysed with content analysis and data from questionnaires (participation, caregiving, health-related quality of life, depressive symptoms) were analysed statistically. Finally, results were merged, interpreted and labelled as comparable and convergent or as being inconsistent. RESULTS: Partners were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation: adapting to the caring needs and illness trajectory, coping with caregiving demands, interacting with healthcare providers and need for knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context. CONCLUSION: The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation.

Families' importance in nursing care-families' opinions: a cross-sectional survey study in the homecare setting.

BACKGROUND: Informal care is an essential part of support provided in the homecare setting. To ensure effective healthcare provision, good communication and collaboration between informal and formal care providers are crucial. To achieve this aim, it is necessary to have a clear understanding of the perspectives of all stakeholders. In the scientific literature, limited knowledge is available regarding family members' opinions about their involvement in care. To date, no instruments have been developed that accurately measure these opinions. This study aims to elucidate the opinions of family members about their involvement in nursing care. METHODS: A cross-sectional survey approach was employed. The methodological steps in this study were (1) convert the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) from a nurses' perspective to a family perspective and thus develop the Families' Importance in Nursing Care-Families' Opinions (FINC-FO) and (2) measure families' opinions regarding their involvement in home nursing care. The questionnaire was sent to 3,800 patients with activated patient portals, which accounts for about 17% of the total patient base. Responses were received from 1,339 family members, a response rate of 35%. RESULTS: The developed FINC-FO questionnaire showed homogeneity and internal consistency. The results of the questionnaire indicate that family members consider it important to be involved in care and that they wish to be acknowledged as participants in discussions about care (planning) but are less inclined to actively participate in the provision of care by nurses. Family members expressed less explicit opinions about their own support needs. Factors such as level of education, type of partnership, and amount of care provided are seemingly associated with these opinions. CONCLUSIONS: Family members in the homecare setting wish to be involved in discussions about care (planning). The transition in care from primarily formal to more informal care necessitates an awareness and clear definition-on part of both healthcare professionals and families-of their respective roles in the provision of care. Communication about wishes, expectations, and the need for support in care is essential to ensure quality of care and that the family can sustain caregiving.