Identifying and Supporting Students with a Chronically Ill Family Member: A Mixed-Methods Study on the Perceived Competences and Role Views of Lecturers.

Young adult caregivers experience reduced wellbeing when the combination of family care and an educational program becomes too demanding. We aim to clarify the role views, competences, and needs of lecturers regarding the identification and support of these students to prevent negative mental health consequences. A mixed-methods explanatory sequential design was used. We collected quantitative data using a survey of lecturers teaching in bachelor education programs in the Netherlands (n = 208) and then conducted in-depth interviews (n = 13). Descriptive statistics and deductive thematic analyses were performed. Most participants (70.2%) thought that supporting young adult caregivers was the responsibility of the educational institution, and 49% agreed that it was a responsibility of the lecturer, but only 66.8% indicated that they feel competent to do so. However, 45.2% indicated that they needed more training and expertise to identify and support these students. All interviewees felt responsible for their students' wellbeing but highlighted a lack of clarity regarding their role fulfillment. In practice, their ability to identify and support these students depended on their available time and level of expertise. The lecturers required agreements on responsibility and procedures for further referral, as well as information on support and referral opportunities, communication skills courses, and peer-to-peer coaching.

Growing up with a Chronically Ill Family Member-The Impact on and Support Needs of Young Adult Carers: A Scoping Review.

This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18-25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals' family situations can affect their future. We searched relevant studies following the guideline of Arskey and O'Mailley's methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.

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.

Patients' and family members' perspectives on the benefits and working mechanisms of family nursing conversations in Dutch home healthcare.

The aim of this study is to propose a model of the benefits and working mechanisms of family nursing conversations in home healthcare from the perspective of participating patients and their family members. Family nursing conversations in this study are intended to optimise family functioning, improve collaboration between family and professional caregivers and ultimately prevent or reduce overburden of family caregivers. In a qualitative grounded theory design, data were collected in 2017 using intensive interviewing with participants of family nursing conversations in home healthcare. A total of 26 participants (9 patients and 17 family members) from 11 families participated in a family nursing conversation and the study. Seven nurses who received extensive education in family nursing conversations conducted them as part of their daily practice. Interviews occurred 4-6 weeks after the family nursing conversation. The model that was constructed in close collaboration with the families consists of three parts. The first part outlines working mechanisms of the conversation itself according to participants, i.e. structured and open communication about the care situation and the presence of all of the people who are involved. The second part consists of the benefits that participants experienced during and immediately after the conversation - an increased sense of overview and improved contact among the people involved - and the related working mechanisms. The last part consists of benefits that emerged in the weeks after the conversation - reduced caregiver burden and improved quality of care - and the related working mechanisms. Insight into the benefits and working mechanisms of family nursing conversations may assist healthcare professionals in their application of the intervention and provides directions for outcomes and processes to include in future studies.

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.

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.

Expectations and Prospects of Young Adult Caregivers Regarding the Support of Professionals: A Qualitative Focus Group Study.

There is a lack of service provision for young adult caregivers (18-25 years of age). This study aims to describe the expectations and prospects of young adult caregivers regarding support from health and education professionals. A qualitative focus group design was used. Twenty-five young Dutch adults (aged 18-25 years) who were growing up with a chronically ill family member participated in one of seven focus groups. Qualitative inductive analysis was used to identify codes and main themes. Two overarching themes with five sub-themes emerged from the focus group discussions. The overarching themes are: the 'process of approaching young adults' and the 'types of support these young adults require'. The process of approaching young adults contains the sub-themes: 'recognition, attention, and listening', 'open-minded attitude', 'reliability', and 'respecting autonomy'. The types of support this group requires contains the sub-themes: 'information and emotional support'. Health and education professionals should first and foremost be aware and listen to young adult caregivers, pay attention to them, have an open-minded attitude, respect their autonomy, and have the knowledge to provide them with information and emotional support. Further research could yield comprehensive insights into how professionals can meet these requirements and whether these results apply to male young adult caregivers and young adult caregivers not enrolled in a healthcare-related study program.

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.

Experiences of Dutch students growing up with a family member with a chronic illness: A qualitative study.

Students growing up with a family member with a chronic illness often delay or drop out of school when the combination of family care and their educational programme is too demanding. This study aims to describe the themes experienced by students growing up in this situation. A qualitative focus group design was used. The recruitment for this study was done through an online survey where students could indicate whether they also wanted to participate in a focus group. Twenty-five Dutch students (age 18-25 years) who grew up with a family member with a chronic illness participated in one of the total of seven focus groups. A qualitative inductive analysis was used to identify codes and main themes. Students growing up with a family member with a chronic illness experience responsibility issues, loyalty conflicts, peer alienation, role reversal, negative influence on personal development, daily worries and confronting situations. They reported substantial impact in terms of their general well-being, their family relationships and in their choices for their future. Students articulated that growing up in this situation has a serious and substantial impact on their lives. Further research is required in order to gain comprehensive insights into the requests of these students regarding personal and family support.

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.

Caregiving tasks and caregiver burden; effects of an psycho-educational intervention in partners of patients with post-operative heart failure.

OBJECTIVE: To evaluate the effects of a psycho-educational intervention on caregiver burden in partners of patients with postoperative heart failure. BACKGROUND: Since partners of cardiac surgery patients play a significant role in the patient's recovery, it is important to address their needs during hospitalization and after discharge. METHODS: Forty-two patients with postoperative heart failure and their partners participated in a randomized controlled pilot study. Dyads in the intervention group received psycho-educational support from a multidisciplinary team. Dyads in the control group received usual care. RESULTS: No significant differences were found in the performance of caregiving tasks and perceived caregiver burden in the control versus the intervention group. CONCLUSION: A pilot study exploring the effects of a psycho-educational intervention in patients and their partners did not reveal significant effects with regard to reduced feelings of burden in partners. Alleviating caregiver burden in partners may need a more intense or specific approach.

Long-term follow-up in optimally treated and stable heart failure patients: primary care vs. heart failure clinic. Results of the COACH-2 study.

AIMS: It has been suggested that home-based heart failure (HF) management in primary care may be an alternative to clinic-based management in HF patients. However, little is known about adherence to HF guidelines and adherence to the medication regimen in these home-based programmes. The aim of the current study was to determine whether long-term follow-up and treatment in primary care is equally effective as follow-up at a specialized HF clinic in terms of guideline adherence and patient adherence, in HF patients initially managed and up-titrated to optimal treatment at a specialized HF clinic. METHODS AND RESULTS: We conducted a multicentre, randomized, controlled study in 189 HF patients (62% male, age 72 ± 11 years), who were assigned to follow-up either in primary care (n = 97) or in a HF clinic (n = 92). After 12 months, no differences between guideline adherence, as estimated by the Guideline Adherence Indicator (GAI-3), and patient adherence, in terms of the medication possession ratio (MPR), were found between treatment groups. There was no difference in the number of deaths (n = 12 in primary care and n = 8 in the HF clinic; P = 0.48), and hospital readmissions for cardiovascular (CV) reasons were also similar. The total number of unplanned non-CV hospital readmissions, however, tended to be higher in the primary care group (n = 22) than in the HF clinic group (n = 10; P = 0.05). CONCLUSIONS: Patients discharged after initial management in a specialized HF clinic can be discharged to primary care for long-term follow-up with regard to maintaining guideline adherence and patient adherence. However, the complexity of the HF syndrome and its associated co-morbidities requires continuous monitoring. Close collaboration between healthcare providers will be crucial in order to provide HF patients with optimal, integrated care.

Preferences of heart failure patients in daily clinical practice: quality of life or longevity?

AIMS: Knowledge of patient preferences is vital for delivering optimal healthcare. This study uses utility measurement to assess the preferences of heart failure (HF) patients regarding quality of life or longevity. The utility approach represents the perspective of a patient; facilitates the combination of mortality, morbidity, and treatment regimen into a single score; and makes it possible to compare the effects of different interventions in healthcare. METHODS AND RESULTS: Patient preferences of 100 patients with HF were assessed in interviews using the time trade-off (TTO) approach. Health-related quality of life (HR-QoL) was assessed with the EQ-5D and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Patients' own estimation of life expectancy was assessed with a visual analogue scale (VAS). Of the 100 patients (mean age 70 ± 9 years; 71% male), 61% attach more weight to quality of life over longevity; while 9% and 14% were willing to trade 6 and 12 months, respectively, for perfect health and attach more weight to quality of life. Patients willing to trade time had a significantly higher level of NT-proBNP and reported significantly more dyspnoea during exertion. Predictors of willingness to trade time were higher NT-proBNP and lower EQ VAS. CONCLUSION: The majority of HF patients attach more weight to quality of life over longevity. There was no difference between both groups with respect to life expectancy described by the patients. These insights enable open and personalized discussions of patients' preferences in treatment and care decisions, and could guide the future development of more patient-centred care.

Design and methodology of the COACH study: a multicenter randomised Coordinating study evaluating Outcomes of Advising and Counselling in Heart failure.

BACKGROUND: While there are data to support the use of comprehensive non-pharmacological intervention programs in patients with heart failure (HF), other studies have not confirmed these positive findings. Substantial differences in the type and intensity of disease management programs make it impossible to draw definitive conclusions about the effectiveness, optimal timing and frequency of interventions. AIMS: 1. To determine the effectiveness of two interventions (basic support vs. intensive support) compared to 'care as usual' in HF patients, on time to first major event (HF readmission or death), quality of life and costs. 2. To investigate the role of underlying mechanisms (knowledge, beliefs, self-care behaviour, compliance) on the effectiveness of the two interventions. METHODS: This is a randomised controlled trial in which 1050 patients with heart failure will be randomised into three treatment arms: care as usual, basic education and support or intensive education and support. Outcomes of this study are; time to first major event (HF hospitalisation or death), quality of life (Minnesota Living with HF Questionnaire, RAND36 and Ladder of Life) and costs. Data will be collected during initial admission and then 1, 6, 12, and 18 months after discharge. In addition, data on knowledge, beliefs, self-care behaviour and compliance will be collected. RESULTS: The study started in January 2002 and results are expected at the end of 2005. CONCLUSIONS: This study will help health care providers in future to make rational and informed choices about which components of a HF management program should be expanded and which components can possibly be deleted.