Self-Assessment Instruments for Supporting Family Caregivers: An Integrative Review.

Family caregivers take on a variety of tasks when caring for relatives in need of care. Depending on the situation and the intensity of care, they may experience multidimensional burdens, such as physical, psychological, social, or financial stress. The aim of the present study was to identify and appraise self-assessment instruments (SAIs) that capture the dimensions of family caregivers' burdens and that support family caregivers in easily identifying their caregiving role, activities, burden, and needs. We performed an integrative review with a broad-based strategy. A literature search was conducted on PubMed, Google Scholar, Google, and mobile app stores in March 2020. After screening the records based on the eligibility criteria, we appraised the tools we found for their usefulness for family care and nursing practice. From a total of 2654 hits, 45 suitable SAIs from 274 records were identified and analyzed in this way. Finally, nine SAIs were identified and analyzed in detail based on further criteria such as their psychometric properties, advantages, and disadvantages. They are presented in multi-page vignettes with additional information for healthcare professionals. These SAIs have proven useful in assessing the dimensions of caregiver burden and can be recommended for application in family care and nursing practice.

A Conceptual Model of Experiences With Digital Technologies in Aging in Place: Qualitative Systematic Review and Meta-synthesis.

BACKGROUND: Older adults with chronic illnesses or dependency on care who strive to age in place need support and care depending on their illness. Digital technology has enabled the possibility of supporting older adults in their wishes to age in place. However, current studies have mainly focused on the solitary evaluation of individual technologies or on evaluating technologies for specific illnesses. OBJECTIVE: This study aimed to synthesize research on the experiences of older people from the Western culture with chronic illnesses or care needs and their families with digital technology for aging in place. From the meta-synthesis, a model was derived that can be useful for the development of assistive devices in old age and that can support health care providers and professionals in their work with affected individuals. METHODS: A systematic review and qualitative meta-synthesis was performed using an inductive approach, as proposed by Sandelowski and Barroso. We performed a systematic literature search in 6 databases from 2000 to 2019, with an update in 2021 and, in addition, conducted a hand search in 2 databases, relevant journals, and reference lists. The results of each study were analyzed using initial and axial coding, followed by theoretical coding. A conceptual model was derived. RESULTS: A total of 7776 articles were identified. Articles were screened independently by 2 authors based on the eligibility criteria. Finally, of the 7776 studies, 18 (0.23%) were included in the meta-synthesis. The derived conceptual model describes older adults with chronic illnesses or dependency on care and their family members in an individual process of reflection and decision-making, starting with the use of a digital device. Older adults live in times of change. They experience stable and unstable times of illness as they are part of a changing digital world. Hence, older adults and their families consider digital technology a solution to their current situation. As they become familiar with a specific digital technology, they refine their needs and demands, gain confidence in its use, and note its advantages and disadvantages. They weigh hopes, needs, demands, and experiences in a process of reflection to decide on convenience and inconvenience. Independent of their decision, they achieve peace of mind either with or without digital technology. This process can restart repeatedly during the illness trajectory of older adults. CONCLUSIONS: This study promotes a differentiated understanding of older adults' experiences with digital technology. The conceptual model can be useful for the development of assistive technology in old age. Moreover, it can guide health care professionals in their work with older adults and their families to provide individual counseling to find the appropriate digital technology for their respective situations.

Professional Care Experiences of Persons With Suicidal Ideation and Behavior: Model Development Based on a Qualitative Meta-Synthesis.

BACKGROUND: Health care professionals (HCPs) are challenged in caring for persons with suicidal ideation or behavior. For affected persons, professional care is essential, and being interviewed about their experiences can be stressful. The experiences of persons ideating or attempting suicide are essential to designing eHealth products to support them in crises and provide continuous care. OBJECTIVE: This study aimed to synthesize published qualitative research about how persons with suicidal thoughts or behavior experience inpatient or outpatient care. A model will be derived from the meta-synthesis to guide HCPs in their work with affected persons and provide a thorough needs assessment for eHealth development. METHODS: A qualitative meta-synthesis was conducted using an inductive approach, as proposed by Sandelowski and Barroso. The inclusion criteria were studies in English and German that dealt with persons who ideated or attempted suicide. Relevant articles were identified by searching the PubMed and Cinahl databases and by hand searching relevant journals and reference lists. The findings of each study were analyzed using initial and axial coding, followed by selective coding. Finally, a conceptual model was derived. RESULTS: In total, 3170 articles were identified in the systematic literature search. Articles were screened independently by 2 researchers based on the eligibility criteria. Finally, 12 studies were included. The central phenomenon observed among persons ideating or attempting suicide is their process from feeling unanchored to feeling anchored in life again. During inpatient and outpatient care, they experience being dependent on the skills and attitudes of HCPs. While helpful skills and attitudes support persons ideating or attempting suicide to reach their feeling of being anchored in life again, adverse interactions are experienced negatively and might lead to prolonging or maintaining the feeling of being unanchored in life. CONCLUSIONS: The study promotes a differentiated view of the experiences of persons ideating or attempting suicide. The derived conceptual model can guide HCPs in their work with affected persons to support affected persons during their recovery. Moreover, the conceptual model is useable as a springboard to develop eHealth solutions for crisis situations and long-term care.

Kenneth Gergen's concept of multi-being: an application to the nurse-patient relationship.

The nurse-patient relationship is of great significance for both nurses and patients. The purpose of this article is to gain an understanding of how the individual is constituted through a focus on the execution of the patient's and nurse's role in the joint relationship. The article represents a social-constructionist consideration using Kenneth Gergen's concept of multi-being. Gergen's notions of the self as a multi-being focuses on the individual's relational character through former relationships and social interactions. Gergen's concept is applied onto nurses and patients as individuals to gain an understanding of the broader institutional and social context of each role and their interactions within the nurse-patient relationship. The article focuses on the nurse-patient relationship in general with regard to specific challenges in the home care setting. Various demands and experiences from a myriad of past relationships merge as potential actions for nurses and patients during the forming of a relationship. Nurses as multi-beings see themselves confronted with guidelines and legal conditions, their own as well as the patients' expectations and the actual possible forming of a relationship in the light of daily nursing care. Patients as multi-beings experience an extended social environment that comprises the nurse-patient relationship while simultaneously having to cope with illness and increasing care dependency within their own homes. Discrepancies can be observed in the relationship with regard to the inherent human qualities, the demands of forming a relationship, and the actual relationship arising due to framework conditions.

Transitions as experienced by persons in palliative care circumstances and their families - a qualitative meta-synthesis.

BACKGROUND: When receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances. METHODS: A qualitative meta-synthesis was conducted following an inductive approach as proposed by Sandelowski and Barroso. Inclusion criteria were studies with adult persons in palliative situations and articles published in English or German. Relevant articles were identified by researching the Pubmed and Cinahl databases, as well as by hand searches in journals and reference lists for the period 2000-2015. The findings of each study were analyzed using initial coding, followed by axial and selective coding in this order. Consequently, a conceptual model was derived from the categories. RESULTS: In total 2225 articles were identified in the literature search. Finally, 14 studies were included after the selection process. The central phenomenon observed among palliative care patients and their families was maintaining normality during transitions. Transitions are initially experienced unconsciously until a crisis occurs and responsive actions are necessary, which encourages patients and families to perceive the situation consciously and develop strategies for its negotiation. Patients remain caught between hopelessness and valuing their remaining time alive. As the illness progresses, informal caregivers reprioritize and balance their roles, and after death, family members inevitably find themselves in changed roles. CONCLUSIONS: In palliative care situations, transitions are experienced differently by patients and their families in a constant phenomenon that oscillates between unconscious and conscious perceptions of transitions. The derived conceptual model offers an additional perspective to existing models and helps to clarify the phenomenon in practical settings. The study promotes a differentiated conceptual view of transitions and emphasizes patients' and families' perspectives.

Perceived Health-Related Quality of Life in Women With Vulvar Neoplasia: A Cross Sectional Study.

OBJECTIVE: The aim of the study was to determine health-related quality of life (HRQoL) of women with surgically treated vulvar intraepithelial neoplasia (VIN) and vulvar cancer (VC) during the first week after hospital discharge. Further objectives were to investigate differences between women with VIN and VC as well as to examine whether correlations exist between women's symptom experience and HRQoL. METHODS: This cross-sectional study was conducted in 8 hospitals in Germany and Switzerland. Women with VIN and VC rated HRQoL with the validated German Short-Form 36. Differences between HRQoL in women with VIN and VC were tested with Wilcoxon rank-sum score. The WOMen with vulvAr Neoplasia (WOMAN) - Patient reported Outcome (PRO) self-report instrument was used to measure women's symptom experience. Correlations between symptoms and HRQoL were calculated using Spearman correlation coefficient. RESULTS: Women with VIN and VC (n = 65) reported lower HRQoL in physical aspects (Physical Component Summary [PCS], 34.9) than that in mental aspects (Mental Component Summary, 40.5). Women with VC had lower HRQoL than women with VIN, as manifested by significant differences concerning the dimensions of "physical functioning" and "role-physical." "Difficulties in daily life" as a distressing symptom correlated with MCS and PCS. Wound-related symptoms correlated with PCS and psychosocial symptoms/issues with MCS. CONCLUSIONS: Analysis showed that women with vulvar neoplasia reported lower HRQoL in the physical and mental dimensions 1 week after discharge than comparable studies referring to months or years after surgery. Health-related quality of life is influenced by physical impairment because physical symptoms are prevalent 1 week after discharge. Patient education should focus on symptom management in an early postsurgical phase to enhance women's HRQoL.