Health and social care staff's recognition of elder abuse perpetrated by family members of persons with dementia: a mixed-method study.

BACKGROUND: Health and social care staff play a significant role in detecting and reporting abuse among persons with dementia. However, they are often left to their own judgements which can lead to elder abuse not being detected or acted on. The aim was to explore what healthcare and social care staff consider elder abuse, and their experience of elder abuse perpetrated by family members of persons with dementia. METHODS: This mixed-method vignette study was conducted in Sweden during the year 2021. In total 39 staff working in dementia care were included. They first answered the Caregiver Scenario Questionnaire and then participated in a group interview. RESULTS: An inconsistency was revealed regarding whether a management strategy for behavioural difficulties included in the Caregiver Scenario Questionnaire should be considered an abusive act or not. No participants were able to identify all five abusive behaviour management strategies. Participants described witnessing 101 abusive acts including different types of abuse of a person with dementia, with emotional/psychological abuse and neglect being most common. CONCLUSIONS: Health and social care staff who work close to older persons are able to detect abuse perpetrated by family members. However, inconsistency in defining abusive acts demonstrates the uncertainty in identifying abuse. This may lead to abuse not being identified, but it also creates feelings of inadequacy among staff.

Until death do us part Adult children's perspective of their parents' transition from living at home to moving into a nursing home and the time after death.

BACKGROUND: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. METHODS: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. RESULTS: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. CONCLUSION: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. TRIAL REGISTRATION: Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016.

Experiences and Management of Incidents That Influence Sleep in Patients With Cardiovascular Disease and Insomnia.

BACKGROUND: Insomnia is a global problem and an important risk factor for patients living with cardiovascular disease (CVD), causing poor well-being and worsening disease prognosis. Yet, there is a lack of effective intervention strategies targeting sleep problems. To deliver patient-centered interventions and achieve good quality of sleep for this group, the own experiences of patients with CVD need to be understood. OBJECTIVE: The aim of this study was to describe experiences that influence the sleep situation and management of sleep problems among patients with CVD and insomnia. METHOD: A qualitative descriptive design with critical incident technique methodology was used. Twenty patients (13 men and 7 women; mean age, 73 years; range, 47-83 years) with single or multiple verified CVD diagnoses and insomnia were included. RESULTS: Four underlying categories of sleep disruptors were identified: cognitive, social, physical, and behavioral. Participants experienced distress from the heart condition at night, physically and cognitively, with high levels of concern about its consequences for themselves and their families. Participants' sleep management preferences and responses included cognitive, behavioral, and pharmacological management strategies. Participants preferred their own nonpharmacological insomnia management over professional advice. CONCLUSION: Patients with CVD and insomnia experienced both physical and cognitive distress from their heart condition and chose to adopt nonpharmacological insomnia management. Tailored professional support is needed to change precipitating behavioral factors to be able to treat insomnia, improve sleep, reduce symptom burden, and enhance quality of life.

The heart is a representation of life: an exploration of illness beliefs in couples living with atrial fibrillation.

AIMS AND OBJECTIVES: To explore illness beliefs in couples where one spouse has atrial fibrillation. BACKGROUND: Beliefs are the lenses through which we view the world, guiding our behaviour and constructing our lives. Couples evolve an ecology of beliefs from their interaction whereby their actions and choices arise from their beliefs. Atrial fibrillation is a common cardiac arrhythmia that has implications for both patients and partners. A couple's illness beliefs play an important role in convalescence and illness management, and no previous studies have explored illness beliefs in couples living with atrial fibrillation. DESIGN: A qualitative hermeneutic design. METHODS: Data collection constituted in-depth interviews with nine couples (patient and partner together). Hermeneutic philosophy as described by Gadamer was used to interpret and to understand illness beliefs in couples living with atrial fibrillation. RESULTS: The findings revealed both core illness beliefs and secondary illness beliefs. From the core illness belief 'The heart is a representation of life', two secondary illness beliefs were derived: atrial fibrillation is a threat to life and atrial fibrillation can and must be explained. From the core illness belief 'Change is an integral part of life', two secondary illness beliefs were derived: atrial fibrillation is a disruption in our lives and atrial fibrillation will not interfere with our lives. Finally, from the core illness belief 'Adaptation is fundamental in life', two secondary illness beliefs were derived: atrial fibrillation entails adjustment in daily life and atrial fibrillation entails confidence in and adherence to professional care. CONCLUSION: Couples' interaction has developed mutual illness beliefs regarding atrial fibrillation that guide them in their daily lives and influence their decisions. The adoption of a family-centred perspective in cardiovascular care settings is warranted.

Development of older men's caregiving roles for wives with dementia.

This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices.

Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.

Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person's health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.

Primary care patients with cardiovascular disease eligible for nurse-led internet-based cognitive behavioural therapy for insomnia: Characteristics and motives for participation.

AIM: To describe demographic, physical and psychological characteristics associated with insomnia in patients with cardiovascular disease (CVD) participating in nurse-led Internet-based cognitive behavioural therapy for insomnia (I-CBTI), and their motives and expectations regarding participation in I-CBTI. DESIGN: A mixed method design was applied, including primary care patients with angina pectoris, myocardial infarction, heart failure, atrial fibrillation and atrial flutter or arrhythmia in southern Sweden. METHODS: Data on demographics, insomnia severity and physical and psychological characteristics were collected through self-rated validated questionnaires (n = 126). Motives and expectations were collected through interviews (n = 19) and analysed using the 'personas' model. RESULTS: Physical symptoms and psychological characteristics were associated with insomnia. Three personas were identified: the pragmatist (a curious and optimistic persona), the philosopher (a problem-solving persona) and the philanthropist (an altruistic persona). Expectations were positive among the three personas, but comorbid conditions reduced the perceived ability to make necessary behavioural changes.

Being me and being us in a family living close to death at home.

We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, "being me in a family living close to death" and "being us in a family living close to death." "Being me" meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual's self-image, or "me-ness." This pattern was present at the same time as the pattern of "being us," or in other words, being a family, and dealing with impending death and a new "we-ness" as a group. "Striving for the optimal way of living close to death" was the core theme.

Childrens' and young adults' perspectives of having a parent with dementia diagnosis: A scoping review.

BACKGROUND: Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden. DESIGN AND METHODS: Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed. FINDINGS: Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support. CONCLUSIONS: The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves.

Iranian nurses' preparation for loss: finding a balance in end-of-life care.

AIM: To explore the nurse-patient interaction in terminally ill situations in acute care, focusing on the nurses' preparation for loss. BACKGROUND: Caring for dying patients can be a distressing and sometimes even threatening experience for nurses. Despite the vast body of literature on nurse/patient interaction and the quality of end-of-life care, few studies focus specifically on nurses' experience. DESIGN: A grounded theory approach was used to explore nurses' interaction with dying patients and their families and examine how nurses deal with situations in which the patient's death is inevitable. METHOD: Eighteen nurses were interviewed up to three times each at three teaching hospitals in Isfahan, Iran, during autumn 2006. A shortlist of possible participants was obtained by means of theoretical sampling and those who had experienced the death of patients and were able to express their feelings verbally were selected. RESULTS: The results clarified a core consideration: striking a balance between restorative and palliative care, information and hope, expectations and abilities and intimacy and distance. CONCLUSION: Attaining a balance in caring for dying patients is a major challenge to nurses: it concerns not only their interactions with patients and their families, but also their perceptions of themselves and their actions in end-of-life care. RELEVANCE TO CLINICAL PRACTICE: In end-of-life care, it is important for nurses to be able to change the focus of their care when the patient's condition is diagnosed as irreversible. They also need to be well equipped to maintain a balance, thereby preparing themselves for the patient's forthcoming death.