Beyond loss: An essay about presence and sparkling moments based on observations from life coexisting with a person living with dementia.

This is an essay based on a story with observations, about present and sparkling moments from everyday life coexisting with a mother living with dementia. The story is used to begin philosophical underpinnings reflecting on 'how it could be otherwise'. Dementia deploys brutal existential experiences such as cognitive deterioration, decline in mental functioning and often hurtful social judgements. The person living with dementia goes through transformation and changes of self. Cognitive decline progressively disrupts the foundations upon which social connectedness is built, often creating a profound sense of insecurity. The challenge for carers and healthcare professionals is therefore to find ways of clarifying a concept of agency. It will be worthwhile developing the ability of attuning into 'what is there' arising from every corner of the care situation. Understanding and practicing this can strengthen existence and the experience of connectedness and meaning, empowering the person with dementia. It is important to find ways, relational moves, in which carers and healthcare professionals can embed the creativity appearing in mundane everyday situations filled with surplus of meaning, sharing mental landscapes (and embodied relational understanding) with the person living with dementia - seizing and sharing aesthetic moments (verbal and nonverbal) being present together. We argue that carers and healthcare professionals may find this understanding of care useful. This implies looking into a phenomenological-hermeneutic perspective developing competences as well as practical wisdom understanding and being aware of the creative and innovative possibilities (often preverbal and unnoticed small things) in everyday life of what we, inspired by psychoanalyst Daniel Stern, call sparkling moments of meeting, creating experience with the other that is personally undergone and lived through in the present.

Facilitating a safe and caring atmosphere in everyday life in forensic mental health wards - a qualitative study.

PURPOSE: To explore healthcare professionals' experiences with facilitating a safe and caring atmosphere in patients' everyday lives in forensic mental health wards. METHODS: This qualitative study employed interviews with 16 healthcare professionals working shifts in two forensic mental healthcare wards in Norway. Data were analysed using phenomenological hermeneutic analysis. RESULTS: The findings are presented in terms of two themes. The first theme is "Creating a calming atmosphere" and includes the subthemes "Creating caring surroundings with safety, comfort and trust" and "Balancing everyday life activities". The second theme is "Facilitating risk assessments and care" and includes the subthemes "Acting as a team", "Becoming aware of the meaning in signs" and "Becoming aware of vulnerability and the window of tolerance". CONCLUSIONS: Involvement in patients' history and lived lives is important both for understanding general social behaviour as well as for assessing signs, symptoms, and changes in patients' conditions; furthermore, it provides valuable information that allows healthcare professionals to become aware of the underlying meanings in signs, which can facilitate examinations and treatment. Acting as a team is essential to solve issues in a calm and safe way when signs of violence occur. In addition, our participants highlighted the need to be aware of individual patients' vulnerability and windows of tolerance to obtain a deeper understanding of patients' lived lives as a whole in the context of providing therapy and care to patients.

Carers' experience of everyday life impacted by people with dementia who attended a cognitive stimulation therapy (CST) group intervention: a qualitative systematic review.

ObjectivesTo explore carers' experiences of everyday life impacted by people with dementia who attended a seven-week cognitive stimulation therapy (CST) group intervention.MethodsA systematic review of qualitative studies and qualitative mixed method studies was conducted. Eight databases were searched. The selected studies were screened and assessed for methodological quality using the Rayyan Qatar Computing Research Institute (QCRI) and Critical Appraisal Skills Programme Qualitative Checklist (CASP-QC). Three studies were included following an inductive content analysis.ResultsTwo themes were identified: 'Enrichment by enhanced communication' and 'Growth through positive emotional interaction'.ConclusionQualitative research on the impact of the CST group intervention on carers' everyday life with a person with dementia is scarce. Carers experienced feelings of enrichment due to improvement and equality in communication and a possible source of happiness. There was a sense of togetherness and reconnection through music and singing together as well as a sense of mutual growth, increased positive interaction, increased ability to socialize, and feelings of fondness when experiencing glimpses of the previous personality of the person with dementia. Nevertheless, knowledge about the impact of the CST group intervention on carers' personal everyday life is lacking and requires further research.

Needs of carers participating in support groups and caring for a person with dementia: A focused ethnographic study.

AIMS: The aim is to explore and understand how support group participation meets carers' perceived needs for information and social and emotional support when caring for a person with dementia who lives at home. DESIGN: Focused ethnographic design. METHODS: Participant observations and semi-structured interviews with 25 carers were conducted. An inductive content analysis of the data was performed. FINDINGS: Two themes were identified: "Strengthening the sense of self" and "Managing uncertain benefits." CONCLUSION: Carers' level of information about dementia was partly met, thereby strengthening their sense of self and joy. Maintaining shared decision-making in financial matters was viewed as an expression of respect and reciprocity. Getting acquainted with peers and dementia coordinators was viewed as emotional and social support but was also used strategically to gain easier access to health care services. By fulfilling their needs, support group meetings became meaningful, which motivated carers to continue providing care.

Ethical dilemmas embedded in performing fieldwork with nurses in the ICU.

BACKGROUND: Background: In general, qualitative research design often involves merging together various data collection strategies, and researcher's may need to be prepared to spend longer periods in the field to pursue data collection opportunities that were not foreseen. Furthermore, nurse researchers performing qualitative research among patients and their relatives often experience unforeseen ethical dilemmas. AIM: This paper aimed to explore aspects of ethical dilemmas related to qualitative nursing research among patients and their relatives in the intensive care unit (ICU). RESEARCH DESIGN: This paper is based on a qualitative researcher's personal experience during a hermeneutic phenomenological study involving close observation and in-depth interviews with 11 intensive care nurses. Data were collected at two ICUs in two Norwegian university hospitals. ETHICAL CONSIDERATIONS: The study was approved by the Norwegian Social Science Data Services (NSD). The Regional Committee for Medical and Health Research Ethics (REK) granted dispensation to the project regarding health personnels confidentiality of the patients who were present during the observation (2012/622-4). FINDINGS: Close observation with nurses in the ICU requires the researcher to balance being a qualitative researcher, an ICU nurse and a sensitive fellow human being open to the suffering of the other-that is, being embodied, engaged and affected by sensitive situations and simultaneously constantly stepping back and reflecting on the meaning of those situations. CONCLUSIONS: The qualitative researcher's ethical awareness also entails knowing and acknowledging his or her own vulnerability, which becomes apparent in the researcher-participant relationship and settings in which being a fellow human always overrules the researcher's role in ethical dilemmas.

Support groups for carers of a person with dementia who lives at home: A focused ethnographic study.

AIMS: To explore and understand carer participation in support groups when caring for a person with dementia who lives at home. DESIGN: Focused ethnographic design. METHODS: Participant observations and semi-structured interviews were conducted from January-December 2015. The data were collected from four support groups in the Danish primary healthcare system. Interviews were conducted with 25 carers. An inductive content analysis of the data was performed. RESULTS: Three themes were identified: emotional well-being due to peer and family support, emotional sense of togetherness despite hardships and emotional and ethical considerations in caregiving. CONCLUSION: Support group participation with positive peer interaction increases carer self-esteem and feelings of togetherness, and an awareness of maintaining the care receiver`s dignity and prevention of conflicts with families, resulting in an improvement in carer well-being, leading to increased motivation to continue caring. Carers who hid their group participation face a potential conflict with the care receiver. IMPACT: By sharing positive experiences, carers have increased self-esteem and feelings of togetherness, which can have a positive impact on their motivation to continue caring. Positive peer interaction encouraged a shift in focus from negative to positive experiences, resulting in an improvement in carer well-being. Joint group participation prevented conflicts in families. To protect the care receivers, carers kept support group participation a secret. Healthcare professionals could improve carer well-being by focusing on positive caring experiences in support groups.

The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review.

BACKGROUND: Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers' stress and burden, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. OBJECTIVES: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. TYPES OF PARTICIPANTS: Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. PHENOMENA OF INTEREST: How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations where support groups for informal caregivers were held and studied. TYPES OF STUDIES: Studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. TYPES OF OUTCOMES: Subjective accounts of the informal caregivers' perceptions of the meaningfulness associated with participating in support groups. Beliefs, benefits, rewards and attitudes related to a caregiver's experiences as a participant in support groups and in the role as caregiver. The perception by informal caregivers of participating in support groups as a way to release stress. SEARCH STRATEGY: The search aimed at finding published and unpublished studies in English, German, Danish, Swedish and Norwegian, and was unrestricted by time. Eleven electronic databases and eleven websites were searched. METHODOLOGICAL QUALITY: Methodological quality of the qualitative papers was assessed independently by two reviewers using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. DATA EXTRACTION: Qualitative data were extracted from papers included in the review using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. DATA SYNTHESIS: Qualitative research findings were synthesized using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. RESULTS: A total of 59 findings from five studies were aggregated into five categories. Three synthesized findings were generated based on the meta-aggregation of the categories: 1) emotional benefits of peer-based support; 2) facing the challenges of caregiving; and 3) embracing the future through virtual configuration of group meetings. CONCLUSIONS: The five studies provided useful and credible findings from caregivers' voices that are not often heard in regard to the meaning of participating in support groups. Peer support is beneficial for caregivers, and it provides a source of positive emotional support and a means of venting negative feeling and gaining help to address issues in the everyday life of caring for older adults with dementia.