Aging with my family: a grounded theory approach on the role of family when aging as foreign-born.

BACKGROUND: Research indicates that it is the quality of the closest relationships in the mixture of social relations that matters most for older adults. For older foreign-born, especially those who migrate late in life, the family is often the only socioeconomical resource they can lean on. This study aims to explore how older foreign-born perceive the role of family as they age. METHODS: The study design has a grounded theory approach. Data consist of individual open-ended interviews with 15 foreign-born informants aged between 60 and 85 years old who migrated to Sweden as adults from various parts of the world. RESULTS: The findings demonstrate that family was an essential part of the informants' lives as they lived for their families and their families lived for them. Family solidarity was described as a cultural heritage they took over from their original families and a cultural heritage they wished to pass on to their future generations. They found that this was what separated them as foreign-born from native-born. Memories of their parents reminded them of their biological, social, and cultural heritages. The intimate relationship with their spouses in a life course had served as a source of validation of their individual identities and promoted personal growth and self-esteem. The role as a loving and caring parent entailed a sense of accomplishment and satisfaction for the life lived. And now as grandparents, the role as a link between the family's historical heritage and the future generation entailed not only a sense of coherence as they aged but also hope and meaning beyond their own lives. CONCLUSIONS: The older foreign-born experienced life satisfaction as they aged with their families. Family meant community and solidarity. It was in the family that they found their distinct roles that had defined them. Family was an indispensable part of their social identity. The findings highlight the importance of older foreign-born being studied from a family and lifetime perspective.

"To be seen" - older adults and their relatives' care experiences given by a geriatric mobile team (GerMoT).

BACKGROUND: The proportion of older people in the population has increased globally and has thus become a challenge in health and social care. There is good evidence that care based on comprehensive geriatric assessment (CGA) is superior to the usual care found in acute hospital settings; however, the evidence is scarcer in community-dwelling older people. This study is a secondary outcome of a randomized controlled trial of community-dwelling older people in which the intervention group (IG) received CGA-based care by a geriatric mobile geriatric team (GerMoT). The aim of this study is to obtain a better understanding, from the patients' perspective, the experience of being a part of the IG for both the participants and their relatives. METHODS: Qualitative semistructured interviews of twenty-two community dwelling participants and eleven of their relatives were conducted using content analysis for interpretation. RESULTS: The main finding expressed by the participants and their relatives was in the form of feelings related to safety and security and being recognized. The participants found the care easily accessible, and that contacts could be taken according to needs by health care professionals who knew them. This is in accordance with person-centred care as recommended by the World Health Organisation (WHO) for older people in need of integrated care. Other positive aspects were recurrent health examinations and being given the time needed when seeking health care. Not all participants were positive as some found the information about the intervention to be unclear especially regarding whom to contact when in different situations. CONCLUSIONS: CGA-based care of community-dwelling older people shows promising results as the participants in GerMoT found the care was giving a feeling of security and safety. They found the care easily accessible and that it was provided by health care professionals who knew them as a person and knew their health care problems. They found this to be in contrast to the usual care provided, but GerMoT care did not fulfill some people's expectations.

Elements of assisted bodily care: Ethical aspects.

BACKGROUND: Many frail older persons who die in Swedish nursing homes need assisted bodily care. They must surrender their bodies to the authority of assistant nurses, which may affect their autonomy and dignity of identity. While assistant nurses claim to support older persons' wishes, older persons claim they have to adapt to assistant nurses' routines. The provider-receiver incongruence revealed here warrants investigation. AIM: To describe the elements of assisted bodily care, as performed in a nursing home. RESEARCH DESIGN: Data were collected through thirty-nine observations of assisted bodily care, analyzed with qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Seventeen older persons and twenty-two assistant nurses from a Swedish nursing home. ETHICAL CONSIDERATIONS: The research was conducted in line with the Declaration of Helsinki, further approved by the regional ethics committee. FINDINGS: Findings show that assisted bodily care consists of assistant nurses' practical work, performed at a high tempo. Assistant nurses still attempt to adapt this work to the older persons' wishes for self-determination, taking into account their day-to-day state of health. In spite of time pressure and occasional interruptions, there is room for consideration and affection in assisted bodily care. DISCUSSION: Assistant nurses try to promote older persons' dignity of identity, but sometimes fail, possibly due to lack of time. They nevertheless seem to know the older persons well enough to adapt the assisted bodily care according to their preferences and to support self-determination. This indicates that openness to older persons' lifeworlds may be more important than the amount of time available. CONCLUSION: Nursing home contexts might benefit from adopting a person-centered palliative care perspective, highlighting the value of relationships and shared decision-making. If so, older persons and assisted nurses could agree on practices and goals in assisted bodily care beforehand. Such routines may be time-saving and beneficial to all.

What is important to people living with dementia?: the 'long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions.

BACKGROUND: Core outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a 'long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a 'long-list' of outcome items for non-pharmacological interventions for people with dementia living at home. METHODS: Three iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the 'long-list' in eight workshops. RESULTS: One hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). CONCLUSIONS: This paper presents a transparent blueprint for 'long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.

Assenting to exposedness - meanings of receiving assisted bodily care in a nursing home as narrated by older persons.

Most older persons moving to a nursing home need to receive assisted bodily care, which means being in a position of vulnerability. However, few studies have explicitly focused on the meanings of receiving assisted bodily care from the older persons' perspective. This study aimed to elucidate meanings of receiving assisted bodily care, as narrated by older persons living in a nursing home. Twelve men and women, aged 80 or older, living in a Swedish nursing home, participated in the study. Data were generated by narrative interviews and analysed with a phenomenological-hermeneutical method. The regional ethics committee approved the study. In the analysis, one main theme emerged: 'Assenting to exposedness'. This theme comprised five themes, 'To have hope in hopelessness', 'To relinquish one's body into others' hands', 'To be between power and powerlessness', 'To oscillate between one's own responsibility and demands', 'To be in an ongoing interaction', and ten subthemes. In conclusion, receiving assisted bodily care means to be exposed, but not passively. Rather, it means to be self-determinant for as long as possible, to perceive the body as lived. When the body must be relinquished to others, it might be objectified, leading to care-suffering. To avoid this, the older persons use a certain competence, acquired through life, to decide when to take action or when to assent. However, this is but one of the several possible interpretations, which may be considered a limitation.

End-of-life care in a nursing home: Assistant nurses' perspectives.

BACKGROUND: Worldwide, older persons lack access to palliative care. In Sweden, many older persons die in nursing homes where care is provided foremost by assistant nurses. Due to a lack of beds, admission is seldom granted until the older persons have complex care needs and are already in a palliative phase when they move in. OBJECTIVE: To describe assistant nurses' perspectives of providing care to older persons at the end of life in a nursing home. RESEARCH DESIGN: Data were collected in semi-structured individual interviews and analyzed with inductive qualitative content analysis. PARTICIPANTS AND RESEARCH CONTEXT: Seven assistant nurses from a nursing home in Sweden were randomly selected. ETHICAL CONSIDERATION: The research was approved by the local ethics committee. RESULTS: Three main categories emerged; "Death a natural part of life"; "The older person's well-being"; and "Care in the moment of death"; and seven sub-categories. The assistant nurses described themselves as knowing the older persons well enough to provide good end-of-life care. This was achieved by making small-talk while providing daily care. Relying on experience-based knowledge, they strove to provide end-of-life care built upon respect and engagement with the ambition to strengthen older persons' dignity, for example, by lowering the tempo of care at the end of life, in spite of organizational restrictions. DISCUSSION: The assistant nurses offered attentive end-of-life care, focusing upon bodily care. The existential needs of the older persons were not foregrounded. CONCLUSION: To develop their work, and to promote an ethical foundation for such care, assistant nurses might need support and education to be able to offer a care more in line with the aims of palliative care. Furthermore, the organization of care needs to promote, not impede, the realization of this development.

Persistent Symptoms in People With Celiac Disease Despite Gluten-Free Diet: A Concern?

Studies show that people with celiac disease have reduced well-being and have persistent symptoms, mainly related to the gastrointestinal tract. The aim of this study was to analyze how persons in a celiac disease member association report their symptoms, health, and life satisfaction. A questionnaire, with both open and closed questions, was distributed to all members (n = 726) of a celiac association in the southeast of Sweden. The response rate was 74.5%, of which 524 (72%) said they had received a celiac disease diagnosis and were thus included in the study. Almost half of the participants (40.7%-42.2%) stated that they had persistent celiac disease symptoms despite following a gluten-free diet. Diarrhea, abdominal pain, and congestion were persistent symptoms reported and could contribute to a lower health status compared with people without persistent symptoms. The life satisfaction scale (LiSat-9) showed differences in 5 of 9 variables between the groups. Living with celiac disease is far from easy when you have persistent symptoms. People with celiac disease require follow-up by healthcare services, and a new treatment needs to be developed because following the gluten-free diet alone does not seem to alleviate symptoms in everyone.

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia.

The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: (a) literature search of previous research related to well-being and couplehood in dementia; (b) interviews with couples with dementia based on the findings of the literature search; and (c) further authentication of the findings within expert groups of people with dementia and carers. For analysis of data, we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes "Home and Neighborhood," "Meaningful Activities and Relationships," "Approach and Empowerment," and "Couplehood" with related subthemes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.

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.

A wish to know but not always tell -- couples living with dementia talk about disclosure preferences.

Most research on disclosure issues in dementia has focused on what it is like to receive a dementia diagnosis. Little is known about the disclosure preferences that people with dementia and their cohabiting spouses have. In this study, we explore disclosure preferences and focus on what couples living with dementia want to know and tell about the disease. The study is based on 40 qualitative interviews (20 with people with dementia and 20 with their spouses). The analysis revealed five preference patterns regarding what the couples wanted to know and how they felt about sharing information concerning the disease with others. The patterns have been called: (1) want to know and tell (no reservations about it); (2) want to know and tell (some reservations about it); (3) want to know but do not want to tell; (4) want to know but cannot decide if we want to tell and (5) cannot agree on either knowing or telling. They show that couples' preferences about what they want to know are related to what they are willing to tell. The findings also show that it is usually the preferences of the person that has a dementia diagnosis that guide the stand that couples take as far as disclosure issues are concerned. Thus, the findings show the type of interdependence that exists when one person in a couple has received the diagnosis, and the life of the two people as a couple is challenged as a result of this.

Introducing the bio-psycho-social-physical model of dementia through a collective case study design.

AIMS AND OBJECTIVES: To provide evidence for the development of a physical domain attached to the well-known bio-psycho-social model of dementia. The objectives were to develop a set of international case studies that followed a trajectory approach, from prevention to end-of-life care. BACKGROUND: In the UK the bio-psycho-social model has informed the shape of the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence 'dementia' guideline. However, limited attention has been paid to outlining and describing a physical domain of dementia, a discrepancy that informed the rationale for this study. DESIGN: A collective case study design was used to address the research aim and objectives. METHODS: Case studies from along the trajectory of dementia were provided by an international team of contributors from an inter-disciplinary background comprising nursing (general and mental health), social work and social science. RESULTS: The team's synthesis and analysis of the six case studies generated five repeating themes with each theme becoming components of a 'physical' domain of dementia. The five identified physical components were: (1) physical well-being, (2) physical health and examination, (3) physical care, (4) physical treatment and (5) physical environment. CONCLUSIONS: The development of a bio-psycho-social-physical model of dementia presents a holistic and culturally sensitive approach to understanding the experience of living with dementia, and to providing care and support in a variety of situations and contexts. RELEVANCE TO CLINICAL PRACTICE: The physical domain of dementia has particular relevance to nursing and nursing practice, such as providing physical care at the end-of-life. The interplay between the biological-psychological-social-physical domains of dementia and the trajectory of dementia could form the basis of clinical decision-making and practice.

Everyday life for women with celiac disease.

The aim of this research was to explore how women with celiac disease experience everyday life. It is important that healthcare professionals understand what it is like to live with a chronic illness, and also the factors that affect the lives of women who have celiac disease. The study has a qualitative approach and the data were collected using interviews with 16 women. A conventional content analysis was used for the subjective interpretation of the qualitative interviews. Three main themes emerged in the analysis: illness trajectory and treatment, socializing with others, and feelings of loneliness and worry. The findings indicate that living with celiac disease affects the person's entire life from the past, in the present, and into the future, especially when daily routines must be altered. The women expressed a sense of loneliness and invisibility, especially when socializing with others. The diet could be a friend, enemy, obstacle, or opportunity in terms of enjoying a good life. Supporting women diagnosed with celiac disease appears to be a major task for healthcare professionals. Such professionals need to pay attention to women's symptoms, worries, and their feeling of being invisible.

Controlling the Uncontrollable: Patient Safety and Medication Management From the Perspective of Registered Nurses in Municipal Home Health Care.

Most adverse events in health care are related to medication management and they are almost always preventable. Increased knowledge of patient safety related to medication management in home health care is an urgent issue to provide safe care for all patients regardless of where the health care takes place. This study explored patient safety within medication management in municipal home health care. Vignettes were used as stimulus during qualitative interviews with registered nurses. Three main themes with related subthemes were identified as challenges to patient safety within medication management in home health care: (1) challenges to information transfer, (2) challenges related to delegation, and (3) challenges of advanced medical treatments in the home. The issue of transfer of information permeated our findings. Coordinating medications, delegating tasks, along with more advanced care require clear communication between care providers to be compatible with patient safety within medication management in home health care.

The modified self: family caregivers' experiences of caring for a dying family member at home.

AIM: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home. Background. Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image. DESIGN: Qualitative descriptive study. METHODS: Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description. Result. Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space. CONCLUSIONS: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home. RELEVANCE TO CLINICAL PRACTICE: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.

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.

Couplehood as a compass: Spousal perspectives on the diminished everyday competence of partners.

Research on spousal relations and caregiving, when one of the persons in the dyad has a dementia diagnosis, has recognized that the degree of diminished everyday competence (DEC) the person with dementia is experiencing has implications for these relations and for how spousal caregiving is ultimately experienced. The present exploratory study uses an inductive approach to analyze data from 22 qualitative interviews with and observation notes on couples living with dementia to shed light on the ways in which the person without dementia views the DEC his/her partner is experiencing. The findings show that spouses can choose to disregard their partners' DEC or to acknowledge it in either an egocentric or a couple-centered way; they also show that spouses' choice of approach does not seem to be dictated by how cognitively impaired their partners have become. This suggests that spouses' approach to partners' DEC deserves more of our attention as it could have implications not only for transitions into spousal caregiving but also for caregiving experiences as such.

Health promotion initiative: A dementia-friendly local community in Sweden.

Dementia is a great public health concern worldwide. Despite this, little is known from a health-promoting perspective about dementia in general as a public health issue, in dialog with people living with dementia, applicable at individual, group, and societal levels with regard to policies and practice. This study therefore aims to explore the experiences related to living with dementia in the local community by advancing a health-promoting perspective. Semi-structured individual and group interviews were conducted with participants (n = 22) with lived, professional, and personal experiences of dementia living in a medium-sized municipality in Sweden. Transcripts were analyzed by thematic analysis. Four themes emerged: health promotion through knowledge and public awareness, health promotion through opportunities to be active, health promotion through meaningful meeting places, and health promotion through improvements in the welfare system. We found that more knowledge and public awareness about dementia are needed to advance a health-promoting perspective and increase the prominence of dementia as a public health issue. Further research and policy need to focus more on how professionals in dementia care practice could be involved in promoting health and well-being for people with dementia.

Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study.

BACKGROUND: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. OBJECTIVE: The aim of this study is to investigate the feasibility and acceptability of the DemPower app. METHODS: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. RESULTS: The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. CONCLUSIONS: The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. TRIAL REGISTRATION: ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.

'Overjoyed that I can go outside': Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia.

This study explores the relationships between people living with dementia and their neighbourhood as they venture out from home on a regular and often routine basis. Here, we report findings from the Swedish field site of an international 5-year project: Neighbourhoods: our people, our places. The aims of this study were to investigate the lived experience of the neighbourhood for people with dementia and through this to better understand the meaning that neighbourhood held for the participants. In this study, we focus on the walking interviews which were conducted with 14 community-dwelling people with dementia (11 men and 3 women) and were analysed using an interpretative phenomenological method. Four themes were revealed from these interviews: life narratives embedded within neighbourhood; the support of selfhood and wellbeing through movement; the neighbourhood as an immediate social context; and restorative connections to nature. These themes were distilled into the 'essence' of what neighbourhood meant for the people we interviewed: A walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated. We have found that the neighbourhood for community-dwelling people with dementia holds a sense of attachment and offers the potential for freedom of movement. Our research indicates that a dementia diagnosis doesn't necessarily reduce this freedom of movement. The implications for practice and policy are considered: future research should explore and pay closer attention to the diverse living conditions of people living with dementia, and not least the particular challenges faced by people living alone with dementia.

Being a spectator in ambiguity-Family members' perceptions of assisted bodily care in a nursing home.

AIM: The aim of this study was to explore family members' perceptions of assisted bodily care in a nursing home. BACKGROUND: Many older people living in nursing homes need assisted bodily care, provided by assistant nurses. This means exposedness, as the assistance is often provided under stress, but also brings pleasure. Family members, who may wish to and often benefit from continuing to provide assisted bodily care, are perceived as visitors and are expected to relinquish the assisted bodily care to the assistant nurses. DESIGN: This study has a qualitative design with a phenomenographic approach. METHODS: Data were collected through semi-structured interviews (n = 13) with family members of older people who were aged > 80, permanently living in a nursing home, suffering from multimorbidity, and in daily need of assisted bodily care. The data were analysed using a phenomenographic method. RESULTS: Three categories of description presenting an increasing complexity were identified. The family members perceived that assisted bodily care is built upon a respect for the older person's self-determination, practically supported by assistant nurses, and complemented by family members. CONCLUSIONS: In the family members' perceptions, assisted bodily care signifies ambiguity, as they find themselves balancing between the older persons' need for self-determination and need for help, and, further, between their trust in the assistant nurses' skills and their own perceived inadequacies in intimate assisted bodily care. IMPLICATIONS FOR PRACTICE: Policies that address the family members' role in nursing homes are needed. Furthermore, time for collaboration is needed for assistant nurses to inform and explain care decisions, become aware of the family members' perceptions of their situation and learn from them.