Narrative-based learning for person-centred healthcare: the Caring Stories learning framework.

This paper describes the learning framework for an innovative narrative-based training platform for healthcare professionals based on older patients' narratives. The aim of Caring Stories is to place patients' desires and needs at the heart of healthcare and by doing so to promote person-centred care (PCC). It is argued that this narrative-based approach to training in healthcare education will provide professionals from different fields with competencies to better understand how to interpret the lifeworlds of older people, as well as facilitate better communication and navigation through increasingly complex care trajectories. The spiral learning framework supports narrative-based training to be accessible to a broad range of healthcare practitioners. We suggest this is a theoretically sophisticated methodology for training diverse healthcare professionals in PCC, alongside core tenets of narrative medicine, with applicability beyond the patient group it was designed for. The learning framework takes into account professionals' mindsets and draws on the epistemic tenets of pragmatism to support interprofessional education. Being informed by narrative pedagogy, narrative inquiry, and expansive learning and transformative learning theories, ensures that a robust pedagogical foundation underpins the learning framework. The paper sets out the conceptual ideas about narrative that we argue should be more widely understood in the broad body of work that draws on patient narratives in healthcare education, alongside the learning theories that best support this framing of narrative. We suggest that this conceptual framework has value with respect to helping to disseminate the ways in which narrative is most usefully conceptualised in healthcare education when we seek to foster routes to bring practitioners closer to the lifeworlds of their patients. This conceptual framework is therefore generic with respect to being a synthesis of the critical orientations to narrative that are important in healthcare education, then adaptable to different contexts with different patient narratives.

Perceived Caregiving Trajectories and their Relationship with Caregivers' Burdens and Gains.

The study explores the meanings that family caregivers of people with dementia ascribe to the past, present, and future of their role as a caregiver, and how their integration into caregiving trajectories is related to caregivers' burdens and gains. The sample was made up of 197 family caregivers (Mage = 62.1, SD = 12.3, 70.1% females). They completed three incomplete sentences regarding their past, present, and future caring role, the Zarit Burden Interview and the Gains Associated with Caregiving scale. Sentence completions were content analyzed, and the associations between the resulting trajectories and burdens and gains were studied by means of a one-way ANOVA. Caregivers differed in the meanings ascribed to past, present, and future of their role. Stable-negative (M = 43.6, SD = 13.3), regressive (M = 43.3, SD = 12.7), and present-enhancing (M = 37.4, SD = 13.7) trajectories showed higher levels of burdens than progressive (M = 31.3, SD = 12.3) and/or stable-positive trajectories (M = 26.1, SD = 13.7). Progressive trajectories (M = 38.9, SD = 15.7) were related to more gains than regressive trajectories (M = 28.6, SD = 12.7). Family caregivers' evaluations of their past, present, and future are not only important separately, but their combination into caregiving trajectories is also relevant. Such trajectories might be relevant when designing interventions to help caregivers reduce their burden levels and increase the benefits ascribed to their experience. The most adaptive trajectory identified was the progressive one, whereas the regressive trajectory was the most dysfunctional.

A conversational, small-story approach to narrative care for people with dementia living in care institutions: Strategies and challenges.

The aim of the paper was to define what narrative care is and identify and discuss everyday conversational narrative care strategies regarding people living with dementia in long-term care institutional settings. To do so, we differentiate between two approaches to narrative care: a big-story approach (reflecting on life stories) and a small-story approach (enacting stories in everyday conservations). The paper is focused on the second approach, which appears to be particularly fit to be used with people living with dementia. We identify three main strategies to implement this approach in everyday care: (1) prompting and sustaining narratives; (2) valuing non-verbal and embodied cues; and (3) constructing narrative environments. Finally, we discuss some training, institutional and cultural barriers and challenges for providing conversational, small story-based narrative care for people living with dementia in long-term care institutions.

For the Sake of Myself, My Colleagues and My Community: Exploring the Benefits of Political Participation in Later Life.

Most studies on the benefits of late life civic engagement have focused exclusively on formal volunteering. Older adults' political participation is much more overlooked. The current paper explores the benefits of long-term participation in political organizations as described by actively engaged Spanish older people. We used an adaptation of McAdams' life-story interview with 40 participants from three types of political organizations who occupy a responsible position within the organization. We identified three main themes in participants' answers: personal benefits, relational benefits, and community benefits. Overall, our results showed that the benefits arising from long-term political participation go far beyond the well-studied individual benefits that research on late-life volunteering has typically identified, and spread to relational and community areas. Social work practitioners should consider these benefits when they implement plans and programmes to promote healthy, active ways of aging, fostering age-friendly communities or reducing old-age social exclusion.

The Role of Generativity in Later Life in the Case of Productive Activities: Does the Type of Active Aging Activity Matter?

Active aging has been associated with both personal and social benefits. However, active aging encompasses a broad range of activities, including self-oriented and community-oriented ones. The aim of this study was to explore to what extent generativity is a key factor in differentiating between both types of activity, and to contribute to the theoretical and methodological literature on generativity as a multidimensional concept relevant to later life participation in certain activities related to an active style of living. A sample of 549 older adults who engaged in two types of self-oriented activity (leisure activities and students of University of the Third Age programs) and two types of community-oriented activity (formal volunteering and political activism) participated in this study. Following a mixed-method strategy, we administered several qualitative and quantitative measures of generativity, including generative concern, generative goals, and perceived cultural demand. Our results showed that participants who engaged in self-oriented and community-oriented activities differed on all dimensions of generativity. Differences in generativity were particularly high regarding cultural demand and future generative goals, which were far more frequently mentioned by political activists and volunteers than by university of the third age students and those pursuing leisure activities. Overall, our findings suggest that generativity plays a role in older adults' participation in some (but not all) active aging activities in later life, and that our understanding of generativity in later life gains from a multidimensional assessment of the concept.

Perceived Caregiving Trajectories and their Relationship with Caregivers’ Burdens and Gains

The study explores the meanings that family caregivers of people with dementia ascribe to the past, present, and future of their role as a caregiver, and how their integration into caregiving trajectories is related to caregivers’ burdens and gains. The sample was made up of 197 family caregivers (M age = 62.1, SD = 12.3, 70.1% females). They completed three incomplete sentences regarding their past, present, and future caring role, the Zarit Burden Interview and the Gains Associated with Caregiving scale. Sentence completions were content analyzed, and the associations between the resulting trajectories and burdens and gains were studied by means of a one-way ANOVA. Caregivers differed in the meanings ascribed to past, present, and future of their role. Stable-negative (M = 43.6, SD = 13.3), regressive (M = 43.3, SD = 12.7), and present-enhancing (M = 37.4, SD = 13.7) trajectories showed higher levels of burdens than progressive (M = 31.3, SD = 12.3) and/or stable-positive trajectories (M = 26.1, SD = 13.7). Progressive trajectories (M = 38.9, SD = 15.7) were related to more gains than regressive trajectories (M = 28.6, SD = 12.7). Family caregivers’ evaluations of their past, present, and future are not only important separately, but their combination into caregiving trajectories is also relevant. Such trajectories might be relevant when designing interventions to help caregivers reduce their burden levels and increase the benefits ascribed to their experience. The most adaptive trajectory identified was the progressive one, whereas the regressive trajectory was the most dysfunctional. (AU)

Older adults' participation in artistic activities: a scoping review.

This scoping review analyses existing literature on older adults' participation in artistic activities. It identifies gaps in this research topic and suggests new directions for research. We followed the five-step process defined by Arksey and O'Malley (2005) and extended by Levac et al. (2010). Four electronic databases were searched, and 129 peer-reviewed articles were included in the scoping review. Research into older adults' participation in artistic activities has grown in the last ten years. However, empirical papers tend to focus on the outcomes of older people's participation in artistic activities, in particular the benefits. Most papers centred on facilitators to examine the antecedents of this type of participation among people in late life. Research about experiences, potentially negative consequences or barriers to older adults' participation in artistic activities have been largely overlooked. We identified several gaps in the literature, which we classified as: related to the artistic activities that were considered; the potential costs and barriers for older adults' participation in artistic activities; older adults' voices and their diversity; the life course perspective; and a contextual view of research on the topic. These gaps suggest challenges that future research on older adults' participation in artistic activities should consider.

Long-term care staff 's positive experiences of caring for people living with dementia: Narratives' content and lessons learned.

Research on caregiving for persons with dementia has mainly focused on its negative impact on caregivers. However, while some studies have found that positive aspects of care can also be found among informal caregivers, little attention has been paid to these positive aspects among staff working in long-term care facilities. The aim of this is study is to explore what kind of positive stories of caring for a person living with dementia staff working in long-term care facilities recall, and what kind of lessons they extracted from these experiences. Forty-two staff members currently working in four Spanish long-term care facilities (21 nursing assistants; 21 technical staff) were interviewed. They were asked about positive stories related to caring for people living with dementia. Data were analyzed using content analysis, aimed at identifying common ideas in the responses. Results showed that the type of stories were quite diverse, but can be grouped into three main themes: attachment, awakening, and mastery. The stories imply different lessons learned, including the importance of individualized care, the value of persistence and patience, and the relevance of technical knowledge and strategies to provide good care. The articles discusses how recording, reflecting on and discussing positive experiences that care staff encounter in their daily practice, may be key to skill development, reinforce job satisfaction, and improve quality of care in a person-centered care direction.

Sexual expression involving people with dementia living in long-term care facilities: Staff's reactions.

This study aims to explore and compare the reaction of long-term care staff towards situations of sexual intercourse in which one or both partners have dementia. Participants were 538 staff members at 28 Portuguese long-term care facilities. Data were collected using a printed questionnaire with seven vignettes with situations related to the sexuality of LTCF residents. In this study, three of these vignettes were analysed with situations in which residents were having relationships in their bedrooms: (1) one male resident and one female resident; (2) two residents with dementia; (3) two residents, one of them with dementia. For each of the vignettes, participants are asked what they think their 'colleagues' would do in each vignette, i.e. 'What do you think most of your colleagues would do?' The results revealed that when sexual relationships involved both partners living with dementia, the most selected reaction was 'Comment on what happened with supervision or direction', which may suggest that the situation was perceived as difficult or problematic. The most restrictive reactions were most often chosen when only one partner had dementia. This study suggests the need to improve and provide training, so that staff have knowledge and strategies that allow people living with dementia to preserve their sexual rights in long-term care facilities.

Resistance to Eating in People with Dementia Living in Long-term Care Facilities: Gaps between Common and Good Practices.

OBJECTIVES: The present study aims to explore the perception of common and best practices for dealing with resistance to eating of persons with dementia living in long-term care facilities. METHODS: Forty-two staff members working in long-term care facilities were interviewed. They worked in four Spanish long-term care facilities; 21 were nursing assistants and 21 technical staff. Participants heard a vignette in which person with dementia showed resistance to eating. Participants were asked how a situation like that is commonly managed by their workmates, and how the situation should be managed. Responses were content-analyzed. RESULTS: Strategies mentioned by participants were quite diverse and did not converge on common ground that harmonizes their responses. Less than half of the participants considered person-centered strategies as a best practice. Those strategies were lower on assistant carers, compared to technical staff. CONCLUSIONS: Resistance to eating is a common situation faced by professionals. Nonetheless, there is not a common procedure to deal with this situation. Resistance to eating was seen more as a problem to be eradicated than a behavior to be understood. CLINICAL IMPLICATIONS: Staff development initiatives are necessary in relation to mealtime situations. They should consider work position and competencies needed by assistant carers.

Exploring the Benefits of Proactive Participation among Adults and Older People by Writing Blogs.

The use of Information and Communication Technologies (ICTs) for information-seeking, social contact and leisure activities is increasing in adults and older people. However, little is known about adults and older people who are already actively using ICTs to write a blog. The aim of this paper is to describe the benefits adults and older people gain from having a blog. Twenty-three older adult bloggers (aged 60-83 years; most of them with college degrees and retired) from Spain who, at the time of the study had an active blog were interviewed. A thematic analysis identified four different benefits related to blogging: (1) a general sense of satisfaction from producing the blog; (2) relational benefits; (3) cognitive benefits; and (4) identity benefits. Results showed that adults and older people experienced a variety of benefits that broadens the distinction between personal and social benefits found in previous research. Blogging in later life challenges the traditional passive/consumer and online user experience view of adults and older people and seems to be a good example of proactive participation through websites.

Psychosocial Aspects of Participation in Competitive Sports Among Older Athletes: A Scoping Review.

BACKGROUND AND OBJECTIVES: In the last decade, sport has been considered a tool in active aging to maintain physical fitness, improve mental well-being, and form social relationships among older people. However, a thorough psychosocial understanding of the phenomenon of older athletes competing in sports events is lacking. Most research has focused on competitive sports participation in the young population. This study analyzes the general state of knowledge of competitive sports participation among athletes aged 50 years and older from a psychosocial perspective. RESEARCH DESIGN AND METHODS: We followed the 5-step process outlined by Arksey and O'Malley. After the search in 4 electronic databases, 69 peer-reviewed articles met the inclusion criteria. RESULTS: The findings indicate that psychosocial research into older people's participation in competitive sports has grown moderately in the last decade. While intrapersonal and interpersonal aspects have dominated the academic psychosocial discourse on older athletes' competitive sports participation, aspects related to the environment/community and policy have largely been overlooked. DISCUSSION AND IMPLICATIONS: We identified several critical gaps in the literature, classified into conceptual (e.g., lesser attention to personality, emotional, and cognitive aspects), methodological (e.g., longitudinal studies almost absent), and diverse aspects (e.g., focus on a wide indiscriminate age range; few comparisons between types of sports; underrepresentation of some nation or world regions as well as few cross-national comparative studies). These research gaps hint at opportunities that future research on older people's participation in competitive sports should address.

Exclusion from Social Relations in Later Life: Micro- and Macro-Level Patterns and Correlations in a European Perspective.

Older adults face particular risks of exclusion from social relationships (ESR) and are especially vulnerable to its consequences. However, research so far has been limited to specific dimensions, countries, and time points. In this paper, we examine the prevalence and micro- and macro-level predictors of ESR among older adults (60+) using two waves of data obtained four years apart across 14 European countries in the Survey of Health, Ageing and Retirement in Europe (SHARE). We consider four ESR indicators (household composition, social networks, social opportunities, and loneliness) and link them to micro-level (age, gender, socioeconomic factors, health, and family responsibilities) and national macro-level factors (social expenditures, unmet health needs, individualism, social trust, and institutional trust). Findings reveal a northwest to southeast gradient, with the lowest rates of ESR in the stronger welfare states of Northwest Europe. The high rates of ESR in the southeast are especially pronounced among women. Predictably, higher age and fewer personal resources (socioeconomic factors and health) increase the risk of all ESR dimensions for both genders. Macro-level factors show significant associations with ESR beyond the effect of micro-level factors, suggesting that national policies and cultural and structural characteristics may play a role in fostering sociability and connectivity and, thus, reduce the risk of ESR in later life.

Post-Traumatic Growth among Older People after the Forced Lockdown for the COVID-19 Pandemic.

We explored post-traumatic growth (PTG) in older adults immediately after the forced lockdown in Spain during March to April, 2020, due to the COVID-19 pandemic. The study also tried to identify the variables that predict PTG, focusing on the experience of COVID, sociodemographic variables, and social resources. In total 1,009 people aged 55 years and older participated in the study and completed an online questionnaire comprising the following elements: The short form of the Post-traumatic Growth Inventory (PTGI-SF), sociodemographic and social resources questions, and their experiences of COVID-19 (if they had been infected themselves or if they had experienced the loss of someone close). Results showed that only a quarter of the participants experienced higher PTG after the forced lockdown, with only age and social resources being correlated with scores on the PTGI-SF. Looking at the strengths that older adults put into action to combat the pandemic and its social and health consequences could be an important consideration when planning future social policies for this and other pandemics.

Managing apathy among people with dementia living in institutional settings: Staff's perceived gap between common and best practices.

The aim of this study is to explore how staff manage apathy involving a person living with dementia (PLWD). Forty-two staff members working in four Spanish long-term care facilities were interviewed; 21 were nursing assistants and 21 technical staff. They read a vignette about a PLWD presenting apathy. Participants were asked (1) how a situation like that is commonly managed, and (2) how it should be managed. Responses were content-analyzed. Most participants (88.1%) mentioned having experienced a situation similar to the one described in the vignette. Behavior-focused strategies and person-centered strategies were the most frequently mentioned. As for best practices, person-centered strategies emerged as the preferred alternative, and technical staff mentioned them more frequently than assistant carers. Our findings stress the importance of organizational guidelines and staff development in the management of apathy in PLWD.

Breaking the win-win narrative: The dark side of older people's political participation.

Studies on older adults' civic engagement have been dominated by a win-win narrative, which assumes that the activity is beneficial both for the individuals involved and for communities. However, civic engagement may also be a source of negative experiences. The aim of this study was to understand these experiences in greater depth through an analysis of older Spanish activists' narratives of negative episodes of political participation. We also aimed to contribute to the methodological literature on narrative research by highlighting the strengths of analysing not just the content but also the structure of older people's stories. Life story interviews were carried out with 40 members of Spanish political organisations aged between 65 and 86 years old. As part of the interview, they were invited to narrate a negative event related to their stories of political participation. Answers were analysed both for their content (using thematic analysis) and for their structure (using Christopher Booker's plot typology). Participants recounted many negative experiences of political participation, which challenged the win-win master cultural narrative around civic engagement. These stories, which often reflected Booker's plots of 'tragedy', 'overcoming the monster', 'the quest', and 'redemption', recorded political defeats, conflicts with other members in the organisation, feelings of loneliness associated with engagement, and undesired consequences for relatives and friends. The results highlight the importance of providing a more nuanced understanding of what it means to be politically engaged in later life. This understanding would integrate the positive aspects assumed by the master win-win narrative with others that clearly challenge its assumptions.

La representación de los mayores en los medios durante la pandemia COVID-19: ¿hacia un refuerzo del edadismo? / Older people representation on the media during COVID-19 pandemic: a reinforcement of ageism?

ANTECEDENTES Y OBJETIVO: La pandemia de la COVID-19 afecta de manera diferencial a distintos grupos etarios, concentrándose la mayor parte de fallecimiento entre las personas más mayores y con afecciones de salud previas. Esto ha implicado una mayor presencia de los mayores en la agenda informativa de todos los medios de comunicación. Este artículo pretende analizar esos discursos y representaciones relacionados con los mayores tal y como se presentan en los titulares de publicaciones difundidas en 2diarios de alcance nacional (ABC y El País) durante la fase más crítica de la pandemia en España. MATERIALES Y MÉTODOS: Se analizaron 501 titulares relacionados con los mayores y la pandemia COVID-19 (380 del ABC y 121 de El País) desde la perspectiva de los Estudios Críticos del Discurso (van Dijk, 2003) y llevándose a cabo un análisis de contenido. RESULTADOS: El 71,4% de los titulares representaban de manera desfavorable a los mayores, presentándolos como un grupo homogéneo y asociándolos a fallecimientos, deficiencias en la atención residencial o vulnerabilidad extrema. La presencia de ciertos términos potencialmente peyorativos o impropios (ancianos, abuelos) estaba en coherencia con esa representación negativa. CONCLUSIONES: A la luz de esos resultados, se discute en qué medida la pandemia de la COVID-19 puede reforzar una narrativa edadista de los mayores, basada en la fragilidad, el declive y la dependencia, que pueda justificar prácticas discriminatorias dirigidas a este sector de la población

BACKGROUND AND OBJECTIVE: The COVID-19 pandemic affects various age groups differently, with most deaths concentrated among the older population and those with previous health conditions. This has led to a greater presence of older people in the agenda setting of all the media. This article aims to analyse these discourses and representations related to older people as presented in the headlines of publications disseminated in 2national newspapers (ABC and El País) during the most critical phase of the pandemic in Spain. MATERIALS AND METHODS: An analysis was made of 501 headlines related to older people and the COVID-19 pandemic (380 from ABC, and 121 from El País) from the perspective of the Critical Discourse Studies (Van Dijk, 2003), as well as carrying out a content analysis. RESULTS: 71.4% of the headlines represented the Older adults were represented unfavourably in 71.4% of the headlines, with them being presented as a homogeneous group and associating them with deaths, deficiencies in residential care, or extreme vulnerability. The presence of certain potentially derogatory or improper terms (elderly, grandparents) was consistent with this negative representation. CONCLUSIONS: In light of these results, it is discussed to what extent the COVID-19 pandemic may reinforce an ageist narrative of the older people, based on frailty, decline, and dependency, which may justify discriminatory practices directed at this sector of the population

[Older people representation on the media during COVID-19 pandemic: A reinforcement of ageism?] / La representación de los mayores en los medios durante la pandemia COVID-19: ¿hacia un refuerzo del edadismo?

BACKGROUND AND OBJECTIVE: The COVID-19 pandemic affects various age groups differently, with most deaths concentrated among the older population and those with previous health conditions. This has led to a greater presence of older people in the agenda setting of all the media. This article aims to analyse these discourses and representations related to older people as presented in the headlines of publications disseminated in 2national newspapers (ABC and El País) during the most critical phase of the pandemic in Spain. MATERIALS AND METHODS: An analysis was made of 501 headlines related to older people and the COVID-19 pandemic (380 from ABC, and 121 from El País) from the perspective of the Critical Discourse Studies (Van Dijk, 2003), as well as carrying out a content analysis. RESULTS: 71.4% of the headlines represented the Older adults were represented unfavourably in 71.4% of the headlines, with them being presented as a homogeneous group and associating them with deaths, deficiencies in residential care, or extreme vulnerability. The presence of certain potentially derogatory or improper terms (elderly, grandparents) was consistent with this negative representation. CONCLUSIONS: In light of these results, it is discussed to what extent the COVID-19 pandemic may reinforce an ageist narrative of the older people, based on frailty, decline, and dependency, which may justify discriminatory practices directed at this sector of the population.

'I do it my way': long-term care staff's perceptions of residents' sexual needs and suggestions for improvement in their management.

This study is aimed at exploring to what extent staff perceive older residents in long-term care facilities (LTCFs) as still having sexual needs, and how they think care in relation to sexual issues could be improved. The sample was self-selected and comprised 2115 staff members (including managers, technical and care assistants) employed at 152 Spanish LTCFs. Data were collected in the second half of 2016. Participants were asked to estimate the proportion of older residents who had sexual needs in their institution and, by means of open-ended questions, they were also asked about how they satisfied such needs and how to improve care in relation to sexual issues. Responses to the open-ended questions were analysed using content analysis. Differences were assessed according to participants' work position. Results showed that most participants did not see sexual needs as being present in many (or even any) older people living in LTCFs. Masturbation was the most common way staff thought residents' sexual needs were being satisfied. The participants mentioned a broad range of measures to improve care regarding sexual issues, including providing more training opportunities for staff, guaranteeing privacy and improving negative attitudes held by family, residents or staff members. Work position influenced participants' responses: managers and technical staff were more likely to recognise sexual needs among residents, perceived a greater need for training, and proposed more ambitious and far-reaching improvements than care assistants.