A Narrative Inquiry Into the Lived Experiences of the Oldest-Old Caregivers and How These Are Shaped by Age and Aging.

BACKGROUND AND OBJECTIVES: Oldest-old (80+) spousal caregivers of people with dementia are a fast-growing, highly vulnerable, and poorly understood population. As oldest-old individuals, these caregivers have a high likelihood of experiencing aging-related changes (e.g., frailty and multimorbidity) that result in unique caregiving experiences and support needs. Specialized interventions, sensitive to caregivers' age- and aging-related experiences and needs, may be required to provide adequate support to this group. To date, this group has received limited attention in the literature. Thus, the purpose of this study was to elucidate how age and aging shape the experiences of oldest-old spousal caregivers of people with dementia. RESEARCH DESIGN AND METHODS: We used a narrative gerontology approach, with 2-3 semistructured interviews with 11 caregivers ages 80-89 (25 interviews in total). We analyzed narrative data thematically. RESULTS: We identified 4 main themes representing caregivers' perceptions of age or aging: aging as decline, aging as life experience, doings in older age, and older age as perceived by others. Our results illustrate a breadth of age- and aging-related caregiving experiences stemming from each perception. DISCUSSION AND IMPLICATIONS: This study provides insight into the particular experiences of oldest-old spousal caregivers of people with dementia and provides a foundation for critical future research that will continue to explore the experiences of this unique and fast-growing caregiving group. A more nuanced understanding of this caregiving subgroup is needed to develop age-sensitive health and social care services to meet their needs and, ultimately, improve their well-being and that of their spouses.

Negotiating expectations for therapy between mothers and service providers: a narrative analysis.

PURPOSE: To use stories about mothers and service providers negotiating expectations for therapy to illuminate processes contributing to power differences within partnerships. METHODS: This narrative study presented stories from three mothers and three service providers. Stories were co-constructed between participants and researchers and analyzed using narrative analysis. Building on An and Palisano's (2014) Model of Family-Professional Collaboration, stories were organized into the stages of goal setting, planning, and doing therapy. RESULTS: Each story illuminated a process unique to that story that can redistribute power between mothers, service providers, and therapy environments while negotiating expectations: protecting sacred issues, facilitating knowledge exposure, filling voids/vacuums, recognizing cultural conditioning, re-discovering eclipsed roles, and connecting relay teams. We propose including three additional strategies to An and Palisano's model to increase the readiness of mothers and service providers to negotiate expectations for therapy and collaborate fully as the model intends: 1) exploring power-sharing conversations; 2) looking for social context clues; and 3) adopting a humility stance. CONCLUSION: Information on the six illuminated processes can help structure a client story grounded in optimal negotiation of expectations and equal partnerships.Implications for RehabilitationKnowledge of diverse stories about mothers and service providers negotiating expectations for therapy can be a resource to guide actions in related situations.Leaving the topic of expectations for therapy implicit or unchallenged increases the risks that negotiations remain unbalanced and unproductive.Service providers may enhance collaboration with mothers in paediatric rehabilitation by exploring power-sharing conversations, looking for social context clues, and adopting a humility stance.

"What their expectations could be": a narrative study of mothers and service providers in paediatric rehabilitation.

PURPOSE: To better understand and visualise how and why mothers' and service providers' expectations for therapy can change over time spanning their journeys and careers in the paediatric rehabilitation system. METHODS: Narrative analysis was used to construct two parallel collective stories that illustrate and explain phases and turning points of developing expectations. Five mothers and nine service providers participated in interviews discussing their expectations when new and more experienced with therapy. RESULTS: Each collective story had five chapters illustrating how expectations became more relational, controllable, and informed. For mothers, the chapters were: (1) expecting therapy to be a saviour; (2) being turned away and alone; (3) expecting to advocate from necessity; (4) finding new solutions in the environment; and (5) expecting to combine mother and service provider expertise. For service providers, the chapters were: (1) expecting to rescue and fix; (2) searching for an alternative sense of professional worth; (3) expecting to lose control; (4) being the authentic self before expected self; and (5) expecting the unexpected. CONCLUSIONS: Mothers' experiences with feeling alone and learning ways to modify their child's environments, and service providers' experiences with feeling inadequate and embracing authenticity, were essential to the developmental trajectories of expectations.Implications for Rehabilitation:Mapping expectations for therapy on a line graph shaped as a wave shows promise in reflecting the developmental trajectory of mothers' and service providers' expectations over time.Service providers should become aware of how to work with three distinct groups of mothers as determined by the phase of expectations for therapy they are currently experiencing (i.e., hyped, disillusioned, or enlightened).Therapy programmes can optimise expectations for therapy through redesigns that emphasise elements of networking, self-compassion, ethics, and authenticity.

Occupational (Therapy's) Possibilities: A Queer Reflection on the Tangled Threads of Oppression and Our Collective Liberation.

This presentation stems from the work of occupational therapy and science scholars who have critically described how systems of dominance perpetuate health inequities and limit the occupational possibilities of those we aim to support. Liberation is discussed as a communal process and outcome of untangling, undoing, and reconfiguring systems of dominance that negatively impact health and limit the occupational possibilities of individuals, groups, and communities. In critically reflecting on my personal, professional, and ongoing journey toward liberation as a gay, white, able-bodied, man, I draw parallels between the systemic and intersecting oppressive forces that limit the occupational possibilities of historically marginalized groups and the need for our profession to consider its own liberation. Informed by queer theory, I question the binary discourses that separate the "Us" from the "Them," illustrating how our struggles to transform practice based on anti-oppressive principles and the liberation of our full potential as occupational therapists must be tied to the liberation of the communities we aim to support. Drawing on lessons from liberation movements, I argue for the necessity of a representative and compassionate professional community to support collective action and to position the celebration of communal achievements as resistance and acts of gratitude.

Expectations for therapy in pediatric rehabilitation: reframing meaning through metaphor.

PURPOSE: To propose a holistic approach and an accompanying tool to facilitate conversations about expectations of therapy in pediatric rehabilitation based on meanings generated through metaphor. METHODS: In this study, five parents and nine service providers took part in narrative interviews. Topics included the content and development of expectations over time. Participants reviewed written summaries of their interviews and provided feedback. Data analysis was grounded in a narrative methodological approach. Multiple levels of meaning from participant experiences were constructed through a parallel thematic analysis and metaphor analysis, revealing meaning participants attributed to expectations directly, and inferred indirectly. RESULTS: The thematic analysis produced three themes related to the difficult to define characteristics and mixed value of expectations. The metaphor analysis produced four metaphorical concepts related to how expectations affect the therapy process by adding a sense of Force (i.e., therapy momentum), Appreciation (i.e., understanding of the client), Illumination (i.e., envisioning new therapy activities), and Relationship (i.e., therapeutic rapport). CONCLUSIONS: We propose the "F.A.I.R." approach and tool comprising terminology that can help reframe the meaning of expectations away from focusing on binary realistic or unrealistic outcomes, and toward focusing on a plurality of optimal therapy processes.Implications for RehabilitationMeaningful conversations about expectations for therapy between parents and service providers in pediatric rehabilitation can be challenging, one-sided, or missed.Attention to metaphors used to describe expectations for therapy introduces additional terminology parents and service providers may use to help facilitate conversations.Service providers are encouraged to use a resource proposed here to learn about parents' expectations for therapy through a collaborative process involving shared questioning, observation, and reflection.

Experiences of Intergenerational Trauma in Second-Generation Refugees: Healing Through Occupation.

BACKGROUND.: Trauma experienced in one generation can affect the health and well-being of subsequent generations, such as impairing life skills, personal contentment, behaviour patterns and sense of self. This phenomenon has predominantly been explored with descendants of European refugees and is not fully understood from an occupational perspective. PURPOSE.: This research explores how intergenerational trauma manifests in the occupational lives of second-generation Ilankai Tamil and Vietnamese refugees. METHODS.: Using qualitative narrative inquiry, 12 adult children of Tamil and Vietnamese refugees residing in the Greater Toronto Area participated in semi-structured interviews. Narratives were thematically analysed. FINDINGS.: Findings illustrate how sociohistorical, cultural and familial contexts influence the way second-generation refugees view what they can and should do. Many healing responses to intergenerational trauma include occupations focused on communal care. IMPLICATIONS.: Findings from this study reveal the unique struggles and needs of two understudied populations and the possibilities for healing through occupation.

The Environmental Production of Disability for Seniors with Age-Related Vision Loss.

To date, attention to the environmental production of disability among older adults with age-related vision loss (ARVL) has been limited. This critical ethnographic study aimed to reveal the ways in which environmental barriers produced and perpetuated disability for 10 older adults with ARVL. A modified version of Carspecken's five-stage approach for critical ethnography was adopted with three methods of data collection used, including a narrative interview, a participant observation session, and a semi-structured, in-depth interview. Findings revealed how disability is shaped for older adults with ARVL when they encounter environmental features that are embedded within an ageist and disablist society. These findings are illustrated via presenting analysis of three commonly discussed activities: shopping, eating, and community mobility. Our discussion suggests that addressing the environmental production of disability requires inclusive social policy, advocacy, and a focus on education in order to develop and sustain age and low-vision-friendly environments.

Reshaping understandings of disability associated with age-related vision loss (ARVL): incorporating critical disability perspectives into research and practice.

PURPOSE: In this paper, we have sought to stimulate a critical dialog regarding the ways in which disability has been largely conceptualized and studied in literature addressing age-related vision loss (ARVL). We suggest an expansion of this largely biomedically informed research area to include alternative frameworks, namely critical disability perspectives. METHOD: To demonstrate the potential contributions of adopting a critical disability approach to enhance understandings of ARVL, this article outlined the primary tenets of the biomedical and social models of disability; the key aims, emphases, and assumptions of critical disability perspectives; and provided examples of how such an approach would lead to new research foci in the study of ARVL. RESULTS: The paper highlighted four qualities of critical disability perspectives that future ARVL research should ascribe to, including (a) a focus on interdependence over traditional notions of independence; (b) a broader conceptualization of 'normalcy'; (c) the influence of language as a means of describing or labeling disabled persons; and (d) the influence of the socio-political environment in the creation and sustainment of disability. CONCLUSIONS: This paper encouraged the incorporation of critical disability perspectives to provide new ways of conceptualizing, researching, writing about, and practicing in relation to ARVL. Implications for Rehabilitation The application of critical disability perspectives to expand the boundaries of low vision research can broaden low vision rehabilitation services (LVRS) in ways that more effectively attend to environmental features shaping and perpetuating disability for clients with age-related vision loss (ARVL). Low vision research, informed by critical disability perspectives, would inform a shift away from the exclusive focus on independence towards an acknowledgment of interdependence. The integration of participatory research approaches in ARVL research could generate new insights to inform rehabilitation by enhancing space and respect for the stories and knowledge of older adults aging with vision loss. Greater attention in low vision rehabilitation should be paid to how older adults' experiences of disability are tied to both the environmental context in which they exist and by the limitations caused by their impairment.

Negotiating 'positive' aging in the presence of age-related vision loss (ARVL): The shaping and perpetuation of disability.

INTRODUCTION: While previous research has explored the meaning of positive aging discourses from the perspective of older adults, the perspective of older adults aging with a disability has not been studied. In fact the intersection of aging and disability has been largely underexplored in both social gerontology and disability studies. METHOD: This critical ethnography engaged ten older adults aging with vision loss in narrative interviews, participant observation sessions, and semi-structured in-depth interviews. The overarching objective was to understand those attributes that older adults with age-related vision loss perceive as being the markers of a 'good old age.' The authors critically examined how these markers, and their disabling effects, are situated in ageist and disablist social assumptions regarding what it means to 'age well'. RESULTS: The participants' descriptions of the markers of a 'good old age' were organized into five main themes: 1) maintaining independence while negotiating help; 2) responding positively to vision loss; 3) remaining active while managing risk; 4) managing expectations to be compliant, complicit, and cooperative and; 5) striving to maintain efficiency. CONCLUSION: The study findings have provided helpful insights into how the ideas and assumptions that operate in relation to disability and impairment in late life are re-produced among older adults with age-related vision loss and how older adults take on an identity that is consistent with socially embedded norms regarding what it means to 'age well'.

Elucidating a Goal-Setting Continuum in Brain Injury Rehabilitation.

For individuals with brain injury, active participation in goal setting is associated with better rehabilitation outcomes. However, clinicians report difficulty engaging these clients in goal setting due to perceived or real deficits (e.g., lack of awareness). We conducted a study using grounded theory methods to understand how clinicians from occupational therapy facilitate client engagement and manage challenges inherent in goal setting with this population. Through constant comparative analysis, a goal-setting continuum emerged. At one end of the continuum, therapists embrace client-determined goals and enable clients to decide their own goals. At the other, therapists accept preset organization-determined goals (e.g., "the goal is discharge") and pay little attention to client input. Although all participants aspired to embrace client-determined goal setting, most felt powerless to do so within perceived organizational constraints. Views of advocacy and empowerment help to explain our findings and inform more inclusive practice.

Evidence-informed recommendations for rehabilitation with older adults living with HIV: a knowledge synthesis.

OBJECTIVE: Our aim was to develop evidence-informed recommendations for rehabilitation with older adults living with HIV. DESIGN: We conducted a knowledge synthesis, combining research evidence specific to HIV, rehabilitation and ageing, with evidence on rehabilitation interventions for common comorbidities experienced by older adults with HIV. METHODS: We included highly relevant HIV-specific research addressing rehabilitation and ageing (stream A) and high-quality evidence on the effectiveness of rehabilitation interventions for common comorbidities experienced by older adults ageing with HIV (stream B). We extracted and synthesised relevant data from the evidence to draft evidence-informed recommendations for rehabilitation. Draft recommendations were refined based on people living with HIV (PLHIV) and clinician experience, values and preferences, reviewed by an interprofessional team for Grading of Recommendations Assessment, Development, and Evaluation (GRADE) (quality) rating and revision and then circulated to PLHIV and clinicians for external endorsement and final refinement. We then devised overarching recommendations to broadly guide rehabilitation with older adults living with HIV. RESULTS: This synthesis yielded 8 overarching and 52 specific recommendations. Thirty-six specific recommendations were derived from 108 moderate-level or high-level research articles (meta-analyses and systematic reviews) that described the effectiveness of rehabilitation interventions for comorbidities that may be experienced by older adults with HIV. Recommendations addressed rehabilitation interventions across eight health conditions: bone and joint disorders, cancer, stroke, cardiovascular disease, mental health challenges, cognitive impairments, chronic obstructive pulmonary disease and diabetes. Sixteen specific recommendations were derived from 42 research articles specific to rehabilitation with older adults with HIV. The quality of evidence from which these recommendations were derived was either low or very low, consisting primarily of narrative reviews or descriptive studies with small sample sizes. Recommendations addressed approaches to rehabilitation assessment and interventions, and contextual factors to consider for rehabilitation with older adults living with HIV. CONCLUSIONS: These evidence-informed recommendations provide a guide for rehabilitation with older adults living with HIV.

Exploring the mental health roots of occupational therapy in Canada: a historical review of primary texts from 1925-1950.

PURPOSE: This historical study focused on understanding the influence of mental health concepts and practices on the profession of occupational therapy in Canada during the first part of the 20th century. METHODS: The authors examined early editions of the Canadian Journal of Occupational Therapy (CJOT) and other primary works from 1925-1950 to identify key events and themes. RESULTS: Analysis of these key historical documents revealed four themes: (1) Idle hands, emotional mischief, social unrest; (2) The grand vision; (3) Practical reality: Disparity between theory and practice; and (4) Understanding occupation: Approaches and methods to promote mental health. A timeline of key events related to occupational therapy practice and mental health also emerged. IMPLICATIONS: Reflecting on the history of a profession can assist its members to understand current practices and future possibilities.

Participatory action research: integrating community occupational therapy practice and research.

Participatory action research (PAR) is a form of collaborative research particularly concerned with power inequities of marginalized communities. With this approach, occupational therapists can work with clients and communities to address issues of access, inclusion, equity and collaboration in practice and research. This paper begins with a summary of key concepts and controversies related to participatory action research. Two examples from occupational therapy experience are used to demonstrate the initial steps and key principles of PAR projects and to highlight the conceptual links between PAR and community-based, client-centred occupational therapy. One project involved a group of mental health consumers, the other a community group of older adults. Several challenges and potential outcomes in PAR projects are highlighted in this examination of the complexity of PAR processes. The paper concludes by identifying possibilities and obstacles to the further use of PAR in occupational therapy.