Karen la Cour

Aesthetic Engagements “Being” in Everyday Life With Advanced Cancer

Living with advanced cancer can present an overwhelming challenge. It may impact the everyday life of the individual with respect to an array of psychological, physical, social, and existential issues. We focus on ways in which people with advanced cancer experience and use their engagement in daily activities when confronting nearing death. Through a phenomenological analysis based on Heidegger’s thinking, we illuminate the complexities of “being toward death” and the human striving for authentic being through engagement in daily living. The main findings demonstrate how sensory experiences support being through an appreciation of everyday aesthetics. Furthermore, the making of material things was identified as a means to express the value of self and others in relation to the involved individual’s past, present, and future.

Everyday Lives of People with Advanced Cancer: Activity, Time, Location, and Experience

This study described and explored the everyday activities of people with advanced cancer in relation to time, location, social engagement, and experience. Forty-five adult participants with a diagnosis of advanced cancer were sampled from an oncology outpatient unit. Data were collected with a time use method that involved diaries and interviews. Data were analyzed using a software program describing time use combined with a constant comparative method. The results showed that the participants’ days were spent mostly at home and were dominated by self-care and leisure, with social engagement limited to immediate family and close friends. The participants’ daily rhythm was identified as closely linked to their experience of satisfaction and consisted of both routine and novel activities. For healthcare services, the results suggest a need for developing services to support people with severe illness in creating and maintaining

The Participation Experience of Children with Disabilities in Portuguese Mainstream Schools

Introduction: This explorative study aimed to chart the participation experiences of children with disabilities enrolled in mainstream schools. Method: The participants were 14 students with disabilities, with good communication skills, aged between 8 and 11 years and attending school in Portugal. The data were collected through open-ended interviews and analysed employing a psychological phenomenological method. Findings: The findings suggest that participation at school took three forms: equal participation, special task participation and onlooker participation. Those three forms contrasted with situations of non-participation, in which the children felt completely excluded. Each form of participation and non-participation presented different performance characteristics and was influenced by the social environment. Conclusion: The findings of this study provide insights that enhance the understanding of childrens inclusion in mainstream schools, as well as the individuals experience of participation.

Performance of activities of daily living among hospitalized cancer patients

Abstract Background: Many cancer patients report unmet rehabilitation needs. Rehabilitation may include activities of daily living (ADL) tasks, but little is known about how cancer patients perform these tasks and how they prioritize their daily activities. Hence, this study aims to identify and characterize ADL task performance problems among a group of adult disabled hospitalized cancer patients using interview and questionnaire data. Methods: Cross-sectional study on prevalence of ADL task performance problems experienced by disabled hospitalized cancer patients using the Activities of Daily Living Questionnaire (ADL-Q) (n = 118) and the Canadian Occupational Performance Measure (COPM) (n = 55). Results: All 118 patients reported problems with ADL task performance. Based on the ADL-Q patients reported more problems within instrumental (I-)ADL than personal (P-)ADL. In both I-ADL and P-ADL the results differed between women and men. There was significant overlap between problems identified using the COPM and the ADL-Q instruments. Results from the COPM showed that 65% of problems were related to self-care, 25% to leisure, and 19% to productivity. Using both instruments identified more ADL problems than when using only one of the instruments. Conclusion: Adult hospitalized disabled cancer patients experience a high degree and variation in difficulties performing ADL, illustrating the need for a comprehensively planned assessment of problems and needs.

'An Arena for Sharing': Exploring the Joint Involvement of Patients and Their Relatives in a Cancer Rehabilitation Intervention Study

Background: Despite an increasing focus on cancer rehabilitation programs, there is limited knowledge about the experiences of residential rehabilitation focusing on both the patients and their relatives. Objective: The aim of this study was to explore the experienced benefits of the joint involvement of patients and their relatives in a 5-day residential cancer rehabilitation course, provided as part of a larger intervention study in Denmark. Methods: Ethnographic fieldwork, consisting of participant observations and informal conversations, was conducted with 20 individuals (10 patients and 10 relatives). In-depth interviews were conducted in the participants’ homes 1 month after the rehabilitation course. Data were analyzed by a constant comparative method. Results: Residential rehabilitation course was identified to serve as an “arena for sharing,” underpinned by 3 dimensions of sharing: sharing cancer experiences, sharing strategies, and sharing mutual care. Conclusion: Sharing in residential rehabilitation is experienced as useful for cancer patients and their relatives, to validate cancer-related strategies and strengthen mutual understanding within relationships. Implications for Practice: The results can guide the development of cancer rehabilitation to involve patients and their relatives and provide opportunity for sharing and empowerment on individual as well as couple and group levels.

Managing occupations in everyday life for people with advanced cancer living at home

Abstract Background: People with advanced cancer are able to live for extended periods of time. Advanced cancer can cause functional limitations influencing the ability to manage occupations. Although studies have shown that people with advanced cancer experience occupational difficulties, there is only limited research that specifically explores how these occupational difficulties are managed. Objective: To describe and explore how people with advanced cancer manage occupations when living at home. Material and methods: A sub-sample of 73 participants from a larger occupational therapy project took part in the study. The participants were consecutively recruited from a Danish university hospital. Qualitative interviews were performed at the homes of the participants. Content analysis was applied to the data. Results: Managing occupations were manifested in two main categories; (1) Conditions influencing occupations in everyday life and (2) Self-developed strategies to manage occupations. Significance: The findings suggest that people with advanced cancer should be supported to a greater extent in finding ways to manage familiar as well as new and more personally meaningful occupations to enhance quality of life.

The meaning of activity and participation in everyday life when living with hand osteoarthritis

Abstract Objective: The aim of this paper is, first, to advance the understanding of participation and its relationship to activity; second, to add to discussions or understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity connected to the conduct of everyday life in people with hand osteoarthritis (hand OA). Methods: Semi-structured interviews were carried out with 31 men and women living with hand OA because existing research on this group and the challenges they encounter in their everyday life is sparse. The analytical process was inspired by Interpretive Phenomenological Analysis and informed by critical psychology and social practice theory as interpretive frameworks. Results: Our empirical findings indicate that persons with hand OA experience participation restrictions in their everyday lives and activity limitations as aspects of participation. This indicates that activity and participation are experienced as interrelated across social contexts. Conclusions: Participation in everyday life seems complex: what to participate in, how to participate and with whom seem of importance for subjective meaning-making. Implications are discussed in relation to methodology, the empirical findings, and clinical practice.

Guilt without fault: A qualitative study into the ethics of forgiveness after traumatic childbirth.

When a life is lost or severely impaired during childbirth, the midwife and obstetrician involved may experience feelings of guilt in the aftermath. Through three empirical cases, the paper examines the sense of guilt in the context of the current patient safety culture in healthcare where a blame-free approach is promoted in the aftermath of adverse events. The purpose is to illustrate how healthcare professionals may experience guilt without being at fault after adverse events, and Gamlunds theory on forgiveness without blame is used as the theoretical framework for this analysis. Philosophical insight has proven to be a useful resource in dealing with psychological issues of guilt and Gamlunds view on error and forgiveness elucidates an interesting dilemma in the field of traumatic events and medical harm in healthcare, where healthcare professionals experience that well-intended actions may cause injury, harm or even death to their patients. Failing to recognise and acknowledge guilt or guilty feelings may preclude self-forgiveness, which could have a negative impact on the recovery of midwives and obstetricians after adverse events. Developing and improving support systems for healthcare professionals is a multi-factorial task, and the authors suggest that the narrow focus on medico-legal and patient safety perspectives is complemented with moral philosophical perspectives to promote non-judgemental recognition and acknowledgement of guilt and of the fallible nature of medicine.

Sustaining International Partnerships: The European Master of Science Programme in Occupational Therapy, a Case Study

International partnerships are a mechanism for supporting the academic development of occupational therapy and promoting cultural competence. This case study describes the factors that have helped to sustain a post-qualifying programme implemented by five higher education institutions in Denmark, the Netherlands, Sweden, Switzerland and the UK since 1999. Data collection methods were documentary analysis and the reflections of a purposive sample of six key informants. Cohort and outcome data, from 193 students from 31 countries who enrolled between 1999 and 2011, are reported. Each cohort comprises students from an average of eight countries to optimize inter-cultural dialogue. Four factors support sustainability. These are 1) supportive professional European networks; 2) timeliness and alignment with European higher education policy; 3) partnership structures and processes that emphasize joint decision making and accountability; and 4) the stimulus and satisfaction associated with internationalization. The main limitations are considering the OT-EuroMaster as an intrinsic case study and using opportunistic data collection that undermines the rigor and transferability of the findings. Future opportunities include doctoral networks, transnational research and sharing our curricula design with other Regions to spread the collaborative, capacity building endeavours more widely.

Developing community based rehabilitation for cancer survivors: organizing for coordination and coherence in practice

BackgroundIncreasing incidences of cancer combined with prolonged survival have raised the need for developing community based rehabilitation. The objectives of the analysis were to describe and interpret the key issues related to coordination and coherence of community-based cancer rehabilitation in Denmark and to provide insights relevant for other contexts.MethodsTwenty-seven rehabilitation managers across 15 municipalities in Denmark comprised the sample. The study was designed with a combination of data collection methods including questionnaires, individual interviews, and focus groups. A Grounded Theory approach was used to analyze the data.ResultsA lack of shared cultures among health care providers and systems of delivery was a primary barrier to collaboration which was essential for establishing coordination of care. Formal multidisciplinary steering committees, team-based organization, and informal relationships were fundamental for developing coordination and coherence.ConclusionsCoordination and coherence in community-based rehabilitation relies on increased collaboration, which may best be optimized by use of shared frameworks within and across systems. Results highlight the challenges faced in practical implementation of community rehabilitation and point to possible strategies for its enhancement.