Everyday activities when living at home with advanced cancer: A cross-sectional study.

OBJECTIVE: This study aimed at exploring everyday activities of people with advanced cancer living at home: which everyday activities they perform; perceived and observed quality of performance of self-care and household activities; which activities they would like to be able to perform; and determine any gender differences. METHODS: Outpatients (n = 164) with advanced cancer were recruited from Danish oncology units. Data were based on medical hospital records, standardised questionnaires, a 1-day diary, standardised interviews and standardised observations. All data were subject to descriptive and statistical analyses. RESULTS: More than 95% of the study sample was classified in ECOG performance status 1 and 2. Compared to population-based norms, the participants reported lower levels of global health and quality of life, as well as lower physical and role functioning. Across gender, participants spent the majority of the day involved in self-care and leisure activities. They reported to perform self-care independently without risk, although 60% reported problems with mobility. While heavy household activities were reported as most problematic, participants prioritised support to engage in more active leisure and social activities. CONCLUSION: People with advanced cancer experience problems related to performance of and engagement in everyday activities indicating a need for palliative rehabilitation services.

The association between having assistive devices and activities of daily living ability and health-related quality of life: An exploratory cross-sectional study among people with advanced cancer.

OBJECTIVE: To explore whether people with advanced cancer who had assistive devices had higher or lower ADL ability and/or HRQoL than people with advanced cancer who did not have assistive devices. METHODS: A cross-sectional study of 164 participants with advanced cancer. Self-reported ADL ability and HRQoL were assessed using the ADL-Interview and the EORTC QLQ-C30. Data regarding assistive devices were collected using a study-specific questionnaire. Data were analysed using multiple linear regression. The regression coefficients (B) were presented in crude form and adjusted for potential confounding variables (age, gender, cohabiting, receiving help, physical functioning, fatigue and pain). p-Values (p) < 0.05 were considered statistically significant. RESULTS: Having assistive devices was associated with lower ADL ability (B = -0.923, p = <0.0001), but this association was not significant after adjustment where it was found that physical functioning was a confounder positively associated with ADL ability (B = 0.030, p = <0.0001). No significant association was found between having assistive devices and HRQoL. Both fatigue (B = -0.336, p = <0.0001) and pain (B = -0.124, p = 0.010) were negatively associated with HRQoL. CONCLUSION: The participants had the same ADL ability and HRQoL regardless of them having assistive devices. Interventions addressing physical functioning or fatigue and pain might contribute to enhancing ADL ability and HRQoL among people with advanced cancer.

The development of the 'Cancer Home-Life Intervention': An occupational therapy-based intervention programme for people with advanced cancer living at home.

BACKGROUND: Occupational therapy-based interventions may help people with advanced cancer to live actively despite their illness. However, there is limited evidence concerning what kinds of content intervention should encompass, and how this should be done. OBJECTIVE: To describe the development and content of an occupational therapy-based intervention programme for people with advanced cancer living at home. MATERIAL AND METHODS: In the development of the intervention, an evidence synthesis was performed based on a systematic literature search, data from a cross-sectional study, and experiences from an expert panel. RESULTS: The programme contains six components: 1) An initial interview to select which of the other five components to address, based on the participants' individual needs. The interview addressed problems and needs of participants in relation to prioritized activities, in order to tailor the following components: 2) prioritisation of resources, energy and everyday activities; 3) adaptation of activities; 4) adaptation of posture and seating; 5) provision of assistive technology; and, 6) modification of the physical home environment. CONCLUSION: An occupational therapy-based intervention programme for people with advanced cancer living at home has been developed. The study generates knowledge and insights relevant to improving the treatment of this patient group.

Creating a meaningful everyday life: Perceptions of relatives of people with dementia and healthcare professionals in the context of a Danish dementia village.

BACKGROUND: The world's aging population contributes to an increase in people living with dementia, which is perceived as one of the main causes of disability and dependency for older people. The first dementia village in Denmark was established in 2015, with the intention of providing a safe and meaningful everyday life for people with dementia. The purpose of the study was to explore the way in which relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life for the residents in a Danish dementia village. METHODS: A methodology for user involvement in public service development and evaluation called 'The BIKVA methodology' was used followed by a thematic analysis. A purposive sample of 32 participants took part in the study. RESULTS: The analysis revealed one main theme, 'Enabling a familiar and meaningful everyday life in the dementia village', with three corresponding subthemes, reflecting the way in which relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life for the residents in a Danish dementia village. CONCLUSION: The findings showed that relatives of people with dementia and healthcare professionals were committed to creating and maintaining a meaningful everyday life for the residents, but also revealed different understandings of when, where, and how this could be understood and best be achieved. Furthermore, people with advanced dementia may not be able to benefit from the activities and possibilities provided by the dementia village, since this required resources beyond what could be provided.

Lessons learned about occupation-focused and occupation-based interventions: A synthesis using group concept mapping methodology.

Introduction: Occupational therapy (OT) is based on the core assumption that humans are active beings through engagement in occupations. Within OT, occupation is typically used as primary means and/or ends i.e. occupation-focused and/or occupation-based interventions are employed. Studies evaluating such interventions are limited.Objectives: To synthesize experiences about occupation-focused and/or occupation-based interventions. Hence, to identify, organize and prioritize experiences with employing occupation as a core element in OT intervention studies.Methods: Participants were OT PhD students and researchers involved in studies concerning occupation-focused and/or occupation-based interventions. Group Concept Mapping was applied.Results: Based on 133 ideas, a conceptual model emerged encompassing two overall dimensions concerning 'developing interventions' and 'planning intervention studies', respectively. Moreover, ten themes related to one or both dimensions were defined and 94 ideas across clusters had high importance ratings.Conclusion: Synthesis of participants' experiences indicates that 'doing' as agent of change is a core element of OT interventions. Moreover, a multi-level perspective is needed to reach sustainable changes in doing. Group- and peer-support can work as amplifier for change, and flexibility is important during intervention. Such complex interventions need special design and mixed methods in the development, and evaluation of outcome needs to address occupation.

The Association between ADL Ability and Quality of Life among People with Advanced Cancer.

BACKGROUND: Occupational therapy and occupational science are founded on the theoretical core assumption that occupation and quality of life (QoL) are closely related. However, such theoretical core assumptions must be supported through empirically based research. OBJECTIVE: To investigate the association between QoL and occupation, here self-reported and observed ADL abilities as a part of occupation, among people with advanced cancer, including determining whether self-reported or observed ADL ability had the stronger association with QoL. METHODS: The study was nested in a cross-sectional study. The association between ADL ability and QoL among 108 people with advanced cancer was investigated using the ADL Interview (ADL-I), the Assessment of Motor and Process Skills (AMPS), and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30). RESULTS AND CONCLUSIONS: Results showed that high observed ADL motor ability was associated with high QoL. In contrast, observed ADL process ability and self-reported ADL ability were not significantly associated with QoL. Oppositely expected, observed ADL ability had a stronger association with QoL than self-reported ADL ability. Thereby, the study to some extent contributes knowledge confirming the theoretical core assumptions about the relation between occupation, here performance of ADL, and QoL.

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

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.

Stroke patients' experiences with Wii Sports® during inpatient rehabilitation.

INTRODUCTION: Commercial virtual reality games have been used as adjunct therapy for stroke rehabilitation, mainly after patients have been discharged. The aim of this study was to explore stroke patients' experiences with Wii Sports® as a supplement to conventional occupational therapy in a controlled hospital setting. MATERIALS AND METHODS: The study had a qualitative triangulation design that included semi-structured interviews and field notes. Nine Danish stroke patients participated, receiving between one and nine interventions with Wii Sports® during a three-week period. Responses were coded by qualitative content analysis. RESULTS: Analysis revealed one overarching category, "Connecting to past, present, and future occupations", and three categories that encompassed patients' experiences with Wii: (i) variety, (ii) engagement, and (iii) obstacles and challenges. Interview findings were confirmed by field notes that included observations of engagement and challenges. DISCUSSION: Stroke patients in hospital settings may experience Wii Sports® as a beneficial and challenging occupation for both rehabilitation and leisure. Incorporation of Wii Sports® into conventional occupational therapy services may benefit patient rehabilitation directly or provide motivation for alternative leisure activities.

Stroke survivors' experiences of rehabilitation: a systematic review of qualitative studies.

INTRODUCTION: The aim was to obtain the best available knowledge on stroke survivors' experiences of rehabilitation. The increase in demands for accountability in health care and acknowledgement of the importance of client participation in health decisions calls for systematic ways of integrating this perspective. METHODS AND MATERIALS: A systematic review of qualitative studies was performed. A literature search in MEDLINE, CINAHL, PsycINFO, and EMBASE was conducted. Suitability for inclusion was based on selected criteria: published qualitative studies written in English from 1990 to 2008 on stroke survivors' experiences of rehabilitation in a clinical setting. Data analysis entailed extracting, editing, grouping, and abstracting findings. RESULTS: Twelve studies were included. One theme, "Power and Empowerment" and six subcategories were identified: 1) Coping with a new situation, 2) Informational needs, 3) Physical and non-physical needs, 4) Being personally valued and treated with respect, 5) Collaboration with health care professionals and 6) Assuming responsibility and seizing control. DISCUSSION: The synthesis showed that stroke survivors' experiences of rehabilitation reflected individual and relational aspects of power and empowerment. The capacity to assume power and empowerment was a dynamic rather than a progressive issue, and enabling empowerment was a matter of weighing contrasting issues against each other, e.g. the right to decide versus the right not to decide.