Cathrine Arntzen

Long-term recovery trajectory after stroke: an ongoing negotiation between body, participation and self

Abstract Purpose: Research has mainly focused on the first year of recovery trajectory after stroke, but there is limited knowledge about how stroke survivors manage their long-term everyday lives. This study seeks to fill this gap by exploring the long-term (1–13 years) negotiations of stroke survivors when they experience progress, wellbeing and faith in the future. Method: Repeated in-depth interviews were conducted with nine people living with moderate impairment after stroke and their closest relatives. Concepts from phenomenology and critical psychology constituted the frame of reference of the study. Results: The long-term stroke recovery trajectory can be understood as a process of struggling to overcome tensions between three phenomena under ongoing change: the lived body, participation in everyday life and sense of self. During the recovery process, stroke survivors experience progress, well-being and faith in the future when moving towards renewed relationships, characterised by (1) a modified habitual body, (2) repositioned participation in specific everyday life contexts and (3) a transformed sense of self. Conclusions: This study stresses the importance of developing new forms of professional support during the long-term recovery trajectory, to stimulate and increase interaction and coherence in the relationship between the stroke survivors bodily perception, participation in everyday life and sense of self. Implications for Rehabilitation The study deepening how the long-term recovery trajectory after stroke is about ongoing embodied, practical and socially situated negotiations. The study demonstrates that the recovery trajectory is a long term process of learning where the stroke survivor, as an embodied agent, gradually modifies new bodily habits, re-position participation and transforming of the self. Health personnel are usually available in the acute and early rehabilitation period. The three phenomenons under ongoing change; “body”, “participation” and “self” are at this point just about being moved toward a renewed and a more coherent relationship in the stroke survivor long-lasting everyday life situated recovery trajectory. Available rehabilitation services at the municipal level supporting stroke survivors and relatives practical, social and interpersonal long-term challenges in everyday life can be important for minimizing their struggles and for promoting the experience progress, wellbeing and faith in the future.

The bodily experience of apraxia in everyday activities: a phenomenological study

Purpose: The aim of this study is to explore apraxia as a phenomenon in everyday activities, as experienced by a group of stroke patients. Some consequences for clinical practice are suggested. Method: In this phenomenological hermeneutical study, six persons with apraxia were followed from 2 to 6 months, from the early phase of stroke rehabilitation. ADL-situations and interactions with therapists were observed and videotaped repeatedly during the rehabilitation trajectory, to provide access to and familiarity with the participant’s apractic difficulties over time. Two in-depth interviews were conducted with each participant. Interviews and video observations were analyzed together, taking Merleau-Ponty’s concept of bodily intentionality as basis for analysis and his phenomenology as the main theoretical perspective of the study. Results: Five types of altered bodily intentionality were described by the participants [1]: Gap between intention and bodily action [2], Fragmented awareness in action [3], Peculiar actions and odd bodies [4], Intentionality on the loose, and [5] Fighting against tools. These were recognized as characteristics typical of the apraxia experience. Conclusion: The phenomenology of Merleau-Ponty, and his concept of bodily intentionality in particular, elucidate the way specific apractic difficulties come into being and may thus render apraxia less incomprehensible. The apraxia phenomenon appears as characteristic fragmentations of anticipation inherent in action performance, thereby “slackening” the bodily intentionality. Identifying apractic changes of intentionality may help health professionals to adjust and individualize therapy, and facilitate patients’ acting competence in everyday life. Implications for Rehabilitation Few studies have explored how apraxia appears in everyday life activities, e.g. during rehabilitation practice. The study explores apraxia as a phenomenon in everyday activities, as experienced by a group of stroke patients. Merleau-Ponty’s concept of bodily intentionality constitutes the analytic focus. Reflection upon changes of intentionality in illness may help professionals focus on patients’ experiences and their struggles. Findings support the necessity of the user perspective, with a more adapted, individualized and contextualized occupational therapy.

Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers

Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD.

The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference

BACKGROUND This study was a part of a larger study exploring the impact of assistive technology on the lives of young people living with dementia (YPD). This paper focuses on one of the most useful devices, the simple remote control (SRC). The objective was to explore the reason why the SRC is significant and beneficial in the everyday lives of YPD and their caregivers. METHODS This qualitative longitudinal study had a participatory design. Eight participants received an SRC. The range for using it was 0-15 months. In-depth interviews and observations were conducted at baseline and repeated every third month up to 18 months. A situated learning approach was used in the analysis to provide a deeper understanding of the significance and use of SRC. RESULTS Young people having dementia spend a substantial amount of time alone. Watching television was reported to be important, but handling remote controls was challenging and created a variety of problems. YPD learned to use SRC, which made important differences in the everyday lives of all family members. Comprehensive support from caregivers and professionals was important for YPD in the learning process. CONCLUSIONS The SRC was deemed a success because it solved challenges regarding the use of television in everyday lives of families. The design was recognizable and user-friendly, thus allowing YPD to learn its operation. Access to professional support and advice regarding assistive technology is vital for establishing a system for follow-up and continued collaboration to make future adaptations and adjustments.

Validity, reliability and Norwegian adaptation of the Stroke-Specific Quality of Life (SS-QOL) scale:

Background: There is a paucity of stroke-specific instruments to assess health-related quality of life in the Norwegian language. The objective was to examine the validity and reliability of a Norwegian version of the 12-domain Stroke-Specific Quality of Life scale. Methods: A total of 125 stroke survivors were prospectively recruited. Questionnaires were administered at 3 months; 36 test–retests were performed at 12 months post stroke. The translation was conducted according to guidelines. The internal consistency was assessed with Cronbach’s alpha; convergent validity, with item-to-subscale correlations; and test–retest, with Spearman’s correlations. Scaling validity was explored by calculating both floor and ceiling effects. A priori hypotheses regarding the associations between the Stroke-Specific Quality of Life domain scores and scores of established measures were tested. Standard error of measurement was assessed. Results: The Norwegian version revealed no major changes in back translations. The internal consistency values of the domains were Cronbach’s alpha = 0.79–0.93. Rates of missing items were small, and the item-to-subscale correlation coefficients supported convergent validity (0.48–0.87). The observed floor effects were generally small, whereas the ceiling effects had moderate or high values (16%–63%). Test–retest reliability indicated stability in most domains, with Spearman’s rho = 0.67–0.94 (all p < 0.001), whereas the rho was 0.35 (p < 0.05) for the ‘Vision’ domain. Hypothesis testing supported the construct validity of the scale. Standard error of measurement values for each domain were generated to indicate the required magnitudes of detectable change. Conclusions: The Norwegian version of the Stroke-Specific Quality of Life scale is a reliable and valid instrument with good psychometric properties. It is suited for use in health research as well as in individual assessments of persons with stroke.

Stroke survivors’ and relatives’ negotiation of relational and activity changes: A qualitative study

Abstract Objective: This study explores stroke survivors’ and relatives’ negotiation of relational and activity change in their interrelated long-term meaning-making processes of everyday life and what it means for the experience of progress and well-being. Material and methods: Repeated retrospective in-depth interviews were conducted with both the stroke survivor and relatives. A Critical Psychological Perspective gives the frame of reference to study more closely what is going on in and across particular contexts in family members’ ongoing social practices. Results: An asymmetric problematic relationship can develop among the participants in the context of family life. However, the analysis identifies six beneficial relational and activity changes, which contribute to a reciprocal, balanced repositioning, and help the family move in a more positive direction. The repositioning processes facilitate a new transformation of family we-ness, which is important for the participants’ experience of process and well-being. The comprehensive family work that has to be done is about managing the imbalance of everyday life, upholding separate activities outside the family sphere and dealing with the fact that peripheral others become more peripheral. Conclusion: The study addresses some arguments for taking a family-centred perspective in occupational therapy practice, as well as in a stroke rehabilitation service in general.

An Embodied and Intersubjective Practice of Occupational Therapy

The literature on clinical reasoning tends to ignore the context and the interaction between patient and therapist. This article outlines a theoretical foundation for an extended mode of clinical reasoning in occupational therapy. Cognitive theories of human action, as well as narrative and instrumental approaches, provide an insufficient picture of the nature of clinical reasoning in occupational therapy practice. An embodied intersubjective clinical reasoning can function as an adjunct to traditional clinical reasoning in occupational therapy practice and is discussed through the concepts of the ambiguous body, incorporation of things, and the process of shared meaning-making. This mode of reasoning can help occupational therapy practitioners to be aware of how they influence the patient’s perception of body, self, and world. It can promote a better understanding of details in embodied performances and in the co-construction of meaning, positively influencing occupation, participation, and health.

Benefits and burdens: family caregivers’ experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Abstract Background: People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers’ (FC) experiences and involvement in the use of AT in everyday life. Aim: To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD). Method: Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families’ use and experiences of AT in everyday life. Results: Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver. Conclusions: The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies. Implications for Rehabilitation Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT. The simpler the AT, the better. The AT should be introduced at “the right time”, before the cognitive and adaptive reduction is too great. The “window” for implementation may be short. AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to. A system for individualized support over time is necessary for implementing AT for this group.

The family experiences of in-hospital care questionnaire in severe traumatic brain injury (FECQ-TBI): a validation study

BackgroundFamily members are important for support and care of their close relative after severe traumas, and their experiences are vital health care quality indicators. The objective was to describe the development of the Family Experiences of in-hospital Care Questionnaire for family members of patients with severe Traumatic Brain Injury (FECQ-TBI), and to evaluate its psychometric properties and validity.MethodsThe design of the study is a Norwegian multicentre study inviting 171 family members. The questionnaire developmental process included a literature review, use of an existing instrument (the parent experience of paediatric care questionnaire), focus group with close family members, as well as expert group judgments. Items asking for family care experiences related to acute wards and rehabilitation were included. Several items of the paediatric care questionnaire were removed or the wording of the items was changed to comply with the present purpose. Questions covering experiences with the inpatient rehabilitation period, the discharge phase, the family experiences with hospital facilities, the transfer between departments and the economic needs of the family were added. The developed questionnaire was mailed to the participants. Exploratory factor analyses were used to examine scale structure, in addition to screening for data quality, and analyses of internal consistency and validity.ResultsThe questionnaire was returned by 122 (71%) of family members. Principal component analysis extracted six dimensions (eigenvalues > 1.0): acute organization and information (10 items), rehabilitation organization (13 items), rehabilitation information (6 items), discharge (4 items), hospital facilities-patients (4 items) and hospital facilities-family (2 items). Items related to the acute phase were comparable to items in the two dimensions of rehabilitation: organization and information. All six subscales had high Cronbach’s alpha coefficients >0.80. The construct validity was confirmed.ConclusionThe FECQ-TBI assesses important aspects of in-hospital care in the acute and rehabilitation phases, as seen from a family perspective. The psychometric properties and the construct validity of the questionnaire were good, hence supporting the use of the FECQ-TBI to assess quality of care in rehabilitation departments.