Managing an everyday life of uncertainty – A qualitative study of coping in persons with mild stroke

Aim.?The aim of this study was to investigate from the actor's perspective how and why persons with mild stroke coped with their new life situation as they did, during the first year after stroke.

Method.?Eighteen persons physically recovered and independent in P-ADL were interviewed 1 year after stroke. The most common symptoms experienced by the respondents were mental fatigability, memory and concentration difficulties, increased stress sensitivity, irritability, emotionalism, lack of initiative and sensitivity to lights and sounds. The questions concerned how and why the respondents tried to cope with their condition as they did. The interviews were transcribed verbatim and analysed using the grounded theory method.

Results.?Despite a mild stroke, the respondents still after 1 year found everyday life a struggle of uncertainty. Individual and relational concerns and environmental conditions were categories grounded in data describing the coping efforts. The co-occurrence of positive and negative feelings during coping was an important finding. Leisure activities served as an important source of coping.

Conclusion.?Still 1 year after a stroke that in the acute phase was classified as mild, with expectations of complete recovery, respondents struggled to cope with its consequences and often experienced an everyday life of uncertainty.     

Carer experiences of life after stroke – a qualitative analysis

Aims and objectives.?Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method.?A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43?min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results.?An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions.?It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.     

Shoulder pain after stroke – experiences,consequences in daily life and effects of interventions: a qualitative study

Purpose: To describe experiences of shoulder pain after stroke, how pain affects daily life and perceived effects of interventions.

Method: A qualitative interview study including 13 community-dwelling persons (six women; median age 65?years) with persistent shoulder pain after stroke.

Results: Three categories emerged from the content analysis. In “Multiple pain characteristics” an insidious pain onset was reported. The pain existed both day and night and could be located around the shoulder girdle but also have radiation to the arm and hand. An explanation of the pain was seldom given. In “Limitations caused by the pain” it was described how the pain negatively influenced personal care, household activities and leisure, but also could lead to emotional reactions. In “Multiple pain interventions with various effects” a variety of interventions were described. Self-management interventions with gentle movements were perceived most effective. A restraint attitude to pain medication due to side effects was reported.

Conclusions: Shoulder pain after stroke can lead to a variety of pain characteristics. As the pain is complex and may affect many important areas in a person’s life, multidisciplinary rehabilitation interventions are important.

• Implications for rehabilitation

• Shoulder pain after stroke can lead to a variety of pain characteristics with radiation to the arm and hand

• Shoulder pain often influence personal care, household activities and leisure negatively, which may lead to emotional reactions

• Self-management interventions with gentle movements are perceived most effective

• As the shoulder pain after stroke is complex, interventions by a multidisciplinary team may be needed

     

The intention to exercise and the execution of exercise among persons with multiple sclerosis – a qualitative metasynthesis

Purpose: This review was designed as a qualitative metasynthesis aiming to identify factors influencing the intention to exercise and the execution of exercise among persons with multiple sclerosis (PwMS). Method: Based on principles laid out by Sandelowski and Barroso, this qualitative metasynthesis started with a systematic literature search for studies of PwMS’s experiences relating to exercise in the following databases: CINAHL, Rehabilitation and Sports Medicine Source, PubMed, Web of Science and Psychology & Behavioral Science. The metasynthesis procedure also included critical appraisal using the Consolidated Criteria for Reporting Qualitative Research checklist, and integrating synthesis of the articles’ findings. Results: The metasynthesis included nine articles. Factors identified as influencing intention to exercise and the execution of exercise included social support, professional support and outcome expectations. Strong relationships between these three themes were detected for the intention to exercise, the execution of exercise or both among PwMS. Conclusions: The present metasynthesis offers a comprehensive understanding of factors influencing the intention to exercise and the execution of exercise among PwMS. Our findings reveal that health professionals influence the part of the process where PwMS enter the exercise setting, as well as the PwMS’s intention to exercise.

• Implications for Rehabilitation

• Social support, professional support and outcome expectations are potential facilitators and barriers for the intention to exercise and the execution of exercise among PwMS.

• Health professionals specializing in MS rehabilitation can influence the intention and the execution of physical exercise among PwMS when there exists a personal and supportive patient–professional relationship.

• Outcome expectations may impact the motivational and volitional phases of physical exercise.

     

Experiences of using information and communication technology within the first year after stroke – a grounded theory study

Purpose: The purpose of this study was to identify how people 6–12 months after stroke were using and integrating information and communication technology (ICT) in their everyday lives.

Method: To capture the participants’ experiences, one focus group and 14 individual interviews were carried out in Sweden and Denmark regarding the use of ICT in everyday life. The participants comprised 11 men and seven women aged 41–79 years. A grounded theory approach was used throughout the study and a constant comparative method was used in the analysis.

Results: Five categories were identified from the analysis of the interviews with the participants: 1) Using the mobile phone to feel safe, 2) Staying connected with others, 3) Recreating everyday life, 4) A tool for managing everyday life, and 5) Overcoming obstacles for using ICT. From these categories one core category emerged: The drive to integrate ICT in everyday life after stroke.

Conclusions: People with stroke had a strong drive to integrate ICT in order to manage and bring meaning to their everyday lives, although sometimes they needed support and adaptations. It is not only possible but also necessary to start using ICT in rehabilitation in order to support people’s recovery and promote participation in everyday life after stroke.

• Implications for rehabilitation

• People with stroke have a strong drive for using information and communication technology in their everyday lives, although support and adaptations are needed.

• The recovery process of people with stroke could benefit from the use of ICT in the rehabilitation and ICT could possibly contribute to independence and promote participation in everyday life.

• Knowledge from this study can be used in the development of an ICT-based stroke rehabilitation model.

     

Experiences of individuals with chronic low back pain during and after their participation in a spinal stabilisation exercise programme – A pilot qualitative study

Spinal stabilisation exercises are commonly used in the management of low back pain (LBP). There is limited evidence relating to patients' experiences of their involvement in such programmes. The aim of this study was to explore the experiences of a sample of individuals with chronic LBP who participated in a randomised controlled trial (RCT) investigating the most efficacious dosage and frequency of spinal stabilisation exercises. The qualitative study involved nine participants who took part in focus group discussions. The data were analysed using thematic content analysis and provided insights into the experiences of the participants. Four themes emerged: Physical dimensions of the LBP experience, emotional and psychological dimensions of the LBP experience and perceived effects of the programme and lastly, the impact of the treatment programme on participants' knowledge, understanding and adherence. In conclusion participants' experiences were not limited to the positive effects of stabilisation exercises on pain, functional disability and quality of life, but also reflected increases in confidence, the formulation of self help strategies and the ability to exert better control over their LBP. The findings highlight the importance of well planned associated educational support packages in the treatment of LBP paving the way for future qualitative research.     

Everyday life for users of electric wheelchairs – a qualitative interview study

Purpose: The aim of this paper is to explore how users of electric wheelchairs experience their everyday life and how their electric wheelchairs influence their daily occupation. Occupation is defined as a personalized dynamic interaction between person, task and environment, and implies the value and meaning attached. Method: Nine semi-structured interviews were conducted with experienced electric wheelchair users. ValMo was used as the theoretical framework for both interviewing and the analysis. The transcribed interviews were analysed using thematic analysis. Results: Findings revealed key elements in electric wheelchair users’ experience of how the use of a wheelchair influences everyday life and occupation. Four central themes emerged from the participants’ experiences 1) The functionality of the wheelchair, 2) The wheelchair as an extension of the body, 3) The wheelchair and social life, and 4) The wheelchair and identity issues. The themes were interrelated and show how all levels of occupation were influenced both in a positive and negative way, and how it affected identity. Conclusions: It is essential that professionals working with electric wheelchair users are aware of how all levels of occupation and identity are influenced by using a wheelchair. This will assist professionals in supporting the users living an autonomous and meaningful life.

Implications for Rehabilitation

• All levels of occupation and identity are influenced by using a wheelchair.

• It is important that the electric wheelchair functions as an extension of the user’s body and that surroundings are made as accessible as possible.

• When choosing an electric wheelchair it is important that professionals make assessments that embrace all levels of the user’s occupation.

     

The importance of a daily rhythm in a supportive environment – promoting ability in activities in everyday life among older women living alone with chronic pain

Abstract

Purpose: The aim of this study was to explore how older women living alone with chronic musculoskeletal pain, describe their ability in performing activities in everyday life and what could promote their ability in activities in everyday life as well as their perceived meaning of a changed ability to perform activities in everyday life. Method: Qualitative interviews were conducted with 12 women, and an inductive content analysis was used. Results: The results showed the importance of a daily rhythm of activities. Activities included in the daily rhythm were socializing with family and friends, physical activities, doing own activities as well as activities supported by relatives and the community. The activities described by the women also promoted their ability in activities in everyday life. Other findings were the women’s perceived meaning of being independent and maintaining that independency, along with the meaning of accepting and adapting to a changed life situation. Conclusion: This paper concludes that it is important to be sensitive of individual needs regarding the daily rhythm of activities when health-care professionals intervene in the activities in everyday life of older women living alone, promote the women’s independency, and enable them to participate in the community.

• Implications for Rehabilitation

• A daily rhythm of activities is important for older women who live alone with chronic musculoskeletal pain.

• The importance of health-care professionals being sensitive to individual needs to promote ability in activities in everyday life and to encourage the everyday activities into a daily rhythm.

• Facilitate the women’s desire and will of independency, despite their needs of help from their environment to manage their everyday life.

     

Perceived effects of Tango Argentino on body experience in persons with Parkinson’s disease (PD)—A qualitative study with affected persons and their partners

BackgroundPersons with Parkinson’s disease (PD) experience somatic and psycho-emotional limitations. As a neurodegenerative disease with increasing motor symptoms, PD changes the body experience. Embodied activities like dancing are beneficial to individuals with PD regarding mobility, balance and body feeling. The objective of this study was to assess the impact of Tango Argentino (TA) on body experience in individuals with PD.MethodsThis qualitative study was conducted among 12 individuals with PD and their dance partners participating in TA courses for persons with PD and uses semi-standardized interviews. The heterogeneity of the sample was mainly based on the number of TA classes, so that participants were distinguished in participants with 10 h (beginners) and participants with more than 10 h (advanced). Further variance was due to different age groups and duration of disease.ResultsParticipants reported change on five categories of body experiences: body awareness, motor symptoms and movement, general feelings, body sensations and disease-related feelings. Participants cited a shift in body awareness and improved stability, walking safety, enhanced mobility and amelioration in gestures and facial expressions. In general, participants described reduced body fatigue, anxiety, shame and frustration and increase in joy, pride, curiosity as well as reinforcement of partnership. With regard to perception, positive and negative feelings, ease, relaxation and increase of inner congruence were reported. The experience of normality and health helped to generate greater acceptance of disease burdens and to develop self-confidence and self-assurance. Dance partners confirmed the perceptions of the dancers with PD.ConclusionThe perceived effects of TA courses may be linked to a positive body awareness and body control which may be related improved motor symptoms, social and everyday life. These perceived effects should be controlled in relation to the long time change in embodied activity and body experience in persons with PD.     

Use of assistive devices – a reality full of contradictions in elderly persons' everyday life

Purpose. The aim was to explore very old persons' use and experience of assistive devices in daily occupations and changes over a ten-year period.

Method. This study focuses on 86-year olds (n = 201) and following a retrospective longitudinal design, reviews their situation at the age of 76 (n = 199). Data were collected by structured and open-ended interviews during home visits and subjected to statistical and content analysis.

Results. A significantly higher proportion (69%) used assistive devices at the age of 86 than at age 76 (43%). During the interval about one third became new users, 35% were permanent users and 23% did not use assistive devices at all. Among those being dependent on personal help in ADL a higher proportion were users of assistive devices (81%) than among those being independent (55%) (p = 0.00013). The result regarding the usefulness, reason for use and experience of using assistive devices showed that very old persons' perspectives on personal, practical and social aspects varied greatly and were often contradictory.

Conclusions. An assistive device is generally regarded as an enabler in daily occupation, but it can also become a ‘disabler’. There is a need for a deeper and broader understanding of these ambivalent perspectives and an ethical discussion of subtle factors that might influence the use and experience of assistive devices.     

Experiences of and factors associated with dietary sodium adherence in heart failure from patients’ and their caregivers’ perspectives: A qualitative study

This study explored experiences of dietary sodium adherence among patients with heart failure and their caregivers. Qualitative data were collected from 22 patients and 18 caregivers using an interview guide and were analyzed using content analysis. Four themes were (1) lack of adherence to low-sodium diet, (2) several barriers to dietary sodium adherence, (3) a few facilitators of dietary sodium adherence, and (4) distorted perceptions of dietary education from healthcare providers. The majority of patients had poor dietary sodium adherence. Distorted perceptions, insufficient knowledge, disadvantages of dietary sodium adherence, and lack of family support were barriers to dietary sodium adherence, and family support was a facilitator. The majority of patients received dietary education from their healthcare providers but had little knowledge about the detailed content and the connection to heart failure management. More effective interventions reflecting patients’ and caregivers’ dietary experiences need to be developed and delivered.     

Impact of environmental factors in home rehabilitation – a qualitative study from the perspective of older persons using the International Classification of Functioning,Disability and Health to describe facilitators and barriers

Purpose: The aim of this study was to explore older people’s experience of environmental factors that impact on their activity and participation in home rehabilitation. Method: Older people aged between 68 and 93 years and receiving home rehabilitation were interviewed. A qualitative content analysis was performed on the interview text using the predetermined structure of the International Classification of Functioning, Disability and Health (ICF) environmental domain. The text was linked to the closest ICF category. Results: The results identified environmental facilitators and barriers that influenced activity and participation among older people receiving home rehabilitation. Approaches that provided a facilitative environment were access to assistive products and technologies, alterations to the physical environment, social support and relationships, and adjusted health and social care services. Conclusions: A qualitative study using ICF-listed environmental factors contributed a holistic view of facilitators and barriers in home rehabilitation for older people. Awareness of the importance of the impact of the social environment on activities and participation could improve home rehabilitation services for older people. The study represents an important step towards a holistic approach using the ICF, which aims to enable all health care professionals to describe, plan and evaluate rehabilitation services together with older people across the health and social care sectors.

Implications for Rehabilitation

• Environmental factors can be considered as obstacles or facilitators depending on each unique individual’s need.

• In a relatively small sample, this study shows the importance of the impact of the social environment on activities and participation among older people receiving home rehabilitation.

• Using ICF “linking rules” to link environmental factors as facilitators or barriers reported by older people can identify potentially important areas in home rehabilitation service described in the ICF categories. This can facilitate to improve rehabilitation service for older people.

• Reveals health care professionals as one central environmental factor for older people’s rehabilitation.

     

Experiences of patients with acute abdominal pain in the ED or acute surgical ward – A qualitative comparative study

The Danish health care system is currently establishing emergency departments (EDs) with an observation unit nationwide. The aim of the study was to investigate patients with acute abdominal pain and their experiences upon arrival and stay in an acute surgical ward (ASW) versus an ED with an observation unit. A phenomenological-hermeneutic comparative field study with participant observation and interviews was performed. The analysis showed five themes: Waiting, being placed on the edge, taking or not taking initiative, being the object of attention and being taken seriously. The conclusion was that the ED included a multidisciplinary team with nurses, who mainly had interactions with the patients before surgical assessment. In all, it resulted in fragmentation of care and a patient experience of repetition. In ASW, focus was on assessment by a senior physician, only, and the nurses’ interaction with the patients took place after surgical assessment. In all, patients experienced long waiting times. The study shows a need to define the roles of the professionals in units receiving patients with acute abdominal pain in order to fulfil the medical as well as the experienced needs of the acute patient.     

Between two roles – Experiences of newly trained nurse practitioners in surgical care in Sweden: A qualitative study using repeated interviews

The position of Nurse Practitioner is a new role in Nordic countries. The transition from a registered nurse to the Nurse Practitioner role has been reported to be a personal challenge. This study, guided by the Nordic theoretical model for use in the education of advanced practice nurses, represents a unique opportunity to describe this transition for newly graduated Nurse Practitioners in an interprofessional surgical care team in Sweden. The aim was to explore how the first Nurse Practitioners in surgical care experienced the transition into a new role and what competences they used in the team. Eight new Nurse Practitioners with parallel work in clinical practice were interviewed twice around the time of their graduation. The qualitative analyses show that the participants integrated several central competences, but the focus in this early stage in their new role was on direct clinical praxis, consultation, cooperation, case management, and coaching. Transition from the role of clinical nurse specialist to nurse practitioner was a challenging process in which the positive response from patients was a driving force for the new Nurse Practitioners. The participants felt prepared for and determined to solve the challenging situations they approached working in the interprofessional team.     

Struggling at work – a qualitative study of working Danes with depressive symptoms

Abstract

Purpose: Little is known on how employees at work with mental health problems experience their work environment. This study explores how a selected sample of Danish employees with depressive symptoms experience the interaction with their work environment and how they respond to and deal with problems at work. Methods: From a survey study on work and mental health in Denmark, we invited participants for in-depth interviews. Using grounded theory, we conducted 13 semi structured interviews with employees, at work, experiencing depressive symptoms. Findings: Work was pivotal for the informants who were in an on-going process that we conceptualised as struggling at work. Informants struggled with the negative experiences of work that led to emotional, cognitive and somatic symptoms. Relationships with supervisors and colleagues, work load and work pressure and their self-image as a good worker conditioned the struggle. The informants found themselves unable to change their problematic working situation. This gradually led to different strategies to endure work and take care of one-self. These strategies were as follows: tending to symptoms and altering prospects for their future. The consequence of the on-going struggle was that the informants distanced themselves from their work. Conclusions: This study provided insight to the process of struggling at work, which the interviewed employees with depressive symptoms experienced.

• Implications for Rehabilitation

• Behaviour of supervisors is a key element for employees with depressive symptoms struggling at work. Practitioners and other health and rehabilitation practitioners working with people with depressive symptoms and other mental health problems could inquire about supervisor's behaviour and relation between supervisors and employees.

• Interventions that targets both the individual employee as well as work environment focused interventions at the organisational level could be beneficial for employees with mental health problems as well as the workplaces.

     

Effects of hand-training in persons with myotonic dystrophy type 1 – a randomised controlled cross-over pilot study

Abstract

Purpose: To investigate the effects of a hand-training programme on grip, pinch and wrist force, manual dexterity and activities of daily living, in adults with myotonic dystrophy type 1 (DM1). Method: In this randomised controlled trial with a crossover design, 35 adults with DM1 were, after stratification for grip force, assigned by lot to two groups. Group A started with 12 weeks of hand training, while group B had no intervention. After a wash-out period of 12 weeks, where none received training, the order was reversed. The Grippit® was used as primary outcome measure and the hand-held Microfet2? myometer, the Purdue Pegboard, the Canadian Occupational Performance Measure (COPM) and the Assessment of Motor and Process Skills (AMPS) were secondary outcome measures. Assessments were performed before and after training and control periods, i.e. four times altogether. Results: Ten persons dropped out and 13 had acceptable adherence. Intention-to-treat analyses revealed significant intervention effects for isometric wrist flexor force (p?=?0.048), and for COPM performance (p?=?0.047) and satisfaction (p?=?0.027). On an individual level, improvements were in general showed after a training period. Conclusion: The hand-training programme had positive effects on wrist flexor force and self-perception of occupational performance, and of satisfaction with performance. No evident detrimental effects were shown.

• Implications for Rehabilitation

• Myotonic dystrophy type 1 (DM1) is a slowly progressive neuromuscular disease characterised by myotonia and muscle weakness and wasting.

• People with DM1 are often concerned about their ability to carry out ADL and to participate in, e.g. work, sports and hobbies when they gradually become weaker.

• This pilot study showed that a hand-training programme improved wrist flexor force and self-perception and satisfaction of occupational performance.

• Resistance training of hand muscles with a silicon-based putty can be a therapy option for people with DM1 in clinical practise.

     

Management of everyday work in Emergency Departments – An exploratory study with Swedish Managers

IntroductionThrough their formal mandate, position and authority, managers are responsible for managing everyday work in Emergency Departments (EDs) as well as striving for excellence and dealing with the individual needs of practitioners and patients. The aim of the present study is to explore managers’ experiences of managing everyday work in Swedish EDs.MethodA qualitative and exploratory design has been used in this study. Seven managers were interviewed at two EDs. Data was analysed using qualitative content analysis with focus on latent content.ResultsManagers experience everyday work in the ED as lifesaving work. One of the characteristics of their approach to everyday work is their capability for rapidly identifying patients with life-threatening conditions and for treating them accordingly. The practitioners are on stand-by in order to deal with unexpected situations. This implies having to spend time waiting for the physicians’ decisions. Management is characterised by a command and control approach. The managers experience difficulties in meeting the expectations of their staff. They strive to be proactive but instead they become reactive since the prevailing medical, bureaucratic and production-orientated systems constrain them.ConclusionThe managers demonstrate full compliance with the organisational systems. This threatens to reduce their freedom of action and influences the way they perform their managerial duties within and outside the EDs.