Using everyday technology to compensate for difficulties in task performance in daily life: experiences in persons with acquired brain injury and their significant others

PURPOSE. The purpose of this study is to illuminate how persons with acquired brain injury (ABI) and their significant others experienced individualised occupation-based interventions using commonly available everyday technology (ET) to compensate for perceived difficulties with performance of tasks in daily life. METHOD. Qualitative research interviews were conducted with 10 persons with ABI and with one of their significant others. The data were analysed according to qualitative content analysis. RESULTS. The persons with ABI experienced that they mastered their lives in a better way by the compensatory use of ET. They became capable of doing tasks independently and experienced themselves as being a new person. During the intervention process, persons with ABI became aware of the compensatory potential of familiar ET, and they were supported to use effective compensatory strategies and incorporate them into their habits. Their significant others felt a relief in daily life, and their mood was positively affected as they experienced reduced responsibility and need of control. CONCLUSIONS. This qualitative study has shown that persons with ABI, as well as their significant others, experienced a multitude of benefits from occupation-based interventions using commonly available ET to compensate for their difficulties in the performance of tasks in daily life and that the goals achieved affected their overall contentment with life.     

Using everyday technology to compensate for difficulties in task performance in daily life: experiences in persons with acquired brain injury and their significant others

Purpose.?The purpose of this study is to illuminate how persons with acquired brain injury (ABI) and their significant others experienced individualised occupation-based interventions using commonly available everyday technology (ET) to compensate for perceived difficulties with performance of tasks in daily life.

Method.?Qualitative research interviews were conducted with 10 persons with ABI and with one of their significant others. The data were analysed according to qualitative content analysis.

Results.?The persons with ABI experienced that they mastered their lives in a better way by the compensatory use of ET. They became capable of doing tasks independently and experienced themselves as being a new person. During the intervention process, persons with ABI became aware of the compensatory potential of familiar ET, and they were supported to use effective compensatory strategies and incorporate them into their habits. Their significant others felt a relief in daily life, and their mood was positively affected as they experienced reduced responsibility and need of control.

Conclusions.?This qualitative study has shown that persons with ABI, as well as their significant others, experienced a multitude of benefits from occupation-based interventions using commonly available ET to compensate for their difficulties in the performance of tasks in daily life and that the goals achieved affected their overall contentment with life.     

Impact of comprehensive day treatment on societal participation for persons with acquired brain injury

OBJECTIVES: To evaluate comprehensive day treatment (CDT) for survivors of brain injury by time since injury and to identify outcome predictors. DESIGN: Before and after. SETTING: Rehabilitation center. PARTICIPANTS: Ninety-six program graduates; 17 dropouts with acquired brain injury. INTERVENTIONS: Comprehensive Day Treatment Program: daily group sessions to build cognitive and behavioral skills through a transdisciplinary approach, supportive feedback, and a variety of therapeutic modalities. Obtained outcome measures before and after the program, and at 1-year follow-up. MAIN OUTCOME MEASURES: Outcome: Independent living status, vocational independence scale at program end and 1-year follow-up; and Rasch-analyzed Mayo-Portland Adaptability Inventory (MPAI-22) and goal attainment scaling (GAS) at program end. Predictors: age, education, severity of initial injury, time since injury, and preadmission MPAI-22. RESULTS: Significant goal achievement on GAS and improvement on MPAI-22; increased societal participation at 1-year follow-up for those treated postacutely and many years after injury: 72% of graduates living independently; 39% working independently, 10% in transitional placements, and 18% in supported or volunteer work. Long-term outcomes were modestly related linearly to preadmission MPAI-22 and nonlinearly to time since injury. CONCLUSIONS: CDT improves societal participation even among persons with a long history of limited participation after brain injury. This de facto extended baseline analysis indicates the effectiveness of CDT and paves the way for randomized control trials of active treatment components. Relationships of predictors to outcomes are not sufficiently strong for patient selection. More effective interventions for vocational reintegration are needed for those most severely disabled after brain injury.     

Abandoned to the strains of daily life: a qualitative study of the long-term experiences in partners to persons after a mild to moderate stroke

Purpose: To describe the experiences of everyday life over 6 years after stroke, from the perspectives of partners to persons after stroke.

Materials and methods: Semi structured individual interviews were conducted with seven partners to persons who had had stroke. The interviews were recorded and then transcribed verbatim. The participants comprised two men and five women aged 60–82 years. The data were collected and analysed using a grounded theory approach.

Results: One core category Living in strained everyday circumstances and three categories Feelings of anxiety, Living a demanding day to day life, and Adjusting to a changed role emerged from the analysis. The participants had developed strategies and new ways to boost their energy level in order to find the strength needed for their everyday life.

Conclusion: This study shows that the everyday lives of partners to people who have had a stroke are characterised by feelings of strain and anxiety and that they need possibilities for different kinds of long-term support. Our findings may contribute to increased knowledge among health workers and increased readiness to offer support or referral to other meeting places such as peer support groups.

• Implications for rehabilitation

• The everyday lives of partners to people who have had a stroke are characterised by feelings of strain and anxiety.

• Partners to people who have had a stroke need possibilities for different kinds of long-term support.

• Possibilities for relief among partners to persons after stroke may be organised for example within the municipality or by patient organisations and other voluntary networks such as peer support groups.

     

Reliability of a timed walk test in persons with acquired brain injury

OBJECTIVE: The purpose of this study was to assess the reliability of a 6-min walk test in individuals with acquired brain injury. DESIGN: A total of 23 clients (14 men, 9 women) participated. All participants were clients in a postacute residential rehabilitation facility. The time from injury averaged 12 mo (range, 7-38 mo). Subjects were instructed to walk around a rectangular track as many times as possible during a period of 6 min. The test was performed twice, separated by 1-10 days. Heart rate was monitored continuously throughout the test, and distance traveled was recorded in meters after completion. A physiologic cost index (beats per meter) was calculated. Intraclass correlation coefficients were calculated for distance traveled, heart rate responses, and physiologic cost index. RESULTS: The mean distance walked was 403 +/- 105 m (trial 1) and 417 +/- 106 m (trial 2). The intraclass correlation coefficient for distance was 0.94. The mean steady-state heart rate was 118 +/- 21 beats/min (trial 1) and 117 +/- 20 beats/min (trial 2), and the intraclass correlation coefficient was 0.65. The mean physiologic cost index was 0.52 +/- 0.19 beats/m (trial 1) and 0.55 +/- 0.22 beats/m (trial 2), and the intraclass correlation coefficient was 0.89. CONCLUSIONS: Distance traveled and the physiologic cost index demonstrated excellent reliability, whereas heart rate responses for individual minutes demonstrated only fair reliability. The individuals studied were very consistent in their efforts, despite a combination of physical and cognitive impairments. The results suggest that the 6-min walk test can be used reliably in the assessment of functional ambulation in persons with acquired brain injury.     

Parents' experiences of participation in the care of hospitalised children: a qualitative study

BACKGROUND: The introduction of unrestricted visiting hours has led to the encouragement of parents to stay with and participate in the care of their hospitalised child. In order to stay with the hospitalised child, parents have to be away from home or work, which in turn impacts on their personal and family life. However, no published study on parents' experiences of childcare participation during paediatric hospitalisation has been found for a Chinese population. OBJECTIVES: This study explored Chinese parents' experiences of their participation in taking care of their hospitalised child. DESIGN: A qualitative exploratory design was adopted to capture parents' experiences of participation. SETTINGS: The study was conducted in four paediatric wards of a regional acute general hospital in the New Territories, a major geographical region of Hong Kong. PARTICIPANTS: Nineteen parents (16 mothers and three fathers) who had a child hospitalised for more than 48 h and identified themselves as staying comparatively longer with the child than their counterpart were recruited. METHODS: Data were collection by tape-recorded semi-structured interview. RESULTS: Four major categories that illustrated parents' experiences of participation in childcare were identified: reasons for staying with the child, rescheduling of family's routine, expectations of nurses, and comments on facility provisions. The findings highlight parents' desire for participation in caring for their hospitalised child, their unexpressed needs for communication and concern about the non-monetary costs of participation. CONCLUSIONS: Most parents viewed accompanying their hospitalised child as an unconditional aspect of being a parent and had a strong desire for participation. Parents' need for communication and emotional support during their participation of childcare in paediatric unit are universal. As Chinese parents are passive in seeking help, nurses should take the initiative in assessing their needs and offering them support accordingly.     

Factors influencing return to work experienced by people with acquired brain injury: a qualitative research study

Purpose.?To describe the factors experienced by adults with moderate-to-severe acquired brain injury (ABI) as either limiting or facilitating during the process of return to work (RTW) in order to give an advice about the vocational rehabilitation process.

Methods.?A qualitative study was performed. Twelve adults who were working before acquiring traumatic or non-traumatic brain injury (2–3 years earlier) participated. The experiences were gathered by semi-structured interviews. The International Classification of Functioning, Disability and Health was used as a theoretical framework for the interviews and the analysis.

Results.?The most common limiting factor was tiredness. The most common facilitating factors were the will to RTW, the ongoing recovery and the knowledge and support of the employer, colleagues, occupational physician and occupational specialist.

Conclusions.?Different aspects were experienced as being important during the process of RTW after ABI. These aspects should be kept in mind during the process of RTW to make the outcome as successful as possible. It is advised to pay special attention to the recovery opportunities of an individual, to inform the employer, colleagues, occupation physician and the occupational specialist about ABI, and to support people with ABI for long time periods. An important role can be played by the rehabilitation centre.     

The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis

Johnson KL, Yorkston KM, Klasner ER, Kuehn CM, Johnson E, Amtmann D. The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis. Arch Phys Med Rehabil 2004;85:201-9.

Objective

To attain a better understanding of the benefits and barriers faced by persons with multiple sclerosis (MS) in the workplace.

Design

Qualitative research methodology comprising a series of semistructured interviews.

Setting

Community-based setting.

Participants

Fourteen women and 2 men with MS living in the community who were employed or recently employed at the time of interviews.

Interventions

Not applicable.

Main outcome measure

Accounts of personal experiences related to employment.

Results

Four themes emerged: the cost-benefit economy of working; fatigue and cognitive changes; stress in the workplace; and accommodations made to address barriers. Although participants valued work highly, they were also aware of the cost of being employed. The consequences of unemployment or changing jobs were considered negative and appeared stressful. For persons with MS, employment had both costs and significant benefits. Accommodations in the workplace and modifications of roles and responsibilities at home made it possible for individuals to continue working.

Conclusions

Health care providers must consider the complexity and timing of decisions by people with MS to continue or leave employment before recommending either action. Identifying critical periods of intervention to stabilize this cost-benefit balance is a critical next step for understanding issues of employment and MS.     

Carers' perspective on respite for persons with acquired brain injury

Persons with acquired brain injury require continuing care and support in various aspects of their lives. Although the care and support are predominantly provided by family members, little is known about the respite that these carers require to continue the care on a daily basis. This study aims to address the lack of data on respite care and people with acquired brain injury from the perspective of carers. Survey methodology was used to gather information from carers who were members of a peak brain injury association in New South Wales, Australia. The responses of 85 carers were analysed using logistic regression and frequency counts. The characteristics of carers were consistent with the research literature on respite and acquired brain injury, with carers being mainly female and there being a reliance on an informal network to assist in the care. Carers also reported that caring prevented them from obtaining gainful employment. Several factors were significantly associated with the use of respite, these were carers' single marital status; and the person with acquired brain injury's severity of disability, high level of dependency and number of days spent in coma. Carers also reported other factors that might influence them to use respite and they identified their expectations of respite. This study highlights carers' perspective on respite that is an under-researched area in acquired brain injury and reiterates ongoing need for respite.     

The cooling-suit: a study of ten multiple sclerosis patients' experiences in daily life

Approximately 60%-80% of all multiple sclerosis (MS) patients are heat sensitive. The aim of this study was to gain information on the effects of an assistive device, the cooling-suit, on MS-patients' self-care ability and also practical implications. A single-case approach was adopted in a quasi- experimental before-and-after study. The cooling-suit was used in their own homes by 10 individuals with diagnosed MS in different stages from relapsing-remitting to chronic progressive. Data collection procedures were self-assessment through a structured assessment-instrument, an open-ended interview before and after the intervention and a diary written during one week. The selected instrument, the MS Self-Care ADL Scale, has been developed for persons with MS and was translated into Swedish. The results showed increased self-care ability during and after use of the cooling-suit. However, different aspects of daily life activities were improved and to a varying extent. It is concluded that the study participants were supported and empowered in different activities of daily life such as walking and transfer and reduced voiding problems by using the cooling-suit. Some difficulties in handling the cooling-suit were also reported.     

Improvements of task performance in daily life after acquired brain injury using commonly available everyday technology

Purpose.?To investigate how individualised occupation-based interventions with commonly available everyday technology (ET) can compensate for perceived difficulties with daily life tasks after an aquired brain injury (ABI) and improve satisfaction with occupational performance.

Method.?This intervention study was designed as a multiple case study according to Yin. Ten men and women with an ABI (traumatic or non-traumatic) participated. Data were collected through interviews, observations and field notes before and after the intervention and at follow-up (on average 11 weeks afterwards). The interventions focused on enabling each participant's prioritised goals related to task performance in daily life.

Results.?All participants achieved all their goals by learning to use both new functions in their own familiar ET and new ET. The participant's perceived difficulties in occupational performance decreased and their satisfaction with occupational performance increased with the use of ET.

Conclusions.?An individualised intervention process, involving the use of own familiar ET or ET off-the-shelf, has the potential to compensate for perceived difficulties following an ABI and improve satisfaction with occupational performance in daily life.     

Stigmatization: experiences of persons with acquired immune deficiency syndrome

The purpose of this study was to understand the meaning that being stigmatized has for persons with Acquired Immune Deficiency Syndrome (AIDS). The research question for this investigation was, What is the perception of stigmatization as experienced by persons with AIDS? Phenomenology provided both the theoretical framework and the method for this study. The sample consisted of 10 homosexual men contacted through a New Orleans hospice, home health nurses, the investigator's own personal contacts, and referrals from men who were in the project. Participants were asked open-ended questions pertaining to changes in their relationships with others since diagnosis, changes in self-esteem, and examples of prejudice and discrimination. Interviews were audiotaped, transcribed verbatim, and analyzed using a qualitative approach. The phenomenon of stigmatization emerged as experiences of rejection and protection in social interactions.     

青光眼患者生活体验的质性研究

目的 通过青光眼患者的真实故事,了解青光眼时人们生活和健康的影响.方法 采用深度访谈法,收集13例个案的资料,应用现象学分析法进行分析.结果 青光眼患者的生活体验有正性和负性两个方面.正性体验表现为:接受现实、寻求信息、寻求精神支持、情绪控制能力增强及独立与自理;负性体验表现为:不确定感、放弃和挫败感.结论 青光眼患者的生活体验有其自身特点,医护人员可根据这一特点,激发其正性体验,帮助其应对负性体验.     

Informal caring in late life: a qualitative study of the experiences of older carers

AIM OF THE STUDY: This study examined the experiences of informal carers who were aged 75 years and over. BACKGROUND: It has been estimated that 13% of those aged over 65 years are providing some form of informal care. Although there is a substantial body of work reporting the experiences of informal carers, little attention has been paid to the specific situation faced by older carers. DESIGN AND METHODS: Potential study participants were identified during one round of annual over-75 health checks carried out in one large general practice. Data were collected through personal interviews, which were transcribed and analysed using a thematic approach. RESULTS: Fifty-eight carers were identified and 14 were approached to take part in the study. Of the 14 interviewees, 13 were caring for a spouse and one was caring for a sibling. There were 10 female and four male carers in the study (age range 76-92 years). Themes to emerge from the interviews were categorized under four headings: (1) the organizational demands and structure of the caring relationship, (2) informal support networks, (3) formal services and (4) the constancy of caring and the need for the role of carer to be recognized. CONCLUSIONS: The over-75 health check may provide a valuable tool to identify older carers who are not known to care providers. This paper concludes that nurses can take a lead role in working with this group in three ways. Firstly, in identifying older carers; secondly, in developing strategies to assist older carers in their caring role and finally, in responding swiftly to crises that can develop among this vulnerable group.