Functional outcome in patients with critical illness polyneuropathy

Purpose: To evaluate the functional outcome of intensive care patients with critical illness polyneuropathy (CIP), 6 and 12 months after the onset.

Methods: Design: A prospective observational cohort study and a cross-sectional study.

Setting: University hospital in the Netherlands.

Patients: Eight consecutive intensive care patients with CIP for the prospective study and eight patients diagnosed with CIP in the past 6 months for the cross-sectional study.

Main outcome measures: Functional outcome regarding body functions and structure, activities, participation and perceived quality of life.

Results: Nine patients (56%) died within one year. Functional outcome, participation and subjective health status in survivors varied widely at 6 and 12 months. After 12 months, physical functioning was improved in all patients. However activities related to mobility outdoors, autonomy, participation and quality of life were restricted in most patients.

Conclusions: The majority of survivors have persistent functional disabilities in activities, reduced quality of life and restrictions in autonomy and participation one year after the onset of CIP. Prolonged rehabilitation treatment is necessary for an increasing number of intensive care patients who develop CIP, in order to reduce handicaps and achieve optimal autonomy and social participation.     

Healing care? Rehabilitation of female immigrant patients with chronic pain from a family perspective

Purpose. This pilot study aimed to address the social context of rehabilitation by exploring the perspectives of family members regarding rehabilitation of female immigrant patients with a chronic pain condition.

Method. In-depth semi-structured, face-to-face interviews were conducted with family members of nine patients. The interviews were transcribed and subsequently coded and analysed according to themes.

Results. All participants acknowledged that their respective relative experiences pain. Pain is considered a symptom of the malfunctioning body and different explanatory notions are given. Participants regarded medication, warmth, rest or gentle exercise to be appropriate treatment options. Most participants had limited awareness of, and involvement in, rehabilitation. The role of family members in illness management lies mainly in providing advice and in taking over or assisting in domestic activities.

Conclusion. The importance of considering the patient's social context and involving family in the treatment process is indicated in the literature. However, awareness of the aim and content of rehabilitation was limited among most participating family members as was their involvement in the rehabilitation process of their relative. It is recommended that further research needs to look at factors influencing involvement of family members before effective strategies for involving family members of patients of various socio-economic and/or cultural backgrounds can be developed.     

How do people with COPD or diabetes type 2 experience autonomy? An exploratory study

Purpose. To develop an empirically grounded conceptualization of personal autonomy in the context of chronic physical illness and to investigate the impact of two chronic illnesses on autonomy.

Method. Grounded theory study consisting of 13 in-depth interviews with older adults with Chronic Obstructive Pulmonary Disease (COPD) or diabetes mellitus type 2 (diabetes).

Results. The results indicate that autonomy involves taking account of current circumstances as the frame of reference in which people can arrange their lives. Chronic illness disturbed autonomy by limiting opportunities and by prompting a reappraisal of the value that people placed on different activities or aspects of life. The participants responded to this disturbance differently, in ways that did not always restore autonomy. Limited opportunities occurred more often with COPD, while reappraisal occurred more often with diabetes.

Conclusions. Personal autonomy in the context of chronic physical illness might be conceptualized as correspondence between the way people's lives are actually arranged and the way people want their lives to be arranged, considering the circumstances. Health professionals could stimulate their clients to prevent and overcome impasses in the realisation of autonomy, while broad self-management interventions might improve people's skills for coping with the impact of chronic illness on autonomy.     

Religious views of the 'medical' rehabilitation model: a pilot qualitative study

Purpose: To explore the religious beliefs that patients may bring to the rehabilitation process, and the hypothesis that these beliefs may diverge from the medical model of rehabilitation.

Methods: Qualitative semi-structured interviews with representatives of six major religions—Islam, Buddhism, Christianity, Judaism, Sikhism, and Hinduism. Representatives were either health care professionals or religious leaders, all with an interest in how their religion approached health issues.

Results: There were three recurrent themes in the interviews: religious explanations for injury and illness; beliefs about recovery; religious duties of care towards family members. The Buddhist, Sikh, and Hindu interviewees described beliefs about karma—unfortunate events happening due to a person's former deeds. Fatalistic ideas, involving God having control over an individual's recovery, were expressed by the Muslim, Jewish, and Christian interviewees. All interviewees expressed the fundamental importance of a family's religious duty of care towards ill or injured relatives, and all expressed some views that were compatible with the medical model of rehabilitation.

Conclusions: Religious beliefs may both diverge from and resonate with the medical rehabilitation model. Understanding these beliefs may be valuable in facilitating the rehabilitation of diverse religious groups.     

Work and recreational changes among people with neurological illness and their caregivers

Background. Progressive neurological illnesses alter the health and well-being of people who experience them, and frequently lead to changes in the activities of both patients and their carers.

Purpose. The current study investigated changes in work and recreational activities among people with four of these illnesses.

Method. In total, the following numbers of people with neurological illnesses and their carers participated in the study: 28 with multiple sclerosis; 27 with motor neurone disease; 31 with Parkinson's; and 24 with Huntingtons disease. In addition, 28 professionals who worked with these populations participated in the study. Individual interviews were conducted with each of the above respondents to determine the impact of the neurological illness.

Results. The results demonstrated a high level of agreement from each of the participants. Most of the people with the illnesses and many of the carers had reduced their level of paid work. Generally, all groups of respondents perceived these changes as being negative. Changes in recreational activities were also seen to be primarily negative.

Conclusions. These results are discussed in terms of proposed prevention and intervention programmes to prepare patients and their carers for the changes that result from the neurological illness, strategies to stay at work longer and to help them develop alternative strategies to assist them in filling the gap left in their lives that was previously occupied by paid work.     

What can we learn from the personal insights of individuals living and coping with multiple sclerosis?

Purpose. The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life.

Methods. Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions.

Results. Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed.

Conclusion. The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.     

Women on sickness absence--views of possibilities and obstacles for returning to work. A focus group study

Purpose: The aim was to learn how women on sickness absence due to work related strain perceive and describe their possibilities and obstacles for returning to work.

Method: The focus group method was used. Five groups were conducted and each group met at one occasion. Twenty women participated in total.

Results: Three different themes were found. In 'The process of losing control' the participants describe the process from controlling every day living, to total loss of control of private and working life. The second theme, 'Not finding alternatives', deals with the difficulties of finding an alternative way back to work. 'Mastering life as a whole' contains strategies for regaining control over daily activities and life as a whole. The results show that personal as well as environmental factors have an impact for returning to work.

Conclusions: In this study we have received an understanding of the complex situation of being on sickness absence due to work related strain. We have learned the importance of recognizing the context of the individual and understanding the interplay between the person and the environment. As professionals in rehabilitation we can use this knowledge to create a rehabilitation programme supporting people back to work.     

Creative to the end…and beyond

A well-known children's book author discovers that he is dying and, finding it difficult to talk about his experience, chooses to use his storybook character to help express his innermost feelings about this crisis in his life.

In this article, I present a perspectiue on life and death as seen through the eyes of Little Toot, a popular character in the world of children's literature. Little Toot is the frolicking, adventureous tugboat whose travels on the waterways of the world hue captured the imaginations of children and their parents for three generations. More than an inanimate figure, he is the voice of his author and illutrator, commenting on life as it is and as he wishes it would be.

Hardie Gramatky was in the midst of creating a sequel to Little Toot entitled Little Toot and the Loch Ness Monster when he was diagnosed with inoperable abdominal cancer. Throughout his illness, he continued to work on the drawings, and shortly before his death the story line took final shape in his mind. By then, writing was physically difficult for him, so he dictated what was, in retrospect, a gut reaction to the dying process. The story, rich in symbolism, bears eloquent witness to the end of one person's life.

And the product of this creativity lives on. The story was published and appeared in animation on Shelley Duvall's TV program “Bedtime Stories.” This article affirms the theory that meaningful communication is not limited to erbalization and stads as vivd testinmony thal creativity is not diminished by the dying process.     

A community model of group rehabilitation for older patients with chronic heart failure: a pilot study

Purpose. The aim of this study was to develop and evaluate a community-based programme for heart failure patients, with emphasis on exercise and education.

Method. In a before-and-after trial, subjects with heart failure underwent a 12-week group programme comprising of exercise, education and mutual support. Outcome measures included subjects' compliance and views of the programme, knowledge related to disease management, physical parameters (symptoms, exercise tolerance, muscle strength) and psychosocial well-being (using generic and disease-specific tools). A focus group was held and participants' feedback noted.

Results. Overall patient compliance and satisfaction rate was high. Significant changes were observed in knowledge, physical performance and psychosocial parameters. Subjects' feedback following the programme was generally positive.

Conclusions. This pilot study shows that a group programme for heart failure patients is feasible, acceptable and improved physical status and quality of life. It can be a useful model in the management of chronic disease in the community.     

Consequences of stroke, arthritis and chronic pain--are there important similarities?

Purpose: This study aimed to explore the applicability of a previously derived model of what mattered most to people with arthritis across a number of different disabling conditions.

Method: A qualitative study using interviews with 30 participants from three out-patient groups (rheumatoid arthritis, stroke and chronic pain) was conducted. Participants were asked to identify and discuss the most important consequences of living with their condition. Narratives were explored for similarities and differences within and across conditions.

Results: While diagnostically related differences were clearly evident, particularly in categories within the Intrinsic, Extrinsic and Future Issues themes, a marked level of similarity in view was apparent in two themes, Taking Charge and Perceptions of Normality.

Conclusions: The study identified a shared perspective about a number of issues, but also detailed where there were differences. We suggest explicit consideration of the themes highlighted in this research, and a deeper understanding of the inter-relatedness of seemingly separate issues will help health professionals and researchers re-think ways of working with people who have disabling conditions, and identify different factors to address in measuring the success of rehabilitation.     

'A constant struggle': successful strategies of women in work despite fibromyalgia

Purpose. This study aimed to explore, and obtain increased knowledge of, the strategies used by working women with fibromyalgia regarding control of pain, fatigue and other symptoms.

Method. Qualitative methods with an emergent design were used. The informants were women with fibromyalgia who had participated in rehabilitation 6-8 years earlier, and were still in work. Diaries, focus groups and individual interviews were used for data collection. Content analysis and grounded theory were used for the analyses.

Results. A model with three categories emerged. The core category 'constant struggle' contains eight sub-categories: enjoying life, taking care of oneself, positive thinking, setting limits, using pain as a guide, creative solutions, learning/being knowledgeable and 'walking a tightrope'. The category 'grieving process' was a prerequisite for managing the struggle and the category 'social support' contained what facilitated the struggle.

Conclusion. The informants fought a constant struggle against the symptoms and the consequences of their fibromyalgia. Their strategies were action-oriented and evinced a positive spirit. To have grieved and accepted their situation was a prerequisite for managing, and support from the family was a help in the struggle.     

'A lifestyle coat-hanger': a phenomenological study of the meanings of artwork for women coping with chronic illness and disability

Purpose: The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being.

Method: Thirty women were interviewed and five submitted written narratives. Interpretative phenomenological analysis was carried out.

Results: About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a 'lifestyle coat-hanger' organising numerous further roles and activities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before.

Conclusion: The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury.     

Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life

Purpose. Cognitive changes occur in over 50% of persons diagnosed with multiple sclerosis (MS). Although previous research has provided information of the nature and severity of cognitive changes among persons with MS, it has offered relatively limited insight on the impact of these changes on levels of functioning and disability. The purpose of this study was to explore the impact of cognitive changes on the lives of four individuals with MS with different life roles (worker, parent, retired older adult).

Method. Qualitative methodologies were used in the study and included multiple open-ended interviews with the study participants and the completion of Cognitive Experience Forms in between interviews. In addition, the Perceived Deficits Questionnaire and a demographics form were administered. Thematic analysis was used to analyse the study data.

Results. Participants described the types of cognitive changes they are experiencing and how these changes affect their ability to participate and engage in desired activities and maintain their primary roles. Participants also talked about how cognitive changes affect their quality of life.

Conclusions. This study points to the complexity of cognitive changes and highlight the importance of addressing these changes in rehabilitation.     

Understanding the complex interplay between tourism, disability and environmental contexts

Purpose. To explore and describe the complex issues and factors related to participation in tourism as perceived by people with disabilities in Hong Kong.

Method. Naturalistic inquiry using key informant interviews and focus groups with 86 people with disabilities. Interviews were transcribed, translated and coded to develop themes and relationships. Triangulation of three investigators from different backgrounds occurred.

Results. The Process of Becoming Travel Active emerged as a six-stage process, intricately related to the personal/disability context and the environmental/travel context. Personal and environmental factors contribute to the six-stage model explaining the complex interplay between tourism, disability and environmental context.

Conclusion. Understanding the complexity provides insight into ways to increase active participation in tourism. Health, tourism and disability sectors have a role to play in the development of accessible tourism.     

Experiences of a primary health care rehabilitation programme. A focus group study of persons with chronic pain

Purpose. The objective of the study was to describe participants' experiences of a rehabilitation programme for persons with chronic pain.

Method. A qualitative design with focus group methodology was used. The sample consisted of 24 individuals with chronic pain who were divided into six focus groups. The rehabilitation programme, which was led by an occupational therapist and a physiotherapist, took place at a healthcare centre and comprised 12 group sessions.

Results. The qualitative themes described the programme as a meaningful place to which to belong and as an encouraging environment. They also included a criticism of the format and content of the programme. The participants had, however, not reflected over their possibility of influencing parts of the programme, as they took for granted that it was predetermined. The themes furthermore described the participants' expectations of being regarded as sick, but also their valuing of their own contribution in taking responsibility for carrying out the programme and for having integrated the content and becoming aware of their limitations.

Conclusions. The participants' experiences of the design, content and format of the programme were positioned between two extremes: A passive and an active role; their own responsibility and that of the leaders; weakness and ego-strength; and commitment and lack of commitment.