Tag: occupational therapy

Environmental Accommodations for University Students Affected by Myalgic encephalomyelitis/chronic Fatigue Syndrome (ME/CFS)

Abstract:

Background: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses. This situation is especially difficult for students with lesser-known, invisible diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex disease affecting up to 2.5 million Americans which often begins in late adolescence or young adulthood.

Objective: Educate occupational therapists (OTs) about ME/CFS and steps they can take to assist students

METHODS: This work is based on a review of the scientific literature and our collective professional/ personal experiences.

Results: ME/CFS’ effects on multiple organ systems combined with the unusual symptom of post-exertional malaise frequently and substantially decrease function. Currently, no effective disease-modifying treatments have been established. Nevertheless, OTs can help student maximize their participation in university life by identifying potential obstacles, formulating practical solutions and negotiating with their institutions to implement reasonable, environmental accommodations.

Conclusions: Through understanding this disease, being aware of possible support options, and recommending them as appropriate, OTs are in unique position to greatly improve these students’ lives.

Source: Chu L, Fuentes LR, Marshall OM, Mirin AA. Environmental accommodations for university students affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [published online ahead of print, 2020 Jun 16]. Work. 2020;10.3233/WOR-203176. doi:10.3233/WOR-203176 https://pubmed.ncbi.nlm.nih.gov/32568151/

‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common disabling illness in adolescents that may limit participation in daily life.

AIM: This study explored interactions between the illness experiences of adolescents with CFS/ME, their occupational lives and expectations for the future.

METHODS: Seven adolescents with CFS/ME were interviewed. The interviews were analyzed using thematic analysis.

RESULTS: Three themes were developed. ‘Being ruled by an unfamiliar and inexplicable body’, which illustrated that altered and strange bodies seemed to separate and disrupt the participants from their former occupational lives. ‘On the sideline of life with peers’, which demonstrated that the informants spent time at home, doing undemanding activities instead of participating in activities with peers. ‘A coherent connection between present and future life’, which was reflected by how the participants eventually accepted their situation and rebuilt a meaningful occupational life and value of self.

CONCLUSION: CFS/ME made the body unfamiliar and disconnected informants from participating in their usual daily occupations. A coherent interaction between body, occupational life and social self was achieved by taking their new body into account and adjusting their occupations accordingly. This practice enabled the participants to hope for a better future life.

Source: Njølstad BW, Mengshoel AM, Sveen U. ‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome. Scand J Occup Ther. 2018 Apr 1:1-10. doi: 10.1080/11038128.2018.1455895. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29607759

Development of a group-based self-management programme for individuals with chronic fatigue syndrome: a pilot study

Abstract:

OBJECTIVE: The aim of the study was to develop a group-based self-management programme for individuals with chronic fatigue syndrome (CFS) by using the participants’ experiences with the initial version of the programme, which intends to promote coping with the illness in a primary healthcare setting.

METHODS: An initial programme was developed, based on self-efficacy theory and the concepts of client-centred practice and empowerment. Subsequently, the programme was tested and further developed by drawing on the participants’ experiences with the programme. Focus-group interviews were applied. The interviews were analysed using thematic analysis.

RESULTS: The initial programme was found to be feasible, although several modifications regarding the content and practical organization of the programme were proposed.

CONCLUSION: In line with the participants’ experiences, the final self-management programme was developed, which includes short presentations of eight topics, exchange of experiences among participants, goal-setting, construction of action plans, and relaxation exercises, in addition to a meeting for relatives. The programme will be provided in eight biweekly sessions and be led by juxtaposed peer counsellors and occupational therapists. The effects of the final programme will be evaluated in a randomized controlled trial.

 

Source: Pinxsterhuis I, Hellum LL, Aannestad HH, Sveen U. Development of a group-based self-management programme for individuals with chronic fatigue syndrome: a pilot study. Scand J Occup Ther. 2015 Mar;22(2):117-25. doi: 10.3109/11038128.2014.985608. Epub 2015 Jan 12. https://www.ncbi.nlm.nih.gov/pubmed/25581161

 

Developing and evaluating community-based services through participatory action research: two case examples

Abstract:

Occupational therapy has a strong history of embracing concepts of client empowerment. However there is limited literature in the field on how to achieve empowerment, or on how to extend empowerment to the level of the community and social groups and services within it.

This article discusses how concepts and strategies of participatory action research, an extension of empowerment theory, can be used to inform service development and evaluation in occupational therapy. The participatory action research approach is illustrated using two case examples of participatory action research programs for persons with chronic fatigue syndrome and individuals with autoimmune deficiency syndrome (AIDS). A critical analysis of the application of this approach to research and practice is provided. Finally, the paper identifies key principles of participatory action research that can be used to guide occupational therapy services and empower both individuals and communities.

 

Source: Taylor RR, Braveman B, Hammel J. Developing and evaluating community-based services through participatory action research: two case examples. Am J Occup Ther. 2004 Jan-Feb;58(1):73-82. http://www.ncbi.nlm.nih.gov/pubmed/14763638

 

Chronic fatigue syndrome: is there a role for occupational therapy?

Abstract:

Chronic Fatigue Syndrome (CFS) continues to evolve as a disabling phenomenon characterized by debilitating fatigue and consequential components that limit the functional ability of persons afflicted with the disease. A composite review of the current literature addresses a brief history, etiology, legitimacy, incidence and prevalence, prognosis, diagnosis, impact, and treatment of CFS. The primary focus illustrates available treatment strategies that have been incorporated into occupational therapy practice. As a profession that has made contributions to populations with chronic disease and symptoms similar to those suffering from CFS, the use of effective methods should reinforce the need for occupational therapy intervention with this population.

 

Source: Rubal E, Iwanenko W. Chronic fatigue syndrome: is there a role for occupational therapy? Occup Ther Health Care. 2004;18(3):33-45. doi: 10.1080/J003v18n03_03. http://www.ncbi.nlm.nih.gov/pubmed/23927616

 

An occupational therapy approach to persons with chronic fatigue syndrome: part two, assessment and intervention

Abstract:

Chronic Fatigue Syndrome (CFS) is a highly disabling condition that significantly interferes with occupational life. Occupational therapy services are very relevant for this population. Yet, information about the assessment and treatment of CFS is almost absent from occupational therapy literature. As a result, few occupational therapists possess expertise in evaluating and providing therapy for this complex condition. This paper describes an approach to evaluating and providing services for individuals with CFS according to the Model of Human Occupation. This model offers an integrative means of understanding the synergistic and evolving relationships between motivation, values, roles, habits, functional capabilities, and the environment as they influence individuals with CFS, and it provides a framework for the types of changes required in these different domains during the rehabilitation process. A case study illustrates recommended assessment and intervention approaches.

 

Source: Taylor RR, Kielhofner GW. An occupational therapy approach to persons with chronic fatigue syndrome: part two, assessment and intervention. Occup Ther Health Care. 2003;17(2):63-87. doi: 10.1080/J003v17n02_05. http://www.ncbi.nlm.nih.gov/pubmed/23944638