Illness experience and occupations of people with chronic fatigue syndrome

Chronic fatigue syndrome affects people's physical and cognitive capacities for participation in their occupations, but has received limited consideration by occupational therapists. This qualitative study explores the illness experiences and occupations of five people living with chronic fatigue syndrome. Narrative data were collected using the Occupational Performance History Interview-II (OPHI-II). Key aspects of participants' illness experiences, identified through thematic analysis, were: (i) experiencing and understanding chronic fatigue syndrome; (ii) experiencing different types of fatigue; (iii) 'an ending and a beginning'; (iv) experiencing doing activities; and (v) doing something towards getting well. These findings reveal participants' life stories, identities, relationships, and occupations had been dramatically altered. Their implication is that people living with this condition face issues, for which occupational therapy can be of assistance. The efficacy of interventions to enable them to adapt their occupations and rebuild their lives merits further research. The potential usefulness of OPHI-II for learning about how clients' occupations are altered by chronic illness in research and practice is illustrated.     

A model for occupation-based palliative care

This article presents a scoping review of 74 papers from the peer reviewed literature dealing with occupational therapy in palliative care. Five themes emerged regarding the parameters of occupational therapy in palliative care. The themes include: the importance of valued occupations even at the end of life, an exploration of how occupations change over the trajectory of a terminal illness, the balance between affirming life and preparing for death, valued occupations might be doing, being, becoming, or belonging occupations and the emphasis of a safe and supportive environment as an essential dimension for effective palliative care. These five themes are combined to form a model to guide occupational therapy in palliative care. The model offers structure and direction for occupational therapists in order to offer an opportunity for clients in palliative care to flourish toward the end of their lives.     

Practical strategies for working with indigenous people living in Queensland,Australia

Internationally, occupational therapists have recognized the need to provide culturally appropriate services for indigenous people. This study explored experiences, perspectives and practical strategies of occupational therapists working with Aboriginal and Torres Strait Islander people living in rural and remote areas of Queensland, Australia. Semi-structured interviews were conducted with eight occupational therapists who had at least 12 months' experience providing services to Aboriginal and Torres Strait Islander people in health, rehabilitation or education services. Key themes identified in the data focused on strategies for facilitating effective communication with individuals and families, and collaborating with other service providers. The role of Aboriginal Liaison Officers or Indigenous Health Workers was emphasized by participating therapists. Participants identified resources that they perceived as useful in their practice, such as cross-cultural training and access to indigenous health workers. Other resources suggested for further development included information about learning styles of indigenous people and information about cultural variations between specific Aboriginal and Torres Strait Islander communities. The small number of participants limits generalizability of the findings. However, therapists can decide on the relevance of strategies to their own workplaces. Suggestions for further research focused on improving occupational therapy services for indigenous people in Australia. These include an investigation of therapy goals with indigenous people, and interviews with indigenous Australians and indigenous health workers about their experiences and perceptions of occupational therapy.     

Enabling occupation in the 21st Century: Making good intentions a reality

Occupational therapists intend to collaborate with individuals, groups, agencies, and organizations in their search for meaningful occupations to promote health and justice. Since the 1997 publication of Enabling Occupation: An Occupational Therapy Perspective, Canada's latest guidelines on client-centred practice, the author has interwoven her ethnographic research in mental health services and client-centred practice to raise awareness of disjunctures between intentions and actual practice. Her 1999 Keynote Presentation at OT Australia's 20th National Conference in Canberra offers stories of George and Martha as allegories of the potential for enabling occupation in the 21st century. George presents a story of enabling occupation directly with people in need; Martha's story is about organizing services for enabling occupation. Through these stories, Dr Townsend calls occupational therapists to develop the language, organization and practice needed to make the profession's good intentions a reality in the 21st century.     

Exploring Occupation Roles of Hospice Family Caregivers from Māori,Chinese and Tongan Ethnic Backgrounds Living in New Zealand

A major challenge to occupational therapists working in palliative care is determining the best ways to help family caregivers who are caring for family members. The purpose of this study was to explore palliative caregiver occupations among Māori, Chinese and Tongan ethnicities. Six informants participated, one woman and one man from each ethnic group. In each of their homes, informants were asked to discuss what it was like caring for their dying family member. The occupational themes resulting from these interviews were food preparation, spirituality and family gathering. Therapists need to be aware of the differences in how people care for family members within their ethnicity. Implications are that occupational therapists can help families identify activities important to them within the main occupational themes: different types of foods and their preparations, various ways to express spirituality and how families gather together members of their extended family. Further, clinicians need to take on the role of a “not‐knowing” but curious health‐care provider in order to meet the needs of caregivers. The limitation was the small number of participants who all lived in one geographic area. Future studies should include a wider group of ethnicities. Copyright © 2014 John Wiley & Sons, Ltd.     

Japanese older adults' perspectives on resuming daily life during hospitalization and after returning home

Throughout Japan, occupational therapy for older adults is available in an increasing array of institutional and community settings. However, there is a need for more knowledge of "how" older adults resume their daily lives particularly in the community. The aim of this qualitative research was to identify and describe how some older adults in Japan describe their experiences of resuming daily life during hospitalization and after returning home. Nine older adults with various physical impairments were interviewed. The open interviews were conducted 10 months to 5 years from the onset of their physical impairment. Data analysis on the basis of a constant comparative methodology resulted in three themes that characterize their experiences of resuming daily life: "doing the right thing", "reconciling to dependence" and "becoming invigorated". These themes may inform occupational therapists to take into consideration older clients' perspectives when assisting them to recapture the quality of their daily life according to their preferences. Adaptive change is promoted by assisting older clients to generate the energy they need by judiciously varying approaches appropriate to their goals and by helping older clients to make decisions that are "right" for them, which may fluctuate during processes of resuming daily life. Limitations of this study are found in the small sample size, and additional research may help to clarify how moral aspects, vigour (physical and mental energy/force) and other dimensions shape processes of resuming daily life as well as the influences of time.     

Occupation and meaning in the lives of women with chronic pain

The aim of this study was to examine how women experience occupations as they live with chronic pain and more specifically to gain detailed knowledge regarding the meaning of important occupations in their life. The article is based on an analysis of 17 narratives based on an Occupational Performance History Interview. Participants were interviewed as part of their occupational therapy assessment at Orton Rehabilitation. The narratives were analysed in order to identify the experiences of doing occupations in everyday life. When interpreting their problems in and solution for doing occupations women in this study used four basic metaphors: (1) moving forward, (2) slowing down, (3) fighting and (4) standing still. The tone of the narratives varied from hopeful to hopeless and from fearful to frustrated. Each of these four types of narratives differed in: (a) the tone of the narrative, (b) the meaning ascribed to occupation, (c) how others are viewed in relation to one's doing, and (d) how the future is envisioned. The experience of occupation in the lives of women with chronic pain is heterogeneous and depends on the underlying meaning of the narrative used to experience and interpret occupational life.     

Occupation and meaning in the lives of women with chronic pain

The aim of this study was to examine how women experience occupations as they live with chronic pain and more specifically to gain detailed knowledge regarding the meaning of important occupations in their life. The article is based on an analysis of 17 narratives based on an Occupational Performance History Interview. Participants were interviewed as part of their occupational therapy assessment at Orton Rehabilitation. The narratives were analysed in order to identify the experiences of doing occupations in everyday life. When interpreting their problems in and solution for doing occupations women in this study used four basic metaphors: (1) moving forward, (2) slowing down, (3) fighting and (4) standing still. The tone of the narratives varied from hopeful to hopeless and from fearful to frustrated. Each of these four types of narratives differed in: (a) the tone of the narrative, (b) the meaning ascribed to occupation, (c) how others are viewed in relation to one's doing, and (d) how the future is envisioned. The experience of occupation in the lives of women with chronic pain is heterogeneous and depends on the underlying meaning of the narrative used to experience and interpret occupational life.     

The Road to Recovery: Experiences and Occupational Lives of Icelandic Women with Breast Cancer

ABSTRACT

The purpose of this qualitative study was to explore the experiences and occupational lives of Icelandic women with breast cancer. In all 18 women were interviewed using the Occupational Performance History Interview as a guide. The women employed different modes of interpreting and responding to the cancer event with occupational participation being the central vehicle to resist the illness. Adjustment to breast cancer survivorship was characterized by permanent changes in the women's lives with both positive and negative consequences. When working with women with breast cancer, occupational therapists should focus on their needs as occupational beings.     

Retirement: What will you do? A narrative inquiry of occupation‐based planning for retirement: Implications for practice

Aim:  To examine, using a retrospective narrative study, the factors influencing four older people's decision to plan for the activities they would undertake once retired, the planning process undertaken and their subsequent experience of retirement.
Method:  Semi-structured interviews were conducted to examine the factors influencing older people's decision to commence pre-retirement planning, the planning process undertaken and their experience of retirement. In keeping with narrative inquiry, paradigmatic-type narrative analysis led to the development of categories and subsequent themes to reveal the participants' experiences of these issues.
Results:  Three themes: environmental influences, the planning process and retirement experiences: the outcome of planning, were derived from the participants' narratives. Overall, retirement activities that were continued or initiated led to a positive experience even when these planned activities were temporarily interrupted or altered. Planning for future years in retirement and older age also continued.
Conclusion:  Occupational therapists have a unique understanding of the centrality of occupation to health and wellbeing. Thus occupational therapists are well-positioned to assist people identify, plan and engage in meaningful occupations outside work in retirement.     

'Doubly deprived': a post-death qualitative study of primary carers of people who died in Western Australia

This paper explores the daily experiences and occupational needs of family carers of people who were dying, with particular reference to their daily routines and ability to undertake other varied activities during the period of care. The impact of the caring experience on these occupations was then examined to determine how, and if, these occupational needs were addressed in the community using potential and available services. An exploratory approach using grounded theory was employed to examine these experiences. Participants were recruited from metropolitan (n = 10) and rural (n = 4) locations across Western Australia between February and June 2009, using a purposive sampling method. A semi‐structured interview guide was developed following consultation with the literature, expert opinion and piloting. Interviews were conducted in participants’ homes and questions were asked about their experiences as a carer including routines, engagement in usual activities and the impact of the caring role on their daily life during and after the period of care. Each interview was transcribed verbatim and analysed to determine potential themes. Two important themes were identified: (1) Carers experienced disengagement and deprivation from their usual occupations during and after the period of care; and (2) Participants described significant disempowerment in their role as carer. Carers are ‘doubly disadvantaged’ as a result of their caring role; they are unable to participate in their usual occupations and they are not recognised for their contributions as carers. Carers experienced disengagement and deprivation from their usual occupations, contributing to physical, psychological and emotional difficulties and this may result in long term consequences for health and well‐being. In addition, the current services and support available for carers in the community are deemed inadequate; placing further stress on a health care system which needs to cope with increasing demands as a result of the ageing population in Australia.     

A qualitative study of the experience of caring for a person with bulimia nervosa. Part 1: The emotional impact of caring

OBJECTIVE: Family carers of individuals with mental disorders have been found to experience mental health difficulties of their own. There has been little research into the impact of caring for individuals with eating disorders. A preliminary study found that carers of individuals with anorexia nervosa experience more difficulties and distress than carers of people with psychoses (Treasure et al., [2001]. Social Psychiatry and Psychiatric Epidemiology, 36, 343-347). This is the first study to qualitatively investigate the experiences of carers of individuals with bulimia nervosa (BN). METHOD: Twenty carers of individuals with BN were interviewed using a semistructured interview. Interviews were transcribed and the texts analyzed using content analysis to identify themes. RESULTS: The principal themes to emerge were the impact of the discovery of BN on the carer, the ongoing impact of care-giving, coping strategies used by the carer, and the positive impact of the illness for both the carers and the persons in their care. DISCUSSION: BN has a potent impact on carers' lives. This has implications in terms of service provision and future research in this area.     

Experiences and perceived roles of occupational therapists working with children with special learning needs during transition to school: A pilot study

Occupational therapists provide support to children with special learning needs and their families during the child's transition from early childhood to mainstream school. Little has been documented regarding the role and experiences of occupational therapists working with children, families and teachers during transition in an Australian context. Six paediatric occupational therapists from one geographical area in New South Wales were interviewed and asked to relay their role and experiences when providing a service to children with special learning needs during their transition to school. Participants described their role to include: preparing the child for school; working with school personnel; and providing parental support. Although participants described both positive and negative experiences, among the negative experiences were: limited time to provide a service; recommendations to school personnel not being followed; school personnel not being supportive; feeling uncomfortable in the classroom; and limited involvement in planning. Participants described a role which is consistent with current school-based occupational therapy practice; however, in the participants' experience, there was a gap between the ideal service and what participants were able to provide. This included limited collaboration with teachers.     

The potential role of occupational therapy in acute care with clients with HIV/AIDS

As medical interventions aimed at prolonging the lives of people with Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) are implemented, HIV/AIDS is evolving into a chronic disease with associated disability. People with HIV/AIDS can experience numerous occupational performance problems and occupational therapists need to examine and develop their role in helping to meet the needs of this population. Acute-care occupational therapists work with clients with HIV/AIDS who experience multiple admissions and who present with varying levels of occupational function. This paper outlines the potential role of occupational therapy in acute care with clients with HIV/AIDS using the Model of Occupational Performance (Canadian Association of Occupational Therapists, 1991) as a conceptual framework. The results of a retrospective chart review that investigated the role of two occupational therapists working with clients with HIV/AIDS in an acute-care setting are presented and compared with the potential role. Practice and research recommendations to address the discrepancies between the potential and present role are presented. Copyright © 1998 Whurr Publishers Ltd.     

Well-being and occupational rights: An imperative for critical occupational therapy

Abstract

Background: One of occupational therapy's core assumptions is that engagement in occupations influences well-being. Because occupational engagement is integral to human well-being, and because well-being is integral to human rights, this paper contends that the ability and opportunity to engage in occupations is an issue that concerns rights. Aims: To outline well-being and its centrality to human rights; to explore the relationships between well-being and occupation and between well-being and occupational rights; and to highlight the consequent imperative to engage in critical occupational therapy. Key issues: The World Federation of Occupational Therapists asserts that all people have the right to participate in a range of occupations that enable them to flourish, fulfil their potential, and experience satisfaction congruent with their culture and beliefs; and further asserts the human right to equitable access to participation in occupation. Conclusions: If occupational therapists are to take seriously their espoused commitment to enabling equitable access to participation in occupation, the inequitable conditions of people's lives will need to be addressed. Critical occupational therapy is a committed form of practice which acknowledges that well-being cannot be achieved solely by enhancing individuals' abilities, and that consequently endeavours also to address the conditions of people's lives.     

Surviving Domestic Violence: Rebuilding One's Life

The purpose of this study was to contribute to occupational therapists' understanding of the experience of domestic violence, its impact on the lives of women, and the needs of these women as they journey towards independent and abuse-free lives. A phenomenological design was used to explore the experiences of five women living at a battered women's shelter and five women who had been at the shelter and were now living on their own, free of abuse. Five themes emerged to describe the women's experiences of rebuilding their lives: (1) “You owe yourself a life,” (2) “It's really all about connecting the dots,” (3) “I don't have an ounce of time to myself,” (4) “It gets hard,” and (5) “That was the road I traveled but this is now the road that I'm on.” The experiences of these women compel the occupational therapists to pause and reflect upon their role in working with survivor's of domestic violence.     

The Tree Theme Method as an intervention in psychosocial occupational therapy: Client acceptability and outcomes

Background/aim:  The Tree Theme Method (TTM) is an intervention in which the client paints trees representing certain periods in his/her life. The intervention comprises five sessions, using trees as a starting point to tell one's life story. This study, which is part of an implementation project, aimed to examine the therapeutic alliance and client satisfaction, in relation to perceptions of everyday occupations and health-related factors, with clients going through a TTM intervention.
Methods:  Nine occupational therapists recruited 35 clients, at general outpatient mental health care units, for the TTM intervention. Self-rating instruments, targeting therapeutic alliance (HAq-II), different aspects of daily occupations (Canadian Occupational Performance Measure, Satisfaction with Daily Occupations), health-related factors (Sense of Coherence measure, Mastery Scale, Symptom Checklist-90-R) and client satisfaction (Client Satisfaction Questionnaire), were administrated before and after the intervention.
Results:  A good initial therapeutic alliance, experienced by both therapists and clients, was correlated to increased changes regarding occupational performance and self-mastery. According to the therapists' ratings, a good initial therapeutic alliance was correlated to increased sense of coherence and a decreased level of psychiatric symptoms. The results showed positive significant changes in occupational performance and health-related factors. High ratings of the therapeutic alliance by the therapists were also related to high client satisfaction.
Conclusions:  The TTM seemed to function well in psychosocial occupational therapy, but there is a need for further implementation studies to deepen our understanding of the treatment process, comprising both technique and formation of the therapeutic alliance.     

Exploration of the occupations of people with schizophrenia

Background: Participation in occupations is a powerful determinant of wellbeing. This study focusses on obtaining a greater understanding of the occupational experiences of people with schizophrenia and the factors that facilitate or hinder occupational engagement. Sample: Six participants with schizophrenia living in an Australian urban community who were clients of an assertive outreach team formed the sample. Methods: Data gathered via semi‐structured interviews and observation were thematically analysed. Results: The findings are reported in three main themes: struggling to survive in the present, enabling and constraining factors in the living environment and the importance and value of work. Conclusions: These findings provide further evidence for occupational therapists working with consumers of mental health services to adopt practices that enable self‐determination of participation in occupations, increase supports and resources within the community environment and expand opportunities for work.     

Patients' experience of groups in outpatient mental health services and its significance for daily occupations

The prevalence of mental health problems such as depression and anxiety in the Swedish population is increasing and individuals’ daily occupations are seriously affected. Occupational therapy groups have long been used in mental health services. Now, with the increase in the number of outpatients and the current principle of patients' participation there is a need for further knowledge of this group of patients' perspective on the method. The aim of this study was thus to explore how outpatients in mental health services experience treatment in occupational therapy groups and what significance the treatment has for daily occupations. The focus group method was used. Four groups, with a total of 14 participants, were formed and met on one occasion. A number of factors for positive change in occupational therapy groups were found, i.e. “timing”, “belonging”, “involvement”, “challenge”, “meaningful occupation”, and “balanced focus on disease”. The participants’ active use of the treatment and the transfer of experiences and knowledge from treatment to daily life were important for success. The abilities “to manage” and “to dare” developed in occupational therapy groups helped participants in the process of making changes in daily occupations. The findings show how a traditional method in occupational therapy in mental health services can be used to meet current needs and principles.