Establishing rigour in qualitative research: the decision trail. 1993.
Explore the source record for details and available documents.
Aged↗
Biomedical subjects
Tina Koch
Publications and source records attributed to Tina Koch.
Issues in data generation using email group conversations for nursing research.
AIM: The purpose of this paper is to provide an overview of the issues we have confronted when generating and analysing dialogue data by using electronic mail. BACKGROUND: The decision to use email for our research arose from our developing understanding of some of the consequences of illness that people living with chronic illness confront in their lives. As researchers, we recognized the potential of the Internet for computer-mediated communication using email for communication between researchers and research participants. DISCUSSION: We consider the functional aspects of generating data by email, such as the software needed, and then explore the issues encountered during the research process including ethical considerations, fluctuating participation, participants' familiarity with using email, facilitating lurkers towards participation, establishing group norms, and the role of the facilitator. CONCLUSION: As a collaborative inquiry, email conversation allowed us to spend time with participants over 2 years to explore chronic illness experience. However the scope and viability of computer-mediated communication as a qualitative method of research remains relatively unexplored, hence this paper.
Attitude to Computers↗
Acceptance and denial: implications for people adapting to chronic illness: literature review.
AIM: This paper reports an exploration of the terms acceptance and denial by exploring the literature, with the aim of understanding the implications of using these concepts to categorize people's responses to living with chronic illness. BACKGROUND: People learning to live with a chronic illness or condition may be judged and labelled by others as being in denial, particularly when they do not adhere to prescribed treatment regimes. METHOD: A literature search for the period between 1989 and 2003 was conducted using the electronic databases Medline, CINAHL, PSYCArticles, Health Source Nursing/Academic Edition, Academic Search Elite and Sociological Abstracts. Key terms used were 'acceptance and denial' and variations of such themes as 'chronic illness', 'disability', 'adjustment', 'illness discourse', 'medical discourse', 'illness experience', 'labelling', 'self' and 'identity'. DISCUSSION: The theoretical background of the common constructs 'acceptance and denial' are discussed using the psychoanalytic theories of Freud and Kubler-Ross's work on death and dying. Healthcare professionals and lay people commonly refer to the terms acceptance and denial when describing a person's response to chronic illness. Those whose understanding of the illness experience relies on the acceptance-denial framework may not listen when people with chronic illness attempt to tell their own unique story of how they have experienced life with illness. Instead, their listening antennae may be focused on fitting aspects of the experience with stages of adjustment. When others use labels of acceptance and denial, people who are learning to live with a chronic illness may internalize these labels as reflections of the self. This may be most likely when the person using the label is perceived to have authority, such as a healthcare professional. The internalization of negative information associated with these labels may obstruct the reshaping of self-identity that is fundamental when making a transition to living well with chronic illness. CONCLUSION: Healthcare professionals are urged to challenge the stage model of adjustment as a way of understanding the response to illness and to listen instead to the stories people tell. They are encouraged to privilege the person's experience as the basis for developing a sensitive, client-focussed response that takes into account the wider social context of people's lives as well as the medical aspects.
Adaptation, Psychological↗
The experience of fatigue for adults living with HIV.
AIMS: The aim of this study was to go beyond objective clinical assessment and explore the experience of fatigue and self-care strategies with adults who live with HIV. RATIONALE: This study responded to a perceived lack of available evidence to inform the practice of service providers about ways fatigue impacts on the lives of people with HIV. Prior understandings of fatigue are derived from survey or instrument-based tools or studies that do not consider the complexities of the personal experience that in-depth interviews can elicit. The focus remains generally on description, measurement or management from a biomedical perspective. METHODS: A qualitative study using participatory action research methods was conducted during 2003 with 15 adults diagnosed with HIV who perceived fatigue was a problem in their lives. Data were collected by individual interviews, researcher's notes and two participatory action research groups. RESULTS: Thematic analysis of data demonstrated that fatigue remains silent and invisible to participant's families, friends and employers. Fatigue experienced by people living with HIV generally also met with a lack of acknowledgement and understanding from health professionals. People developed self-care strategies over many years of trial and error. RELEVANCE TO CLINICAL PRACTICE: People living with a HIV seek to be acknowledged that fatigue is a legitimate concern, not only by health care professionals, but also people with whom they live. It is imperative that nurses who work with people living with HIV-related fatigue consider the wider social aspects of the person's life as well as physical symptoms. Most importantly, there then needs to be a process of engagement and active listening to the individual's account of their experience of fatigue. Advocating that fatigue is a legitimate complaint to the person living with HIV as well as the wider public and professional community is imperative.
Activities of Daily Living↗
Adolescents with Type 1 Diabetes: transition between diabetes services.
AIM: The research aimed to develop a sustainable and coordinated approach to facilitating the transition between diabetes services for adolescents. The objectives were to: (1) involve key diabetes health delivery stakeholders in expressing their concerns and issues about current service delivery and ways to improve same, and (2) reveal from the perspective of the adolescents living with Type 1 Diabetes their experiences surrounding the process of transition. BACKGROUND: This paper presents research that sought to identify the major concerns and issues that stakeholders had about transition and to reveal the experience of transition for the adolescent with Type 1 Diabetes. Key representatives from seven public diabetes services in Adelaide, South Australia worked collaboratively to answer the objectives of this inquiry. Approach. Interview data were generated and analysed using a response focus framework provided by fourth generation evaluation research. In this study, the focus was on common concerns, claims and issues raised by health care professionals (n = 21) and adolescents (n = 10) aged between 15 and 18 years about transferring from children's to adult diabetes services. FINDINGS: Data revealed education and dietetic advice was reactive rather than proactive and that the paediatric model of care is philosophically and practically different to the adult model of diabetes care. Three phases of transition were identified: preparation, formal transition and evaluation. Our findings indicated that these stages of transition were not being fully implemented in health units. CONCLUSION: The project findings have set the scene to establish a multidisciplinary working party to work collaboratively across agencies to develop effective transition pathways. RELEVANCE TO CLINICAL PRACTICE: The role of diabetes nurse educators and dietitians in South Australia is under-used throughout the transition process. Diabetes nurse educators are in an ideal position to prepare, coordinate and evaluate transitional processes.
Adolescent↗
Lovestruck: women, romantic love and intimate partner violence.
Intimate Partner Violence remains a significant problem globally despite health promotion aimed at raising awareness. In particular, there is a current trend for many young women to view some abusive/violent behaviours as acceptable in their relationships. Intimate Partner Violence has serious implications for its short and long term impacts on the health of women and children. Health workers may find working with women a challenging and sometimes frustrating experience. A way forward is to develop clearer understandings of the complexities of Intimate Partner Violence and to better understand women's investments in romantic relationships. In this paper a secondary analysis of data from a narrative study of women's recovery from IPV relationships is presented in order to illustrate discourses that inform underpinnings of romantic relationships. Transcriptions of audio-taped interviews were analysed using a feminist post-structural approach in order to make visible the ways in which the women negotiated their identities in the discourses of femininity. A critical review of current literature was also undertaken to develop the construct of romantic love. Women revealed that cues for Intimate Partner Violence were present early in the relationship but were not recognised at the time. Two positions within the discourse of romantic love were identified that underpinned their desires to establish and invest in the relationship despite the presence of cues for Intimate Partner Violence. These were 'Desperate for a man' and interpreting jealousy as a sign of love. Romantic love may be desirable for the sharing of warmth, safety and protection, and yet can mask behaviours that are cues for domestic violence. Understanding the complex nature of the ways that women's desires are located in the discourse of romantic love has implications for all nurses working to prevent and reduce the incidence of Intimate Partner Violence.
Adult↗
A Delphi study of district nursing research priorities in Australia.
This study, using a Delphi approach, sought the opinion of a self-selected panel of 320 district nurses regarding research priorities for district nursing in Australia. Over three rounds of questionnaires, the 419 research clinical problem areas requiring research as suggested by the panel were each rated in importance by the panel and then ranked through analysis from high to low average rating scores, thereby, whittling down the list to the top 15% (68) research questions and to a final list of the top 10 research priorities overall. Research questions focusing on discharge planning are dominant in these top 10 priorities, with documentation issues the second most common focus. Other foci in the top 10 priorities are staffing, aged care, palliative care, and assessment. The organization-specific top 10 research priorities focus on wound care, funding, education, and communication issues. Additionally, the top 68 priorities, which are either finitely practice-based or contextual-issues research questions, were categorized into 20 themes. The results will hopefully lead to scarce human and financial resources being directed to practice-relevant research programs that will facilitate improved health for district nursing (primarily home-nursing) clients in Australia and elsewhere.
Australia↗
Core elements of programmatic research in nursing: a case study.
In this invited paper Tina Koch and Debbie Kralik present the establishment of a research program outside the precincts of a university and we ask Gary Rolfe to provide a commentary from the perspective of an academic. We argue that a dedicated research unit, with a clearly articulated philosophy and in response to research questions from clients, community and practitioners, provides the focus to drive the program. Although we have infrastructure from the RDNS Foundation, obtaining external funding to support our program is a central activity. Discernable outcomes of our collaborative inquiries are described as participants with whom we research narrate aspects of their experience, leading to enhancement of self agency and quality of life. We illustrate the reform potential as groups of research participants develop sustainable people networks. Most importantly, theoretical development is ongoing describing transition (ways in which people are able to take a chronic illness into their lives and move on) and better understanding on ways in which health care professionals can facilitate transition. Evidence based news letters are written in collaboration with practitioners, however we ponder about ways to further our research findings in practice. Gary Rolfe speculates about intermural or extramural research programs. He frames his response using Brand's criteria to research program decisions. In order of importance he asks: (1) will it be fun? (2) will we learn anything from it? (3) will it make the world a better place? (4) will it earn enough money to pay for the first three? Gary argues that one of the luxuries of working within the university sector as an academic is that he can occasionally ignore question four.
Adaptation, Psychological↗
Women's experiences of fatigue in chronic illness.
AIM: The aim of this paper is to add a qualitative dimension to the body of knowledge about fatigue by revealing the meaning given by women living with chronic illness to the experience of fatigue. BACKGROUND: Fatigue is a common symptom experienced by people who live with chronic illness. It pervades every aspect of life and may be experienced in physical, psychological, emotional or social dimensions. Management of fatigue relies heavily on the individual's ability to employ self-care actions. The invisibility of fatigue is recognized as one of the most frustrating aspects, which can lead to lack of understanding and misunderstanding by others. METHOD: We report the findings of data from research in progress (2003-2005). Data were generated via email group conversations between us and 30 women who live with long-term illness. FINDINGS: A recurring conversational thread has been women's experiences of fatigue when living with long-term illness. Although fatigue has been reported to be a major obstacle to maintaining usual daily activities and quality of life, few studies have explored this common symptom from the perspective of people themselves. Common themes found in the experience of fatigue as described by women are the meaning of fatigue, awareness as self-care, fatigue as invisible to others, seeking medical validation and accountability for self-care. CONCLUSION: It is vital for healthcare workers to give opportunities for women to talk about fatigue, validate their experiences and provide support with self-care. Healthcare workers are encouraged to challenge their own meanings and expectations surrounding a person's report of fatigue so that opportunities for therapeutic intervention can be facilitated.
Activities of Daily Living↗
The ethics of research using electronic mail discussion groups.
AIM: The aim of this paper is to identify and discuss the ethical considerations that have confronted and challenged the research team when researchers facilitate conversations using private electronic mail discussion lists. BACKGROUND: The use of electronic mail group conversations, as a collaborative data generation method, remains underdeveloped in nursing. Ethical challenges associated with this approach to data generation have only begun to be considered. As receipt of ethics approval for a study titled; 'Describing transition with people who live with chronic illness' we have been challenged by many ethical dilemmas, hence we believe it is timely to share the issues that have confronted the research team. These discussions are essential so we can understand the possibilities for research interaction, communication, and collaboration made possible by advanced information technologies. DISCUSSION: Our experiences in this study have increased our awareness for ongoing ethical discussions about privacy, confidentiality, consent, accountability and openness underpinning research with human participants when generating data using an electronic mail discussion group. We describe how we work at upholding these ethical principles focusing on informed consent, participant confidentiality and privacy, the participants as threats to themselves and one another, public-private confusion, employees with access, hackers and threats from the researchers. CONCLUSION: A variety of complex issues arise during cyberspace research that can make the application of traditional ethical standards troublesome. Communication in cyberspace alters the temporal, spatial and sensory components of human interaction, thereby challenging traditional ethical definitions and calling to question some basic assumptions about identity and ones right to keep aspects of it confidential. Nurse researchers are bound by human research ethics protocols; however, the nature of research by electronic mail generates moral issues as well as ethical concerns. Vigilance by researchers is required to ensure that data are viewed within the scope of the enabling ethics approval.
Confidentiality↗
Care for female survivors of child sexual abuse in emergency departments.
INTRODUCTION: The health impact of child sexual abuse (CSA) continues into adulthood with such problems as depression, self-harm, suicide attempts; stress related disorders and addictions implicated. Emergency nurses can facilitate early intervention and direct people to appropriate help if they recognise the CSA survivor's 'common story' described in this paper. METHODS: Findings come from an on-going participatory action research program with women survivors of CSA aiming to build personal capacity for women and organizational capacity for service providers. Data collected by 1:1 interviews and fortnightly group meetings are transcribed, analysed and fed back to the women (n11) and service providers (n25) for reflection and action. RESULTS: Recommendations include increasing staff awareness of impact of CSA; creating a culture of privacy and confidentiality that promotes safe disclosure; advocating sensitive responses; promoting client driven interactions/interventions that allow women to control potentially intrusive procedures; examining personal qualities of staff that assist client satisfaction; and provision of literature, web sites and referral protocols identifying professional support and self-help resources, etc. CONCLUSION: This paper presents practical responses generated by women survivors of CSA to improve emergency care and reduce return visits for this concealed and needy client group.
Adaptation, Psychological↗
Chronic illness self-management: taking action to create order.
BACKGROUND: This paper presents research that was framed by our early understandings about the ways that people incorporate the consequences of illness into their lives. The word 'transition' has been used to describe this process. We believed self-management to be central to the transition process but this assertion required further research, hence this paper. AIM: The research aimed at understanding the way in which people who lived with chronic illness constructed the notion of self-management. While the participants of this study were living with arthritis, the focus was on understanding the meaning of self-management rather than the experience of living with the symptoms of arthritis. APPROACH: Data were generated when nine people living with arthritis were invited to write an autobiography about their life and experiences of living with illness. Two telephone interviews were recorded with each participant and then the research group (researchers and participants) convened for a discussion meeting. FINDINGS: In contrast to health professionals who identify self-management as structured education, participants identified self-management as a process initiated to bring about order in their lives. Creating a sense of order, or self-management, had four key themes (i) Recognizing and monitoring the boundaries, (ii) Mobilizing the resources, (iii) Managing the shift in self-identity, (iv) Balancing, pacing, planning and prioritizing CONCLUSIONS: People learned about their responses to illness through daily life experiences and as a result of trial and error. They reconfigured their daily lives and reconstructed their self-identity by exploring their personal limitations or boundaries. Self-management of chronic illness has been considered as both structure and process, however it is the process of self-management that we contend is central to the experience of transition. RELEVANCE TO CLINICAL PRACTICE: Clinical nursing intervention for people with a long term illness may be enhanced when self-management is approached from a broad, contextual perspective and self-management processes are integrated into clinical practice. The challenge is for nurses to embrace processes in nursing practice that will facilitate interactions with clients without obstructing the diversity of perspectives, create an environment conducive to learning and engage individuals in identifying self-management strategies that have meaning in their lives.
Activities of Daily Living↗
Chronic illness self-management: locating the 'self'.
AIM: In this paper, we present the findings of a recent research project in which we explored self- management with older people who were diagnosed with asthma. BACKGROUND: Asthma self-management literature has focused on the need for the patient to 'adhere' to prescribed therapies, in particular the taking of medications, monitoring of respiratory function or recognizing and avoiding triggers. METHOD: Data were generated during a period of 9 months from three sources; in-depth interviews with 24 older participants, an open-ended questionnaire and two mixed-gender participatory action research groups. FINDINGS: Based on current literature, our previous research findings which have 'unpacked' what is 'self'-management, and data generated in this project, we propose that three asthma management models are in operation: Medical Model of Self-management, Collaborative Model of Self-management and Self-Agency Model of Self-management. Locating the 'self' in self-management means acknowledging that many people living with a chronic condition are already self-determining and their expertise should be acknowledged as such. CONCLUSION: Health care professionals can best facilitate people toward self-agency by embracing new understandings of self-management in long-term illness. This process is enhanced when the expertise a person brings to the management of their condition is given the respect it deserves. There needs to be a focus on providing people with the means to grow and learn in a participative relationship that cannot be fully realized with 'off the shelf' self-management solutions.
Aged↗
Constipation and the preached trio: diet, fluid intake, exercise.
A survey of 90 older community-dwelling people's constipation experience is reported in part. The focus is the participants' efforts to use diet, fluid intake and exercise as preventive strategies. Most feel that they have been preached to in this regard. However, constraints may prevent full adherence to the trio and although some have gained from diet adjustment, the majority is disillusioned about these strategies. Nurses should be aware that scientific and medical literature is discussing evidence that dietary fibre intake preventing constipation is not proven, that fluid intake does not necessarily determine stool bulk or speed colon transit time, and that there is no proven link between exercise levels and chronic constipation.
Aged↗
The salience of the body: transition in sexual self-identity for women living with multiple sclerosis.
AIM: The purpose of this paper is to outline understandings about the construction of sexuality and the impact of a changing body for women living with multiple sclerosis (MS). We suggest that the process of transition towards incorporating the experience of chronic illness into one's life is influenced by the (re)construction of self-identity. DESIGN AND METHODS: A participatory action process guided the research. The women joined the authors for five group sessions that totalled 15 hours of contact time. In addition, we offered women the opportunity for one-to-one interviews at home. Nine women volunteered to participate. This allowed us to gain additional in-depth data about individual experiences. The interpretive framework was guided by the self-identity literature. When reading the transcripts we questioned: What is going on here? What does this say about the construction of self? What does this say about the construction of identity? What influence does the body have in the construction of self-identity? Analysis was collaborative (with the women) and the resultant emerging construction of sexuality is shared in this paper. Data generated during one-to-one interviews are privileged and we include two accounts from women who live with MS. The women's stories focus on sexuality, however, within this sexual context, we observed shifts in self-identity which we contend may shape the illness transition experience. FINDINGS: The rationale for privileging only two accounts is to expand understanding of Ordinariness and Extraordinariness with particular focus on the salience of the body in the 'sexual' lives of the women. Self-identity was shaped by how they felt about themselves as sexual beings, how they experienced their body, how they felt about sexual activities and by the way others reacted to them. Importantly, we view the women's sense of self, identity and the relationship to the body and find that shifts in self identity shape the woman's transition towards Ordinariness. CONCLUSIONS: This exploration of illness experiences is a reminder that our bodies are vehicles for our sense of self and identity. Cultural, educational, social, religious and family contexts all impact on women's capacity to shape the consequences of illness and the choices available to them. Facilitating women towards an awareness of the choices available in order to sustain or reclaim self may in turn expedite transition towards Ordinariness so that illness may become a part of their life.
Adaptation, Psychological↗
Rapidly alternating COPP/ABV/IMEP is not superior to conventional alternating COPP/ABVD in combination with extended-field radiotherapy in intermediate-stage Hodgkin's lymphoma: final results of the German Hodgkin's Lymphoma Study Group Trial HD5.
PURPOSE: To investigate whether treatment results in intermediate-stage Hodgkin's lymphoma can be improved by rapid application of non-cross-resistant drugs, the 10-drug regimen cyclophosphamide, vincristine, procarbazine, and prednisone (COPP), doxorubicin, bleomycin, and vinblastine (ABV), and ifosfamide, methotrexate, etoposide, and prednisone (IMEP), repeated every 6 weeks, was compared with conventional alternating COPP/doxorubicin, bleomycin, vinblastine, and dacarbazine (ABVD) administered every 8 weeks. PATIENTS AND METHODS: From January 1988 to January 1993, 996 patients in stage I or II Hodgkin's lymphoma with at least one risk factor (massive mediastinal tumor, massive spleen involvement, extranodal disease, elevated ESR, or more than two lymph node areas involved) and all patients in stage IIIA Hodgkin's lymphoma were randomized to receive two cycles of COPP/ABVD or COPP/ABV/IMEP followed by extended-field radiotherapy. RESULTS: Both regimens produced similar rates for treatment responses (complete remission, 93% v 94%), freedom from treatment failure (80% v 79%), and overall survival (88% for both regimens) at a median follow-up time of 7 years. Most serious toxicities during chemotherapy were similar in both regimens. However, World Health Organization grade 3 and 4 leukocytopenia occurred significantly more frequently in the COPP/ABV/IMEP arm (53% v 44% of patients; P =.010). There were no differences in the number of serious infections and toxic deaths during therapy. The number of second malignancies was also the same in both arms (22 each). CONCLUSION: Alternating COPP/ABVD and rapid alternating COPP/ABV/IMEP in combination with extended-field radiotherapy are equally effective in intermediate-stage Hodgkin's lymphoma and produce excellent long-term treatment results.
Adolescent↗
Constructions of sexuality for women living with multiple sclerosis.
AIM: In this paper we reveal constructions of sexuality that were articulated by 12 women who participated in an inquiry, which aimed to understand the experiences of women who live with multiple sclerosis (MS). The aim of this paper is to consider constructions of sexuality when chronic illness such as MS intervenes. BACKGROUND: In previous studies women placed their sexuality on the agenda for discussion, claiming that their concerns had not previously been vocalized nor understood. DESIGN: This participatory inquiry was framed by the principles of 'look, think and act'. These principles are operationalized as looking at ourselves, reflecting and questioning aspects of our lives, and then taking action to resolve the issues identified. Twelve women aged between 30 and 60 years who lived with MS joined the three researchers for five group sessions. Each session lasted 3 hours. In addition, several women opted to be interviewed individually. In this paper we describe the way in which women have constructed and articulated their sexuality since acquiring MS. FINDINGS: Sexuality has multiple meanings that are shaped and influenced by life experiences. When MS intrudes in a woman's life, sexuality is reshaped against a foundation of previous sexual experiences and expectations. Constructions of sexuality encompassed physical sexual responses, perceptions of appearance and attractiveness to self and others, communication and relationships, self-image and self-esteem, and the sense of affirmation and acknowledgement that women experienced from others in their everyday lives. CONCLUSIONS: This paper reveals that sexuality was not privileged by women but was regarded as an ordinary part of life. Often sexual activity was placed on hold as other aspects of living with a chronic illness intervene, for instance an exacerbation of MS. Whilst this paper has a focus on constructions of sexuality, there is a close relationship to shifts in self and identity. Health professionals need to reject the myths and stereotypes surrounding disabled women and attempt to understand the possible impact of long-term illness on women's sexuality.
Adult↗
Enhancing lives through the development of a community-based participatory action research programme.
A community-based participatory action research (PAR) programme that has spanned 5 years is discussed in this article. A primary healthcare philosophy requires research in this practice setting and supports the way healthcare is ideally organized within an integrated team and supported by a community network that includes not only the healthcare workers and service providers but also the community as partners. The principles driving three PAR inquiries are described: the development of a model for prevention of workplace violence; working with clinicians towards improving wound management practice; and management of continence for community-dwelling women living with multiple sclerosis. Participatory action research is a potentially democratic process that is equitable and liberating as participants construct meaning in the process of group discussions. We conclude that the cyclical processes inherent in PAR promote reflection and reconstruction of experiences that can lead to the enhancement of people's lives, either at an individual or community level, or both.
Chronic Disease↗