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The Presenting Symptoms Associated With Arachnoiditis And The Experience Of Living With Them In Everyday Life A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing at Massey University by Christine Hopkins - 1998 Chapter Four: Research MethodologyIntroductionChapter One introduced the aims and objectives of the study, discussed the background to the research and briefly introduced the participants. Chapter Two provided information on arachnoiditis. Chapter Three introduced the theoretical framework for the study. Chapter Four provides the rationale for the choice of an exploratory descriptive methodology, briefly revisits the research context in relation to the background to the study and sets out the processes of the research, including ethical considerations, access to participants, care of the research data and data analysis. The aims of exploratory descriptive research Nursing research which seeks to enhance nursing practice needs to be science based and to use substantive nursing knowledge developed through logical analysis and quantitative and qualitative modes of inquiry (Barrett, 1990). When undertaken to shed light on an area about which nursing has little theoretical or factual knowledge, an exploratory descriptive methodology is appropriate (Abdellah & Levine, 1965). Such a qualitative approach, in which the researcher can use intuition and insight to explore what is there, meanings attached to the discoveries, and how these can be organised (Cormack, 1991), provides an avenue for exploring patterning by elucidating the characteristics of an experience from the participants themselves (Malinski, 1991b). Exploratory descriptive studies are never a final product (Abdellah & Levine, 1965), simply a first step from which further research can branch out to look at particular aspects of the situation, refine initial knowledge or look at the effectiveness of the various therapeutic modalities used in nursing practice. Exploratory descriptive research and a Rogerian framework Research designs that generate descriptive knowledge are seen as relevant to studies based in a Rogerian framework (Cowling, 1986). This methodology provides a qualitative methodology that allows for exploration of events from a nursing perspective by seeking descriptions of those experiences through interviews with the participants (Malinski, 1991b). Reflecting the unitary nature of the researcher, the participants and the environment, self-reported perceptions and other expressions of experiences revealed to an investigator in a research situation are seen as providing nurses with critical links to an individual’s unitary pattern (Cowling, 1990). The descriptions revealed within a Rogerian framework uncover features of emerging patterns. Knowledge of these patterns can then be used to develop therapeutic strategies to facilitate the negentropic possibilities of a situation in ways that enhance individual well-being (ibid). This combination of a Rogerian theoretical framework and qualitative descriptive methodology is seen by the researcher as particularly suited to a study of the symptoms and experiences related to arachnoiditis, both because so little was known about arachnoiditis from a nursing perspective, and because the literature provided a very discouraging, entropic prognosis for those with symptomatic arachnoiditis. This study looked at the symptoms ‘associated’ with arachnoiditis, not at the symptoms ‘of’ arachnoiditis. The distinction was considered necessary by the researcher for two reasons. Firstly, there was an awareness of the difficulties some potential participants may have had in accessing radiological tests, particularly MRI’s, to confirm a diagnosis of arachnoiditis. There was a possibility that very few people in the proposed study region would have a radiologically confirmed diagnosis, thus limiting the number of potential participants. Secondly, the researcher believed that such a limitation was not relevant to a nursing study in which the person, rather than the disease, was the focus. Experiencing symptoms of such a nature that the person had come to believe they had arachnoiditis, and had become a member of ASAMS because of that belief, were therefore considered valid criteria for entry to the study. The research proposal was shared with the ASAMS committee members, who endorsed the research aims of exploring and describing the symptoms and the experiences associated with life with arachnoiditis. They hoped the study would ultimately assist in meeting one ASAMS’ aims, namely, the enhancement of professional health services’ knowledge of possibilities for those with symptomatic arachnoiditis. This sharing of the aims of the research was felt to be important by the researcher because of her belief that, just as people do not exist independently of their environment, there was an artificiality in considering the research as if it was somehow independent of the lives and dreams of those experiencing what it explored. This belief, reflecting as it does the principle of integrality, is believed to be particularly relevant in the case of this research, because the suggestion that it take place on this topic initially came from those with arachnoiditis. Criteria for entry to the study were membership of ASAMS, and either a confirmed clinical or MRI diagnosis of arachnoiditis or the belief on the part of the potential participants that they have arachnoiditis. While this created the possibility that some of the participants might have a spinal condition other than arachnoiditis, the researcher believed this would enhance rather than invalidate the study by allowing description of any experiences that had led such participants to believe they might have arachnoiditis. People who have, or believe themselves to have, arachnoiditis live throughout New Zealand. WDRC had a list of addresses to which the researcher had access in her role as coordinator for enquiries about arachnoiditis, but no mandate to allow its use for the purposes of research. ASAMS had their own separate membership, which had evolved out of, but was separate from, those who had contacted WDRC. Seeking participants from among this group ensured no potential participants felt pressured in any way to take part, because the invitations to participate, and the collection of responses, was handled by an independent third party. Only the list of those who agreed to participate was passed on to the researcher. The national secretary for ASAMS was approached and, after consultation with the ASAMS management committee, agreed to address supplied invitations to participate, and to receive and collate responses. The ASAMS members, living within the region for which Ethics Committee approval had been obtained, received an open invitation to take part in the study (Appendix Three). It was intended that a convenience sample of the first twelve respondents would be chosen. Fourteen responses were received, of whom three expressed regrets to the ASAMS secretary that, although they wished to participate, their health was so bad at that particular time that they felt they could not take part. The final sample thus consisted of eleven participants. The eleven who accepted the initial written invitation to participate were contacted by telephone by the researcher to arrange a meeting to further discuss the aims of the study. At that meeting, confirmation was gained that they wished to continue as participants, and consent forms (Appendix Four) were supplied. Informed consent, in a three step process consisting of discussion between participant and researcher, reading of the information sheet, and signing of the consent form, was obtained. All participants wished to proceed straight on with the first interview after signing, rather than rescheduling another time. Study approval was granted by the Massey University Human Ethics Committee and the Ethics Committee in the region from which the participants were to be drawn. Because of the small pool of potential participants and the possibility that they might know each other personally, identifying data, such as occupation and age, has either been removed or the context blurred, so as to protect individual identities. Some data concerning highly personal aspects of life with arachnoiditis have been reduced to a summation, genderless where possible, to further protect identities. Because informed consent is a process (Johnstone, 1989), the right to turn off of the tape at any point during interview, and participants’ rights to disallow the use of certain pieces of data, were discussed both prior to signing the consent form and during interview when particularly personal issues, such as impotency and incontinence, arose. Throughout the interviews, participants continued to affirm their willingness for their symptoms and experiences, as told to the researcher, to be used in the study. They had no concerns about data identifying them personally and would have been happy to have their own names used. Participants frequently mentioned health professionals by name, or locations by which health professionals might potentially be identified. To protect their anonymity, these names and locations have been replaced or omitted, and specialities retained only if it was felt there was sufficient protection of the identity of the professional concerned. Interview tapes, transcripts and data were coded by pseudonym. Consent forms and identification code were kept in a locked place separate from the tapes and transcripts. The researcher transcribed the tapes personally. Participants were given the option of having their interview tapes returned to them or wiped on completion of the study. For participants who might have felt the need for further discussion concerning personal issues raised at interview, support was available through the field worker of the Multiple Sclerosis Society and participants were supplied with her phone number. Participants were also supplied with the researcher’s and the research supervisor’s contact number and contact address and the number of the regional Advocacy Service, as required by the 1996 Health and Disability Commissioner (Code of Health and Disability Services Consumers’ Rights) Regulations (Health and Disability Code). Symptoms and experiences were sought by means of audio-taped, face-to-face, semistructured interviews with the participants, using guide questions. Semi-structured interviews were selected as the research tool that would enable as wide a possible exploration of the symptoms and experiences participants linked to life with arachnoiditis. Interviews were held in the participants’ homes, with the exception of one participant who elected to come to the researcher’s home. Initially, it was anticipated that two, one-hour interviews would be required for each participant, so as to allow for rest and/or movement for those who found it difficult to remain in one place for long. In practice, some participants were able to say what they wanted to say about their symptoms and experiences in one interview. No participants formally withdrew from the study but two second interviews were not completed because of the ill-health of the participants. However, due to the integral nature of the information sought, many of the areas covered by guide questions at second interview had already been partly described in the first interview, so this was not felt to have seriously affected the study. Face-to-face interviews were selected as the data collection method that would elicit the richest and most diverse data. These interviews were semi-structured, with open-ended guide questions (Appendix Five), leaving it to the participants to decide which of their symptoms they considered were related to arachnoiditis. There was an awareness that participants might have co-existing medical conditions, such as asthma and diabetes. These conditions could have other symptoms that also reflected in participants’ life experiences. The chosen guide questions created the possibility that some symptoms linked in the literature with arachnoiditis might not be discussed because the participant did not link them to arachnoiditis, while others more likely to be medically linked to co-existing medical conditions might be associated in the participant’s mind with arachnoiditis. No attempt was made at interview to validate or invalidate any of the symptoms presented as those of arachnoiditis. The interview questions were centred around two aspects of the human field. The first interview focused primarily on the human field (the participant) and manifestations of pattern within that field (symptoms). The response to the inquiry as to what the word ‘symptom’ meant to participants was analysed. Human field patterns were explored by reading the transcripts and collating a list of symptoms given by participants as those they associated with arachnoiditis. A compilation of the descriptions of each participant’s experiences of these symptoms was then prepared for each of the symptom categories and a brief description of the known pathophysiological reasons for that symptom was given. Symptom experiences were of two kinds, physical manifestations of pattern, such as pain in a limb, or unitary manifestations of the whole person, such as falling or depression. Participants’ responses to the ways their symptoms had altered over time, and how they expected them to alter in future, were described. In each instance, constant reflection of physical manifestations of pattern as integral with the unitary whole was maintained by using the individual participant’s words as much as possible. Consideration was then given to human and environmental field patterns, reflected as the experience of living with those symptoms. Exploration of these experiences centred around some of the problems or difficulties participants have had in living with their symptoms and how having these symptoms has affected their family and married life, friendships, work life and spiritual life. Each participant was asked what they saw as the personal strengths that helped them to live with their symptoms and to consider, through the use of a verbal rating scale, how they felt at their best and their worst. Like experiences were collated, again using transcriptions of individual participant’s words as much as possible. Participants were originally asked to identify the five symptoms that caused them the most difficulty. However, at interview they were not able to separate out their symptoms in this way, either by number or by difficulty, instead reflecting the unitary nature of human beings by seeing their symptoms as integrated experiences. |
