- Title
- Lymphoedema self-management education: exploring perspectives from people with lymphoedema and lymphoedema therapists
- Creator
- Keir, Sally Anne
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2020
- Description
- Research Doctorate - Doctor of Philosophy (PhD)
- Description
- This thesis examines lymphoedema self-management education experiences of lymphoedema therapists and people living with lymphoedema to elucidate educational approaches to improve the current lack of competent lymphoedema self-management (LSM) uptake. Two novel approaches informed this thesis: framing LSM education from an educational rather than a behavioural theoretical perspective; and the first known usage within a lymphoedema population of the PAM-13®(Hibbard et al., 2005), a measure of patient activation. This thesis asks the questions: how is LSM education experienced by lymphoedema therapists and people with lymphoedema; what concordance is there between them in their understandings of lymphoedema, LSM and LSM education; what role might patient activation and clinician support for patient activation play in LSM education; and what are the perspectives held by therapists and people with lymphoedema on what helps and what hinders LSM learning. Chapter 1 introduces the reader to lymphoedema, its management and self-management, and the context of lymphoedema self-management education before outlining the rationale, objectives, and structure of the thesis. Chapter 2 examines the literature on LSM education but also broadens its examination to include literatures on patient-clinician relationships, autonomy, communication, patient-centred care, and challenges to learning from the perspective of information processing learning theory. The LSM education literature was embedded with behavioural change theory with a lack of educational theory perspectives, but did demonstrate that LSM learning and teaching takes place within the context of emotional burden. The literature review also highlighted the need for communication using plain language to enhance learning, and the need for patient-centred and deliberative patient–clinician relationships for enhanced learning engagement, with therapists having an ethical duty to ensure patient comprehension of LSM education . A pragmatic mixed model and mixed method design utilized quantitative and qualitative data from two online surveys, one for lymphoedema therapists and another for people with lymphoedema, for participants from Australasia. Descriptions of lymphoedema practice of therapists and LSM undertakings were elicited. Also, perceptions were sought of their LSM education experiences to reveal facilitatory or detrimental circumstances for the learning processes involved in the development of LSM understandings. Analysis included comparing findings within and between the two participant groups. There were several key findings. For therapists, LSM education is about teaching skills and knowledge so people will undertake LSM. However, people with lymphoedema describe learning LSM as taking place within an experience of burden as people cope emotionally and practically, adjusting their lives to accommodate the demands of living with symptoms of lymphoedema, accessing lymphoedema services and education, and undertaking LSM activities. Therapist descriptions of LSM education barely mentioned this burden or its implications for learning. Therapists and people with lymphoedema describe lymphoedema in terms of swelling caused by faulty lymphatics not draining the fluid adequately, but people with lymphoedema were more than twice as likely to include symptoms in their descriptions. Greater concordance occurred between therapists and people with lymphoedema in describing LSM as the responsibility of the patient, with therapists being responsible for determining LSM effectiveness by regular monitoring and measurements. However, in their descriptions of lymphoedema and LSM, therapists used more medicalized language, complex conceptualizations and metaphors with negative overtones, while descriptions from people with lymphoedema used fewer metaphors and simpler concepts with two or fewer conceptual depths of understanding, suggesting a lack of deep learning of LSM rationale. Patient activation as measured by PAM-13® was associated with several features: Greater patient activation was significantly associated with university education levels, and health, research and science professional backgrounds, in people with lymphoedema suggesting educational and health literacy components to patient activation; people within the lowest two patient activation levels were more likely to describe emotions of humiliation, shame, anxiety and fear for the future, and less likely to describe adjusting mindsets to cope with living with lymphoedema; people within the highest two patient activation levels were more likely to articulate the benefits of investing time and effort into learning about and learn how to do LSM; self-reported confidence in LSM was positively associated with patient activation; a positive association existed between patient activation and attending LSM education; patient activation was positively associated with self-reported symptom control and amount LSM undertaken. Further, binomial regression indicated that patient activation was predictive of 21% of symptom control variance, while the amount of LSM undertaken was not predictive of variance in self-reported symptom control. Findings also suggested LSM education could be facilitated by supportive patient-therapist relationships demonstrating patient-centredness and support for patient activation, with communication and teaching aligned with informational processing theory by educationally insightful therapists. While clinicians expressed support for patient activation in LSM, desired their patients to engage in learning, and expected them to take responsibility for LSM, that is to own it, learn it and do it, few therapists indicated an understanding of learning theory principles or their implications for processes involved in patient LSM education. Limitations of this study were that fewer therapists participated than desired, that the two population sets were unrelated except by being sourced from Australasia, and that data was obtained by self-report not backed by clinical confirmation. Future research could address some of these issues by exploring dyads of therapists and patients to examine language and conceptual complexities of understandings in educational exchanges, the use of diarized reports of LSM behaviours and collecting clinical objective measures to assess LSM outcomes. Implications for future lymphoedema self-management education include: encouraging therapists to view LSM education from an information learning theoretical perspective; enacting patient-centered educational interventions; avoiding medicalized language and applying health literacy principles; fostering deliberative patient–clinician relationships; measuring patient activation for stratification of interventions within systems and at individual interventions; and explicitly teaching emotional regulation, health literacy and patient activation strategies.
- Subject
- lymphoedema; self-management; patient activation; patient centered; information processing learning theory
- Identifier
- http://hdl.handle.net/1959.13/1418393
- Identifier
- uon:37343
- Rights
- Copyright 2020 Sally Anne Keir
- Language
- eng
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| Thumbnail | File | Description | Size | Format | |||
|---|---|---|---|---|---|---|---|
| View Details Download | ATTACHMENT01 | Thesis | 2 MB | Adobe Acrobat PDF | View Details Download | ||
| View Details Download | ATTACHMENT02 | Abstract | 474 KB | Adobe Acrobat PDF | View Details Download |