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"It's like a mirror image of my illness": Exploring Patient Perceptions About Illness Using Health Mind Mapping-a Qualitative Study.

ABSTRACT: BACKGROUND:A patient's self-management of chronic disease is influenced in part by their explanatory model of illness (EMI) and daily lived experiences (DLE). Unfortunately, assessing patient's EMI and using this information to engage patients in chronic illness self-management continues to be a challenge. OBJECTIVE:"Health mind mapping" (HMM) is a novel process that captures a patient's EMI and DLE through the use of a graphic representation of ideas. We aimed to explore patient's experiences using HMM. DESIGN:Qualitative study utilizing semi-structured interviews. PARTICIPANTS:Adult patients with uncontrolled type 2 diabetes from a primary care clinic. APPROACH:A facilitator guided 20 participants through the process of developing a health mind map. Subsequently, each participant completed a semi-structured interview about their experience with the process and perceptions about how their maps could be used. The process and interviews were video and audio recorded. We conducted a content analysis of the maps and a thematic analysis, using an inductive approach, of the interview data. RESULTS:Participants explored a wide range of EMs and DLEs in their HMM process. Participants reported that the HMM process (1) helped to develop insight about self and illness; (2) was a catalyst for wanting to take actions to improve illness; and (3) represented an opportunity to actively share illness experiences. They reported potential uses of the map: (1) to communicate about their illness to others in their social network; (2) to communicate about their illness to providers; (3) to help others with diabetes manage their illness; and (4) to encourage ongoing engagement in diabetes self-care. CONCLUSIONS:Participants reported that HMM helped them develop new insight about their illness and was a catalyst for encouraging them to take control of their illness. HMM has the potential to facilitate communication with providers and engage patients in collaborative goal setting to improve self-care in chronic illness.

SUBMITTER: Buitron de la Vega P

PROVIDER: S-EPMC6153235 | biostudies-other | 2018 Oct

REPOSITORIES: biostudies-other

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"It's like a mirror image of my illness": Exploring Patient Perceptions About Illness Using Health Mind Mapping-a Qualitative Study.

Buitron de la Vega Pablo P Coe Christopher C Paasche-Orlow Michael K MK Clark Jack A JA Waite Katherine K Sanchez Maria Jose MJ Armstrong Emily E Bokhour Barbara G BG

Journal of general internal medicine 20180710 10

<h4>Background</h4>A patient's self-management of chronic disease is influenced in part by their explanatory model of illness (EMI) and daily lived experiences (DLE). Unfortunately, assessing patient's EMI and using this information to engage patients in chronic illness self-management continues to be a challenge.<h4>Objective</h4>"Health mind mapping" (HMM) is a novel process that captures a patient's EMI and DLE through the use of a graphic representation of ideas. We aimed to explore patient' ...[more]

PMID: 29992428

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Project description:ObjectivesTen per cent of patients diagnosed with pancreatic cancer undergo pancreaticoduodenectomy. There is limited previous research focusing on psychological well-being; unmet support needs impact negatively on quality of life. This paper reports the psychological impact of a pancreatic cancer diagnosis and subsequent pancreaticoduodenectomy, exploring how patients' lives alter following surgery and how they seek support.DesignInductive qualitative study involving in-depth semistructured interviews with 20 participants who had undergone pancreaticoduodenectomy for pancreatic or distal biliary duct cancer. Interviews were audiorecorded, transcribed and anonymised, and thematic analysis used principles of constant comparison.SettingSingle National Health Service Trust in Northwest England.ParticipantsPatients were eligible for inclusion if they had had pancreaticoduodenectomy for head of pancreas cancer, periampullary cancer or distal cholangiocarcinoma between 6 months and 6 years previously, and had completed adjuvant chemotherapy.ResultsAnalysis identified the following main themes: diagnosis and decision making around surgery; recovery from surgery and chemotherapy; burden of monitoring and ongoing symptoms; adjusting to 'a new normal'; understanding around prognosis; support-seeking. Participants seized the chance to have surgery, often without seeming to absorb the risks or their prognosis. They perceived that they were unable to control their life trajectory and, although they valued close monitoring, experienced anxiety around their appointments. Participants expressed uncertainty about whether they would be able to return to their former activities. There were tensions in their comments about support-seeking, but most felt that emotional support should be offered proactively.ConclusionsPatients should be made aware of potential psychological sequelae, and that treatment completion may trigger the need for more support. Clinical nurse specialists (CNSs) were identified as key members of the team in proactively offering support; further training for CNSs should be encouraged. Understanding patients' experience of living with cancer and the impact of treatment is crucial in enabling the development of improved support interventions.

Project description:BACKGROUND: Gnosis is a modality-specific ability to access semantic knowledge of an object or stimulus in the presence of normal perception. Failure of this is agnosia or disorder of recognition. It can be highly selective within a mode. self-images are different from others as none has seen one's own image except in reflection. Failure to recognize this image can be labeled as mirror image agnosia or Prosopagnosia for reflected self-image. Whereas mirror agnosia is a well-recognized situation where the person while looking at reflected images of other objects in the mirror he imagines that the objects are in fact inside the mirror and not outside. MATERIAL AND METHODS: Five patients, four females, and one male presented with failure to recognize reflected self-image, resulting in patients conversing with the image as a friend, fighting because the person in mirror is wearing her nose stud, suspecting the reflected self-image to be an intruder; but did not have prosopagnosia for others faces, non living objects on self and also apraxias except dressing apraxia in one patient. This phenomena is new to our knowledge. RESULTS: Mirror image agnosia is an unique phenomena which is seen in patients with parietal lobe atrophy without specificity to a category of dementing illness and seems to disappear as disease advances. DISCUSSION: Reflected self-images probably have a specific neural substrate that gets affected very early in posterior dementias specially the ones which predominantly affect the right side. At that phase most patients are mistaken as suffering from psychiatric disorder as cognition is moderately preserved. As disease becomes more widespread this symptom becomes masked. A high degree of suspicion and proper assessment might help physicians to recognize the organic cause of the symptom so that early therapeutic interventions can be initiated. Further assessment of the symptom with FMRI and PET scan is likely to solve the mystery of how brain handles reflected self-images. CONCLUSION: A new observation involving failure to recognize reflected self-images is reported.

Project description:BackgroundObsessive-compulsive disorder (OCD) is a serious mental health problem that causes significant impairment and reduced quality of life. Though some substantially benefit from psychological therapies, a substantial proportion of people with OCD disengage from treatment or fail to benefit. Theoretical models such as the Common-Sense Model posit that our management of physical illness depends on our perceptions about the condition. Identifying how people with OCD perceive their condition could lead to important insight that would improve treatment of OCD.ObjectivesTo identify and characterise the illness perceptions of people with OCD.MethodTranscribed semi-structured interviews exploring the illness perceptions of 16 people with OCD were analysed using thematic analysis.ResultsIn some cases, identification of symptoms was hindered by a failure to interpret experiences as 'symptoms'. Instead, these individuals interpreted symptoms as a personality quirk, or as evidence that they had become deviant. Perceptions of the condition as 'part' of the self contributed to views of OCD as permanent. Individuals were concerned about the impact of OCD on friends and family and attempted to minimise its consequences, for example by concealing symptoms from their children, who they feared could acquire OCD.ConclusionApplying a theoretical model of physical health understanding to OCD yielded novel insights, with important implications for support and treatment. To enable early help-seeking and rapid diagnosis, public and professional knowledge about OCD should be extended beyond 'washing and checking' to the less widely known OCD-subtypes, such as fear of causing harm. It may be important to identify and challenge views of OCD as permanent early in the course of treatment to maximise engagement. Management of OCD should also address the burden of living with OCD in a family context. Further research to test whether these perceptions lead to coping responses and outcomes in OCD is now needed.

Dataset Information

"It's like a mirror image of my illness": Exploring Patient Perceptions About Illness Using Health Mind Mapping-a Qualitative Study.

Publications

"It's like a mirror image of my illness": Exploring Patient Perceptions About Illness Using Health Mind Mapping-a Qualitative Study.

Similar Datasets

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