Dataset Information

Lived Experience of Hereditary Chronic Pancreatitis - A Qualitative Interview Study.

ABSTRACT:

Objectives

Hereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a patient-centered management of chronic conditions.

Methods

Semi-structured qualitative interviews were conducted with hereditary chronic pancreatitis patients and their relatives. Data were analysed using qualitative content analysis. The concepts of 'biographical contingency,' 'biographical disruption' and the 'shifting perspectives model' served as theoretical frameworks.

Results

A total of 24 participants (17 patients, 7 relatives) were interviewed individually. Four main themes were identified: (1) The unpredictable clinical course of hereditary chronic pancreatitis; (2) hereditary chronic pancreatitis as a devastating experience; (3) hereditary chronic pancreatitis as part of a normal life; and (4) being reduced to hereditary chronic pancreatitis.

Discussion

The 'shifting perspectives model' of chronic illness covers the four dimensions adequately and can serve as a theoretical model to explain hereditary chronic pancreatitis patients' experience. A better understanding of the patients and their families' experience and the shifting character of hereditary chronic pancreatitis can help healthcare professionals to tailor the care to meet the needs of those affected.

SUBMITTER: Muller R

PROVIDER: S-EPMC9643816 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature

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Publications

Lived Experience of Hereditary Chronic Pancreatitis - A Qualitative Interview Study.

Müller Regina R Aghdassi Ali A AA Kruse Judith J Lerch Markus M MM Rach Christoph C Simon Peter P Salloch Sabine S

Chronic illness 20210924 4

<h4>Objectives</h4>Hereditary chronic pancreatitis is a rare condition characterized by intermittent acute episodes of pancreatitis and long-term impairment of pancreatic functions. However, the subjective perspective of individuals affected by hereditary chronic pancreatitis has been little studied. This qualitative study investigates the experience of hereditary chronic pancreatitis patients and their relatives because the awareness of the needs of those affected is an essential component of a ...[more]

PMID: 34559012

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Project description:BackgroundEpilepsy is the most common neurological disorder, which is characterized by persistent derangement of the nervous system due to an abrupt excessive discharge of the group of neurons from the cerebrum. For developing young people with epilepsy coping with the challenges of living with epilepsy and adjusting normative tasks associated with adolescence is stressful in all domains of the lives of young people with epilepsy. But in Ethiopia, published literature regarding the lived experience of young people with epilepsy is lacking.ObjectivesThis study aims to explore lived experience of young people with epilepsy.MethodsA qualitative interview study was conducted in Bahir Dar city government specialized and referral Hospitals, from February to April, 2021. Using the rule of saturation, a total of 11 study participants (age 12-24) were selected using hetrogenious types of purposive sampling technique. The data were collected through semi structured interviews technique with the aid of audio recorder. Semi-structured interview guide and observation checklist for care context in health facilities were used. The collected data was transcribed word by word and translated conceptually. The Data were analyzed using thematic approach. The credibility, dependability, Conformability and transferability of the study were assured using different techniques such as peer debriefing, member checking; audit Trail, thick description and purposeful sampling. Atlas- ti version7 software was used to facilitate data analysis.ResultsThe participants' narratives revealed two main themes: 'experiences due epilepsy' and 'coping strategies to wards epilepsy'. Experience due to epilepsy' was described by young people with epilepsy in terms of psychosocial, physical, economical and health care related experiences. They described coping strategies towards epilepsy in terms of finding support from family and society as well as religious institutions and other traditions as copping strategy.ConclusionEven though young people with epilepsy had suffered a lot of hurtful experiences, they reported coping strategies towards epilepsy that include support from various sources. These types of findings have implications for social work interventions for young people living with epilepsy.

Dataset Information

Lived Experience of Hereditary Chronic Pancreatitis - A Qualitative Interview Study.

Objectives

Methods

Results

Discussion

Publications

Lived Experience of Hereditary Chronic Pancreatitis - A Qualitative Interview Study.

Similar Datasets

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