Everyday Life and Mastocytosis from a patient perspective - a qualitative study

Research output: Contribution to journalJournal articleResearchpeer-review

76 Downloads (Pure)

Abstract

Aim: To investigate and gain knowledge about patients’ perspectives on everyday life with mastocytosis and how they experience, understand and manage symptoms and challenges. Background: Indolent systemic mastocytosis (ISM) is a disease characterised by the accumulation and activation of mast cells. Symptoms are diverse and range from mild to severely debilitating or even fatal. It is considered rare but is underdiagnosed due to lack of awareness. Quantitative studies have shown that ISM can negatively impact quality of life. No qualitative studies have described everyday life with the disease. Design: A qualitative interview study taking a phenomenological approach. Methods: Seven qualitative, semi-structured interviews with adult patients with ISM. The analysis was inspired by Giorgi's phenomenological method. COREQ reporting guidelines were used. Results: Three themes and five subthemes emerged from the analysis. (a) The everyday life with a rare disease, unknown to most people. Being perceived as a hypochondriac in the encounter with the health system. The diagnosis makes a difference. Expert knowledge is important. (b) Living with and handling the invisible and visible symptoms. The visible body. (c) Fearing an attack. Feeling safe and vulnerable at the same time. Conclusion: Patients with ISM are severely affected in their everyday lives, especially in terms of their relationship with family and social network. Symptoms restrict and complicate activities and participation in social contexts, and the fear of an anaphylactic attack is always present. The disease affects patients’ self-perception and sexuality. The rarity of the disease and general low awareness seems to be of great importance in the encounter with the healthcare system, both before and after diagnosis, and there is a need for expert knowledge, support and care. Relevance for clinical practice: The focus of counselling should not only be on the disease itself, but also on living life with the disease.

Original languageEnglish
JournalJournal of Clinical Nursing
Volume28
Issue number7-8
Pages (from-to)1114-1124
ISSN0962-1067
DOIs
Publication statusPublished - Apr 2019

Fingerprint

Mastocytosis
Systemic Mastocytosis
Interviews
Rare Diseases
Mast Cells
Counseling
Quality of Life
Guidelines
Delivery of Health Care
Health

Bibliographical note

© 2018 John Wiley & Sons Ltd.

Keywords

  • chronic rare disease
  • counselling
  • disease management
  • everyday life
  • health personnel
  • nursing
  • patient experience
  • patient perspectives
  • qualitative research
  • systemic mastocytosis

Cite this

@article{2490058ce3424e1faa340f626673817f,
title = "Everyday Life and Mastocytosis from a patient perspective - a qualitative study",
abstract = "Aim: To investigate and gain knowledge about patients’ perspectives on everyday life with mastocytosis and how they experience, understand and manage symptoms and challenges. Background: Indolent systemic mastocytosis (ISM) is a disease characterised by the accumulation and activation of mast cells. Symptoms are diverse and range from mild to severely debilitating or even fatal. It is considered rare but is underdiagnosed due to lack of awareness. Quantitative studies have shown that ISM can negatively impact quality of life. No qualitative studies have described everyday life with the disease. Design: A qualitative interview study taking a phenomenological approach. Methods: Seven qualitative, semi-structured interviews with adult patients with ISM. The analysis was inspired by Giorgi's phenomenological method. COREQ reporting guidelines were used. Results: Three themes and five subthemes emerged from the analysis. (a) The everyday life with a rare disease, unknown to most people. Being perceived as a hypochondriac in the encounter with the health system. The diagnosis makes a difference. Expert knowledge is important. (b) Living with and handling the invisible and visible symptoms. The visible body. (c) Fearing an attack. Feeling safe and vulnerable at the same time. Conclusion: Patients with ISM are severely affected in their everyday lives, especially in terms of their relationship with family and social network. Symptoms restrict and complicate activities and participation in social contexts, and the fear of an anaphylactic attack is always present. The disease affects patients’ self-perception and sexuality. The rarity of the disease and general low awareness seems to be of great importance in the encounter with the healthcare system, both before and after diagnosis, and there is a need for expert knowledge, support and care. Relevance for clinical practice: The focus of counselling should not only be on the disease itself, but also on living life with the disease.",
keywords = "chronic rare disease, counselling, disease management, everyday life, health personnel, nursing, patient experience, patient perspectives, qualitative research, systemic mastocytosis",
author = "Britt Jensen and Sigurd Broesby-Olsen and Carsten Bindslev-Jensen and Nielsen, {Dorthe S}",
note = "{\circledC} 2018 John Wiley & Sons Ltd.",
year = "2019",
month = "4",
doi = "10.1111/jocn.14676",
language = "English",
volume = "28",
pages = "1114--1124",
journal = "Journal of Clinical Nursing",
issn = "0962-1067",
publisher = "Wiley-Blackwell",
number = "7-8",

}

Everyday Life and Mastocytosis from a patient perspective - a qualitative study. / Jensen, Britt; Broesby-Olsen, Sigurd; Bindslev-Jensen, Carsten; Nielsen, Dorthe S.

In: Journal of Clinical Nursing, Vol. 28, No. 7-8, 04.2019, p. 1114-1124.

Research output: Contribution to journalJournal articleResearchpeer-review

TY - JOUR

T1 - Everyday Life and Mastocytosis from a patient perspective - a qualitative study

AU - Jensen, Britt

AU - Broesby-Olsen, Sigurd

AU - Bindslev-Jensen, Carsten

AU - Nielsen, Dorthe S

N1 - © 2018 John Wiley & Sons Ltd.

PY - 2019/4

Y1 - 2019/4

N2 - Aim: To investigate and gain knowledge about patients’ perspectives on everyday life with mastocytosis and how they experience, understand and manage symptoms and challenges. Background: Indolent systemic mastocytosis (ISM) is a disease characterised by the accumulation and activation of mast cells. Symptoms are diverse and range from mild to severely debilitating or even fatal. It is considered rare but is underdiagnosed due to lack of awareness. Quantitative studies have shown that ISM can negatively impact quality of life. No qualitative studies have described everyday life with the disease. Design: A qualitative interview study taking a phenomenological approach. Methods: Seven qualitative, semi-structured interviews with adult patients with ISM. The analysis was inspired by Giorgi's phenomenological method. COREQ reporting guidelines were used. Results: Three themes and five subthemes emerged from the analysis. (a) The everyday life with a rare disease, unknown to most people. Being perceived as a hypochondriac in the encounter with the health system. The diagnosis makes a difference. Expert knowledge is important. (b) Living with and handling the invisible and visible symptoms. The visible body. (c) Fearing an attack. Feeling safe and vulnerable at the same time. Conclusion: Patients with ISM are severely affected in their everyday lives, especially in terms of their relationship with family and social network. Symptoms restrict and complicate activities and participation in social contexts, and the fear of an anaphylactic attack is always present. The disease affects patients’ self-perception and sexuality. The rarity of the disease and general low awareness seems to be of great importance in the encounter with the healthcare system, both before and after diagnosis, and there is a need for expert knowledge, support and care. Relevance for clinical practice: The focus of counselling should not only be on the disease itself, but also on living life with the disease.

AB - Aim: To investigate and gain knowledge about patients’ perspectives on everyday life with mastocytosis and how they experience, understand and manage symptoms and challenges. Background: Indolent systemic mastocytosis (ISM) is a disease characterised by the accumulation and activation of mast cells. Symptoms are diverse and range from mild to severely debilitating or even fatal. It is considered rare but is underdiagnosed due to lack of awareness. Quantitative studies have shown that ISM can negatively impact quality of life. No qualitative studies have described everyday life with the disease. Design: A qualitative interview study taking a phenomenological approach. Methods: Seven qualitative, semi-structured interviews with adult patients with ISM. The analysis was inspired by Giorgi's phenomenological method. COREQ reporting guidelines were used. Results: Three themes and five subthemes emerged from the analysis. (a) The everyday life with a rare disease, unknown to most people. Being perceived as a hypochondriac in the encounter with the health system. The diagnosis makes a difference. Expert knowledge is important. (b) Living with and handling the invisible and visible symptoms. The visible body. (c) Fearing an attack. Feeling safe and vulnerable at the same time. Conclusion: Patients with ISM are severely affected in their everyday lives, especially in terms of their relationship with family and social network. Symptoms restrict and complicate activities and participation in social contexts, and the fear of an anaphylactic attack is always present. The disease affects patients’ self-perception and sexuality. The rarity of the disease and general low awareness seems to be of great importance in the encounter with the healthcare system, both before and after diagnosis, and there is a need for expert knowledge, support and care. Relevance for clinical practice: The focus of counselling should not only be on the disease itself, but also on living life with the disease.

KW - chronic rare disease

KW - counselling

KW - disease management

KW - everyday life

KW - health personnel

KW - nursing

KW - patient experience

KW - patient perspectives

KW - qualitative research

KW - systemic mastocytosis

U2 - 10.1111/jocn.14676

DO - 10.1111/jocn.14676

M3 - Journal article

C2 - 30230078

VL - 28

SP - 1114

EP - 1124

JO - Journal of Clinical Nursing

JF - Journal of Clinical Nursing

SN - 0962-1067

IS - 7-8

ER -