oru.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Quality of life in spite of an unpredictable future: the next of kin of patients with multiple sclerosis
Örebro University, School of Health and Medical Sciences.
Örebro University, School of Health and Medical Sciences.
Swedish Institute for Health Sciences, Stockholm, Sweden.
2010 (English)In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 42, no 6, p. 331-341Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to describe the quality of life of the next of kin of patients diagnosed as having multiple sclerosis (MS). Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The next of kin's quality of life emerged as good in terms of both external conditions and interpersonal relationships in both the interviews and the Subjective Quality of Life. In the interviews, most of the next of kin indicated a trusting and secure relationship with the cohabiting partner, but others described a strained situation with an unsatisfactory married/cohabiting life. There was worry about a worsening of the relationship in the future. In addition, the next of kin spoke of a decrease in freedom, self-actualization, and security, also of a more negative general mood and negative emotional experiences. The results of the questionnaire showed that a sense of engagement in life, having energy, self-actualization, self-assuredness, self-acceptance, security, and general mood were significantly correlated with quality of life as a whole. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future. The nurses could start family support groups and help the next of kin to look after their own health, giving advice on health-promoting behavior to make it possible for the person with MS to live at home even if the illness becomes worse.

Place, publisher, year, edition, pages
Philadelphia, USA: Lippincott Williams & Wilkins, 2010. Vol. 42, no 6, p. 331-341
Keywords [en]
Adult, Aged, Attitude to Health, Caregivers, Cost of Illness, Family, Female, Forecasting, Humans, Interpersonal Relations, Male, Middle Aged, Multiple Sclerosis, Nursing Methodology Research, Qualitative Research, Quality of Life, Questionnaires, Sweden, Trust, Uncertainty
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-12836DOI: 10.1097/JNN.0b013e3181f8a5b2ISI: 000284109300006PubMedID: 21207771Scopus ID: 2-s2.0-78651483585OAI: oai:DiVA.org:oru-12836DiVA, id: diva2:385142
Available from: 2011-01-11 Created: 2011-01-03 Last updated: 2018-04-23Bibliographically approved
In thesis
1. Life situation of next of kin to persons in need of care-cronic sorrow, burden, quality of life
Open this publication in new window or tab >>Life situation of next of kin to persons in need of care-cronic sorrow, burden, quality of life
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Nursing research has been performed during the last 20-30 years, about the next of kin’s vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin’s relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

Place, publisher, year, edition, pages
Örebro: Örebro university, 2014. p. 84
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 85
Keywords
life situation, next of kin, informal caregiving, chronic sorrow, burden, quality of life, Partnership model
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-33839 (URN)978-91-7529-009-6 (ISBN)
Public defence
2014-04-11, Hörsal P1, Prismahuset, Örebro universitet, Fakultetsgatan 1, 702 81 Örebro, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2014-02-19 Created: 2014-02-19 Last updated: 2017-10-17Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMedScopus

Authority records BETA

Liedström, ElisabethIsaksson, Ann-KristinAhlström, Gerd

Search in DiVA

By author/editor
Liedström, ElisabethIsaksson, Ann-KristinAhlström, Gerd
By organisation
School of Health and Medical Sciences
In the same journal
Journal of Neuroscience Nursing
Nursing

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 58 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf