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- Boström, Katrin, et al.
(författare)
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Being the next of kin of an adult person with muscular dystrophy
- 2006
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Ingår i: Clinical Nursing Research. - : SAGE Publications. - 1054-7738 .- 1552-3799. ; 15:2, s. 86-104
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Tidskriftsartikel (refereegranskat)abstract
- A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.
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| 2. |
- Boström, Katrin, et al.
(författare)
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Living with a chronic deteriorating disease : the trajectory with muscular dystrophy over ten years.
- 2004
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 26:23, s. 1388-1398
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. METHODS: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. RESULTS: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. CONCLUSIONS: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.
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| 3. |
- Boström, Katrin, et al.
(författare)
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Living with a hereditary disease : persons with muscular dystrophy and their next of kin.
- 2005
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Ingår i: American Journal of Medical Genetics. - Hoboken, N.J. : Wiley-Liss. - 0148-7299 .- 1096-8628 .- 1552-4825 .- 1552-4833. ; 136A:1, s. 17-24
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Tidskriftsartikel (refereegranskat)abstract
- This qualitative study describes conceptions and experiences of the hereditary aspect of muscular dystrophy (MD) from both the patients' and the next of kin's perspective. Different diagnoses of MD are included: dystrophia myotonica, myopathia distalis tarda hereditaria, Becker MD, facioscapulohumeral MD, limb-girdle MD, Emery-Dreifuss and undetermined proximal MD (Duchenne MD is not included). Interviews were conducted with 46 persons with MD and 36 next of kin. The interviews were subjected to inductive content analysis. Only two in each group did not spontaneously mention anything related to the fact that MD is disease with dominant or recessive inheritance. It was found that heredity has a prominent place in the thoughts and feelings of the family. These thoughts were classified as Becoming aware of MD and its hereditary nature, looking into the pedigree, acquiring an understanding of MD, thoughts about genetic testing, interpreting the risk, whether to have children or not, feelings related to the future, and feelings of responsibility and guilt. Families with MD need medical information and the opportunity for genetic testing as well as support and counseling in coming to terms with living with a hereditary disease, whether or not that includes a decision to take a test.
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| 4. |
- Boström, Katrin, et al.
(författare)
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Quality of life in patients with muscular dystrophy and their next of kin
- 2005
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Ingår i: International Journal of Rehabilitation Research. - : Ovid Technologies (Wolters Kluwer Health). - 0342-5282 .- 1473-5660. ; 28:2, s. 103-109
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Tidskriftsartikel (refereegranskat)abstract
- The aims of this study were to investigate quality of life (QoL) among adult patients with muscular dystrophy (n=46) and their next of kin (n=36) and to investigate the influence of disease-related and demographic factors on QoL. The questionnaire "Subjective estimation of quality of life" was used. The results show that patients had lower QoL than their next of kin regarding having no work or meaningful occupation, energy, self-assuredness, self-acceptance and emotional experiences. Age of onset of disease had an impact on QoL. The need for a ventilator had an influence only on assessment of energy. Patients without a partner assessed lower than those who had a partner. In the case of a person who is young and single the onset of muscular dystrophy reduces the likelihood of having a partner or children and affects personal economy negatively. Assessment of relationship to friends was lower among next of kin who provided daily help than among those who provided help once a week. There is a need for recurrent rehabilitation during life-long disabilities and a need to give particular support to those with early onset of disease, those who are single and those who are childless. It is also important to include the patient's close relations when giving rehabilitation.
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| 5. |
- Boström, Katrin, et al.
(författare)
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A family matter : when a parent is diagnosed with multiple sclerosis. A qualitative study
- 2016
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 25:7-8, s. 1053-1061
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: The aim was to explore and describe from a triple perspective - that of the ill parent, the healthy parent and the children - experienced issues that are important to acknowledge and act upon to make it easier for a child to cope when a parent is diagnosed with multiple sclerosis.Background: A chronic disease affects the whole family and has a substantial impact on the children. Traditionally, the focus is on the patient, and communication with other family members is not generally integrated into health care. Health care professionals need to be aware of a child's needs when a parent is diagnosed with multiple sclerosis.Design: A qualitative design using content analysis with an inductive approach was used.Methods: Nine focus group interviews were conducted with the ill parents, the healthy parents and the children separately.Results: Participants jointly indicated that family members need to be recognised, both initially and onwards in their everyday lives. Seven categories were defined: Prerequisites within the families, Initial reactions, Trying to adapt and manage, Developing strategies, Everyday life, Thoughts about the future and Support from health care providers. Together they constituted the theme that multiple sclerosis is a family matter. Both ill and healthy parents wished for support from health care professionals in addressing their children's needs.Conclusions: Health care professionals need to pay attention to children as a parent's illness affects them. Not only the children would benefit, but so would their parents, as their worries for their children would be reduced.Relevance to clinical practice: Staff can be advised to pay attention to the parenting role, how the parenting role and parent-child relationship may change as a result of a chronic disease. Parents may need reassurance and benefit from advice about how to talk to their children about their condition and its impact.
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