Advanced multiple sclerosis and the psychosocial impact on families.

This study explores family relationships and support needs when adapting to a relative's advanced-multiple sclerosis (MS) around transition into care. A multi-site qualitative study of relatives of people with advanced-MS was conducted. A purposive sample of 25 relatives was selected and interviewed...

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Publicado en:Psychology & Health Vol. 26; no. 1; pp. 113 - 128
Autores principales: Bowen C, MacLehose A, Beaumont JG
Formato: research tables/charts Journal Article
Publicado: Taylor & Francis Ltd Jan2011
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jan2011
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      pub: Taylor & Francis Ltd
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          Bowen C
          MacLehose A
          Beaumont JG
        affil: The Institute for Neuropalliative Rehabilitation, Royal Hospital for Neuro-disability, London SW15 3SW, UK
      sug:
        subj:
          Multiple Sclerosis Psychosocial Factors
          Family Psychosocial Factors
          Respite Care
          Family Relations
          Patient Admission
          Human
          Purposive Sample
          Multicenter Studies
          Cross Sectional Studies
          Qualitative Studies
          Grounded Theory
          Funding Source
          Severity of Illness
          Data Analysis Software
          Triangulation
          Disease Progression
          Interviews
          Middle Age
          Adult
          Aged
          Aged, 80 and Over
          Female
          Male
          Role Change
          Support, Psychosocial
          Family Centered Care
          Scales
          Clinical Assessment Tools
          Middle Aged: 45-64 years
          Adult: 19-44 years
          Aged: 65+ years
          Aged, 80 & over
          Female
          Male
      ab: This study explores family relationships and support needs when adapting to a relative's advanced-multiple sclerosis (MS) around transition into care. A multi-site qualitative study of relatives of people with advanced-MS was conducted. A purposive sample of 25 relatives was selected and interviewed either in the care home or participants' homes. Interviews were recorded, transcribed and analysed using grounded theory methodology and Atlas.ti 5.2 software. Data quality enhancement involved: a self-report questionnaire; triangulation and member-checking. Themes derived from the data were: information, communication and understanding; family relationships, roles and responsibilities; emotions, coping and support; life outlook and reflection. Provision of information and support for families around the transition into care appears to be inconsistent despite there being a need for family members to ask questions and discuss the impact of the condition. Relatives reported that as a family and as individuals they faced significant challenges and were in great need of support at times, but reflected that they would have found it very difficult to accept. Relatives were also often unsure what type of support would have helped. For care providers, there needs to be a shift from the traditional health care professional 'patient-centred' mindset towards more proactive family-centred approaches and steps to encourage this are articulated.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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