title: Unmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study.
abstract: OBJECTIVE
  Multiple sclerosis (MS) patients' caregivers are sometimes considered as "hidden patients." How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany.
  
  
  METHODS
  The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis.
  
  
  RESULTS
  Unmet needs were sorted into the following categories: "relationship to physician," "individual support by the healthcare system," "relationship to the individual severely affected by MS," "end-of-life issues," "self-care," and "higher awareness of MS." Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions.
  
  
  CONCLUSIONS
  A close patient-caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.
authors.affiliation: Department of Palliative Medicine,University Hospital of Cologne,Cologne,Germany.
authors.forename: Heidrun
authors.initials: H
authors.lastname: Golla
authors.affiliation: Department of Palliative Medicine,University Hospital of Cologne,Cologne,Germany.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Mammeas
authors.affiliation: Department of Palliative Medicine,University Hospital of Cologne,Cologne,Germany.
authors.forename: Maren
authors.initials: M
authors.lastname: Galushko
authors.affiliation: Institute for Medical Sociology,Health Services Research and Rehabilitation Science (IMHR),Faculty of Human Science and Faculty of Medicine,University of Cologne,Cologne,Germany.
authors.forename: Holger
authors.initials: H
authors.lastname: Pfaff
authors.affiliation: Department of Palliative Medicine,University Hospital of Cologne,Cologne,Germany.
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000150:complications*; D010166:Palliative Care / Q000523:psychology; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology
keywords: Caregivers; Palliative care; Qualitative study; Severe multiple sclerosis