{
  "abstract": "Background\n\nParkinson's disease (PD) is a progressive neurodegenerative disorder affecting motor and non-motor functions. When oral medication no longer provides adequate control, device-aided therapies (DAT), including levodopa infusion therapy, may be introduced. Although DAT can improve symptom management, little is known about how people with PD (PwPD) and family caregivers (FC) experience the initiation process. This study explored PwPD and their FC perceptions during decision-making, therapy initiation, and subsequent adaptation to levodopa pump therapy.Methods\n\nThis qualitative study employed semi-structured interviews (6-24 months after treatment initiation) and latent reflexive thematic analysis with ten PwPD and nine FC recruited from two Swedish university hospitals.Results\n\nThematic analysis revealed four shared themes: (1) Living with the constraints of PD, (2) Sustaining hope in the face of therapeutic uncertainty, (3) Adapting to a new treatment while facing practical challenges, and (4) Relying on expertise while managing its absence. Pump therapy was often chosen due to limited alternatives and strong trust in the specialized multidisciplinary PD team. While both groups experienced symptom improvements, PwPD focused on autonomy whereas FC focused on responsibilities. Expectations were generally met, yet FC frequently felt underinformed about the realities of daily pump management.Conclusions\n\nOur findings highlight that although symptom control improved, both PwPD and FC continued to face practical and emotional challenges. Supporting their adaptation process requires coordinated, person-centred preparation, guidance and follow-up from multidisciplinary, specialized PD teams.Clinical trial registration\n\nNot applicable.",
  "abstract_shown": true,
  "affiliations": [
    "Department of Clinical Sciences Lund, Faculty of Medicine, Lund University, Lund, Sweden. monica.scharfenort@med.lu.se.",
    "Department of Neurology, Rehabilitation Medicine, Memory and Geriatrics, Skåne University Hospital, Lund, Sweden. monica.scharfenort@med.lu.se.",
    "Department of Neurology, Rehabilitation Medicine, Memory and Geriatrics, Skåne University Hospital, Lund, Sweden.",
    "Neurodegenerative Disease Unit, Center for Rare Neurological Diseases (ERN- RND), Department of Neurosciences, Padua Neuroscience Center (PNC), University of Padova, Padova, Italy.",
    "Department of Clinical Sciences Lund, Faculty of Medicine, Lund University, Lund, Sweden.",
    "Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.",
    "Memory Clinic, Skåne University Hospital, Malmö, Sweden.",
    "IRCCS San Camillo, Venice, Italy.",
    "Department of Medical Sciences, Neurology, Uppsala University, Uppsala, Sweden.",
    "Department of Care Sciences, Malmö University, Malmö, Sweden."
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 10,
  "authors": [
    {
      "affs": [
        0,
        1
      ],
      "name": "Monica Scharfenort",
      "orcid": "0000-0003-4415-1428"
    },
    {
      "affs": [
        2
      ],
      "name": "Anette Nobrell"
    },
    {
      "affs": [
        3
      ],
      "name": "Michela Garon"
    },
    {
      "affs": [
        4,
        2
      ],
      "name": "Kristina Rosqvist"
    },
    {
      "affs": [
        4,
        2
      ],
      "name": "Gesine Paul"
    },
    {
      "affs": [
        5,
        6
      ],
      "name": "Maria H Nilsson"
    },
    {
      "affs": [
        3,
        7
      ],
      "name": "Angelo Antonini",
      "orcid": "0000-0003-1040-2807"
    },
    {
      "affs": [
        8
      ],
      "name": "Dag Nyholm"
    },
    {
      "affs": [
        4,
        2
      ],
      "name": "Per Odin"
    },
    {
      "affs": [
        9
      ],
      "name": "Elisabeth Mangrio"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/085ryqadkfkcv.bib",
  "cited_by": 0,
  "doi": "10.1186/s12912-026-05527-6",
  "fulltext_url": "https://europepmc.org/articles/PMC13689137",
  "id": "085ryqadkfkcv",
  "issns": [
    "1472-6955"
  ],
  "landing_url": "https://europepmc.org/article/MED/42908002",
  "language": "eng",
  "licence": "CC-BY",
  "licence_label": "CC BY",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "lcc",
      "RT1-120"
    ],
    [
      "openalex",
      "2728|Parkinson's Disease Mechanisms and Treatments"
    ]
  ],
  "openalex": "W7223055260",
  "pdf_url": "https://europepmc.org/articles/PMC13689137?pdf=render",
  "pmcid": "PMC13689137",
  "pmid": "42908002",
  "published": "2026-10-20",
  "publisher": "BMC",
  "ris": "https://research.draconitic.com/paper/085ryqadkfkcv.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:19:53Z",
      "native_id": "MED:42908002",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42908002"
    },
    {
      "first_seen": "2026-10-30T13:45:48Z",
      "native_id": "d09550f77efd464d84bd2f1a69d3ac36",
      "source": "doaj",
      "url": "https://doi.org/10.1186/s12912-026-05527-6"
    }
  ],
  "subjects": [
    {
      "field": "medicine",
      "origin": "openalex:2728|Parkinson's Disease Mechanisms and Treatments",
      "subfield": "neurology"
    }
  ],
  "title": "Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives.",
  "title_text": "Initiating levodopa pump therapy: a qualitative study of patient and caregiver perspectives.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T13:45:48Z",
  "url": "https://research.draconitic.com/paper/085ryqadkfkcv",
  "venue": "BMC nursing",
  "versions": []
}