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Illness careers and continuity of care in mental health services: a qualitative study of service users and carers

Nilufar Ahmed Orcid Logo

SOCIAL SCIENCE AND MEDICINE

Swansea University Author: Nilufar Ahmed Orcid Logo

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DOI (Published version): 10.1016/j.socscimed.2009.06.015

Abstract

Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user in...

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Published in: SOCIAL SCIENCE AND MEDICINE
Published: 2009
URI: https://cronfa.swan.ac.uk/Record/cronfa24922
first_indexed 2015-11-28T01:58:00Z
last_indexed 2024-11-14T11:26:42Z
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spelling 2023-06-28T14:39:19.1578555 v2 24922 2015-11-27 Illness careers and continuity of care in mental health services: a qualitative study of service users and carers d8d2587d94adcdf31706b9efe04db909 0000-0003-4274-801X Nilufar Ahmed Nilufar Ahmed true false 2015-11-27 Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the 'patient career' to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future. Journal Article SOCIAL SCIENCE AND MEDICINE 31 12 2009 2009-12-31 10.1016/j.socscimed.2009.06.015 COLLEGE NANME COLLEGE CODE Swansea University 2023-06-28T14:39:19.1578555 2015-11-27T16:31:31.9672228 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Social Work Nilufar Ahmed 0000-0003-4274-801X 1
title Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
spellingShingle Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
Nilufar Ahmed
title_short Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
title_full Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
title_fullStr Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
title_full_unstemmed Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
title_sort Illness careers and continuity of care in mental health services: a qualitative study of service users and carers
author_id_str_mv d8d2587d94adcdf31706b9efe04db909
author_id_fullname_str_mv d8d2587d94adcdf31706b9efe04db909_***_Nilufar Ahmed
author Nilufar Ahmed
author2 Nilufar Ahmed
format Journal article
container_title SOCIAL SCIENCE AND MEDICINE
publishDate 2009
institution Swansea University
doi_str_mv 10.1016/j.socscimed.2009.06.015
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Social Work{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Social Work
document_store_str 0
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description Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the 'patient career' to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future.
published_date 2009-12-31T18:48:20Z
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score 11.1586075

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