Dataset Information

I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway.

ABSTRACT: OBJECTIVE:Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers' assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services. METHODS:An explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis. RESULTS:Three main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am. CONCLUSIONS:People with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.

SUBMITTER: Telenius EW

PROVIDER: S-EPMC7430453 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway.

Telenius Elisabeth Wiken EW Eriksen Siren S Rokstad Anne Marie Mork AMM

BMJ open 20200816 8

<h4>Objective</h4>Many people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers' assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people wit ...[more]

PMID: 32801195

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Project description:OBJECTIVES:To explore the perceptions of Aboriginal Community Controlled Health Service (ACCHS) staff involved in providing mental healthcare to Aboriginal young people of the current and ideal pathways to mental healthcare for urban Aboriginal young people attending ACCHSs, and to identify what additional supports staff may need to provide optimal mental healthcare to Aboriginal young people. DESIGN:Qualitative interview study conducted during May 2016-2017. SETTING:Primary care, at two ACCHSs participating in the Study of Environment on Aboriginal Resilience and Child Health in New South Wales. PARTICIPANTS:Purposive sampling of staff involved in mental healthcare pathways of Aboriginal young people, including general practitioners (GPs), nurses and Aboriginal Health Workers (AHWs). RESULTS:All individuals approached for interview (n=21) participated in the study. Four overarching themes and seven sub-themes were identified: availability and use of tools in practice (valuing training and desire for tools and established pathways), targeting the ideal care pathway (initiating care and guiding young people through care), influencing the care pathway (adversities affecting access to care and adapting the care pathway) and assessing future need (appraising service availability). CONCLUSIONS:Participants desired screening tools, flexible guidelines and training for healthcare providers to support pathways to mental healthcare for Aboriginal young people. Both GPs and AHWs were considered key in identifying children at risk and putting young people onto a pathway to receive appropriate mental healthcare. AHWs were deemed important in keeping young people on the care pathway, and participants felt care pathways could be improved with the addition of dedicated child and adolescent AHWs. The ACCHSs were highlighted as essential to providing culturally appropriate care for Aboriginal young people experiencing mental health problems, and funding for mental health specialists to be based at the ACCHSs was considered a priority.

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Project description:BackgroundDespite depression being prevalent in people with dementia, contributing to negative health outcomes and placing increased burden on individuals and family members, access to psychological interventions is limited. A potential solution is guided low-intensity behavioral activation, supported by informal caregivers and guided by healthcare professionals. However, it is necessary to adapt interventions to meet the needs and preferences of key stakeholders to enhance acceptability and relevance. Study objectives were to: (1) explore needs and preferences concerning the content and delivery model of the guided low-intensity behavioral activation intervention; and (2) adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers in Sweden.MethodsSemi-structured interviews and focus group discussions were conducted with key stakeholders, including healthcare professionals (n = 18), community stakeholders (n = 7), people with dementia (n = 8), and informal caregivers (n = 19). A draft of the written low-intensity behavioral activation intervention and a description of the proposed intervention delivery model were provided to participants. Open-ended questions explored the perceived relevance of the intervention, alongside needs and preferences concerning content and delivery. A manifest content analysis approach was adopted.ResultsContent analysis resulted in three categories: Content, Delivery procedures, and Illness trajectory. Results highlighted a need to consider the intervention Content via increased cultural adaptation to the Swedish context, and increasing the inclusiveness of intervention content. Delivery procedures were identified as needing to be flexible given the unpredictable nature of caring for people with dementia, with the provision of additional guidance to informal caregivers supporting the intervention. Illness trajectory was viewed as essential to consider, with the intervention regarded as suitable for those early in the dementia trajectory, alongside a need to reduce workbook text to minimize burden given dementia symptomology.ConclusionsThe intervention and proposed delivery model were generally well received by all stakeholders. We were able to identify key adaptations to enhance cultural appropriateness, relevancy, and acceptability for a currently neglected population. Results will inform a feasibility study to explore the feasibility and acceptability of the intervention and study procedures to inform the design of a future superiority randomized controlled trial.Trial registration/protocolNot applicable.

Project description:BackgroundPeople with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions.MethodsA dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes.ResultsBoth PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories.ConclusionsNeeds-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad.

Dataset Information

I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway.

Publications

I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway.

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