Dataset Information

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives.

ABSTRACT: BACKGROUND:Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. METHODS:We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. RESULTS:We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. DISCUSSION:Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

SUBMITTER: Rapaport P

PROVIDER: S-EPMC6942277 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives.

Rapaport Penny P Burton Alexandra A Leverton Monica M Herat-Gunaratne Ruminda R Beresford-Dent Jules J Lord Kathryn K Downs Murna M Boex Sue S Horsley Rossana R Giebel Clarissa C Cooper Claudia C

BMC geriatrics 20200103 1

<h4>Background</h4>Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve an ...[more]

PMID: 31900113

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Project description:ObjectivePersecutory delusions typically build on feelings of inter-personal vulnerability linked to negative views of the self. Negative body image is an overlooked aspect of this link between the self-concept and paranoia.DesignThis study explores body image from the first-person perspective of patients with persecutory delusions.MethodSemi-structured interviews, analysed using interpretative phenomenological analysis, were conducted with twelve patients with persecutory delusions in the context of psychotic disorders.ResultsFour super-ordinate themes emerged. First, appearance as a source of threat accounted for how negative body image increased feelings of vulnerability and fed into the content of paranoia and voices (e.g., 'I feel that everybody is noticing that I'm getting bigger and bigger and laughing at me'). Second, there was the negative impact of uncontrollable and unwanted weight gain, especially following antipsychotic medication (e.g., 'I ballooned up to 23 stone'). Third, feeling stuck captured the hopelessness and resignation in relation to appearance (e.g., 'I've become so accustomed to being overweight that I've accepted it as my lot'). Finally, looking well symbolises feeling well represented the importance of appearance in determining mental well-being (e.g., 'If I've got clean clothes and I put makeup on, at least I feel that I'm looking after myself').ConclusionsPatients with persecutory delusions described appearance-related concerns making them feel negative towards themselves, inferior to other people, and vulnerable to harm. Appearance-related distress was broader than weight gain, including dissatisfaction with skin, clothing, and attractiveness. Negative body image may be a contributory factor in the occurrence of paranoia.Practitioner pointsBody image concerns may be of particular relevance in patients with persecutory delusions due to weight gain, inactivity, and medication side effects. Body image concerns include weight gain and broader aspects of appearance. Negative body image contributes to feelings of vulnerability, potentially worsening paranoid fears. It may be helpful for practitioners to explore the psychological impact of weight gain and body image concerns in patients with psychosis.

Project description:BackgroundPeople who use drugs in Scotland are currently experiencing disproportionately high rates of drug-related deaths. Drug consumption rooms (DCRs) are harm reduction services that offer a safe, hygienic environment where pre-obtained drugs can be consumed under supervision. The aim of this research was to explore family member perspectives on DCR implementation in Scotland in order to inform national policy.MethodsScotland-based family members of people who were currently or formerly using drugs were invited to take part in semi-structured interviews to share views on DCRs. An inclusive approach to 'family' was taken, and family members were recruited via local and national networks. A convenience sample of 13 family members were recruited and interviews conducted, audio-recorded, transcribed, and analysed thematically using the Structured Framework Technique.ResultsFamily members demonstrated varying levels of understanding regarding the existence, role, and function of DCRs. While some expressed concern that DCRs would not prevent continued drug use, all participants were in favour of DCR implementation due to a belief that DCRs could reduce harm, including saving lives, and facilitate future recovery from drug use. Participants highlighted challenges faced by people who use drugs in accessing treatment/services that could meet their needs. They identified that accessible and welcoming DCRs led by trusting and non-judgemental staff could help to meet unmet needs, including signposting to other services. Family members viewed DCRs as safe environments and highlighted how the existence of DCRs could reduce the constant worry that they had of risk of harm to their loved ones. Finally, family members emphasised the challenge of stigma associated with drug use. They believed that introduction of DCRs would help to reduce stigma and provide a signal that people who use drugs deserve safety and care.ConclusionsReporting the experience and views of family members makes a novel and valuable contribution to ongoing public debates surrounding DCRs. Their views can be used to inform the implementation of DCRs in Scotland but also relate well to the development of wider responses to drug-related harm and reduction of stigma experienced by people who use drugs in Scotland and beyond.

Dataset Information

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives.

Publications

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives.

Similar Datasets

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