Dataset Information

Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study.

ABSTRACT:

Objective

To explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease (CKD).

Design

Secondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff were asked about local facilities, the value of conservative kidney management (CKM), when and with whom CKM was discussed and how CKM could be improved. Thematic analysis was employed to identify, characterise and report on themes that emerged from the data, focused on the specific issues experienced by people with dementia.

Setting

A purposive sample of nine UK renal centres differing in the scale of their CKM programmes.

Participants

Clinical directors of renal centres identified staff involved in CKM. Staff were asked to participate if they had experience of low clearance clinics or of caring for patients with advanced CKD (estimated glomerular filtration rate <20mL/min/1.73² or >65 years with end-stage kidney disease).

Results

Two overarching themes were identified: factors taken into consideration during decision-making, and the process of decision-making itself. Comorbidity, social support, quality of life and the feasibility of dialysis were reported as factors pertinent to clinicians' decisions regarding suitability. The majority of renal centres practised multidisciplinary 'best interests' decision-making for those without capacity. Attitudes to advance care planning were divided.

Conclusions

In view of the prevalence of cognitive impairment among those with advanced CKD, we suggest consideration of routine assessment of cognition and capacity. In the UK, dialysis is initiated and continued for individuals with dementia and services should be adapted to meet the needs of this population.

SUBMITTER: Scott J

PROVIDER: S-EPMC6252646 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study.

Scott Jemima J Owen-Smith Amanda A Tonkin-Crine Sarah S Rayner Hugh H Roderick Paul P Okamoto Ikumi I Leydon Geraldine G Caskey Fergus F Methven Shona S

BMJ open 20181112 11

<h4>Objective</h4>To explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease (CKD).<h4>Design</h4>Secondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff wer ...[more]

PMID: 30420346

Similar Datasets

Project description:OBJECTIVE:To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. DESIGN:A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. SETTING:Community settings and nursing homes in the Netherlands. PARTICIPANTS:19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). RESULTS:The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. CONCLUSION:Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

Project description:ObjectivesTo explore older people's perspectives and experiences with shared decision-making (SDM) about medication for cardiovascular disease (CVD) prevention.Design, setting and participantsSemi-structured interviews with 30 general practice patients aged 75 years and older in New South Wales, Australia, who had elevated CVD risk factors (blood pressure, cholesterol) or had received CVD-related lifestyle advice. Data were analysed by multiple researchers using Framework analysis.ResultsTwenty eight participants out of 30 were on CVD prevention medication, half with established CVD. We outlined patient experiences using the four steps of the SDM process, identifying key barriers and challenges: Step 1. Choice awareness: taking medication for CVD prevention was generally not recognised as a decision requiring patient input; Step 2. Discuss benefits/harms options: CVD prevention poorly understood with emphasis on benefits; Step 3. Explore preferences: goals, values and preferences (eg, length of life vs quality of life, reducing disease burden vs risk reduction) varied widely but generally not discussed with the general practitioner; Step 4. Making the decision: overall preference for directive approach, but some patients wanted more active involvement. Themes were similar across primary and secondary CVD prevention, different levels of self-reported health and people on and off medication.ConclusionsResults demonstrate how older participants vary widely in their health goals and preferences for treatment outcomes, suggesting that CVD prevention decisions are preference sensitive. Combined with the fact that the vast majority of participants were taking medications, and few understood the aims and potential benefits and harms of CVD prevention, it seems that older patients are not always making an informed decision. Our findings highlight potentially modifiable barriers to greater participation of older people in SDM about CVD prevention medication and prevention in general.

Project description:ObjectivesLittle is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.DesignCross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.SettingPatients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.ParticipantsPurposeful sample of 10 patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).ResultsFour themes were identified: (1) leading to the initial consultation-HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information-informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care-patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment-there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.ConclusionsAlthough patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.

Project description:BackgroundThe UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer's disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the 'spatial intervention study' of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent.MethodsPeople with a suspected or confirmed diagnosis of dementia in Alzheimer's disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed.DiscussionThe results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice.Trial registrationDRKS00030799 .

Project description:Introduction: Health systems in many different countries have increasingly been reorienting the delivery of dementia care to home and community care settings. This paper provides information on how health and social care professionals (HSCPs) in Ireland make decisions on resource allocation for people with dementia living at home and how resource constraints affect their decisions and choices. Methods: A balance of care approach was used to assess resource allocation across six dementia case types, from low to high needs. Workshops were held with 24 HSCPs from multiple disciplines. Participants allocated services in two scenarios: allocation with and without a budget constraint. Nominal group technique was used to structure discussions around resource allocation in both scenarios. Thematic analysis was applied to analyse the qualitative data using a general inductive approach. Results: The following themes influenced allocative deliberations: whose needs are being met; what needs are identified; decision making context; decision making process; and allocation outcomes. Participants were proficient in making decisions, using 'decision rules' or heuristics to help them make decisions under fixed budget rules and sticking to conventional provision when constraints were in place. Conclusions: Freedom from a budget constraint allowed HSCPs to consider a broader range of services and to take a more expansive view on what needs should be considered, with a particular emphasis on adopting a proactive, preventative approach to the allocation of resources. The effect of the budget constraint overall was to narrow all considerations, using heuristics to limit the type of needs addressed and the range of services and supports provided. The consequences were a largely reactive, less personalised system of care. The findings emphasise the need for an integrated and comprehensive assessment process that is more concerned with individualised responses rather than relying on existing models of care alone.

Project description:Despite an increased awareness of shared decision-making (SDM) and its prominent position on the health policy agenda, its implementation in routine care remains a challenge in Germany. In order to overcome this challenge, it is important to understand healthcare providers' views regarding SDM and to take their perspectives and opinions into account in the development of an implementation program. The present study aimed at exploring a) the attitudes of different healthcare providers regarding SDM in oncology and b) their experiences with treatment decisions in daily practice.A qualitative study was conducted using focus groups and individual interviews with different healthcare providers at the University Cancer Center Hamburg, Germany. Focus groups and interviews were audio-recorded, transcribed and analyzed using conventional content analysis and descriptive statistics.N = 4 focus groups with a total of N = 25 participants and N = 17 individual interviews were conducted. Attitudes regarding SDM varied greatly between the different participants, especially concerning the definition of SDM, the attitude towards the degree of patient involvement in decision-making and assumptions about when SDM should take place. Experiences on how treatment decisions are currently made varied. Negative experiences included time and structural constraints, and a lack of (multidisciplinary) communication. Positive experiences comprised informed patients, involvement of relatives and a good physician-patient relationship.The results show that German healthcare providers in oncology have a range of attitudes that currently function as barriers towards the implementation of SDM. Also, their experiences on how decision-making is currently done reveal difficulties in actively involving patients in decision-making processes. It will be crucial to take these attitudes and experiences seriously and to subsequently disentangle existing misconceptions in future implementation programs.

Project description:ObjectiveTo identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.DesignQualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.SettingCommunity settings in London.Participants43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.ResultsFamily carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.ConclusionsThe following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

Dataset Information

Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study.

Objective

Design

Setting

Participants

Results

Conclusions

Publications

Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets