Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

scholarly journals Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

2018 ◽  
Vol 40 (5) ◽  
pp. 944-965 ◽  
Author(s):  
Lorna McWilliams ◽  
Caroline Swarbrick ◽  
Janelle Yorke ◽  
Lorraine Burgess ◽  
Carole Farrell ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
Treatment Options ◽  
Treatment Decision ◽  
Vital Role ◽  
Family Carers ◽  
Structured Interviews ◽  
Cancer Symptoms ◽  
People With Dementia ◽  
Diagnosis Of Cancer

AbstractThe risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

scholarly journals Late effects of cancer (treatment) and work ability: guidance by managers and professionals

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ingrid G. Boelhouwer ◽  
Willemijn Vermeer ◽  
Tinka van Vuuren
Keyword(s):  
Social Support ◽  
Cancer Treatment ◽  
Work Ability ◽  
Late Effects ◽  
Cancer Recurrence ◽  
Organisational Culture ◽  
Job Resources ◽  
Structured Interviews ◽  
Starting Point ◽  
Cognitive Problems

Abstract Background The prevalence of the group of workers that had a cancer diagnosis in the past is growing. These workers may still be confronted with late effects of cancer (treatment) possibly affecting their work ability. As little is known about the guidance of this group, the aim of this study was to explore the experiences and ideas of managers and professionals about the guidance of these workers in the case of late effects of cancer (treatment). Given the positive associations with work ability of the job resources autonomy, social support by colleagues and an open organisational culture found in several quantitative studies, these job resources were also discussed. Further ideas about the influences of other factors and points of attention in the guidance of this group of workers were explored. Methods Semi-structured interviews were conducted with managers (n = 11) and professionals (n = 47). Data-collection was from November 2019 to June 2020. The data were coded and analysed using directed content analyses. Results The late effects of cancer or cancer treatment discussed were physical problems, fatigue, cognitive problems, anxiety for cancer recurrence, and a different view of life. The self-employed have less options for guidance but may struggle with late effects affecting work ability in the same way as the salaried. Late effects may affect work ability and various approaches have been described. Autonomy, social support of colleagues and an open organisational culture were regarded as beneficial. It was indicated that interventions need to be tailor-made and created in dialogue with the worker. Conclusions Especially with respect to cognitive problems and fatigue, guidance sometimes turned out to be complicated. In general, the importance of psychological safety to be open about late effects that affect work ability was emphasized. Moreover, it is important to take the perspective of the worker as the starting point and explore the possibilities together with the worker. Autonomy is an important factor in general, and a factor that must always be monitored when adjustments in work are considered. There is a lot of experience, but there are still gaps in knowledge and opportunities for more knowledge sharing.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

Working with older people with dementia: motivations and demotivations among health carers

2019 ◽  
Vol 23 (3) ◽  
pp. 117-126
Author(s):  
Sara Cheloni ◽  
Anthea Tinker
Keyword(s):  
Healthcare Professionals ◽  
Hospital Setting ◽  
Personal Characteristics ◽  
Intention To Leave ◽  
Working Environment ◽  
Staff Retention ◽  
Structured Interviews ◽  
Content Type ◽  
Staff Motivation ◽  
People With Dementia

Purpose Motivation is central to the ongoing professional development, performance and retention of healthcare workers. Despite the increasing prevalence of people with dementia (PwD) and the associated demand for geriatric nurses, there exists a paradoxical shortage. The purpose of this paper is to explore the motivation and demotivation of healthcare professionals for working with older PwD, challenges faced, factors influencing intention to leave the field of work and methods to enhance staff motivation to continue working with this group. Design/methodology/approach This grounded-theory study used thematic analysis to synthesise data from 13 semi-structured interviews relating to the motivating and demotivating factors of healthcare professionals (nurses and healthcare assistants) for working with older PwD in a hospital setting. Findings Staff were motivated by previous personal experiences, personal characteristics and the fulfilment of the carer–patient relationship. Conversely, staff were mostly demotivated by organisational and working environment factors (e.g. poor leadership characteristics, inadequate staffing levels, lack of development opportunities), negatively influencing their intention to remain in employment. Research limitations/implications The generalisability of the results is limited by the size of the sample. Different organisational strategies/interventions (i.e. support, training, recognition and rewards) are necessary to nurture staff motivation, improve retention, create positive working environments and enhance patient care. Originality/value This study offers numerous ways in which to address factors contributing to demotivation in working with PwD, thereby helping to improve staff retention and support the needs of a growing population.

scholarly journals Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e024397 ◽  
Author(s):  
Charlotte Kenten ◽  
Nothando Ngwenya ◽  
Faith Gibson ◽  
Mary Flatley ◽  
Louise Jones ◽  
...  
Keyword(s):  
Young Adults ◽  
Healthcare Professionals ◽  
Care Delivery ◽  
Family Members ◽  
Family Carers ◽  
Structured Interviews ◽  
Multiple Sources ◽  
Programme Theory ◽  
Realist Analysis ◽  
Palliative Care Services

ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care.DesignWe used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.SettingThree cancer centres and associated palliative care services across England.ParticipantsWe aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years and 30 people 25–40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops.ResultsData were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.ConclusionsCurrent care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16–40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

scholarly journals The challenge pathway: A mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (Innovative practice)

Dementia ◽  
2017 ◽  
Vol 17 (2) ◽  
pp. 252-257 ◽  
Author(s):  
Emily Harrop ◽  
Annmarie Nelson ◽  
Helen Rees ◽  
Dylan Harris ◽  
Simon Noble
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Carers ◽  
Care Model ◽  
Structured Interviews ◽  
Project Staff ◽  
Mixed Methods Evaluation ◽  
People With Dementia ◽  
Audit Data

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care.

What contributes to family carers’ decision to transition towards palliative-oriented care for their relatives in nursing homes? Qualitative findings from bereaved family carers’ experiences

2020 ◽  
pp. 1-9 ◽  
Author(s):  
Silvia Gonella ◽  
Marco Clari ◽  
Ines Basso ◽  
Paola Di Giulio
Keyword(s):  
Healthcare Professionals ◽  
A Priori ◽  
Care Plan ◽  
Gradual Transition ◽  
Family Carers ◽  
Structured Interviews ◽  
Starting Point ◽  
Swallowing Problems ◽  
Palliative Care Services ◽  
Trigger Events

Abstract Objectives Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs’ decision to transition towards palliative-oriented care for their relatives in NHs. Methods This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes. Results FCs reported four types of “trigger events” that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A “resident-centered environment” helped FCs recognize trigger events and “raise awareness of the possibility of death”; however, the “need for reassurance” was pivotal to a “gradual transition towards palliative-oriented care”. When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care. Significance of results Trigger events represent an opportunity to discuss residents’ prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.

scholarly journals Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Helen Close ◽  
Kamal Sidhu ◽  
Hazel Genn ◽  
Jonathan Ling ◽  
Colette Hawkins
Keyword(s):  
Social Welfare ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Legal Issues ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
North East ◽  
Day Services ◽  
Key Barrier ◽  
Psychological Benefit

Abstract Background Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include planning ahead, for example, making a Lasting Power of Attorney. However, the nature, impact and management of legal needs in the context of end of life care are not known. This study investigated these from the perspectives of patients and carers. Methods Patients, with estimated prognosis 12 months or less, and carers were recruited from two sites: day services within an urban hospice and primary care in an area of deprivation in North-East England. Semi-structured interviews explored the nature and impact of legal issues, access to appropriate support and unmet needs. Thematic analysis of data was undertaken. Results Twenty-seven interviews were conducted with 14 patients (10/14 hospice) and 13 carers (7/13 hospice). Five were patient-carer dyads. All participants had experienced problems raising legal issues, which generated significant practical and psychological challenges. All had struggled to access support for social welfare legal issues, describing not knowing what, who, or when to ask for help. All participants accessed some support, however routes, timing and issues addressed were variable. Facilitators included serendipitous triggers and informed healthcare professionals who offered support directly, or signposted elsewhere. A range of professionals and organisations provided support; resolution of issues conferred substantial benefit. The majority of participants identified unresolved legal issues, predominantly related to planning ahead. The challenge of facing increased dependency and death proved a key barrier to this; informed and compassionate healthcare professionals were important enablers. Conclusion Everyday legal needs are a common and distressing consequence of life-limiting illness, affecting patients and carers alike. This study identified inconsistent approaches but practical and psychological benefit when needs were met. Healthcare professionals were central to meeting social welfare legal needs and facilitating effective planning, with important roles as ‘critical noticers’, trusted intermediaries and compassionate communicators. Increased awareness, clearer pathways to support and closer service integration are needed to meet legal needs as a component of holistic care.

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