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 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.

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 ‘Take more laxatives was their answer to everything’: A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care

2019 ◽  
Vol 34 (8) ◽  
pp. 1057-1066
Author(s):  
Felicity Hasson ◽  
Deborah Muldrew ◽  
Emma Carduff ◽  
Anne Finucane ◽  
Lisa Graham-Wisener ◽  
...  
Keyword(s):  
Palliative Care ◽  
Healthcare Professional ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Care Plan ◽  
Specialist Palliative Care ◽  
Structured Interviews ◽  
Lifestyle Modifications ◽  
Pharmacological Management ◽  
Professional Perspective

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

Care for delirium superimposed on dementia at an early stage

2020 ◽  
Keyword(s):  
Behavioral Problems ◽  
Healthcare Professionals ◽  
Early Stage ◽  
Good Care ◽  
Structured Interviews ◽  
Ethical Considerations ◽  
Appropriate Care ◽  
Adequate Care ◽  
Insight Into ◽  
Delirium Superimposed On Dementia

Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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 The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

scholarly journals The Lived Experiences of Stigmatization in the Process of HIV Status Disclosure among People Living with HIV in Taiwan

2021 ◽  
Vol 18 (10) ◽  
pp. 5089
Author(s):  
Chia-Hui Yu ◽  
Chu-Yu Huang ◽  
Nai-Ying Ko ◽  
Heng-Hsin Tung ◽  
Hui-Man Huang ◽  
...  
Keyword(s):  
Lived Experiences ◽  
Healthcare Professionals ◽  
Social Stigma ◽  
People Living With Hiv ◽  
Hiv Status ◽  
Structured Interviews ◽  
Two Phases ◽  
Hiv Status Disclosure ◽  
Living With Hiv ◽  
Status Disclosure

People living with HIV (PLWH) face social stigma which makes disclosure of HIV status difficult. The purpose of this descriptive qualitative study was to understand the lived experiences of stigmatization in the process of disease disclosure among PLWH in Taiwan. Analysis of the semi-structured interviews from 19 PLWH in Taiwan revealed two phases and six themes. Phase one “experiences before disclosure” involved three themes: “Struggles under the pressure of concealing the HIV Status,” “Torn between fear of unemployment/isolation and desire to protect closed ones,” and “Being forced to disclose the HIV status.” Phase two “experiences after disclosure” included three themes: “Receiving special considerations and requirements from school or work,” “Receiving differential treatments in life and when seeking medical care,” and “Stress relief and restart.” Healthcare professionals need to assess stigmatization in PLWH and develop individualized approaches to assist with the disease disclosure process.

scholarly journals Being parent of a child with congenital heart disease, what does it mean? A qualitative research

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Nahid Dehghan Nayeri ◽  
Zahra Roddehghan ◽  
Farzad Mahmoodi ◽  
Parvin Mahmoodi
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Life Experience ◽  
The Body ◽  
Spiritual Needs ◽  
Structured Interviews ◽  
Financial Condition ◽  
Data Saturation

Abstract Background Childbirth is one of the invaluable human experiences and is associated with parental happiness. However, when a child is born with congenital heart disease, it creates emotional and mental distress. As a result, it changes the parents’ response to their child birth. Exploring parenthood experiences add to the body of knowledge and reveal new perspectives. In order to make healthcare professionals able to support these children and their families, they should first understand the meaning of this phenomenon. This study aimed to explore the meaning of parenting a child with Congenital Heart Disease in Iran. Methods A qualitative study was adopted with a conventional content analysis approach and constant comparative analysis. Participants in this study were 17 parents, including parents of children with congenital heart disease who were selected by purposeful sampling method. Semi-structured interviews were used for data collection and continued to data saturation. Data were analyzed via MAXQDA 10 software. Results Four categories and twenty three subcategories emerged as meaning of parenting a child with Congenital Heart Disease. Categories include “Emotional breakdown”, “The catastrophic burden of care”, “Spiritual beliefs of parents” and “The hard road” Conclusions Fully understanding the life experience of these families will allow the implementation of targeted health interventions. Hence, by understanding the meaning of parenting a child with Congenital Heart Disease, healthcare professionals can asses parents emotional statues, information and spiritual needs, financial condition, insurance and marital status using CHD standards so that support is individualized, sensitive and time appropriate.

Experience and expression of social isolation by inner-city high-rise residents

2014 ◽  
Vol 17 (3) ◽  
pp. 151-166 ◽  
Author(s):  
Love M. Chile ◽  
Xavier M. Black ◽  
Carol Neill
Keyword(s):  
Older Adults ◽  
Inner City ◽  
Social Isolation ◽  
Age Groups ◽  
Evidence Base ◽  
Structured Interviews ◽  
Content Type ◽  
High Rise ◽  
Starting Point ◽  
Health And Social Care

Purpose – The purpose of this paper is to examine the significance of social isolation and the factors that create social isolation for residents of inner-city high-rise apartment communities. We critically examine how the physical environment and perceptions of safety in apartment buildings and the inner-city implicate the quality of interactions between residents and with their neighbourhood community. Design/methodology/approach – The authors used mixed-methods consisting of survey questionnaires supplemented by semi-structured interviews and focus group discussions using stratified random sampling to access predetermined key strata of inner-city high-rise resident population. Using coefficient of correlation we examine the significance of the association between social isolation, age and ethnicity amongst Auckland's inner-city high-rise residents. Findings – The authors found the experience and expression of social isolation consistent across all age groups, with highest correlation between functional social isolation and “being student”, and older adults (60+ years), length of tenure in current apartment and length of time residents have lived in the inner-city. Research limitations/implications – As a case study, we did not seek in this research to compare the experience and expressions of social isolation in different inner-city contexts, nor of inner-city high-rise residents in New Zealand and other countries, although these will be useful areas to explore in future studies. Practical implications – This study is a useful starting point to build evidence base for professionals working in health and social care services to develop interventions that will help reduce functional social isolation amongst young adults and older adults in inner-city high-rise apartments. This is particularly important as the inner-city population of older adults grow due to international migration, and sub-national shifts from suburbs to the inner-cities in response to governmental policies of urban consolidation. Originality/value – By identifying two forms of social isolation, namely functional and structural social isolation, we have extended previous analysis of social isolation and found that “living alone” or structural social isolation did not necessarily lead to functional social isolation. It also touched on the links between functional social isolation and self-efficacy of older adults, particularly those from immigrant backgrounds.

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