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.

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.

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 Cancer patients’ family members’ experiences of the information and support provided by healthcare professionals

2018 ◽  
Vol 78 (4) ◽  
pp. 416-427 ◽  
Author(s):  
Jacqueline F Lavallée ◽  
Sarah Grogan ◽  
Carol A Austin
Keyword(s):  
Cancer Patients ◽  
Information Acquisition ◽  
Healthcare Professionals ◽  
Family Members ◽  
Sources Of Information ◽  
Structured Interviews ◽  
Loved One ◽  
Critical Realist ◽  
Sensitive Topics ◽  
Data Collection And Analysis

Objectives: This qualitative study aimed to understand the experiences, information and support needs of family members of cancer patients and their satisfaction with the services provided to them as a family member. Design: Inductive qualitative and critical realist approach to data collection and analysis. Methods: Purposive sampling was used to identify family members of cancer patients. We conducted semi-structured interviews with 10 participants by means of email, enabling us to explore sensitive topics at a pace appropriate for each participant and gain rich sources of information. We analysed the data using an inductive thematic approach. Results: Three superordinate themes were identified: information acquisition, seeking support and family members’ experiences of cancer. Needs were high, and a complex relationship between information and support was apparent. Many participants felt dissatisfied with the support and information received as it was sometimes inconsistent, incorrect or vague, and some reported deterioration in their own health as a consequence. Online communities were reported as being informative and supportive as the participants felt they could relate to the firsthand experience of the other members. Conclusion: Improving healthcare professionals’ awareness of the type of information and support the family members need is vital for both family members and patients. There is a need for the development of educational and psychological interventions to assist family members in coping when a loved one is diagnosed with cancer, is undergoing or recovering from treatment, or is receiving palliative care.

scholarly journals Transformation of primary care during the COVID-19 pandemic: experiences of healthcare professionals in eight European countries

2021 ◽  
pp. BJGP.2020.1112
Author(s):  
Marta Wanat ◽  
Melanie Hoste ◽  
Nina Gobat ◽  
Marilena Anastasaki ◽  
Femke Boehmer ◽  
...  
Keyword(s):  
Primary Care ◽  
Secondary Care ◽  
Healthcare Professionals ◽  
Care Delivery ◽  
Practical Training ◽  
Structured Interviews ◽  
New Ways Of Working ◽  
Primary Care Delivery ◽  
Local Primary Care ◽  
Remote Care

Background: Primary care has a crucial role in responding to the COVID-19 pandemic as the first point of patient care and gatekeeper to secondary care. Qualitative studies exploring the experiences of healthcare professionals during the COVID-19 pandemic have mainly focused on secondary care. Aim: To understand the experiences of European PCPs working during the first peak of the COVID-19 pandemic. Design and Setting: An exploratory qualitative study, using semi-structured interviews in primary care in England, Belgium, the Netherlands, Ireland, Germany, Poland, Greece and Sweden, between April and July 2020. Method: Interviews were audio recorded, transcribed and analysed using a combination of inductive and deductive thematic analysis techniques. Results: Eighty interviews were conducted with PCPs. PCPs had to make their own decisions on how to rapidly transform services in relation to COVID-19 and non-COVID-19 care. Despite being overwhelmed with guidance, they often lacked access to practical training. Consequently, PCPs turned to their colleagues for moral support and information to try to quickly adjust to new ways of working, including remote care, and deal with uncertainty. Conclusion: PCPs rapidly transformed primary care delivery despite a number of challenges. Representation of primary care at policy level and engagement with local primary care champions will facilitate easy and coordinated access to practical information on how to adapt services, ongoing training and access to appropriate mental health support services for PCPs. Preservation of autonomy and responsiveness of primary care are critical to preserve the ability for rapid transformation in any future crisis of care delivery.

scholarly journals Healthcare professionals’ experiences of inter-professional collaboration during patient’s transfers between care settings in palliative care: A focus group study

2020 ◽  
pp. 026921632096874
Author(s):  
Fien Mertens ◽  
Zoë Debrulle ◽  
Evelyn Lindskog ◽  
Luc Deliens ◽  
Myriam Deveugele ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Group ◽  
Home Care ◽  
Continuity Of Care ◽  
Healthcare Professionals ◽  
Family Members ◽  
Professional Collaboration ◽  
Group Discussions ◽  
Care Services ◽  
Palliative Care Services

Background: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved. Aim: To explore healthcare professionals’ experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members. Design: Qualitative design, including focus group discussions. Setting/participants: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital’s palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals ( n = 53) from different care settings. Results: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement. A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals. Conclusion: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.

scholarly journals Humanization in the Intensive Care: perception of family and healthcare professionals

2017 ◽  
Vol 70 (5) ◽  
pp. 1040-1047 ◽  
Author(s):  
Flavia Feron Luiz ◽  
Rita Catalina Aquino Caregnato ◽  
Márcia Rosa da Costa
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Public Hospital ◽  
Healthcare Professionals ◽  
Family Members ◽  
Structured Interviews ◽  
Porto Alegre ◽  
Level 3 ◽  
Objective Understanding ◽  
Care Perception

ABSTRACT Objective: Understanding perceptions of family members and healthcare professionals about humanization at the Intensive Care Unit (ICU) to direct it to an educational action. Method: Exploratory descriptive and qualitative study conducted in an ICU level 3 of a public hospital in Porto Alegre, RS, Brazil, with fourteen subjects, eight family members and six healthcare professionals. Data collection carried out through semi-structured interviews and focus group. Content Analysis was used. Results: Emerged categories were: welcoming; communication; ethical and sensible professionalism; unfavorable aspects; perception on humanization; and religiosity/spirituality. Final considerations: Although the subjects have expressed their perceptions about humanization in different ways, both groups pointed out the same needs and priorities to improve humanization in Intensive Care. From the results, we created a reflective manual of humanizing assistance practices for professionals, a board to facilitate communication of these professionals with patients and a guideline book for family members.

scholarly journals 210 - Are visits allowed? The impact of the COVID-19 pandemic on care home visitation and care delivery in the UK

2021 ◽  
Vol 33 (S1) ◽  
pp. 12-13
Author(s):  
Clarissa Giebel ◽  
Kerry Hanna ◽  
Jacqueline Cannon ◽  
Hilary Tetlow ◽  
Paul Marlow ◽  
...  
Keyword(s):  
Research Team ◽  
Care Delivery ◽  
Care Home ◽  
Family Members ◽  
Care Homes ◽  
Family Carers ◽  
Care Home Staff ◽  
The Uk ◽  
The Impact

Background:COVID-19 has caused the sudden closure of care homes to the outside world, to stem the virus from infecting some of the most vulnerable groups of people – older adults residing in care homes. With very little knowledge to date, we aimed to explore the impact of COVID-19 on care provision and visits in care homes from staff and family members’ perspectives.Methods:Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or Zoom. Participants took part in a semi-structured remote interview. Baseline data were collected between October and November 2020, and follow-up interviews were collected throughout March 2021. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input.Results:42 participants (26 family carers and 16 care home staff) took part in the baseline interviews, and 20 purposefully sampled participants (11 family carers and 9 care home staff) were followed up. Prior to vaccination roll out in the UK, at baseline, family carers expressed concern about a lack of clear guidance throughout the pandemic, with care homes delivering care differently and disparities noted in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well-being of their relative. Data on follow-up interviews are still being analysed.Conclusions:This is the first empirical evidence to show how the pandemic has caused severe difficulties in providing adequate care for care home residents, with not only residents, but also care home staff and family carers being negatively affected. Follow-up data will shed light onto the impact of vaccination and eased visitation rights put in place since March 2021 on care delivery and connections between family carers and residents.

scholarly journals Easier Said Than Done: Healthcare Professionals’ Barriers to the Provision of Patient-Centered Primary Care to Patients with Multimorbidity

2021 ◽  
Vol 18 (11) ◽  
pp. 6057
Author(s):  
Sanne J. Kuipers ◽  
Anna P. Nieboer ◽  
Jane M. Cramm
Keyword(s):  
Primary Care ◽  
Nurse Practitioners ◽  
Financial Incentives ◽  
Healthcare Professionals ◽  
Time Pressure ◽  
Care Delivery ◽  
Structured Interviews ◽  
Implementation Barriers ◽  
Patient Centered ◽  
Primary Care Delivery

Patient-centered care (PCC) has the potential to entail tailored primary care delivery according to the needs of patients with multimorbidity (two or more co-existing chronic conditions). To make primary care for these patients more patient centered, insight on healthcare professionals’ perceived PCC implementation barriers is needed. In this study, healthcare professionals’ perceived barriers to primary PCC delivery to patients with multimorbidity were investigated using a constructivist qualitative design based on semi-structured interviews with nine general and nurse practitioners from seven general practices in the Netherlands. Purposive sampling was used, and the interview content was analyzed to generate themes representing experienced barriers. Barriers were identified in all eight PCC dimensions (patient preferences, information and education, access to care, physical comfort, emotional support, family and friends, continuity and transition, and coordination of care). They include difficulties achieving mutual understanding between patients and healthcare professionals, professionals’ lack of training and education in new skills, data protection laws that impede adequate documentation and information sharing, time pressure, and conflicting financial incentives. These barriers pose true challenges to effective, sustainable PCC implementation at the patient, organizational, and national levels. Further improvement of primary care delivery to patients with multimorbidity is needed to overcome these barriers.

Continuum of Care Following Sports-Related Concussion

2020 ◽  
Vol 29 (3) ◽  
pp. 1389-1403
Author(s):  
Jessica Brown ◽  
Kelly Knollman-Porter
Keyword(s):  
Young Adults ◽  
Life Span ◽  
Sports Injuries ◽  
Continuum Of Care ◽  
Medical Professional ◽  
Structured Interviews ◽  
Youth Athletes ◽  
Speech Language Pathologist ◽  
History Of ◽  
Injury Reporting

Purpose Although guidelines have changed regarding federally mandated concussion practices since their inception, little is known regarding the implementation of such guidelines and the resultant continuum of care for youth athletes participating in recreational or organized sports who incur concussions. Furthermore, data regarding the role of speech-language pathologists in the historic postconcussion care are lacking. Therefore, the purpose of this retrospective study was to investigate the experiences of young adults with history of sports-related concussion as it related to injury reporting and received follow-up care. Method Participants included 13 young adults with history of at least one sports-related concussion across their life span. We implemented a mixed-methods design to collect both quantitative and qualitative information through structured interviews. Participants reported experiencing 42 concussions across the life span—26 subsequent to sports injuries. Results Twenty-three concussions were reported to a parent or medical professional, 14 resulted in a formal diagnosis, and participants received initial medical care for only 10 of the incidents and treatment or services on only two occasions. Participants reported concussions to an athletic trainer least frequently and to parents most frequently. Participants commented that previous experience with concussion reduced the need for seeking treatment or that they were unaware treatments or supports existed postconcussion. Only one concussion incident resulted in the care from a speech-language pathologist. Conclusion The results of the study reported herein shed light on the fidelity of sports-related concussion care management across time. Subsequently, we suggest guidelines related to continuum of care from injury to individualized therapy.

SUSTAINING FAMILY ROUTINES AFTER TRANSITIONING INTO PARENTHOOD: COUPLES’ PERCEPTIONS OF ASSISTING FACTORS

2016 ◽  
Vol 28 (1) ◽  
pp. 3-17
Author(s):  
Christine De Goede ◽  
Abraham P Greeff
Keyword(s):  
Low Income ◽  
Transition To Parenthood ◽  
Specific Problem ◽  
Family Members ◽  
Major Theme ◽  
Structured Interviews ◽  
Theory Analysis ◽  
Family Routines ◽  
Temporal Complexity ◽  
Context Specific

The aim of this qualitative study was to explore what assists couples in sustaining family routines after the transition to parenthood. Participants were recruited from two day-care centres in Cape Town, South Africa. In-depth, semi-structured interviews were conducted with 10 couples, mostly from low-income households, who had gone through this transition between one and four years previously. Grounded theory analysis revealed one major theme, Factors that decrease task and temporal complexity, with seven subthemes: Support from the wider family network; Couple cooperation and tag-teaming; Planning and pre-empting future problems; Adhering to schedules; Facilitative characteristics and skills of individual family members; Parents’ sense of commitment and responsibility towards family members; and idiosyncratic accommodations. Results underscore the need for professionals to help parents gain support from relatives; strengthen partner teamwork; foster schedule consistency; improve skills such as planning; foster their caretaker self-concepts; and facilitate context-specific problem-solving.

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