Context: Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient’s caregiving “social convoy” (i.e. family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care.
Objectives: Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy.
Methods: Grounded theory approach using semi-structured interviews (N=81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding.
Results: Thematic results aligned with the human centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human centered design process and corresponding theme included: (1) Empathy: Patient, Caregiver, and Provider Experience reports participants’ experience with managing serious illness, caregiving, social support, and technology use. (2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants’ perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. (3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains.
Conclusion: Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy.
Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
Although there is an increased need for delivery of bereavement care, many health care providers in acute care hospital settings feel inadequately prepared to deliver quality grief support, have lack of time, and have inexperience in provision of bereavement care. As a result, although families would like health care providers to offer bereavement support, they are inadequately trained and susceptible to burnout, resulting in families not having their needs met. The purpose of this qualitative study was to uncover the social process occurring in a bereavement education workshop titled "How to Care, What to Say" offered to health care providers. The goal of the workshop was to improve delivery of care for the dying and their family by providing holistic care to the family before, during, and after the death of a loved one. Past grief workshop participants who cared for the bereaved were interviewed, and data were analyzed and synthesized using constructivist grounded theory. Individual interviews and focus group data revealed participants' perceptions, learnings, and potential integration of the workshop into practice. The overarching theory of providing bereavement care that emerged from the data is "a relational process of understanding knowledge, self-awareness, moral responsibilities, and advancing grief competencies of providing holistic grief support."
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Patients with dementia may be discharged from hospice if their condition stabilizes. The loss of professional support and an already complex grief process needs careful attention. A live discharge presents a unique experience for each hospice patient, caregiver, and hospice team, which varies from traditional bereavement theories used to describe the grieving process. This article explores live discharge from hospice for caregivers of adults with dementia through a theoretical lens of Symbolic Interactionism (SI) and Attachment Theory (AT). The theories of SI and AT support and assist in understanding the experience of caregivers who lose hospice support due to ineligibility. In addition, caregivers watch the gradual deterioration and psychological loss of someone with dementia while they remain alive described as an ambiguous loss. Ambiguous loss as a subset of traditional bereavement theories provides a framework for this exploration and provides a relevant illustration of the complex needs. This article will conclude with implications for social work practice. It is important for hospice clinicians to be aware of current termination practices necessary to manage appropriate attachments, support the symbolic meaning of the hospice experience, validate the ambiguous losses, and maintain a sense of hope through a live discharge from hospice.
Anticipatory grief is a concept commonly used by researchers and clinicians when talking about the experience before the death of a loved one. This article offers a critical perspective on the disciplinary, theoretical and philosophical foundations of three distinct and frequently used conceptualisations of anticipatory grief: Lindemann's, Rando's and one derived from sociology. Lindemann's perspective conceived anticipatory grief as an inevitable component of the grieving experience in the situation of impending death. Rando's perspective views anticipatory grief as a multidimensional that facilitates post-mortem mourning. The third perspective, offered by sociologists, defines anticipatory grief as an experience highly influenced by the social context of the individual. This review explains how these different perspectives influence research and concludes with a reflection for potential future research.
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base.
METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds.
RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base.
CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality.
TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
CONTEXT: Opportunities for the use of palliative care services are missed in African-American communities, despite Level I evidence demonstrating their benefits.
OBJECTIVE: Single-institution, stakeholder-engaged study to design an intervention to increase palliative care use in African-American communities.
METHODS: Two-phased qualitative research design guided by the Behavior Change Wheel (BCW) and Theoretical Domains Framework (TDF) models. In phase one, focus group sessions were conducted to identify barriers and facilitators of palliative care use, and the viability of community health workers (CHWs) as a solution. After applying the BCW and TDF to data gathered from phase one, phase two consisted of a stakeholder meeting to select intervention content and prioritize modes of delivery.
RESULTS: A total of 15 stakeholders participated in our study. Target behaviors identified were for patients to gain knowledge about benefits of palliative care, physicians to begin palliative care discussions earlier in treatment, and to improve patient-physician interpersonal communication. The intervention was designed to improve patient capability, physician capability, patient motivation, physician motivation, and increase patient opportunities to use palliative care services. Strategies to change patient and physician behaviors were all facilitated by CHWs and included: creation and dissemination of brochures about palliative care to patients, empowerment and activation of patients to initiate goals of care discussions, outreach to community churches, and expanding patient social support.
CONCLUSION: Use of a theory-based approach to facilitate the implementation of a multi-component strategy provided a comprehensive means of identifying relevant barriers and enablers of CHWs as an agent to increase palliative care use in African-American communities.
L'auteur cherche à répondre à la souffrance psychique et existentielle de ses patients. Pour se faire, il utilise les théories de Viktor Frankl car ce psychiatre a consacré toute sa carrière à une recherche empirique sur le sens de la vie.
AIMS: To investigate the end-of-life nursing-care practice process in long-term care settings for older adults in Japan.
DESIGN: A qualitative study based on grounded theory developed by Corbin and Strauss.
METHODS: Sampling, interviewing and analysis were performed cyclically, with results for each stage used as the basis for data collection and next-stage analysis decisions. Semi-structured interviews were conducted from March 2015 - March 2019 with 22 nurses from eight long-term care settings. Analysis was performed using coding, constant comparison and emerging categories.
RESULTS: The core category, "guiding the rebuilt care community to assist the dying resident" comprised five categories: "assessing the resident's stage," "harmonizing care with the dying process," "rebuilding a care community," "helping community members care for the resident," and "encouraging community members to give meaning." The participants were the integral members of the care community, as well as guides who helped and encouraged the community.
CONCLUSION: Results revealed the holistic process of end-of-life nursing-care practice in Japan. Nurses aimed to allow long-term care residents to die as social human beings. Such practice requires nursing expertise, health-care skills and leadership qualities to build and serve care communities. Nurses must also consider residents' uncertainties and vulnerabilities as well as their cultural backgrounds.
AIMS AND OBJECTIVES: To explore how Flemish nurses working in hospitals and home care experience their involvement in the care of patients requesting euthanasia 15 years after the legalisation of euthanasia.
BACKGROUND: Euthanasia was legalised in Belgium in 2002. Despite prior research that charted the experiences of nurses in euthanasia care before and right after legalisation in Belgium, it remains unclear how Flemish nurses currently, 15 years after the legalisation, experience their involvement.
DESIGN: A grounded theory design, using semi-structured in-depth interviews.
METHODS: We interviewed 26 nurses working in hospitals or in home care, who had experience with caring for patients requesting euthanasia. Data were collected using a purposive sample and then a snowball sample. Data collection and data analysis were conducted simultaneously. Data were analysed by using the Qualitative Analysis Guide of Leuven. The study adhered to the COREQ guidelines.
RESULTS: Caring for a patient requesting euthanasia continues to be an intense experience characterized by ambivalence. The nature of euthanasia itself contributes to the intensity of this care process. The nurses described euthanasia as something unnatural and planned that generated many questions and doubts. Nevertheless, most interviewees stated that they were able to contribute to a dignified end of life and make a difference, giving them a profound feeling of professional fulfilment. However, when nurses were not able to contribute to good euthanasia care, they struggled with strong negative feelings and frustrations.
CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Although the results suggest some subtle shifts in nurses' experiences over time, they do not indicate perceptions of euthanasia as a normal practice by the nurses involved. Research on the perceptions of nurses who have strong negative experiences or conscientious objections is needed to further clarify nurses' ethical positions on euthanasia care.
BACKGROUND: Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer's expressed interest and actual participation in a physical activity intervention.
AIM: To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach.
DESIGN: Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews.
SETTING/PARTICIPANTS: A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada.
FINDINGS: Maintaining their responsibilities, no matter how small, was the prime motive for participants' behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms.
CONCLUSION: This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer.
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.
Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.
Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.
Setting/Subjects: we interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.
Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.
Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
BACKGROUND: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear.
AIM: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses.
DESIGN: A constructivist qualitative grounded theory study was conducted.
SETTING/PARTICIPANTS: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center.
RESULTS: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door-creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust-establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions-addressing patients' assumptions about palliative care as signifying death; and advocating with oncologists-seeding the process of referral by bringing patients' concerns forward.
CONCLUSION: Oncology nurses play a central role in "brokering" the introduction of early palliative care; this process is supported by their relational proximity to patients and their location "in between" the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.
Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
Aims: Families were interviewed as a quality improvement assessment for palliative and supportive care services for children.
Methods: This exploratory qualitative study of family members of children with cancer was conducted at an academic hospital in central South Africa and a grounded theory approach was used. Face-to-face interviews using a semi-structured interview guide were conducted with 16 family members of 16 children.
Findings: Parents felt supported by the healthcare professionals who were caring for their child, but several shortcomings were identified. These included erratic psychosocial support, minimal financial support and poor parental access to basic needs and food provision, preventable errors in procedures and a lack of support available for siblings. It is also worth noting that healthcare professionals did not always seem sufficiently equipped to attend to palliative care patients.
Conclusion: Strategies to improve supportive and palliative care are needed for children with cancer and their families in a hospital setting. The interviews identified a number of themes and current shortcomings that should be considered to improve services.
This article uses grounded theory methodology to analyze in-depth interviews conducted with mourners who used social networking sites during bereavement. The social media mourning (SMM) model outlines how social networking sites are used to grieve using one or more of the following: (a) one-way communication, (b) two-way communication, and (c) immortality communication. The model indicates causal conditions of SMM: (a) sharing information with family or friends and (sometimes) beginning a dialog, (b) discussing death with others mourning, (c) discussing death with a broader mourning community, and (d) commemorating and continuing connection to the deceased. The article includes actions and consequences associated with SMM and suggests several ways in which SMM changes or influences the bereavement process.
OBJECTIVES: To understand the meaning attributed by the nurse to the management of nursing care to the person hospitalized due to clinical complications caused by AIDS; to analyze actions related to palliative care; and to construct a theoretical matrix regarding the management of nursing care.
METHOD: Qualitative, exploratory research, guided by the Grounded Theory. Seven nurses and ten nursing technicians were interviewed between May and September 2015, in a university hospital, located in Rio de Janeiro State, Brazil.
RESULTS: Five categories that covered the profile of the hospitalized person, palliative care, intervening conditions for care management, the need for professional qualification, and other aspects to better organize and manage care, including conflict management arose.
FINAL CONSIDERATIONS: The theoretical matrix values the quality of life, the need to understand the flow of care to avoid readmissions and not adherence to medications, requiring new research in the area, such as implementation.
In this Australian, constructivist grounded theory study, we undertook in-depth interviews with 11 dying people and 8 caregivers to examine their perspectives on role relations at end-of-life. We found that situations of role alignment between dying people and their family and friends support positive relational and practical outcomes, whereas role mismatch can cause considerable distress. Factors contributing to role mismatch at end-of-life were: dying people and their caregivers’ efforts to shield each other from emotional harm; fear of social exclusion; and unwanted focus on the dying identity. Our findings highlight a need for flexibility and adaptability in end-of-life role relations.