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Background: Compassionate communities have been put forward as a promising model for community-based support for people facing serious illness, caregiving, dying, and loss. In particular, educational institutions are increasingly acknowledged as potential settings to function as compassionate schools and compassionate workplaces, cultivating acceptance and validation of these experiences beyond the university setting. Objectives: This paper investigates the activities and outcomes of a compassionate community initiative—the Compassionate University program at the Vrije Universiteit Brussel in Belgium. Design: Ripple Effects Mapping was used to guide the focus group and individual interviews conducted with core team members responsible for the development and implementation of the Compassionate University program. Methods: During the focus group and individual interviews, the core team members reflected on the program contributions, with their narratives visually depicted via a hand-drawn mind map. Qualitative data derived from this mind map were entered into XMIND mapping software and fine-tuned based on the focus group and individual interview transcripts and additional project records. Results: Thematic analysis identified four outcome areas that encapsulate the key contributions of the Compassionate University program: (i) increased acceptance and integration of topics such as serious illness, death, and bereavement into existing practices; (ii) broader support for and formalization of compassionate procedures and policies; (iii) emergence of informal networks and internal collaboration on the topics; and (iv) diffusion of compassionate ideas beyond the university. Conclusion: The Compassionate University program facilitates a cultural shift within the university environment, fostering greater acceptance of integrating topics such as serious illness, death, and bereavement into existing practices. Additionally, compassionate procedures and policies for students and staff have been formalized, and core team members are increasingly called upon to provide support on these matters. Notably, Compassionate University stands out as one of the pioneering initiatives in Europe, attracting different educational institutions seeking guidance on cultivating a more compassionate environment. [ABSTRACT FROM AUTHOR]

Objectives: Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods: We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results: Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of 'growing this plan together'; the delivery of person-centred care – where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness – while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care – while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion: Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care. What is known about the topic? Integrated respiratory and palliative care services for people with advanced lung disease may improve quality of life and decrease acute healthcare utilisation and cost. What does this paper add? This paper adds to our understanding of patients', caregivers' and general practitioners' perspectives of this integrated care model. Participants highly valued this integrated service for providing person-centred care. Participants outlined both the effectiveness and limitations of action plan use in advanced lung disease, and of diverging preferences between patients and caregivers for discussions about future care. What are the implications for practitioners? The integration of disease-orientated care along with the provision of palliative care is highly valued from a consumer perspective. [ABSTRACT FROM AUTHOR]

Background: Behavioral theories are often used to better understand and change health-promoting behaviors and develop evidencebased interventions. However, researchers often lack of knowledge on how to use these theories in palliative care and people confronted with serious illness. Clear examples or guidelines are needed. Aim: To describe how behavioral theories can be used to gain insight into critical factors of health-promoting behavior in seriously ill people, using a case example of “starting a conversation about palliative care with the physician” for people with incurable cancer. Methods: We used a health promotion approach. Step 1: We chose a theory. Step 2: We applied and adapted the selected theory by performing interviews with the target population which resulted in a new behavioral model. Step 3: We operationalized the factors of this model. An expert group checked content validity. We tested the questionnaire cognitively. Step 4: We conducted a survey study and performed logistic regression analyses to identify the most important factors. Results: Step 1: We selected the Theory of Planned Behavior. Step 2: This theory was applicable to the target behavior, but needed extending. Step 3: The final survey included 131 items. Step 4: Attitudinal factors were the most important factors associated with the target behavior of starting a conversation about palliative care with the physician. Conclusions: This paper describes a method applied to a specific example, offering guidance for researchers and practitioners interested in understanding and changing a target behavior and its factors in seriously ill people. [ABSTRACT FROM AUTHOR]

Advances in the management of chronic diseases, combined with an aging population, have escalated the prevalence of people with life-limiting conditions and demand for palliative care. In Australia, this has prompted calls for change in policy frameworks, service systems and funding models that underpin care. The complex social, cultural and policy transformation required to enact these changes has been problematic. This paper reports on qualitative research into a unique, Australian Community Palliative Care program reflecting these aspirational changes. The research examined the program design and its implementation through the perspectives of program staff and volunteers. [ABSTRACT FROM AUTHOR]

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had participated in a three-camp cycle of the program over 12-month period, including a subgroup who had also attended a reunion camp. Interviews were also conducted with program staff. Thematic analysis generated key themes relating to the perceived impact which suggest that those engaged in this program perceived positive contributions associated with participation, including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning. This study highlights the areas of impact associated with engagement in a therapeutic recreation-based bereavement intervention, and the potential contribution of wider access to these programs for families whose child has died from serious illness. [ABSTRACT FROM AUTHOR]

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '. Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems. [ABSTRACT FROM AUTHOR]

Purpose Health Sector Evolution Plan (HSEP) is known as the biggest and most comprehensive reform in Iran's health system. One of the goals of HSEP is to reduce inequity in the healthcare financing. The purpose of this paper is to demonstrate HSEP agenda setting from the perspective of equity in healthcare financing (EHCF) using the multiple streams model.Design/methodology/approach This qualitative study was conducted by 26 documents review and analysis, and 30 semi-structured interview with Iranian key informants in the field of HSEP that were selected based on purposeful and snowball sampling method. Data were collected using a researcher-made checklist based on the goals. All audio-taped interviews were transcribed and analyzed thematically. Data management and analysis were performed using the framework analysis in MAXQDA software.Findings The framework analysis identified 12 complementary sub-themes totally. Problem stream included four sub-themes (high share of Out Of Pocket, high index of catastrophic health expenditures, low EHCF index, and inappropriate economic state and sanctions). Focus on EHCF in general policies of the Iran World Health Organization's report in 2000, the Targeted Subsidies Law and emphasis on equalizing healthcare financing in the Fourth and Fifth Development Plan were considered as policy stream sub-themes. Finally, political stream showed four sub-themes including strong support from the Minister of Health for HSEP, mass media, the pressure of WHO and people's request to reduce health costs.Research limitations/implications The limitations of the present study included paying attention to one package (evolution in the treatment sector) of three health packages to assess EHCF, as well as the lack of similar national and international evidence in implementation framework.Practical implications The results of this study can be used to analyze other health sector reforms around the word and can help the formulation and implementation of most practical reforms, especially in field of health system financing.Social implications This study gives a holistic view about health system policy setting that can be used for understanding policy-making streams to population.Originality/value This is the first study that has examined HSEP (the biggest health sector reform in Iran) from the perspective of agenda setting. In addition, using the popular and well-known Kingdon's model to explain HSEP agenda setting is one of the strengths of this study. Furthermore, taking advantage of a wide range of related views by including highly informed people increased the strength of the results of the study. In addition, the short interval between the interview and reviewing the results on reforms reduced the recall bias of the participants in the study. [ABSTRACT FROM AUTHOR]

Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life's end. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to determine how baby boomers define healthy ageing and quality of life, and if late life university study could have a beneficial impact for future health-promoting initiatives.Design/methodology/approach Qualitative data were collected from Australian baby boomers. Data were inductively categorised to identify and report emergent themes.Findings The majority of respondents believed healthy ageing meant being mentally and physically active, with later life university study contributing to mental health, which improves their quality of life.Social implications Later life university study can have positive health outcomes for baby boomers and may contribute to the quality of their life.Originality/value This study suggests that baby boomers are quite clear about how they define healthy ageing and quality of life: maintaining good health and retaining their independence. Some baby boomers stated that intellectual stimulation was critical for their overall health and wellbeing. Baby boomers identified as belonging to this group engagement in an educational (i.e. university) programme could be considered as a health-promoting intervention. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5–⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice. [ABSTRACT FROM AUTHOR]

Background: Resilience is an increasingly used term in medicine and subject to various definitions, often not easy to grasp. There are established core concepts for patients receiving palliative care, for example, meaning in life, that have already been researched a lot. Resilience, relative to these concepts, is a new object of research in palliative care, where it has so far been used predominantly with regard to the well-being of teams. Aim: To explore how experts in palliative care define the concept of resilience and its suitability for patients, significant others, and professionals. Design: Qualitative study using summarizing content analysis according to Mayring. Setting/participants: Twenty-one health and social care professionals with expertise caring for persons with life-threatening/limiting illnesses and their relatives were interviewed in three individual interviews and four focus groups. All conversations were recorded, transcribed, coded via MAXQDA, and validated by another researcher. Results: Resilience has been described as something procedural, dynamic, individual, and flexible. In connection with well-known concepts such as posttraumatic growth or terms from the field of mindfulness, social environment or personal factors have also been linked to resilience. Resources such as spirituality can contribute to resilience, and resilience itself can function as a resource, for example, by contributing to quality of life. An active use of the term in practical work with patients or relatives is rare, but it is used in education or team measures. Limited lifespan can pose a challenge to an active use of the concept of resilience. Conclusion: Resilience as a very individual approach provides added value to other core concepts of palliative care. Within the palliative context, the normative dimension of resilience must be well reflected. A broader definition of resilience is recommended, leaving room for everyone to find their own form of resilience. The concept of resilience in palliative care includes opportunities as well as risks and should, therefore, be implemented carefully, requiring specific training. Plain language summary: What experts think about resilience in palliative care Why was this study done? Resilience is described as a process of coping with stress or adversity while remaining physically and mentally functional. Resilience is subject to a range of definitions. In the context of palliative care, where many other concepts, such as meaning in life, are already used, the definition of resilience also represents a challenge. We wanted to learn how people working in palliative care, defined by us as experts, understand and use the concept of resilience. In addition, there are three different target groups for resilience: patients, significant others and professionals. We wanted to learn about the differences in the application of resilience to these groups. What did the researchers do? We conducted interviews with a total of 21 experts in individual and group settings (so-called focus groups). All interviews and focus groups were audiotaped and transcribed verbatim to analyse them precisely using qualitative methods. What did the researchers find? This study shows how resilience is understood in the work field of the participants: namely as something procedural, dynamic, individual and flexible but normative at the same time. Factors such as the social environment, the number and intensity of crises already experienced (known as the idea of posttraumatic growth), aspects from the field of mindfulness or spirituality can contribute to developing resilience, which is why we call these things resources for resilience. Experts use the term resilience less in their daily work with patients or significant others, but more in education. What do the findings mean? The concept of resilience in palliative care involves both risks and opportunities. Practical work with the concept has to be well reflected and must be applied sensitively. Therefore, it is essential that professional as well as informal caregivers receive specific training that also includes respect for each individual's personal concept of resilience. [ABSTRACT FROM AUTHOR]

Background and aim: While intensive care unit (ICU) mortality rates in India are higher when compared to countries with more resources, fewer patients with clinically futile conditions are subjected to limitation of life-sustaining treatments or given access to palliative care. Although a few surveys and audits have been conducted exploring this phenomenon, the qualitative perspectives of ICU physicians regarding end-of-life care (EOLC) and the quality of dying are yet to be explored. Methods: There are 22 eligible consultant-level ICU physicians working in multidisciplinary ICUs were purposively recruited and interviewed. The study data was analyzed using reflexive thematic analysis (RTA) with a critical realist perspective, and the study findings were interpreted using the lens of the semiotic theory that facilitated the development of themes. Results: About four themes were generated. Intensive care unit physicians perceived the quality of dying as respecting patients' and families' choices, fulfilling their needs, providing continued care beyond death, and ensuring family satisfaction. To achieve this, the EOLC process must encompass timely decision-making, communication, treatment guidelines, visitation rights, and trust-building. The contextual challenges were legal concerns, decision-making complexities, cost-related issues, and managing expectations. To improve care, ICU physicians suggested amplifying patient and family voices, building therapeutic relationships, mitigating conflicts, enhancing palliative care services, and training ICU providers in EOLC. Conclusion: Effective management of critically ill patients with life-limiting illnesses in ICUs requires a holistic approach that considers the complex interplay between the EOLC process, its desired outcome, the quality of dying, care context, and the process of meaning-making by ICU physicians. [ABSTRACT FROM AUTHOR]

Background: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. Methods: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. Results: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. Conclusions: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL. [ABSTRACT FROM AUTHOR]

Aim: To explore clinician-perceived barriers to and facilitators for the provision of actionable processes of care important for patients with persistent or chronic critical illness. Design: Qualitative descriptive interview study. Methods: Secondary analysis of semi-structured telephone interviews (December 2018 – February 2019) with professionally diverse clinicians working with adults experiencing persistent or chronic critical illness in Canadian intensive care units. We used deductive content analysis informed by the Social-Ecological Model. Results: We recruited 31 participants from intensive care units across nine Canadian provinces. Reported intrapersonal level barriers to the provision of actionable processes of care included lack of training, negative emotions and challenges prioritizing these patients. Facilitators included establishment of positive relations and trust with patients and family. Interpersonal barriers included communication difficulties, limited access to physicians and conflict. Facilitators included communication support, time spent with the patient/family and conflict management. Institutional barriers comprised inappropriate care processes, inadequate resources and disruptive environmental conditions. Facilitators were regular team rounds, appropriate staffing and employment of a primary care (nurse and/or physician) model. Communitylevel barriers included inappropriate care location and insufficient transition support. Facilitators were accessed to alternate care sites/teams and to formalized transition support. Public policy-level barriers included inadequacy of formal education programs for the care of these patients; knowledge implementation for patient management was identified as a facilitator. Conclusion: Our results highlighted multilevel barriers and facilitators to the delivery of actionable processes important for quality care for patient/family experiencing persistent or chronic critical illness. Impact: Using the Social-Ecological Model, the results of this study provide intra and interpersonal, institutional, community and policy-level barriers to address and facilitators to harness to improve the care of patients/family experiencing persistent or chronic critical illness. Reporting Method: Consolidated criteria for reporting qualitative studies. [ABSTRACT FROM AUTHOR]

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation. [ABSTRACT FROM AUTHOR]

Background: In children's palliative care, the term "respite" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from respite care services in the Lumina Association, Bacău hospice unit and the benefits it can bring in improving their psycho-emotional state. Methods: The study consisted of quantitative research involving 34 parents/caregivers who responded to a questionnaire with 26 questions, and qualitative research which involved the organization of a focus group with 12 parents who benefited from respite services. Results: The use of respite services was associated with a significant reduction of psycho-emotional distress on the part of primary caregivers; 91% of respondents said that this type of service reduces the level of psycho-emotional stress. Conclusions: All participants in the study confirmed that the most important benefit of respite is the time gained to care for family and health. The development of respite services could reduce the risk of emotional exhaustion and mental health problems. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim The aim of this study was to explore the potential use of visual diarizing to enable intensive care unit (ICU) survivors to create their story of recovery. Background An ICU experience can have deleterious psychological and physical effects on survivors leading to reductions in quality of life which for some may be of significant duration. Although there has been exploration of many interventions to support recovery in this group, service provision for survivors remains inconsistent and inadequate. Design and participants A qualitative interpretive biographical exploration of the ICU experience and recovery phase of ICU survivors using visual diarizing as method. This paper is a component of a larger study and presents an analyses of one participant's visual diary in detail. Methods Data collection was twofold. The participant was supplied with visual diary materials at 2 months post-hospital discharge and depicted his story in words and pictures for a 3-month period, after which he was interviewed. The interview enabled the participant and researcher to interpret the visual diary and create a biographical account of his ICU stay and recovery journey. Findings The analysis of one participant's visual diary yielded a wealth of information about his recovery trajectory articulated through the images he chose to symbolize his story. The participant confirmed feelings of persecution whilst in ICU and was unprepared for the physical and psychological disability which ensued following his discharge from hospital. However, his story was one of hope for the future and a determination that good would come out of his experience. He considered using the visual diary enhanced his recovery. Conclusions The participant perceived that visual diarizing enhanced his recovery trajectory by enabling him to recreate his story using visual imagery in a prospective diary. Relevance to clinical practice Prospective visual diarizing with ICU survivors may have potential as an aid to recovery. [ABSTRACT FROM AUTHOR]

Background Intensive care unit survivors face many physical and psychological difficulties during their recovery following discharge from hospital. These difficulties can significantly affect their quality of life. Healthcare providers and survivors' families often do not understand what recovery means in this population, which may affect the support provided. Aim To consider the potential of the biographical method in helping to create stories that illustrate recovery in intensive care survivors and other populations. Discussion This paper identifies how the biographical approach has provided survivors with a way to uncover the hidden parts of their lives through diaries and interviews, and reveal the hidden stories of intensive care survivorship and recovery. Conclusion The application of the biographical method enabled stories to be created that identified the disruption survivors encounter as they struggle to appear recovered. Implications for practice The biographical method can illuminate experiences uncaptured by other methods. This insight into recovery journeys can help healthcare practitioners and family members to understand and recognise the need for support during recovery. [ABSTRACT FROM AUTHOR]

Background At the end of life, individuals may experience physical symptoms such as pain, and guidelines recommend medications to manage these symptoms. Yet, little is known about the symptom management long-term care (LTC) residents receive at the end of life. Our research team developed a metric--whether residents receive one or more prescriptions for an end-of-life symptom management medication in their last two weeks--to explore end-of-life care for LTC residents. This qualitative study aimed to inform the refinement of the end-of-life prescribing metric, including the acceptability and applicability to assess the quality of a resident's symptom management at end-of-life. Methods We conducted 14 semi-structured interviews with Ontario health-care providers (physicians and nurses) who work in LTC homes and family caregivers of residents who died in LTC. Interviews were conducted virtually between February 2021 and December 2022, and were analyzed using thematic analysis. Results We identified three major themes relating to perceptions of the metric: 1) appropriateness, 2) health-care provider applicability, and 3) caregiver applicability. Participants noted that the metric may be appropriate to assess end-of-life care, but noted important nuances. Regarding applicability, health-care providers found value in the metric and that it could inform their practice. Conversely, caregivers found limited value in the metric. Conclusion The proposed metric captures a very specific aspect of end-of- life care--whether end-of-life medications were prescribed or not. Participants deemed that the metric may reflect whether LTC homes have processes to manage a resident's end-of-life symptoms with medication. However, participants thought the metric could not provide a complete picture of end-of-life care and its quality. [ABSTRACT FROM AUTHOR]

Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a s ocial constructivist paradigm, a secondary discourse analysis of s emi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. Setting/participants: A total of 26 children and young people aged 5–17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities. [ABSTRACT FROM AUTHOR]

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17–42 years old) were recruited via a children's hospice in England. Results: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusions: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships. [ABSTRACT FROM AUTHOR]

Background: One of the major challenges for healthcare professionals relates to awareness of patients' preferences relative to how and when to break bad news and how much information should be disclosed in the eventuality of a serious medical diagnosis or prognosis. On occasions, a serious medical diagnosis or prognosis is withheld from the patient. There is a scarcity of evidence about cultural preferences regarding breaking bad news in the palliative care setting in Ethiopia. Therefore, it is necessary to understand the surrounding cultural issues to properly convey bad news. The purpose of the study was to explore Ethiopian patients' cultural preferences for receiving bad news in a palliative care setting. Methods: A qualitative research approach and nonprobability, purposive sampling method were applied. In-depth interviews were employed to collect data from eight patients who were diagnosed with cancer and cancer with HIV/AIDS during the time of data collection. Thematic analysis was applied to identify themes and subthemes. The data were transcribed verbatim and analysed using ATLAS.ti 22 computer software. Results: The following three themes emerged and are reported in this study: (1) Perceptions about life-threatening illness: religious values and rituals are essential for establishing perspectives on life-threatening illnesses and preferences in receiving bad news. (2) Experiences with life-threatening illness: study participants' experience with the method of breaking bad news was sad, and they were not provided with sufficient details about their medical condition. Making appropriate decisions, fulfilling the ordinance of religious faith, and avoiding unnecessary costs were outlined as benefits of receiving bad news. (3) Preferred ways of breaking bad news; the findings revealed that incremental, amiable and empathic methods for delivering bad news were preferred. It was suggested that the presence of family members is crucial when receiving bad news. Conclusion: Patients choose to be told about their medical conditions in the presence of their family. However, the patient's needs for receiving bad news were unmet. Patients should be involved in the treatment decision process. Delivery of bad news needs to tailor the preferred methods, cultural values, and religious beliefs. Delivering bad news according to the patients' preferences helps to fulfil their wishes in palliative care. [ABSTRACT FROM AUTHOR]

Background: Preserving persons' dignity is integral to nursing. More research is needed to explore how a diversity of patients, particularly those that experience illness from a young age, experience dignity. Aim: Describe the characteristics of dignity for persons living with serious illness. Research design: Using a secondary data set of twenty audio-recorded interviews, a thematic content analysis was conducted to identify characteristics of dignity. The research team employed van Gennip et al.'s, 2013 "Model of Dignity in Illness" (1) to create a codebook, which the authors utilized to independently code twenty narrative interview transcripts. Participants and research context: Twenty persons living with serious illness of heart failure and/or dialysis-dependent renal failure who were admitted in an acute care hospital. Ethical considerations: This study was approved on August 26, 2019, by the Colorado Multiple Institutional Review Board (COMIRB) IRB Protocol #19-1874. Findings: Early-onset participants expressed markedly different dignity concerns than late-onset participants. In the individual domain, early-onset participants felt that their illness was "normal"; they did not experience the "healthy person to patient" transition described by older onset participants. In the relational domain, early-onset participants expressed that their relationships had already integrated their illness while late-onset participants felt that their illness harmed many of their relationships. In the societal domain, early-onset participants described dignity concerns related to how society impacted their ability to financially support themselves during their illness. Discussion: Differences in the dignity experience of early-onset and late-onset participants are informed by Erikson's "Model of Development" and by Aranda and Jones feminist critique of dignity in healthcare. Conclusions: Persons with early-onset illness experience dignity differently. Awareness of the importance of work and financial independence to the experience of dignity for seriously ill patients may enhance persons' dignity experience. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To explore the experiences of family members after they have lived through a close one's illness trajectory starting with critical illness and intensive care treatment, throughout hospitalisation and after their return home, and describe what was important and challenging for them during this time. Background: Being family during and after critical illness and intensive care treatment may be traumatic and challenging. An in‐depth understanding of family members' lifeworld throughout a close one's illness trajectory is needed. Design: A qualitative design with a phenomenological approach. Methods: We held ten interviews with eleven next of kin, nine of which were individual and one with a parent couple. The interviews lasted 90 minutes, on average, and were transcribed verbatim. Giorgi's phenomenological method guided the analysis. Results: The overall structure was 'striving for a safe ground for themselves and their close one', which was dependent on the three constituents of 'in need of care', 'to take on responsibility' and 'to create new understanding'. Throughout the illness trajectory, the family members required care to increase their feelings of safety in the context of their close one being unsafe. They described taking on responsibility for their close one—a responsibility that increased after hospital discharge—as demanding new knowledge which they were often unable to obtain. Conclusions: Families of critically ill patients need to be seen on their own behalf. Moreover, when taking on responsibility for their close one, they regularly need more knowledge than they get. There seems to be an absence of a support system for families with caring responsibilities after their relatives are discharged from hospitals. Relevance to Clinical Practice: This study shows the importance of family carers being considered in their own right, as well as their individual needs throughout a close one's illness trajectory. There seems to be a gap in the knowledge of what family members require when their close one is discharged. Indeed, a better support system is essential for families following a hospital discharge. [ABSTRACT FROM AUTHOR]

The last two decades have seen an academic and practice based shift in the acknowledgment that children require support following the death of a significant person. However, the needs of children who are living amidst parental life threatening illness are not, as yet, so clearly recognised or acknowledged. These children are often forgotten and their needs are frequently peripheral, if not absent, within the clinical setting. The current study adopted qualitative methodology to explore children's experiences when living with a parent who is dying. A total of 36 people were interviewed, including children, their parents and professionals. The findings highlighted the importance of age appropriate information sharing with the children and the significant role professionals have in facilitating conversations either directly or through supporting the parents to hold these 'difficult' discussions. This paper offers an overview of the vital role community practitioners have in supporting the children of patients. It argues that they often have a more in-depth knowledge of the family and its functioning and that consequently they can add a different dimension to the care provided. [ABSTRACT FROM AUTHOR]

Aims: To explore healthcare professionals' perceptions of the feasibility and acceptability of family engagement in early mobilisation for adult critically ill patients. Background: Early mobilisation is beneficial to minimise intensive care unit acquired‐weakness in critically ill patients and family engagement can help with meeting early mobilisation goals, but it is not widely practiced. Understanding healthcare professionals' perceptions of feasibility and acceptability of family engagement in early mobilisation of adult critically ill patients is required to inform future implementation strategies to promote early mobilisation. Design: A descriptive qualitative study. Methods: Face‐to‐face, individual, semi‐structured interviews were conducted between August 2021 and March 2022 with healthcare professionals working in two intensive care units in Australia. The interviews were analysed using the inductive content analysis, and descriptive statistics were used to summarise participant characteristics. The COREQ checklist was followed when reporting this study. Results: Eleven ICU nurses, five physiotherapists and four physicians participated in the interviews. Three main categories were identified: (i) healthcare professionals' readiness, (ii) mediators of engagement and (iii) foundations for successful implementation. Most participants demonstrated a positive attitude towards an implementation of family engagement in early mobilisation for adult critically ill patients; however, capability and capacity of healthcare professionals, family members' willingness, availability and readiness and the care context were considered factors that could influence the successful implementation. Conclusion: From the perspectives of healthcare professionals, family engagement in early mobilisation is feasible and acceptable to enact but implementation is influenced by contextual factors including, healthcare professionals' capability and capacity and family members' willingness, availability and readiness. Collaborative teamwork and preparing family members and healthcare professionals are needed to support this practice. Relevance to Clinical Practice: The findings provide important information to further identify potential strategies of family engagement in early mobilisation and to help and mitigate factors that impede implementation. [ABSTRACT FROM AUTHOR]

Background: There is growing evidence that conversations between healthcare professionals and patients with serious illness can improve the quality of end-of-life cancer care. Yet, there is lack of insight into how different healthcare professions collaborate to deliver serious illness communication, as well as patients' and caregivers' perceptions of this collaboration between the nurse and physician. This study explores the interdisciplinary collaboration between nurses and physicians in serious illness conversations with patients diagnosed with multiple myeloma and their caregivers. Methods: Eleven dyadic interviews were conducted with 22 patients and caregivers, and two focus group interviews involving four nurses and the other with four physicians. Data analysis and reporting were conducted using reflexive thematic analysis within phenomenological epistemology. Results: The interdisciplinary collaboration was characterized by three main themes: (1) Importance of relationships, (2) Complementary perspectives, and (3) The common goal. Conclusion: This study highlights the importance of interdisciplinarity in serious illness conversations as it enhances the use of existential and descriptive language when addressing medical, holistic, and existential issues. The use of broader language also reflects that interdisciplinary interaction strengthens the expertise of each professional involved in patient care. Through interdisciplinary collaboration, the preferences, hopes, and values of the patient and caregiver can be integrated into the treatment plan, which is key in providing the delivery of optimal care. To promote cohesive and coordinated collaboration, organizational changes are recommended such as supporting continuity in patient–healthcare professional relationships, providing interdisciplinary training, and allocating time for pre-conversation preparation and post-conversation debriefing. [ABSTRACT FROM AUTHOR]

Background: Critical illness is a traumatic experience, often resulting in post‐intensive care syndrome, affecting people's physical, psychological, emotional, and social well‐being. The early recovery period is associated with increased risk, negatively impacting longer‐term outcomes. Aims: The aims of this study were to understand the recovery and rehabilitation needs of people who survive a COVID‐19 critical illness. Study design: An exploratory descriptive qualitative interview study with 20 survivors of COVID‐19 critical illness from two community‐based healthcare settings in London, England. Data collection took place September 2020–April 2021, at least 1 month after hospital discharge by telephone or virtual platform. Data were subjected to inductive thematic analysis and mapped deductively to the three core concepts of self‐determination theory: autonomy, competence and relatedness. Results: Three key themes emerged: traumatic experience, human connection and navigating a complex system. Participants described how societal restrictions, fear and communication problems caused by the pandemic added to their trauma and the challenge of recovery. The importance of positive human connections, timely information and support to navigate the system was emphasized. Conclusions: Whilst findings to some extent mirror those of other qualitative pre‐pandemic studies, our findings highlight how the uncertainty and instability caused by the pandemic add to the challenge of recovery affecting all core concepts of self‐determination (autonomy, competence, relatedness). Relevance to clinical practice: Understanding survivors' perspectives of rehabilitation needs following COVID‐19 critical illness is vital to delivery of safe, high‐quality care. To optimize chances of effective recovery, survivors desire a specialist, co‐ordinated and personalized recovery pathway, which reflects humanized care. This should be considered when planning future service provisions. [ABSTRACT FROM AUTHOR]

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families. [ABSTRACT FROM AUTHOR]

Background: Serious illness conversations may lead to care consistent with patients' goals near the end of life. The emergency department could serve as an important time and location for these conversations. Aim: To determine the feasibility of an emergency department-based, brief motivational interview to stimulate serious illness conversations among seriously ill older adults by trained nurses. Design: A pre-/post-intervention study Settings/participants: In an urban, tertiary care, academic medical center and a community hospital from January 2021 to January 2022, we prospectively enrolled adults ⩾50 years of age with serious illness and an expected prognosis <1 year. We measured feasibility outcomes using the standardized framework for feasibility studies. In addition, we also collected the validated 4-item Advance Care Planning Engagement Survey (a 5-point Likert scale) at baseline and 4-week follow-up and reviewing the electronic medical record for documentation related to newly completed serious illness conversations. Results: Among 116 eligible patients who were willing and able to participate, 76 enrolled (65% recruitment rate), and 68 completed the follow-up (91% retention rate). Mean patient age was 64.4 years (SD 8.4), 49% were female, and 58% had metastatic cancer. In all, 16 nurses conducted the intervention, and all participants completed the intervention with a median duration of 27 min. Self-reported Advance Care Planning Engagement increased from 2.78 pre to 3.31 post intervention (readiness to "talk to doctors about end-of-life wishes," p < 0.008). Documentation of health care proxy forms increased (62–70%) as did Medical Order for Life Sustaining Treatment (1–11%) during the 6 months after the emergency department visit. Conclusion: A novel, emergency department-based, nurse-led brief motivational interview to stimulate serious illness conversations is feasible and may improve advance care planning engagement and documentation in seriously ill older adults. [ABSTRACT FROM AUTHOR]

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress. [ABSTRACT FROM AUTHOR]

Caregiving is considered a tough job as carers are challenged with care-related problems both from caregiving itself and the patients. In the Philippines, family members are usually seen doing the role for their patients. This study was conducted to determine the experiences and challenges in dealing with and addressing the needs of caregivers of terminally-ill cancer patients. Likewise, it explored the strategies caregivers do to manage the stress encountered in caring the terminally-ill cancer patients. A case study research method under qualitative research was followed in determining the experiences of five (5) caregivers from the selected barangays in Tacurong City, Sultan Kudarat. A self-constructed guide question served as the primary tool in gathering data from the respondents which was held in March 2019. Findings reveal that majority of the respondents took care of their patients for a short duration of 1-4 months. They provided the basic needs of the patients like bathing, feeding, giving medication and changing of diapers. Most of the patients were irritable, and the needed care was offered immediately by the caregivers. The respondents felt that their role as a caregiver is challenging due to lack of sleep. More to that are the financial difficulties due to the hospitalization and needs of their patients. The respondents have undergone the grieving and mourning process and gradually accepted the death of the patients. As a coping mechanism, the respondents spent their time with their families, and they consider God as their strength and support. Caregiving is indeed a complicated process, yet the caregivers can manage and surpass the challenges encountered while caring for their patients. Families with cancer patients should refiect on the challenges the caregivers go through, not only focusing on the patients as they also need physical, emotional, financial, spiritual and social support. [ABSTRACT FROM AUTHOR]

Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to their dignity being threatened. Moreover, dignity is an abstract concept and there is no studies done on teenagers' dignity in the final stages of life available in Iran. Purpose : The purpose of this study is to describe the caregivers' experiences regarding teenagers' dignity in the final stages of life. Research design : This study is a descriptive phenomenological qualitative research project. The data was collected using deep individual and semi-structured interviews as well as taking notes. The Colaizzi analysis method was used to analyze the data. Participants and research context : 22 caregivers working with teenagers in the final stages of life in a public health centers in Iran who had the criteria to enter the study were selected using a purposeful sampling method and invited to join the study from August 2018 to June 2019. The sampling continued until data saturation. Findings : The findings of the present study were presented in the form of three main themes including "private," "respecting individual identity," and "attention to teenagers' needs" and an additional eight categories. Ethical Considerations: The study's protocol was approved by the Research Ethics Committee of the Shiraz University of Medical Sciences and all ethical principles were followed throughout the study. Discussion and conclusion : Based on the present study from the caregivers' point of view, teenagers in their final stages of life required to be cared for and taught in an environment that their privacy was maintained and their individual identity was respected as well as getting attention from the caregivers and companions. In such situations, the teenagers felt calm and their dignity was maintained; therefore, providing a cultural, professional, and organizational setting where all the components of maintaining dignity in teenagers are supported and prioritized is necessary. [ABSTRACT FROM AUTHOR]

Background: Chronic diseases pose a serious threat to health and longevity worldwide. As chronic diseases require long periods of treatment and may become serious conditions, the ensuing financial burden is often worse than that for non-chronic diseases. In 2016, the Lao PDR implemented the National Health Insurance (NHI) system, which covers select provinces. However, data on health service accessibility and the financial burden on households, especially those with chronically ill members covered by the NHI, are scarce. Methods: This study used a cross-sectional design. Data collection was conducted in Bolikhamxay province (population = 273,691), from January 15 to February 13, 2019. In total, 487 households, selected through stratified random sampling, were surveyed via questionnaire-based interviews. Healthcare service usage and financial burden were examined. Results: A total of 370 households had at least one member with self-reported health issues within the last 3 months prior to the interview, while 170 had at least one member with a chronic condition. More than 75% of the households accessed a health facility when a member experienced health problems. The majority of households (43.2%) spent the maximum value covered by the NHI, but households in the second largest group (21.4%) spent 10 times the maximum value covered by the NHI. The prevalence of catastrophic health expenditure (i.e., health-related expenditure equivalent to > 20% of total income) was 25.9% (20% threshold) and 16.2% (40% threshold). Through logistic regression, we found that the major factors determining financial catastrophes owing to health problems were household members with chronic illness, hospitalization, household poverty status, household size (for both the 20 and 40% thresholds), visiting a private facility (20% threshold), and distance from the province to the referral hospital (40% threshold). Conclusions: The NHI system has had a positive effect on households' access to health facilities. However, catastrophic health expenditure remains high, especially among chronically ill patients. Facilities under the NHI system should be improved to provide more services, including care for chronic conditions. [ABSTRACT FROM AUTHOR]

Background: The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children (<18 years old) are able to participate in research and appreciate the opportunity to participate in studies. Aim: To share the strategies employed by two research teams from USA and UK, who have successfully recruited children living with parental life-limiting illness as research participants. Findings: The researchers overcame common challenges when negotiating ethics committees by anticipating the IRB/REC concerns, providing the committees with detailed applications including distress protocols, and offering resources to their ethics committee to learn about conducting research with this population. The researchers navigated recruitment and gatekeeping by clinicians and parents by partnering with clinical agencies and nurturing relationships with practitioners who are supportive of the research, offering to present the findings of the study with continuing education credits, and developing children's, adolescents' and parents' project advisory groups to support recruitment, data collection and analysis. Conclusions: Simple strategies can be used to overcome barriers to recruitment, providing opportunities for children to be research participants and for their unique perspectives to be heard in palliative care research. [ABSTRACT FROM AUTHOR]

Background: Living with chronic obstructive pulmonary disease stage III or IV has a major impact on a person's everyday life. This qualitative study focuses on women with chronic obstructive pulmonary disease stage III or IV. Aim: The aim of this study was to describe women's experiences of living with chronic obstructive pulmonary disease stage III or IV. Method: A purposive sample of fifteen women with chronic obstructive pulmonary disease stage III or IV participated in the study. Data were collected through individual semi‐structured interviews that were subjected to qualitative content analysis. Findings: One theme was identified, stabilizing an ever‐present breathlessness by restoring strength, and three categories are as follows: managing a restricted everyday life as an expert of their illness, being afraid of contracting infections leading to suffocation and suffering and importance of continuous help and support from significant others and digital media. Breathlessness restricted women with chronic obstructive pulmonary disease, living with a body they have to wait for. Managing everyday life was adapted to their limited abilities and energy. This required detailed planning, good knowledge of their breathing and body. Women were afraid of contracting life‐threatening infections that caused suffering, especially COVID‐19. The fear leads to isolation and digital media was described as an important means of communication. Significant others gave support and help that was practical and emotional. Women with chronic obstructive pulmonary disease experienced lack of continuous help and support from healthcare professionals. Conclusion: Stabilizing an ever‐present breathlessness by restoring strength required women with chronic obstructive pulmonary disease stage III or IV to conduct detailed planning to manage everyday life. Being afraid of contracting infections and the consequences of suffocation had increased since the pandemic COVID‐19 outbreak, which led to self‐isolation and an inactive everyday life. To get help, support and socialize, women used digital media. [ABSTRACT FROM AUTHOR]

Background: The Compassionate Communities Connectors programme is a volunteer-led initiative designed to enhance the social networks of families living with chronic or life-limiting illnesses. Specially trained volunteers supported existing members of the families' social networks and also enlisted the support of community members, Caring Helpers, to address the social and practical needs of these families. The programme is an initiative of The South West Compassionate Communities Network in Western Australia, in partnership with the health service. Objective: To explore the experiences and views of Connectors implementing this model of care with a particular focus on its feasibility and acceptability from their perspective. Methods: Semi-structured telephone interviews were undertaken with 11 Connectors covering their experience with 37 patients/family carers (March 2021 to April 2022). A deductive content analysis was used in analysing interview transcripts. Results: Six themes captured the Connectors' view of their role and its impact on their clients and themselves: Mutual benefits from connection and reciprocity; It is ok to ask for and receive help; Sense of community as being 'part of a village'; Making a difference in social connectedness; Frustrations when not achieving everything you want to; Reflecting on the difference with traditional volunteering. These themes are complemented by a social network mapping example and a vignette demonstrating the increase both in connections and interaction between these connections and the process by which such changes took place. Conclusion: Volunteering as a Connector has been a positive and feasible experience for fostering a sense of community among participants, developing relationships with other community members, seeing the difference that the Connector role makes in the lives of those involved in the enhanced network and fostering growth in Connectors' emotional capacity and compassion. The work is challenging but rewarding and differs in several respects from traditional volunteering, particularly in the agency Connectors can bring to their role. A public health approach based on a close partnership between health services and communities/civic institutions is the optimal practice model. [ABSTRACT FROM AUTHOR]

Background: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers' perspectives. Aim: To explore mothers' accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. Design: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. Setting/participants: Thirty mothers of children with a life-limiting condition were recruited via three UK children's hospices and social media. Results: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers' reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child's. Hospice support was particularly valuable in this respect. Conclusions: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required. [ABSTRACT FROM AUTHOR]

This article presents VoicingHan project as a new form of life-review mediated by digital avatars promoting the reconstruction of self and identity through performativity. Whereas traditional life-review uses interview as primary means of the therapeutic process, VoicingHan is mediated by virtual bodies with self-guided participation in one's own life stories through embodied storytelling performance. VoicingHan enrolled 12-patients receiving outpatient palliative care at VCU Massey cancer center. The storytelling performances were recorded via avatar video format and distributed to participants for review and/or sharing. The present study considered the avatar videos as qualitative data emerging from these individually constructed life review narratives. In this article, the benefits of VoicngHan life-review were demonstrated by analyzing the avatar video narratives, based on theoretical and developmental frameworks. Through the lens of Social Constructivism, this qualitative study deepens our understanding of human-avatar interactions to engage life review process, within the liminal space of life-threatening illnesses. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. Aim: To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals. Design: Qualitative semi-structured interviews were conducted, with thematic analysis of the data. Setting/participants: A diverse sample of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom. Results: Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming. Conclusions: Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children. [ABSTRACT FROM AUTHOR]

Aims and objectives: To examine the characteristics of spirituality as expressed by persons of colour living with serious illness. Background: Spiritual, Religious and Existential Care, as specified in the National Consensus Project (NCP) Guidelines, is a core domain of palliative nursing. Design of the study: A constructionist approach to narrative analysis was used for this study and reported in accordance with the COREQ guideline. Methods: In‐depth narrative interviews were conducted with 20 participants. These participants included persons of colour living with serious illness who were admitted to an acute‐care hospital. Through a deductive coding approach, a codebook was created based on a broad definition of spirituality including: religion, self, family, community, nature and art/music/literature. Results: The major themes expressed were religion, self and family. Subthemes of religion included increased faith, support of the church community and God's intervention in patients' lives. Subthemes of self included increased self‐worth, self‐awareness of one's place in the world and individualised transition to new meaning in life. Subthemes of family included family adding meaning and purpose to their lives, family as an important source of strength and support, wanting to regain their health to go back to caring for their families, and believing that their illness had brought their family closer together. Conclusion: The thematic analysis revealed a broader existential aspect of what brought value, meaning and purpose into their lives, despite their progressive physical illness. More research is needed to understand spiritual, religious or existential needs of persons of colour living with serious illness and how nurses can best support these needs. By understanding the components of spirituality, nurses can learn to recognise the signs of spiritual distress. This awareness also helps to know when a spiritual specialist is needed—either the patient's own spiritual guide(s) or the hospital chaplain. Nurses can also use spiritual assessment tools when performing a general assessment on the patient. Relevance to clinical practice: By understanding the components of spirituality, nurses can learn to recognise the signs of spiritual distress. This awareness also helps to know when a spiritual specialist is needed—either the patient's own spiritual guide(s) or the hospital chaplain. Nurses can also use spiritual assessment tools when performing a general assessment on the patient. [ABSTRACT FROM AUTHOR]

Background: The Serious Illness Care Programme enables patients to receive care that is in accordance with their priorities. However, despite clarity about palliative care needs, many barriers to and difficulties in identifying patients for serious illness conversations remain. Aim: To explore healthcare professionals' perceptions about factors influencing the process of identifying patients for serious illness conversations. Design: Qualitative design. A thematic analysis of observations and semi-structured interviews was used. Setting/participants: Twelve observations at team meetings in which physicians and nurses discussed the process of identifying the patients for serious illness conversations were conducted at eight different clinics in two hospitals. Semi-structured interviews were conducted with three physicians and two nurses from five clinics. Results: Identifying the right patient and doing so at the right time were key to identifying patients for serious illness conversations. The continuity of relations and continuity over time could facilitate the identification process, while attitudes towards death and its relation to hope could hinder the process. Conclusions: The process of identifying patients for serious illness conversations is complex and may not be captured only by generic tools such as the surprise question. It is crucial to address existential and ethical obstacles that can hinder the identification of patients for serious illness conversations. [ABSTRACT FROM AUTHOR]

Background: Surrogate decision makers are required to make difficult end-of-life decisions with little preparation. Little is known about what surrogates may need to adequately prepare for their role, and few resources exist to prepare them. Objective: To explore experiences and advice from surrogates about how best to prepare for the surrogate role. Design: Semistructured focus groups. Setting/Participants: Sixty-nine participants were recruited through convenience sampling in San Francisco area hospitals, cancer support groups, and community centers for 13 focus groups. Surrogates were included if they were 18 years of age or older and reported having made medical decisions for others. Measurements: Qualitative thematic content analysis. Results: Forty participants reported making surrogate decisions for others: 6 were Spanish speaking, 22 were women, 16 were Black American, 11 Asian/Pacific Islander, 6 Latinx, and 7 White; 9 had limited health literacy. The majority (29, 73%) emphasized the importance of advance care planning (ACP) and expressed the desire for additional guidance. Five themes and advice were identified: (1) lack of, but needing, surrogates' own preparation and guidance (2) initiate ACP conversations, (3) learn patient's values and preferences, (4) communicate with clinicians and advocate for patients, and (5) make informed surrogate decisions. Conclusion: Experienced surrogate decision makers emphasized the importance of ACP and advised that surrogates need their own preparation to initiate ACP conversations, learn patients' values, advocate for patients, and make informed surrogate decisions. Future interventions should address these preparation topics to ease surrogate burden and decrease disparities in surrogate decision making. [ABSTRACT FROM AUTHOR]

Background: As advancements in intensive care treatment have resulted in decreased mortality rates, more attention has been given to the experience of life after critical illness. Despite an increase in literature describing the physical, psychological, and cognitive health problems arising after critical illness, there is a shortage of research exploring the lifeworld of patients and relatives, including its internal and external interplay in everyday life. Addressing this is essential for gaining insights into the experience of everyday life and recovery after critical illness. Aims and objectives: To explore patients' and relatives' experiences of everyday life after critical illness. Design: Data were collected using semi‐structured interviews with 7 relatives and 12 patients. Interviews were audiotaped and transcribed verbatim. Methods: Drawing on the phenomenological‐hermeneutic tradition, data were analysed using Ricoeur's theory of interpretation, as described by Dreyer and Pedersen. Findings: The lifeworld of everyday life was disclosed in the theme "Finding oneself after critical illness," described as an overall comprehensive understanding. This theme was divided into the subthemes (a) redefining the self, (b) reintegrating with family, and (c) resuming everyday life, which followed the trajectory of the three phases: the known past, the uncertain present, and the unknown future. Conclusion: Critical illness and physical, psychological, and cognitive health problems create new and emerging difficulties in patients' and relatives' experiences of everyday life after intensive care. These experiences affect their understanding of themselves, their families, and their ability to resume pre‐intensive care unit everyday life. Implications for practice: The study underlines the need to supplement the affirmed domains in post‐intensive care syndrome with a social domain to enhance family‐centred care within the intensive care unit and across sectoral borders. Additionally, it highlights the need to develop rehabilitation strategies aimed at patients' and relatives' multifactorial health problems. [ABSTRACT FROM AUTHOR]

Background: The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals' responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals', patients' and proxies' perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder. Methods: A qualitative study with patients, proxies and healthcare professionals. Semi - structured interviews will be held with 10 – 15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi - structured interviews will also be held with 5 – 10 proxies. Healthcare professionals, volunteers and/or 'experts - by - experience' ( n = 24 – 40) will be participating in semi - structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings. Discussion: Everyone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase. [ABSTRACT FROM AUTHOR]

Background: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved survival. Care is mostly provided at home by the family, with significant professional input at different points in the child's life trajectory. This study explored the experience of healthcare professionals caring for this cohort of children. Methods: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from 12 healthcare professionals' including nurses, social workers and doctors. Data were analysed using thematic analysis. Results: The findings highlighted the unfailing determination and dedication of healthcare professionals who provided care despite challenges with what seemed like 'with every fibre of their being'. Three key themes marked such strength and commitment; those were 'being there', 'being focused' and 'being strong'. 'Being there' explicitly highlighted expert care that was individualized and responsive to the child and family's unique needs. The provision of such care was often threatened and potentially compromised by the intricacies and challenges associated with children's palliative care (CPC) and service provision. 'Being focused' captured the sense that the healthcare professionals remained entirely focused on providing expert care despite these challenges. 'Being strong' epitomized the personal and professional impact on healthcare professionals who are working in this area and the manner in which they sustain themselves in 'being focused' and in 'being there'. Conclusions: The healthcare professionals demonstrated their unwavering commitment to deliver quality care required by children and families, however against a background of issues relating to organizational constraints. The findings have implications for education/service providers such as the need for specific palliative care education at both pre-registration level and continuing professional development. [ABSTRACT FROM AUTHOR]

The aim of this study was to elucidate the meaning of critical illness for people with COVID-19. This study used a qualitative design. Thirteen people who were critically ill with COVID-19 during 2020 and admitted to a COVID-19 intensive care unit in northern Sweden participated in the study. Data collection was conducted as individual interviews with a narrative approach, and data were analyzed with phenomenological hermeneutic interpretation. The participants did not think they would get critically ill with this unexpected illness. They experienced terrible nightmares where their relatives had been killed, and they missed their relatives both in their dreams and in reality, as they had not been allowed to be with them due to the virus. Gratefulness was described for surviving. Participants described thoughts of not being able to imagine going through this again. They felt fear and loneliness, as a terrifying unreality had become a reality. [ABSTRACT FROM AUTHOR]

Aims: To explore adult experiences of fatigue after discharge from an intensive care unit and identify potential management strategies. Design: An exploratory qualitative study. Methods: One to one audio‐recorded semi‐structured interviews with 17 adult survivors of critical illness in the United Kingdom, lasting up to 1 h, between September 2019 and January 2020. Anonymised and verbatim‐transcribed interview data underwent a standard process of inductive thematic analysis as described by Braun and Clarke. Findings: Three themes were identified: fatigue is different for everyone; complex interrelating interactions; and personalised fatigue strategies. Fatigue was described as a distressing symptom, unique to the individual that causes an array of complex, often long‐term interrelating impacts on the survivor and their wider family, made worse by a lack of understanding, empathy and support resources. Support from others, alongside interventions such as exercise, good nutrition, information and alternative therapies are used by survivors with variable degrees of success. Conclusions: This qualitative study reports peoples' experiences of fatigue after critical illness. Findings highlight the significant impact it has on people's lives and those of their family and friends. [ABSTRACT FROM AUTHOR]

This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reunion camp. Thirteen parents completed open-ended surveys before and after each camp and six of these also completed interviews after the final camp. Six additional parents completed interviews after the reunion camp. Six staff working with families during the camps were also interviewed. Content analysis of surveys and thematic analysis of interviews revealed the aims, structure, and content of the camp. The findings suggest a model whereby shared experience allows for normalization and offers a nonjudgmental place to share stories, discuss difficulties come together as a family, and create a support network. These findings highlight the value of therapeutic recreation-based bereavement interventions for families whose child has died from serious illness. [ABSTRACT FROM AUTHOR]