Palliative Care and Social Practice最新文献

Death may be the only certainty in life, but for palliative care patients and their carers, it is anything but. How long is there left? Will a hospice bed be available? What new loss (big or small), will tomorrow bring? Research suggests that the poor management of uncertainty in palliative care can significantly impact patient outcomes as well as the experience of bereaved families. Social workers cannot mitigate this uncertainty, but they can support individuals to recognise and engage with it. Often, this can create tensions with their personal instinct to remove distress, as well as their professional drive to 'fix things'. By overcoming these challenges and embracing their ability to find ways forward 'in the midst of the messy stuff', they model a constructive mode of behaviour that patients and other multidisciplinary professionals can then mirror.

Background: Unpaid carers make a substantial contribution to the health economy and carers of palliative patients are particularly vulnerable due to special patient needs and excessive carer burden. The Australian Government recently implemented the Integrated Carer Support Service Model to provide a range of free services to carers in the community. However, it is unclear whether such initiatives are effective and, more importantly, how carers of palliative patients gain access to information, support and services for the patient and themselves.

Objectives: We sought to investigate unpaid carers' experiences in accessing information and resources for support with patient care with a specific focus on palliative care resources and to determine carers' access to information and support for self-care. We also aimed to identify what opportunities and challenges remain for these particular carers according to their experiences.

Methods: We conducted 18 semi-structured interviews and 3 focus groups with unpaid family or friend carers of palliative patients in South Australia from metropolitan, regional and rural communities. Grounded in a descriptive phenomenological paradigm, we conducted a hybrid approach to thematic analysis combining deductive and inductive coding following Fereday and Muir-Cochrane's method.

Results: The government's web-based initiative provided little impact in supporting carers from our cohort. There remains a substantial gap between the formal recognition of the importance of carers and their lived reality. This recognition by health professionals is vital, as carer self-identification is not common and affects help-seeking behaviour. Carers seek and respond to more grassroots, personalized forms of support and sharing of information.

Conclusion: The lack of self-identification affects carers' help-seeking behaviours. Carer identification and recognition need to be initiated by health professionals in a proactive manner to ensure carers are prepared for their role and are emotionally supported to sustain it. Carers seek face-to-face guidance and sources of information.

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.

Background: Cancer patients experience significant changes in their social roles along with various physical and psychological challenges. Despite the growing recognition of the importance of palliative care in Bangladesh, there is a notable gap in research focusing on the psychosocial issues faced by patients with advanced cancer.

Aim: This study aims to explore the level of social support perceived by Bangladeshi cancer patients and determine how this support relates to their mental health status.

Methods: This cross-sectional study was conducted among 115 advanced cancer (stages III and IV) patients admitted to the palliative medicine department of a tertiary care hospital in Bangladesh. Perceived social support was measured by the Multidimensional Scale of Perceived Social Support, and the mental health status of the patients was assessed by Depression, Anxiety, and Stress Scale-21. Data collection was done from June to November 2023. Relationships between perceived social support, depression, anxiety, and stress were assessed by the Spearman correlation test. The moderating effect of perceived social support on patients' mental health variables was determined by multiple linear regression and simple slope analysis. p Value <0.05 was considered to be statistically significant.

Result: The study included an almost equal number of male (49.6%) and female (50.4%) patients, with a mean age of 50.7 ± 14.4 years. Overall, perceived social support was moderate to high for most (74.7%) of the participants. Among the participants, 78.3% experienced anxiety, 77.4% suffered from depression, and 70.5% experienced stress. Depression, anxiety, and stress were all negatively and significantly (p < 0.05) correlated with perceived social support. Younger patients reported higher levels of anxiety, stress, and depression. Perceived social support had a significant buffering effect on depression and anxiety among the younger patients.

Conclusion: Perceived social support has a profound and significant effect on the mental health of advanced cancer patients. Integrating psychosocial support early in palliative care can be highly beneficial to the mental health of these patients.

Background: Palliative care, which aims to alleviate physical and emotional distress from cancer, is underutilized in many African healthcare systems. Therefore, there is a lack of data on the need and utilization of palliative care services among women with breast cancer in Ethiopia.

Objectives: The goal of this study was to identify the level of need and utilization of palliative care services and identify associated factors among women in an oncology department of Hawassa comprehensive and specialized hospitals.

Design: Hospital-based cross-sectional study.

Methods: A total of 121 women age ⩾18 years old with breast cancer participated from 1 August to 30 October 2021. A hospital-based consecutive sampling technique was used. Data regarding the need and utilization of palliative care services were collected via questionnaire and interview, entered using EpiData 4.6.0.6, and analyzed by SPSS version 25. Variables with p < 0.25 were considered for multivariate analysis, and those with p < 0.05 indicate an association with palliative care utilization.

Result: Seventy-two (59.5%) had worse utilization of palliative care services, with higher odds in rural areas (adjusted odds ratio = 11.82).

Conclusion: The study findings indicated that more than half of the study participants had worse utilization of palliative care services, with rural living being a contributing factor.

Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated their need for support from specialized PPC (SPPC) teams.

Objectives: This study had two objectives: (1) to evaluate whether the availability of a SPPC team impacted the work-related QoL of professionals not specialized in PPC; and (2) to explore the work-related QoL of professionals working in PPC without specialized training.

Design: Repeated cross-sectional comparative effectiveness design.

Methods: One hospital with an established SPPC program and affiliated institutions provided the intervention group (IG). Three hospitals and affiliated institutions where generalist PPC was offered provided the comparison group (CG). Data were collected by paper-pencil questionnaire in 2021 and 2022. The Professional Quality of Life (ProQOL 5) questionnaire was used to assess work-related QoL, yielding separate scores for burnout (BO), secondary traumatic stress (STS) and compassion satisfaction (CS). A descriptive statistical analysis was performed and general estimation equations were modelled. To increase the comparability of the IG and CG, participants were matched by propensity scores.

Results: The 301 participating non-PPC-specialized professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. However, none of these scores (BO: p = 0.36; STS: p = 0.20; CS: p = 0.65) correlated significantly with support from an SPPC team. Compared to nurses, physicians showed higher levels of BO (1.70; p = 0.02) and STS (2.69; p ⩽ 0.001).

Conclusion: Although the study sample's overall work-related QoL was satisfactory, it showed a considerable proportion of moderate BO and STS, as well as moderate CS. To provide tailored support to professionals working in PPC, evidence regarding key SPPC support elements and their effectiveness is needed.

Trial registration: ClinicalTrials.gov ID, NCT04236180.

Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs.

Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed and what determines this willingness.

Design: We applied a cross-sectional survey design.

Methods: We distributed 4400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale of 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner.

Results: A total of 2008 questionnaires were returned (45.6%). The average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company scored lowest. Factors associated with higher willingness included an optimistic outlook about receiving support from others, family caregiving experience and prior volunteering around serious illness or dying.

Conclusion: People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience with illness, death or dying and when they felt supported by different groups of people. Community-based models that build support around people with care needs could explore to what extent this willingness translates into durable community support. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning.

Background: In recent years, there has been a rise in international (care) movements that prioritise community-centred initiatives such as age-friendly communities, compassionate communities or integrated community care. Although these movements have different focal points, they share common features: seeking to address systemic failures in (care) services, value the participation of end-users, focus on unmet (care) needs, through a local, neighbourhood-oriented approach. In the Flemish and Brussels regions notably the concept of Caring Neighbourhoods is experiencing rapid growth.

Objectives: The objective of the present study is to examine the development and implementation of 35 Caring Neighbourhood initiatives in Flanders and Brussels (Belgium) to explore the added value of such projects, as well as the crucial elements for creating Caring Neighbourhoods.

Design: Thirty-five caring neighbourhood projects were examined by means of five focus group interviews with project coordinators (n = 34) and five focus group interviews with neighbourhood residents (n = 27), using participant-generated photo elicitation.

Methods: The focus group sessions were recorded, transcribed and data were labelled using an inductive analytical framework, following the steps of reflexive thematic analysis.

Results: The analysis of the 35 Caring Neighbourhoods showed that fostering connections was key in building Caring Neighbourhoods: connections among residents, connections between residents and care and support services and among care services themselves. The three primary ways to connect people were through activities, places and people. Also, the role of the Caring Neighbourhood coordinator is highlighted as key, which should focus on weaving existing resources, facilitating and coaching instead of organising. Altogether, the projects brought meaning and value to participants' lives, enhancing overall life satisfaction and well-being, with an emphasis on physical and psychosocial care and support.

Conclusion: Through critically reflecting on our results and other research, we call on researchers to pay increased attention in research on community-centred care initiatives to death, dying and grief, equity and social justice and the need for both warm and cold solidarity.

Objective: To explore the experiences that significantly impact the professional quality of life of people providing palliative care (PC) in Ecuador.

Design: Observational cross-sectional qualitative research.

Methods: In September 2022, 10 focus groups were carried out in four cities in Ecuador; each group lasted from 1 to 2 h, was audio recorded, and transcribed verbatim. Recruitment was conducted through convenience sampling, and a total of 71 individuals (15 students, 50 professionals, and 6 volunteers) linked to PC participated. Content analysis with a phenomenological and inductive approach was used to analyze the data.

Results: People recognized their experiences in PC as having positive and negative impacts on their professional quality of life. Experiences were mapped as affecting them at individual, relational, and contextual levels. These experiences included personal growth, opportunity to provide care, teamwork, death-related issues, inability to deal with work-related stress, social acceptance of PC, and dealing with inefficient health systems, among others.

Conclusion: Despite the positive emotions that arise with caring for others, individuals working and volunteering in PC experience situations that influence their professional quality of life. Addressing these factors to increase satisfaction and ease the burden of PC work is essential. Undergraduate education, continuous professional training, and PC teams should incorporate actions to address these factors at all levels, such as teaching coping skills, fostering social support, and increasing awareness of PC.

Background: The need for palliative care is rising globally with 76% of those who are in need living in low- and middle-income countries (LMICs). Digital health interventions (DHIs) have been identified as a means of making palliative care more widely accessible. This review summarizes the range and characteristics of DHIs used to deliver palliative care in LMICs and sought to identify factors that influence their implementation and utilization.

Objectives: This review aims to summarize the range and characteristics of DHIs used to deliver palliative care in LMICs and identify factors that influence their implementation and utilization.

Design: Mixed-method systematic review incorporating both quantitative and qualitative data.

Data sources and methods: All studies focusing on DHIs for patients who need palliative care (adults/children) and their caregivers (patient and caregiver centred) in LMICs and published in English were identified through a systematic search of MEDLINE, EMBASE, PsycINFO and CINAHL databases. Data synthesis and analysis were carried out following the convergent integrated approach based on the Joanna Briggs Institute (JBI) methodology for mixed-methods systematic reviews.

Results: Fifteen studies were included (three qualitative, four mixed-methods and eight quantitative studies). Telemedicine/mHealth was the most reported DHI utilized in LMICs in delivering palliative care. Patients and caregivers benefited from using DHIs in many ways including increased access to care with reduced discomfort, travel time and risk of health care-associated infections. Health care providers also reported that using DHI such as telemedicine enables them to provide care in a more effective and efficient way. Four factors were identified as the main barriers to implementation: resource constraints; literacy, training and skills; governance, operational and communication issues and technical issues.

Conclusion: DHIs, such as telemedicine, have the potential to enhance accessibility to palliative care in LMICs, particularly in rural areas. Comprehensive strategies for their use are required to address the identified barriers.