| 1. |
- Currow, David C., et al.
(författare)
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Sleeping-related distress in a palliative care population : A national, prospective, consecutive cohort
- 2021
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 35:9, s. 1663-1670
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Tidskriftsartikel (refereegranskat)abstract
- Background: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. Aim: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. Design: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). Setting/Participants: People (n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services (n = 152) 2013–2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). Results: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40–60). Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99–10.8). Conclusions: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.
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| 2. |
- De Vleminck, A, et al.
(författare)
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Engagement of specialized palliative care services with the general public: A population-level survey in three European countries
- 2022
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Ingår i: Palliative medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 36:5, s. 878-888
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Tidskriftsartikel (refereegranskat)abstract
- There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) ( n = 50), Sweden ( n = 129) and the UK ( n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services’ dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.
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| 3. |
- Eneslätt, Malin, et al.
(författare)
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Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards
- 2021
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 35:1_suppl
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: There is growing interest in community-based advance care planning (ACP) interventions, but few studies investigate the societal impact of such initiatives. A Swedish adaptation of the GoWish cards, the DöBra cards, were used as a tool in the SweACP participatory action research project with older people in the community, without imminent End-of-Life (EoL) care needs. Due to popular demand, the DöBra cards were later made available to the general public as a social innovation.Aim: To explore how the publicly available DöBra cards have been disseminated and used without researchers’ engagement, to provide a basis for understanding their impact in a wider community setting.Methods: Using a Ripple Effects Mapping approach, we followed three chains of dissemination of the DöBra cards originating in a patient organization, a national interest organization for older people, and in a health care organization. Data were collected through interviews with 20 participants and analyzed with directed content analysis.Results: A variety of strategies for use were noted, as the DöBra cards were adapted to fit needs in different personal, professional, and organizational settings. The cards were found to act as both a means to raise awareness about EoL issues in different contexts, as well as an end in themselves, e.g. by facilitating ACP conversations for people with serious disease. Resistance, from various instances, to use or promotion of the DöBra cards was however also found. Impact included personal development as well as strengthened personal and professional relationships, with potential to affect EoL care provision.Conclusions: The broad dissemination of the DöBra cards in a variety of contexts beyond those controlled by researchers, has led to capacity building in dealing with EoL issues in the community, as the topic of dying and death has been brought to agendas in new contexts.
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| 4. |
- Garon, Michela, et al.
(författare)
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A systematic practice review : Providing palliative care for people with Parkinson’s disease and their caregivers
- 2024
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Ingår i: Palliative Medicine. - 0269-2163. ; 38:1, s. 57-68
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Forskningsöversikt (refereegranskat)abstract
- Background: People with Parkinson’s disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. Aim: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson’s disease and their caregivers. Design: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the ‘do’, ‘do not do’ and ‘do not know’ recommendations for palliative care. Data sources: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. Results: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. Conclusions: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson’s disease and their caregivers.
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| 5. |
- Hudson, P L, et al.
(författare)
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Strategies and checklist for designing and conducting palliative care research with family carers : EAPC international expert elicitation study
- 2023
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 37:1, s. 163-173
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement.AIM: To develop strategies to improve the design and conduct of research with family carers.DESIGN: Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature.SETTING/PARTICIPANTS: Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving.RESULTS: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals.CONCLUSIONS: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.
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| 6. |
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| 7. |
- Keegan, O., et al.
(författare)
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Using the Delphi technique to achieve consensus on bereavement care in palliative care in Europe: An EAPC White Paper
- 2021
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 35:10, s. 1908-1922
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Tidskriftsartikel (refereegranskat)abstract
- Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe. © The Author(s) 2021.
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| 8. |
- Kochovska, Slavica, et al.
(författare)
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The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden : An exploratory analysis of the BEAMS trial
- 2024
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Ingår i: Palliative Medicine. - 0269-2163. ; 38:1, s. 156-162
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Tidskriftsartikel (refereegranskat)abstract
- Background: Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers’ perceived burden. Aim: To explore the impact on caregiver burden of active treatment of people with chronic breathlessness (modified Medical Research Council (mMRC) ⩾ 3) and chronic obstructive pulmonary disease (COPD) with regular, low-dose, sustained-release morphine within a multi-site, double-blind, randomised, placebo-controlled trial. Design: Exploratory analysis of self-reported caregiver burden at baseline and end of week 3 in a randomised, double-blind, placebo-controlled study. Caregiver measures included: demographics and perceived burden (Zarit Burden Interview 12-item short-form questionnaire). Patient measures included: worst breathlessness and FitBitR-measures. Setting/participants: All consenting caregivers of trial patient participants in a multi-site study recruiting from palliative care and respiratory services. Results: Caregivers (n = 49; 59% women; median age 68 years [IQR 50–75]) reported median baseline caregiver burden 12 [IQR 5–17], with 53% reporting high burden (⩾13). Eighty-four percent of caregivers reported no change in burden. In people whose worst breathlessness improved, caregiver burden moved in the same direction, though the correlation was not significant (rs = 0.25, p = 0.17). Conversely, caregiver burden worsened as patients’ minutes lightly active increased, with the correlation being significant (rs = 0.56, p = 0.04). Conclusions: Caregivers reported high levels of caregiver burden, but patients’ response to treatment in terms of their symptom and function may influence change in caregiver burden over a three-week period.
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| 9. |
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| 10. |
- McGlinchey, Tamsin, et al.
(författare)
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Updating international consensus on best practice in care of the dying : A Delphi study
- 2023
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 37:3, s. 329-342
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Tidskriftsartikel (refereegranskat)abstract
- Background: Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the ‘10/40 Model’ of care for the dying, in 2013. The model includes 10 ‘Key Principles’ that underpin 40 ‘Core Outcomes’ of care. It was necessary to update consensus on the 10/40 Model to ensure that it remains clinically relevant and applicable for practice. Aim: Update international consensus on the content of the 10/40 Model. Design: Delphi study utilising questionnaire completion; each round informed the need for, and content of the next. Free text comments were also sought. Three rounds of Delphi were undertaken. Setting/participants: A total of 160 participants took part in round 1, representing 31 countries; 103 in round 2 and 57 in round 3. Participants included doctors, nurses, researchers and allied health professionals, with over 80% working predominantly in palliative care (general/specialist not specified). Results: Minor amendments were made to seven items related to: recognition of the dying phase, ongoing assessment of the patient’s condition, communication with patients about the plan of care and care in the immediate time after the death of a patient. Results supported the addition of a sub core outcome for care provided after death. Conclusion: The updated 10/40 Model will guide the delivery of high-quality care for dying patients regardless of the location of care. Further work should focus on increasing lay participation and participation from low income and culturally diverse countries.
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| 11. |
- Melin-Johansson, Christina, 1956-, et al.
(författare)
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Talk for life - conversations in palliative care : Establishing a Trusting Relation: Interdisciplinary Strategies
- 2023
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 37:1 Supplement
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Tidskriftsartikel (refereegranskat)abstract
- Background/aims: In Sweden, palliative care, is an interdisciplinary approach including e.g. doctors, nurses, hospital social workers, physiotherapists and occupational therapists, having knowledge about the patient’s physical and medical status. Communication about existential issues as life and death, and meaning, contribute to relieve symptoms for patients and support their next-of-kin. Today, these conversations are not provided on equal terms to all patients in palliative care. Therefore, there is a need for deeper knowledge about healthcare professionals’ experiences of existential conversations with patients and their next-of-kin in palliative care, and investigate their main concerns to initiate and implement these conversations.Aim:To deepen the understanding of healthcare professionals’ communication strategies and main concerns in conversations with patients having palliative care needs and their next-of kin.Methods: Design: A qualitative approach using grounded theory method for data collection and analysis with a focus on communication processes in the participants’ natural settings. Seven focus group interviews with assistant and registered nurses, psysiotherapists and occupational therapists were conducted. The analysis is in progress and final results will presented at the conference.Results: Preliminary results: Professionals’ main concerns involved “Establishing a trusting relationship” which they solved by “Maintaining presence” despite challenges. These challenges affected how they handled their main concern and are represented in the categories “Talking about death” “Capturing wishes and needs” and “Guiding the patient and next-of-kin”.Conclusions: A theory based on the professional’s main concerns and challenges will be developed when all data have been analyzed.
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| 12. |
- Miladinia, Mojtaba, et al.
(författare)
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Determining massage dose-response to improve cancer-related symptom cluster of pain, fatigue, and sleep disturbance : A 7-arm randomized trial in palliative cancer care
- 2023
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 37:1, s. 108-119
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Tidskriftsartikel (refereegranskat)abstract
- Background: The efficacy of various massage doses in palliative cancer care settings is still debated, and no specific protocol is available. Aim: Evaluating response to various massage doses for symptom cluster of pain-fatigue-sleep. Design: A 7-arm randomized-controlled trial with weekly massage for 4 weeks depending on the prescribed dose (15-, 30-, or 60-min; 2x or 3x/week) and a 4-week follow-up. The intensities of pain, fatigue, and sleep disturbance were measured using a 0-10 scale at nine-timepoint; baseline, weekly during the intervention, and the follow-up period. Then, the mean scores of the three symptoms were calculated as the symptom cluster intensity at each timepoint. IRCT.ir IRCT20150302021307N5. Setting/participants: Adults with cancer (n = 273) who reported all three symptoms at three oncology centers in Iran. Results: The odds of clinical improvement (at least 30% reduction in symptom cluster intensity from baseline) increased with dose-escalation significantly [(OR = 17.37; 95% CI = 3.87-77.90 for 60-min doses); (OR = 11.71; 95% CI = 2.60-52.69, for 30-min doses); (OR = 4.36; 95% CI = 0.94-20.32, for 15-min doses)]. The effect durability was significantly shorter at 15-min doses compared to 30- and 60-min doses. The odds of improvement for doses 3x/week was not significant compared to doses 2x/week (OR = 12.27 vs OR = 8.34); however, the effect durability for doses 3x/week was significantly higher. Conclusions: The findings indicated that dose-escalation increases the efficacy of massage for the pain-fatigue-sleep symptom cluster. Although the 60-min doses were found to be more effective, the 30-min doses can be considered more practical because they are less costly and time-consuming. Our findings can be helpful to develop massage guidelines in palliative care settings.
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| 13. |
- Morberg Jämterud, Sofia, PhD, 1977-, et al.
(författare)
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Health care professionals' perceptions of factors influencing the process of identifying patients for serious illness conversations : A qualitative study
- 2022
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 36:7, s. 1072-1079
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
- Söderman, Annika, 1980-, et al.
(författare)
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The Swedish dignity care intervention for older persons with palliative care needs in home care : experiences from nurses
- 2020
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Ingår i: Abstracts from the 11th EAPC World Research Congress Online, 7th – 9th October 2020. - : Sage Publications.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Older persons’ dignity has to be respected to enhance their quality of life. If not, older persons’ will to live can disappear and their suffering grow. One intervention targeting older persons with palliative care needs, is the Swedish Dignity Care Intervention (DCI-SWE). It includes communication support for nurses with recommendations of evidence-based dignity care actions. Aim: To describe experiences about the DCI-SWE from home care nurses’ (HCNs) perspective.Methods: Data were obtained from three focus group interviews, one individual interview and reflective diaries from HCNs (n=11). Data were analyzed with qualitative inductive content analysis.Results: The DCI-SWE offered structure for HCNs while providing palliative care. It facilitated for HCNs to get an overview of older persons’ concerns and to discuss with the older person. Older persons were thus given an opportunity to be seen and to be listened to. However, there were some prerequisites for introducing DCI-SWE. It facilitated if older persons were informed about their illness, if HCNs had the ability to hold conversations, and had space for uninterrupted meetings with the person. Some HCNs found it challenging to discuss deeper aspects, for example about death, but DCI-SWE was also found to develop some of the HCNs communication skills. Resources supporting the use of DCI-SWE within the organization were managers’ leadership, sufficient time and staff. HCNs also requested time to reflect while using DCI-SWE in their daily practice.Conclusion: DCI-SWE can contribute to communication within general palliative home care, and be a valuable support for HCNs to confirm older persons. DCI-SWE can also assist the care planning of the older person, and provide HCNs with guidance for dignity-conserving care.
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