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Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors.

ABSTRACT: BACKGROUND:A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. AIM:We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived. DESIGN:This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña. SETTING/PARTICIPANTS:A total of 10 professionals from three different pregnancy counseling services participated in the study. RESULTS:The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved. CONCLUSION:A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

SUBMITTER: Flaig F

PROVIDER: S-EPMC6535800 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

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Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors.

Flaig Franziska F Lotz Julia D JD Knochel Kathrin K Borasio Gian Domenico GD Führer Monika M Hein Kerstin K

Palliative medicine 20190307 6

<h4>Background</h4>A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.<h4>A ...[more]

PMID: 30843464

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Project description:Background and objectivesCompared with non-Latino whites with advanced illness, Latinos are less likely to have an advance directive or to die with hospice services. To improve palliative care disparities, international ESRD guidelines call for increased research on culturally responsive communication of advance care planning (ACP). The objective of our study was to explore the preferences of Latino patients receiving dialysis regarding symptom management and ACP.Design, setting, participants, & measurementsQualitative study design using semistructured face-to-face interviews of 20 Latinos on hemodialysis between February and July of 2015. Data were analyzed using thematic analysis.ResultsFour themes were identified: Avoiding harms of medication (fear of addiction and damage to bodies, effective distractions, reliance on traditional remedies, fatalism: the sense that one's illness is deserved punishment); barriers and facilitators to ACP: faith, family, and home (family group decision-making, family reluctance to have ACP conversations, flexible decision-making conversations at home with family, ACP conversations incorporating trust and linguistic congruency, family-first and faith-driven decisions); enhancing wellbeing day-to-day (supportive relationships, improved understanding of illness leads to adherence, recognizing new self-value, maintaining a positive outlook); and distressing aspects of living with their illness (dietary restriction is culturally isolating and challenging for families, logistic challenges and socioeconomic disadvantage compounded by health literacy and language barriers, required rapid adjustments to chronic illness, demanding dialysis schedule).ConclusionsLatinos described unique cultural preferences such as avoidance of medications for symptom alleviation and a preference to have family group decision-making and ACP conversations at home. Understanding and integrating cultural values and preferences into palliative care offers the potential to improve disparities and achieve quality patient-centered care for Latinos with advanced illness.

Project description:BACKGROUND:The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals. OBJECTIVE:Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home. METHODS:This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology. RESULTS:A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions. CONCLUSIONS:Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.

Project description:BackgroundIn 2018, the Canadian National Advisory Committee on Immunization and the Society of Obstetricians and Gynaecologists of Canada recommended a single dose of tetanus toxoid, reduced diphtheria toxoid and reduced acellular pertussis (Tdap) vaccine in every pregnancy. To understand how perinatal health care providers in Canada are translating recent recommendations for universal antenatal Tdap vaccine into routine clinical practice, we examined health care providers' perceptions of what influences their ability to recommend and provide Tdap vaccine consistently to pregnant women.MethodsBetween June 2018 and July 2019, we conducted semistructured telephone interviews with perinatal health care providers (nurses, midwives, family physicians and obstetricians) from 5 provinces (British Columbia, Manitoba, Ontario, Quebec and Nova Scotia) representing diverse educational experiences, practice settings and models of care. We analyzed the data using interpretive description.ResultsWe interviewed 44 perinatal health care providers (13 family physicians, 12 midwives, 10 obstetricians and 9 nurses) practising in a variety of settings. Health care providers' ability to recommend and provide antenatal Tdap vaccine was strongly influenced by structural constraints in the Canadian perinatal health care system. The participants' clinical training varied, which resulted in different knowledge and practices. Participants felt hindered by a lack of lay information resources. Consistent and convenient vaccine access was perceived to be key to promoting confidence and encouraging uptake, yet antenatal Tdap vaccine was not easily accessible for all women.InterpretationOur findings suggest that Canada's fragmented health care model has a detrimental effect on health care providers' ability to recommend and ensure access to antenatal Tdap vaccine. Lessons from this study are pertinent to the implementation of successful pertussis vaccine programs and future pregnancy vaccination initiatives.

Project description:Background Dealing with life-limiting illnesses, death, dying and grief, is uncharted territory for medical graduates. It is a field that is heavily influenced by cultural, religio-spiritual and social factors. This adds complexity to palliative and end-of-life-care, which challenges newly qualified physicians and requires the formation of appropriate knowledge, skills, and attitudes in junior doctors. This study aimed to obtain insight into the perspectives, perceived self-efficacy, and preparedness of newly qualified Nigerian physicians in practising palliative care and identify potential variables influencing them. Methods The study was a cross-sectional, multi-centre survey of newly qualified Nigerian physicians, using semi-structured, in-depth qualitative interviews. The data were analysed by applying content-structuring qualitative content analysis. Results Forty semi-structured interviews were conducted with medical house officers at two tertiary institutions in Nigeria. The perceived self-efficacy and preparedness of newly qualified Nigerian physicians in practising palliative care were reported to be higher in areas of family involvement, and pain and symptom management than in areas of breaking bad news, prognosis, and diagnosing dying. Major influences on the young physicians’ perceived self-efficacy and preparedness in practising palliative care were socio-economic circumstances of a resource-limited setting and cultural-religious considerations. In addition, the perceived impact of palliative care education and experience was documented. Conclusions This study offers valuable insights into the perceived self-efficacy and preparedness of newly qualified physicians and reveals the influence of socio-cultural and socio-economic variables in Nigeria. Evidence of the social, cultural, and religio-spiritual dimensions of palliative care is indispensable for culturally sensitive care. These results could aid in the development of appropriate knowledge, skills, and attitudes in newly qualified physicians through culturally and contextually appropriate palliative care training measures. The results may be applicable to other sub-Saharan African settings and may be used to improve future palliative care education, training, and practice. Supplementary Information The online version contains supplementary material available at 10.1186/s12904-022-01028-w.

Project description:IntroductionThe World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers.MethodsA descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis.ResultsTwenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder.ConclusionThere is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.

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Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors.

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Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors.

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