Assistência em cuidados paliativos a pessoa idosa na atenção primária a saúde

This study aims to understand the significance of palliative care for the elder health care professionals working in primary health care. Descriptive study of qualitative approach. Conducted in three health units of the Family and a core of support for Health, the Felipe Camarão neighborhood, District of Natal Health West, RN. Of the 25 participants, 19 are professionals of the Family Health Strategy and six of the Center for Support to Health, the majority being women, with minimal professional work experience, a year in primary health care. The study was approved by the Ethics Committee of the Federal University of Rio Grande do Norte, under CAAE no. 43895815.4.0000.5537. There were individual interviews between July and September 2015, with the use of questionnaire containing open and closed questions on the topic of study. Our results were recorded in MP4 and transcribed into written language, and analyzed using the open coding process medium in which the categories were interpreted and identified, followed by axial coding, where categories were developed and systematically related. Three categories emerged: enhancement of elder health professionals in palliative care, behavioral health professionals across care in palliative care in primary care and disjointed Meaning between palliative care and health professionals. The categories were interpreted and analyzed by the theoretical framework of social phenomenology of Alfred Schütz. Regarding the valuation of subjective perception of professionals, it is clear the issue of the complexity of multiple relationships through various aspects of his central task: focus a philosophy of the world's reality, namely a phenomenology of natural attitude; Before the professional behavior were identified: the discovery and depth of assumptions through the structure, and meaning in a common sense, and at the meaning of the disconnection between the health professionals-including that reality imminent can be represented by individuality special interest of the experience. It follows that health professionals understand there is a difficulty facing the assistance in palliative care to the elderly in primary care, and this difficulty, characterized by the complexity of social interactions across the joint teamwork. Although, I believe that the articulation between the teams, work and family, is essential for the subsequent improvement of care in palliative care favoring the health context surrounding the Elder.

Parental Bereavement: Looking Beyond Grief - Challenges and Health

For most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known.

This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.

Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.

Evaluación de la calidad de un servicio de voluntariado en oncología: un Análisis Importancia-Valoración (IPA)

Objective: Using an Importance-Performance Analysis (IPA), this paper examined a Radiotherapy and Oncological Patient and Non-patient perceived importance and performance of ten Humanization Volunteer Program selection factors in the General Hospital in Spain.Methods: The authors identified a list of seven items from the Health-marketing literature reviews, and each item was rated using a 5-point Likert scale. Responses were obtained of 148 usable interviews.Results: The importance-performance patient grid was corrected with literature recommendations and, in the patient sample, shows three items fall in the “Keep up the good work” quadrant, four items fall into the “Low priority” quadrant, zero items fall into the “Possible overkill” quadrant, and no items fall in the “Concentrate here” quadrant. Non-patient (n=80) factors means shows statistical differences with patient (n=68) means in catering (t=-2.38; df.=146; p<0.05), and information (t=2.16; df146; p<0,05).Conclusions: The results are useful in identifying areas for strategic focus to help Health Services managers develop humanization programs with volunteer workers and different program users. Implication to volunteer programs managers and researchers were discussed.

Music therapy, in tuning at the end of life

In this article music therapy is presented as a helpful tool to support the persons (and their relatives) living at the end of their life and, also, as a non pharmacological and complementary therapy in an integral and holistic medicine. What we report here comes from the direct experience, nourished after many years of interventions and reflections in oncology and palliative care units. We’re talking about silence, music, therapy, models and techniques. We will read and feel therapeutic sessions… but above all, we’re talking about life, conscience and love.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Étude exploratoire du recours à des interventions médicales de type "lourd' pour soulager la souffrance existentielle en fin de vie

Au cours du siècle dernier, des améliorations au niveau des conditions de vie ainsi que des avancées importantes dans les sciences biomédicales ont permis de repousser les frontières de la vie. Jusqu’au début du XXe Siècle, la mort était un processus relativement bref, survenant à la suite de maladies infectieuses et avait lieu à la maison. À présent, elle survient plutôt après une longue bataille contre des maladies incurables et des afflictions diverses liées à la vieillesse et a le plus souvent lieu à l’hôpital. Pour comprendre la souffrance du malade d’aujourd’hui et l’aborder, il faut comprendre ce qu’engendre comme ressenti ce nouveau contexte de fin de vie autant pour le patient que pour le clinicien qui en prend soin. Cette thèse se veut ainsi une étude exploratoire et critique des enjeux psychologiques relatifs à cette mort contemporaine avec un intérêt premier pour l’optimisation du soulagement de la souffrance existentielle du patient dans ce contexte. D’abord, je m’intéresserai à la souffrance du patient. À travers un examen critique des écrits, une définition précise et opérationnelle, comportant des critères distinctifs, de ce qu’est la souffrance existentielle en fin de vie sera proposée. Je poserai ainsi l’hypothèse que la souffrance peut être définie comme une forme de construction de l’esprit s’articulant autour de trois concepts : intégrité, altérité et temporalité. D’abord, intégrité au sens où initialement l’individu malade se sent menacé dans sa personne (relation à soi). Ensuite, altérité au sens où la perception de ses conditions extérieures a un impact sur la détresse ressentie (relation à l’Autre). Et finalement, temporalité au sens où l’individu souffrant de façon existentielle semble bien souvent piégé dans un espace-temps particulier (relation au temps). Ensuite, je m’intéresserai à la souffrance du soignant. Dans le contexte d’une condition terminale, il arrive que des interventions lourdes (p. ex. : sédation palliative profonde, interventions invasives) soient discutées et même proposées par un soignant. Je ferai ressortir diverses sources de souffrance propres au soignant et générées par son contact avec le patient (exemples de sources de souffrance : idéal malmené, valeurs personnelles, sentiment d’impuissance, réactions de transfert et de contre-transfert, identification au patient, angoisse de mort). Ensuite, je mettrai en lumière comment ces dites sources de souffrance peuvent constituer des barrières à l’approche de la souffrance du patient, notamment par l’influence possible sur l’approche thérapeutique choisie. On constatera ainsi que la souffrance d’un soignant contribue par moment à mettre en place des mesures visant davantage à l’apaiser lui-même au détriment de son patient. En dernier lieu, j'élaborerai sur la façon dont la rencontre entre un soignant et un patient peut devenir un espace privilégié afin d'aborder la souffrance. J'émettrai certaines suggestions afin d'améliorer les soins de fin de vie par un accompagnement parvenant à mettre la technologie médicale au service de la compassion tout en maintenant la singularité de l'expérience du patient. Pour le soignant, ceci nécessitera une amélioration de sa formation, une prise de conscience de ses propres souffrances et une compréhension de ses limites à soulager l'Autre.

Undertaking Sensitive Interviews: a Researcher’s Experience of Interviewing Bereaved Parents and Family GPs

The presentation describes the researcher’s experience of undertaking sensitive interviews. Background The interviews form part of a current study that is examining bereaved parents’ experience of caring for their child at home as well as the experience of their GP. This study builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived as the gatekeeper for care within the community. Presentation aim To describe the process of both the preparation for, and undertaking of, sensitive interviews. Study methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM). QM will be used to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40-60 GPs will be involved in the QM. Findings The preparation for these interviews will be discussed and compared to the supportive bereavement visits undertaken within the researcher’s role as a paediatric Macmillan nurse. The experience of undertaking the interviews will be exemplified with findings from the initial and the current, study. Papers’ contribution The researcher’s experience of preparing for and undertaking sensitive interviews may prove beneficial to other researchers.

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.

Les métamorphoses du rapport politique à la mort (recherche de pivots structurant la réflexion en médecine palliative)

Notre recherche explore quelques moments forts des métamorphoses du rapport politique à la mortalité sous examen des thèmes de l’interdit, de la dignité, de l’autonomie et de l’altérité. Nous dégageons des ancrages propices à nourrir la pensée actuelle en médecine palliative. Ainsi, nous livrons une enquête philosophique, appréciant pour nous Occidentaux, les influences marquantes des pensées gréco-romaine, chrétienne et moderne. Ces bases, édifiant notre monde politique, ont suscité l’émergence de la médecine palliative. C’est pourquoi, nous tentons de caractériser et de comprendre les problématiques nouvelles, dans leurs aspects politique et éthique, envisagées à l’aune des formes contemporaines d’accompagnement des mourants. Notre effort tente de discerner les aspirations et les impasses. L’étude de la métamorphose des repères fait ressortir une dissociation accentuée au fil du temps. En effet, au fur et à mesure, notre entreprise d’interprétation du fondement de ces questions politiques dévoilait : une reconnaissance universelle de l’interdit d’homicide, mais accusant une perte du lien moral au profit d’une visée amorale ; un aval unanime du respect de la dignité, mais manifestant une confusion et une division ostensible entre conceptions intrinsèque et extrinsèque ; une affirmation péremptoire de l’autonomie, mais avec une distanciation marquée au regard de la façon d’envisager la part de l’autre ; une déclinaison de liens humains reconnus de tous, mais exacerbés dans une tension artificielle entre individualisme et altruisme. Au surplus, en constatant la distance et la dislocation entre le public et le privé, entre la réclamation de fraternité et la recherche d’amicalité signifiante, nous avons envisagé la communauté palliative comme un lieu de résistance à cette décomposition menaçante au sein de la communauté politique. À terme de l’analyse, nous avons fondé les concepts « d’allonomie » et de « suspension éthique ». Il s’agit de contributions originales destinées à donner à la philosophie toute sa dimension sapientielle au service de l’accompagnement palliatif.

Prosocial Behaviour in Palliative Nurses: Psychometric Evaluation of the Prosociality Scale

Aim: The aim of this study was to examine the psychometric properties of a prosociality scale within the palliative nursing context, and then examine the impact of prosocial behaviour in relation to job and educational satisfaction among palliative nurses. Methods: An online cross-sectional survey was conducted in 25 Italian palliative care centres, with a total of 107 nurses completing the prosociality scale by Caprara et al (2005). Exploratory and confirmatory factor analyses were examined to evaluate a multidimensional model of prosociality. Results: A three-factor solution with a second order factor fitted the data well. The three dimensions extracted were labelled as helping, empathy, and sharing. Participants reported high levels of prosociality. In addition, prosociality was positively associated with job and educational satisfaction. Conclusions: The prosociality scale was valid and reliable when tested with palliative nurses. Although prosociality may be embedded in nurses’ personalities, this quality should be actively promoted to expand and improve the culture and the ethics of nursing.

Avaliação da eficácia da radioterapia paliativa no controlo da dor em doentes com metástases ósseas

A Radioterapia é um dos tratamentos disponíveis para tratar o cancro seja com intuito curativo ou paliativo. O objectivo da radioterapia paliativa consiste em controlar os sintomas apresentados pelos doentes com doença avançada, como por exemplo a dor provocada pela presença de metástases ósseas, que é o sintoma em estudo neste trabalho. A Radioterapia deve causar o mínimo de efeitos secundários e o mínimo desconforto possível aos doentes, não devendo aumentar a morbilidade, mas antes proporcionar maior qualidade de vida aos doentes. Recentemente, vários estudos investigaram a utilização da radioterapia em fim de vida, proporcionando uma linha orientadora nesta área, a partir das condições clínicas dos doentes submetidos a radioterapia perto do final da vida. A escolha do tema deste trabalho resulta de uma inquietação sentida no dia-a-dia, aquando da realização dos tratamentos de radioterapia a doentes paliativos com dor óssea e com mau estado geral. Exigindo a radioterapia um posicionamento e imobilização precisos e rigorosos pode, por vezes, causar algum desconforto aos doentes. No caso dos doentes com necessidades paliativas, nomeadamente com dor moderada a forte, é importante inferir acerca do real benefício de um tratamento que ao invés de promover alívio, lhes pode provocar mais dor e desconforto, indo contra às boas práticas preconizadas em cuidados paliativos. Considera-se que o tema é relevante para a melhoria dos cuidados prestados ao doente oncológico a realizar tratamentos de radioterapia, na medida em que permite realizar uma reflexão acerca da eficácia deste tratamento em fim de vida e sua aplicabilidade quando estamos perante doentes com prognóstico de vida limitado. O estudo em causa é um estudo descritivo exploratório, tendo sido realizada uma análise sistemática da informação contida nos processos electrónicos dos doentes, disponíveis na rede hospitalar, de acordo com os critérios de inclusão estabelecidos, no sentido de averiguar a eficácia do tratamento de radioterapia no alívio da dor. O estudo permitiu concluir que a radioterapia é um tratamento eficaz no controlo da dor em doentes com metástases ósseas, não vindo alterar as conclusões avançadas por outros estudos e outros autores internacionais. No entanto, é importante a realização de um prognóstico mais preciso na tomada de decisão terapêutica para que doentes que não vão beneficiar do tratamento de radioterapia possam ser referenciados para cuidados paliativos mais precocemente. Quanto à escolha do esquema terapêutico, o esquema de fracção única deveria ser mais comummente utilizado pela sua demonstrada eficácia, como o comprovam os diversos estudos referenciados neste trabalho.

Étude exploratoire du recours à des interventions médicales de type "lourd' pour soulager la souffrance existentielle en fin de vie

Au cours du siècle dernier, des améliorations au niveau des conditions de vie ainsi que des avancées importantes dans les sciences biomédicales ont permis de repousser les frontières de la vie. Jusqu’au début du XXe Siècle, la mort était un processus relativement bref, survenant à la suite de maladies infectieuses et avait lieu à la maison. À présent, elle survient plutôt après une longue bataille contre des maladies incurables et des afflictions diverses liées à la vieillesse et a le plus souvent lieu à l’hôpital. Pour comprendre la souffrance du malade d’aujourd’hui et l’aborder, il faut comprendre ce qu’engendre comme ressenti ce nouveau contexte de fin de vie autant pour le patient que pour le clinicien qui en prend soin. Cette thèse se veut ainsi une étude exploratoire et critique des enjeux psychologiques relatifs à cette mort contemporaine avec un intérêt premier pour l’optimisation du soulagement de la souffrance existentielle du patient dans ce contexte. D’abord, je m’intéresserai à la souffrance du patient. À travers un examen critique des écrits, une définition précise et opérationnelle, comportant des critères distinctifs, de ce qu’est la souffrance existentielle en fin de vie sera proposée. Je poserai ainsi l’hypothèse que la souffrance peut être définie comme une forme de construction de l’esprit s’articulant autour de trois concepts : intégrité, altérité et temporalité. D’abord, intégrité au sens où initialement l’individu malade se sent menacé dans sa personne (relation à soi). Ensuite, altérité au sens où la perception de ses conditions extérieures a un impact sur la détresse ressentie (relation à l’Autre). Et finalement, temporalité au sens où l’individu souffrant de façon existentielle semble bien souvent piégé dans un espace-temps particulier (relation au temps). Ensuite, je m’intéresserai à la souffrance du soignant. Dans le contexte d’une condition terminale, il arrive que des interventions lourdes (p. ex. : sédation palliative profonde, interventions invasives) soient discutées et même proposées par un soignant. Je ferai ressortir diverses sources de souffrance propres au soignant et générées par son contact avec le patient (exemples de sources de souffrance : idéal malmené, valeurs personnelles, sentiment d’impuissance, réactions de transfert et de contre-transfert, identification au patient, angoisse de mort). Ensuite, je mettrai en lumière comment ces dites sources de souffrance peuvent constituer des barrières à l’approche de la souffrance du patient, notamment par l’influence possible sur l’approche thérapeutique choisie. On constatera ainsi que la souffrance d’un soignant contribue par moment à mettre en place des mesures visant davantage à l’apaiser lui-même au détriment de son patient. En dernier lieu, j'élaborerai sur la façon dont la rencontre entre un soignant et un patient peut devenir un espace privilégié afin d'aborder la souffrance. J'émettrai certaines suggestions afin d'améliorer les soins de fin de vie par un accompagnement parvenant à mettre la technologie médicale au service de la compassion tout en maintenant la singularité de l'expérience du patient. Pour le soignant, ceci nécessitera une amélioration de sa formation, une prise de conscience de ses propres souffrances et une compréhension de ses limites à soulager l'Autre.

'The horse has bolted I suspect': A qualitative study of clinicians' attitudes and perceptions regarding palliative rehabilitation.

BACKGROUND: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. AIM: To explore palliative medicine physicians' attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. DESIGN: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. PARTICIPANTS: Australian palliative medicine physicians working in inpatient palliative care units. RESULTS: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years' experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians' attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. CONCLUSION: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.