Familial and Social Implications of Breast and Gynaecological cancer in Kerala, India.

BACKGROUND: Due to the paucity of reliable data to determine the components of family-based comprehensive care for cancer in India, we explored the familial implications of gynaecological and breast cancer diagnosis and treatment through a mixed-method study. METHODS: The mixed method study included 130 women aged above 18 with a confirmed diagnosis of gynaecological or breast cancer recruited from three selected tertiary hospitals in Kerala, India. Information on quality of life (36-Item Short Form Survey (SF-36)), psychological distress (distress thermometer), and the familial, interpersonal, social, and community impacts of cancer (semi-structured interview guide) were elicited. Linear regression was used to identify the factors associated with distress and the factors were explored further using thematic analysis. RESULTS: Patients included in the study (n = 130; mean age 57.5 years) had moderate or mild (66.9%) to severe (25.4%) distress. Concerns about work (93%), difficulty in; home care and housing (82%), care for dependents (65%), unempathetic family (87.6%), isolation (70%), and body image (65%) were major reasons for their distress. Physiological, social, and family-related stressors among the respondents included challenges in physical functioning, intense physical symptoms like fatigue, loss of appetite and sleep, role restrictions, alterations in family responsibilities, functional dependency, inadequate family support, challenges in social and interpersonal interactions, and an unsupportive work environment. CONCLUSION: Cancer is a health crisis that involves psychological, social, and economic distress, compelling professionals to design multifaceted individualized care packages rather than only concentrating on medical management to alleviate their distress.

Music Therapy to Facilitate Relationship Completion at the End of Life: A Mixed-Methods Study.

The concept of relationship completion is embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life. No studies have been published investigating and trying to understand how music therapy facilitates the Four Expressions in Life. This convergent mixed-methods study examined the effects of music therapy to facilitate relationship completion for patients at the end of life and their families in Taiwan, and explored their personal experiences in music therapy sessions. Thirty-four patients at end-of-life care and 36 of their family members participated in a single music therapy session with a one-group pretest-posttest design using standardized quality-of-life measures for patients at the end of life and families. A nested sample of 5 patients and 9 family members completed semi-structured interviews. Significant differences between the pre and post session scores were revealed for patients in the Life Completion subscale of the QUAL-E (p < .001), and the global QoL Indicator (p < .001), and for families in the Completion subscale of the QUAL-E (Fam) (p < .001), and the Overall Quality of Life (p < .001). Four themes around opportunities emerged from the interviews: the opportunity for exploration, for connection, for expression, and for healing. The integrated findings suggest that music therapy facilitated relationship completion and improved quality of life for both patients and their families. Furthermore, this study supports that the transformative level of music therapy practice within a single session for end-of-life care is attainable.

Cultural Influences on Making Nutritional Adjustments in Type 2 Diabetes in Pakistan: The Perspectives of People Living With Diabetes and Their Family Members.

In Pakistan, type 2 diabetes is widespread, and although dietary recommendations from healthcare professionals are critical to its treatment, cultural norms can have a great influence on the dietary habits of people living with diabetes (PLwD). Understanding the social aspects of the lives of PLwD is crucial when examining the effectiveness of nutritional recommendations and adjustments. This study investigated (1) how PLwD and their family members adjust their nutrition to the recommendations of healthcare professionals to manage type 2 diabetes mellitus (T2DM) and (2) what do PLwD and their family members perceive as enablers and barriers to the necessary nutritional adjustments for managing T2DM. Prime consideration was given to experiences of living in Pakistan as the cultural context. Semi-structured interviews were conducted with 30 PLwD and 17 family members; the data were analysed thematically. Three themes emerged: (i) 'Influence of family system, gender, and age on meals prepared at home': family hierarchy and opinions based on gender and age can enable or hinder nutritional adjustment in meals prepared at home; (ii) 'Temptations of "unhealthy" foods, festivals, cultural interactions, and social etiquette': family/social interactions at home, gatherings, or festivities can affect PLwD's ability to resist temptations to eat foods prohibited by healthcare professionals; and (iii) 'Folk knowledge, folk remedy, and the balance between culture and Western medicine': PLwD and their family members in Pakistan hold strong beliefs concerning foods' medicinal properties. Power dynamics within families need to be considered when making nutritional recommendations. Medical guidelines should acknowledge personal agency and cultural beliefs.

Finding family resilience in adversity: A grounded theory of families with children diagnosed with leukaemia.

AIMS AND OBJECTIVES: To develop a conceptual framework that explores the process of building family resilience among Chinese families with children diagnosed with leukaemia. BACKGROUND: The diagnosis of childhood leukaemia has a devastating effect on the family. Nonetheless, some families were able to positively respond to the crisis. The process through which Chinese families bounce back has received little attention. DESIGN: Grounded theory. METHODS: This study used purposive and theoretical sampling to select 16 parents who agreed to participate in semistructured interviews after children were diagnosed with leukaemia. Data collection and analysis occurred simultaneously. Data were analysed through a process of open, axial and selective coding. The COREQ checklist was followed for reporting. RESULTS: A core category of 'finding family resilience in adversity' was generated. The core category was underpinned by a transition process between two fluid stages: (a) Disrupting the family system, informed by subcategories of negative emotional disturbances and challenges of the diagnosis and treatment journey; (b) Cultivating resilience in families, informed by subcategories of increasing positive attitudes; establishing new family routines; activating good support systems; and practising open family communication. CONCLUSIONS: The transition process from the disruption of the family system to the cultivation of family resilience is perceived as a complex family dynamic in response to childhood leukaemia. Our findings can form the basis for further research about resilience-based family interventions that promote family well-being during the early stages of a childhood leukaemia diagnosis. RELEVANCE TO CLINICAL PRACTICE: It is necessary for healthcare professionals to provide essential support for families to face the challenges of diagnosis and treatment to facilitate the successful transition to family resilience. By understanding the dynamic process of developing family resilience, healthcare professionals are able to focus on these families to provide holistic care that satisfies the specific demands of family members.

Spiritual Care in the Intensive Care Unit: Experiences of Dutch Intensive Care Unit Patients and Relatives.

BACKGROUND/OBJECTIVE: To gain insight into both patients' and relatives' experiences with spiritual care (SC) in the intensive care unit (ICU). METHODS: Method used was qualitative interviewing. This was a thematic, topic-centered, biographical, and narrative approach, using semistructured interviews with thematic analysis. A purposive sampling method was used to select a sample of ICU patients and ICU patients' relatives. An interview guide facilitated individual, semistructured interviews. The interview data were recorded by means of note-taking and audio-recording. Verbatim transcripts were compiled for analysis and interpretation. RESULTS: All 12 participants-7 ICU patients and 5 family members of 5 other ICU patients-experienced ICU admission as an existential crisis. Participants would appreciate the signaling of their spiritual needs by ICU health care professionals (HCPs) at an early stage of ICU admission and subsequent SC provision by a spiritual caregiver. They regarded the spiritual caregiver as the preferred professional to address spiritual needs, navigate during their search for meaning and understanding, and provide SC training in signaling spiritual needs to ICU HCPs. DISCUSSION: Early detection of existential crisis signals with ICU patients and relatives contributes to the mapping of spiritual and religious needs. Spiritual care training of ICU HCPs in signaling spiritual needs by ICU patients and relatives is recommended. Effective SC contributes to creating room for processing emotions, spiritual well-being, and satisfaction with integrated SC as part of daily ICU care.

Effects of Spiritual Care on Well-Being of Intensive Care Family Surrogates: A Clinical Trial.

CONTEXT: Critical illness of a family member is associated with high emotional and spiritual distress and difficult medical decisions. OBJECTIVES: To determine if a semistructured spiritual care intervention improves the well-being of family surrogate decision makers in intensive care (ICU) settings. METHODS: This study is a randomized, allocation-concealed, parallel group, usual care-controlled, single-blind trial of patient/surrogate dyads in five ICUs in one Midwest, academic medical center. Patients were 18 and older admitted to the ICU and unable to make medical decisions. The intervention involved proactive contact from the chaplain, scheduled, semi-structured visits, weekly follow-up, and bereavement calls. The control group received usual care. The primary endpoint was the surrogate's anxiety (Generalized Anxiety Disorders-7 scale), six to eight weeks after discharge. RESULTS: Of 192 patient/surrogate dyads enrolled, 128 completed outcome assessments. At follow-up, anxiety in the intervention group was lower than control (median score 1 (interquartile range 0,6) vs. 4 (1,9), P = 0.0057). The proportion of patients with a minimal clinically important difference (MCID) in anxiety of 2+ was 65.2% in the intervention group vs. 49.2% in control. The odds of an MCID remained higher in adjusted analysis (Odds Ratio 3.11, 95% confidence interval 1.18, 8.21; P = 0.0218) The adjusted odds of an MCID were higher for spiritual well-being (OR 3.79, CI 1.41,10.17; P = 0.0081). Satisfaction with spiritual care was also higher (adjusted mean 3.5 ± 0.4 vs. 2.9 ± 0.1); P < .0001). CONCLUSIONS: Proactive, semistructured spiritual care delivered by chaplains improves well-being for ICU surrogates. Results provide evidence for inclusion of chaplains in palliative and intensive care teams.

The 3 Wishes Program Improves Families' Experience of Emotional and Spiritual Support at the End of Life.

BACKGROUND: The end-of-life (EOL) experience in the intensive care unit (ICU) is emotionally challenging, and there are opportunities for improvement. The 3 Wishes Program (3WP) promotes the dignity of dying patients and their families by eliciting and implementing wishes at the EOL. AIM: To assess whether the 3WP is associated with improved ratings of EOL care. PROGRAM DESCRIPTION: In the 3WP, clinicians elicit and fulfill simple wishes for dying patients and their families. SETTING: 2-hospital academic healthcare system. PARTICIPANTS: Dying patients in the ICU and their families. PROGRAM EVALUATION: A modified Bereaved Family Survey (BFS), a validated tool for measuring EOL care quality, was completed by families of ICU decedents approximately 3 months after death. We compared patients whose care involved the 3WP to those who did not using three BFS-derived measures: Respectful Care and Communication (5 questions), Emotional and Spiritual Support (3 questions), and the BFS-Performance Measure (BFS-PM, a single-item global measure of care). RESULTS: Of 314 completed surveys, 117 were for patients whose care included the 3WP. Bereaved families of 3WP patients rated the Emotional and Spiritual Support factor significantly higher (7.5 vs. 6.0, p = 0.003, adjusted p = 0.001) than those who did not receive the 3WP. The Respectful Care and Communication factor and BFS-PM were no different between groups. DISCUSSION: The 3WP is a low-cost intervention that may be a feasible strategy for improving the EOL experience.

Quality of life of caregivers of end-stage kidney disease patients: Caregivers or care recipients?

BACKGROUND: End-stage kidney disease (ESKD) patients require specific and continuous care, which affects caregivers' quality of life (QOL). It is necessary to define the basic problems and restrictions upon family caregivers of renal patients affecting their physical and psychological status. OBJECTIVES: The main objectives of this narrative review were to examine the literature over the past 10 years, to describe factors associated with QOL of caregivers of patients with ESKD, and to identify the level of subjective burden reported by caregivers. METHODS: A literature search was carried out using the following electronic databases: PubMed, Medscape, Science Direct, Scopus, PsychINFO and other scientific sources. Keywords included 'quality of life', 'caregivers', 'end stage kidney or renal disease patients', 'burden' and a combination of these terms. Only studies from January 2010 to December 2020 were included in this study. RESULTS: The results found that there was significant burden and distress experienced by caregivers that affected their QOL. Patients' QOL is associated with caregivers' QOL. The hours of caring per day and the long-term replacement therapy are associated with great burden. CONCLUSIONS: More awareness to caregivers' QOL is required to meet their needs, reduce anxiety and to improve patients' QOL. Caregiver support could empower and prepare them for initiation of replacement therapy. This can potentially enhance their diseased family members' QOL and could also restrict the use of health care system resources. Given how difficult it is to conceptualize QOL, a holistic approach to patients and caregivers require QOL assessment in each stage of the kidney disease.

Family members' participation in palliative inpatient care: An integrative review.

AIM: To analyse how family members participate in hospital inpatient palliative care, and how their participation could be supported. METHODS: This review followed a methodology outlined in the literature for integrative reviews. A literature search supplemented by a manual search was conducted on four electronic databases during 2020 to 2021: PubMed, CINAHL, PsycINFO, and Cochrane Library. A critical appraisal of the included studies was performed, and data were analysed using inductive content analysis. RESULTS: The literature search resulted in 4990 articles, of which 14 articles were included in this review. Four main categories were identified concerning the participation of family members in hospital inpatient palliative care: participation in the physical care, provision of emotional support, promoting good patient care, and support provided by healthcare professionals for family members' participation. Family members' participation can be supported in different ways, including active communication and adequate information. CONCLUSION: Family members' participation in hospital inpatient palliative care has been an important part of palliative care in hospital settings. Family members should be offered the opportunity to participate in patient care, and their presence in the hospital should be accommodated. Research on the topic is still scarce, and future research is needed from different perspectives, including intervention research.

Assessment of role strain among family caregivers of adult patients with cancer at a national referral hospital in Kenya.

OBJECTIVE: Globally, cancer incidence is on the increase and cancer care is complex, psychologically, physically and financially draining. Family caregivers of patients with cancer in low- and middle-income countries not only face enormous challenges in having their patients access comprehensive cancer treatment services but also the critical and complex roles that they play greatly predispose them to role strain. Role strain is multifaceted and encompasses physical, psycho-social and financial strain. Therefore, this study aimed to assess the level of role strain among the family caregivers of patients with cancer and ensure appropriate referral to care and support services. METHODOLOGY: The study adopted cross-sectional design involving 255 systematically sampled family caregivers of adult patients attending Kenyatta National Hospital outpatient cancer treatment clinic. Quantitative data from Modified Caregiver Strain Index tool and questionnaire was analysed by deriving descriptive statistics and data was presented by use of tables and figures. SPSS software version 25 was utilized in data analysis. RESULTS: From the study findings, the family caregivers who had mild, moderate and severe role strain were 25.9%, 44.3% and 29.8%, respectively. CONCLUSION: Role strain was prevalent among family caregivers and this, therefore, calls for healthcare practitioners to assess all family caregivers of adult patients with cancer for role strain and appropriately refer those experiencing moderate to severe strain for psychological counselling, social and financial support.

A qualitative study of nursing practitioners' experiences with COVID-19 patients dying alone in Greece.

Background: In Greece, there is still limited research on death in isolation due to COVID-19. This deserves attention because of the recent financial crisis, which profoundly impacted public health, and the high relevance of the Hippocratic tradition to the moral values of clinical practice. Methods: A prospective qualitative study using in-depth interviews with 15 frontline nursing practitioners working in a COVID-19 ward or intensive care unit (ICU) was conducted from July 2021 to December 2021. Results: The inability of family members to say a final goodbye before, during, or after death by performing proper mourning rituals is extremely inhuman and profoundly impacts the mental health status of patients, family members, and nursing practitioners. Patients and their family members strongly desire to see each other. Epidemiology, liability, and proper nursing performance emerged as reasons for the enforced strict visitation restrictions. Participants emphasized that visitations should be allowed on an individual basis and highlighted the need for the effective use of remote communication technology, which, however, does not substitute for in-person contact. Importantly, physicians allowed "clandestine" visits on an individual basis. Nursing practitioners had a strong empathic attitude toward both patients and their families, and a strong willingness to provide holistic care and pay respect to dead bodies. However, they also experienced moral distress. Witnessing heartbreaking scenes with patients and/or their families causes nursing practitioners to experience intense psychological distress, which affects their family life rather than nursing performance. Ultimately, there was a shift from a patient-centered care model to a population-centered care model. Furthermore, we identified a range of policy- and culture-related factors that exaggerate the negative consequences of dying alone of COVID-19. Conclusion: These results reinforce the existing literature on several fronts. However, we identified some nuances related to political decisions and, most importantly, convictions that are deeply rooted in Greek culture. These findings are of great importance in planning tailored interventions to mitigate the problem of interest and have implications for other similar national contexts.

Hospitalização e música: significados dos familiares de crianças e adolescentes com câncer / hospitalización y música: significados de las familias de niños y adolescentes con cáncer / Hospitalization and music: meanings of families of children and adolescents with cancer

Objetivo:compreender os significados do processo de hospitalização e da utilização da música como promotora da saúde, na percepção de familiares de crianças e adolescentes que se encontram em tratamento oncológico. Método: pesquisa do tipo exploratória, descritiva, de abordagem qualitativa, fundamentada nos pressupostos da Promoção da Saúde e do Interacionismo Simbólico, a qual teve como participantes dez familiares. A coleta de dados ocorreu por meio de entrevista semiestruturada e foram analisados conforme a análise de conteúdo. Resultados:emergiram três categorias, sendo que os familiares desvelaram os significados da hospitalização e suas mudanças, a música como instrumento de promoção da saúde, suas experiências de melhora e qualidade de vida proporcionada por essa ferramenta. Conclusão:os familiares significaram o processo de hospitalização como um misto de sentimentos e sensações, destacando a música como uma tecnologia de cuidado que promove bem-estar, alegria, esperança e que pode ser empregada no ambiente hospitalar, no setor oncológico

Objective:to understand the meanings of the hospitalization process and the use of music as a health promoter, in the perception of family members of children and adolescents undergoing cancer treatment. Method:exploratory, descriptive research, with a qualitativeapproach, based on the assumptions of Health Promotion and Symbolic Interactionism, which had ten family members as participants. Data collection took place through semi-structured interviews and were analyzed according to content analysis. Results:Threecategories emerged, in which family members present the meanings of hospitalization and its changes, music as a health promotion instrument, their experiences of improvement and quality of life provided by this tool. Conclusion:family members understood the hospitalization process as a mixture of feelings and sensations, highlighting music as a care technology that promotes well-being, joy, hope and that can be used in the hospital environment, in the oncology sector

Objetivo:comprender los significados del proceso de hospitalización y el uso de la música como promotora de la salud, en la percepción de los familiares de niños y adolescentes en tratamiento oncológico. Método:investigación exploratoria, descriptiva, con abordaje cualitativo, basado en los supuestos de Promoción de la Salud e Interaccionismo Simbólico, que contó con diez familiares como participantes. La recolección de datos se realizó a través de entrevistas semiestructuradas y se analizaron según análisis de contenido. Resultados:Surgieron tres categorías, en las que los familiares presentan los significados de la hospitalización y sus cambios, la música como instrumento de promoción de la salud, sus experiencias de mejora y la calidad de vida que brinda esta herramienta. Conclusión:los familiares entendieron el proceso de hospitalización como una mezcla de sentimientos y sensaciones, destacando la música como una tecnología asistencial que promueve el bienestar, la alegría, la esperanza y que puede ser utilizada en el ámbito hospitalario, en el sector oncológico

Contribuições do profissional de psicologia para o paciente em cuidados paliativos / Contributions of the psychology professional to the patient in palliative care / Aportaciones del profesional de la psicología para el paciente en cuidados paliativos

Os cuidados paliativos englobam uma filosofia de cuidados que objetivam a promoção da qualidade de vida e alívio do sofrimento, tanto para o paciente fora de possibilidades de cura quanto aos seus familiares, de modo que possa integrar aspectos de ordem física, psíquica, social e espiritual. O presente artigo buscou, a partir do estudo de revisão bibliográfica, compreender o processo da morte e sua implicância psíquica na vida do paciente em cuidados paliativos para, posteriormente, elencar as possíveis contribuições do profissional de psicologia ao mesmo. Observou-se que a atuação do psicólogo nesse âmbito é de imensa importância, uma vez que o processo de adoecer e morrer permeiam a vida do ser humano, causando-lhe grande sofrimento. Percebeu-se também que as ações do psicólogo se dão no sentido de tornar a morte e seus impactos mais suportáveis, por meio da escuta, do acolhimento emocional, dentre outros aspectos importantes que se referem à sua natureza científica.

Palliative care encompasses a philosophy of care aimed at promoting quality of life and alleviating suffering, both for the patient with no chance of cure and for their family members, so that they can integrate physical, psychic, social and spiritual aspects. The present article sought, from the study of literature review, to understand the process of death and its psychic implications in the life of the patient in palliative care to, later, list the possible contributions of the psychology professional to it. It was observed that the role of the psychologist in this context is of immense importance, since the process of falling ill and dying permeates the life of human beings, causing them great suffering. It was also noticed that the psychologist's actions take place in the sense of making death and its impacts more bearable, through listening, emotional reception, among other important aspects that refer to its scientific nature.

Los cuidados paliativos engloban una filosofía de atención que tiene como objetivo promover la calidad de vida y el alivio del sufrimiento, tanto para el paciente fuera de las posibilidades de curación como para sus familiares, de modo que puede integrar aspectos de orden físico, psicológico, social y espiritual. El presente artículo buscó, a partir del estudio de revisión bibliográfica, comprender el proceso de la muerte y su implicación psíquica en la vida del paciente en cuidados paliativos para, posteriormente, enumerar las posibles aportaciones del profesional de la psicología al mismo. Se observó que la actuación del psicólogo en esta área es de inmensa importancia, ya que el proceso de enfermar y morir impregna la vida del ser humano, causándole un gran sufrimiento. También se dio cuenta de que las acciones del psicólogo se dan con el fin de hacer más llevadera la muerte y sus impactos, a través de la escucha, el apoyo emocional, entre otros aspectos importantes que se refieren a su carácter científico.

Huddling with families after disaster: Human resilience and social disparity.

Disasters, from hurricanes to pandemics, tremendously impact human lives and behaviors. Physical closeness to family post-disaster plays a critical role in mental healing and societal sustainability. Nonetheless, little is known about whether and how family colocation alters after a disaster, a topic of immense importance to a post-disaster society. We analyze 1 billion records of population-scale, granular, individual-level mobile location data to quantify family colocation, and examine the magnitude, dynamics, and socioeconomic heterogeneity of the shift in family colocation from the pre- to post-disaster period. Leveraging Hurricane Florence as a natural experiment, and Geographic Information System (GIS), machine learning, and statistical methods to investigate the shift across the landfall (treated) city of Wilmington, three partially treated cites on the hurricane's path, and two control cities off the path, we uncover dramatic (18.9%), widespread (even among the partially treated cities), and enduring (over at least 3 months) escalations in family colocation. These findings reveal the powerful psychological and behavioral impacts of the disaster upon the broader populations, and simultaneously remarkable human resilience via behavioral adaptations during disastrous times. Importantly, the disaster created a gap across socioeconomic groups non-existent beforehand, with the disadvantaged displaying weaker lifts in family colocation. This sheds important lights on policy making and policy communication to promote sustainable family colocation, healthy coping strategies against traumatic experiences, social parity, and societal recovery.

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

A Religiosidade/Espiritualidade na atuação da Psicologia Social e Comunitária: relato de experiência / Religiosity/Spirituality in the performance of Social and Community Psychology: experience report / Religiosidad/Espiritualidad en el desempeño de la Psicología Social y Comunitaria: relato de experiencia

A partir da necessidade de explorar mais profundamente o modo como a reli-giosidade/espiritualidade (R/E) tem atravessado a formação em Psicologia, o presente estudo apresenta uma reflexão crítica acerca da literatura científica produzida sobre a R/E, tomando por base um relato de experiência profissional que narra a inserção de uma profissional da Psicologia em uma comunidade periférica durante o trabalho com famílias em uma cidade de médio porte do Estado de São Paulo. Este relato tem por objetivo refletir sobre como emerge a dimensão da R/E no contexto familiar e comunitário tendo como norte a Psicologia Social e Comunitária. O profissional que atua com a comunidade tem o compromisso com a promoção de direitos (humanos e sociais), com o protagonismo dos sujeitos e com a qualidade de vida para todos. Esse profis-sional deve acolher as diversas denominações e compreender os sentidos e significados que são atribuídos a elas pelas coletividades com as quais atua. A laicidade da prática psicológica não pode ser confundida com a negligência em torno dessa dimensão, mas sim de seu acolhimento ético, crítico e perene-mente humanizador das populações atendidas.

Given the need to explore more deeply the way in which religiosity/spirituality (R/S) has arisen in the studies of Psychology, this study presents a critical reflection regarding the scientific literature produced on R/S, based on a profes-sional experience report that narrates the insertion of a psychology professional in a peripheral community while working with families in a medium-sized city in the state of São Paulo. This report aims to reflect on how the dimension of R/S emerges in this context with Social and Community Psychology as its guide. The professional who works with the community is committed to the promotion of (human and social) rights, to subjects' protagonism and to quality of life for everyone. This professional must accept different denominations and understand senses and meanings attributed to them by the communities he works with. The secularity of psychological practice cannot be confused with the neglect surrounding this dimension, but rather with its ethical, critical, and permanently humanizing acceptance of the assisted populations.

Basado en la necesidad de explorar más a fondo la forma en que la religio-sidad/espiritualidad (R/E) ha recibido capacitación en psicología, este estudio presenta una reflexión crítica sobre la literatura científica producida en R/E basada en un informe de Experiencia profesional que narra la inserción de un profesional de psicología en una comunidad periférica mientras trabaja con familias en una ciudad mediana en el estado de São Paulo. Este informe tiene como objetivo reflexionar sobre cómo emerge la dimensión de R/E en este contexto, teniendo como guía la psicología social y comunitaria. El profe-sional que trabaja con la comunidad está comprometido con la promoción de los derechos (humanos y sociales), con el protagonismo de los sujetos y con la calidad de vida para todos, teniendo el deber de defender el secularismo para que todos puedan ejercer su R / Y sin sufrir ninguna represión por eso. Este profesional debe aceptar las diferentes denominaciones y comprender los sentidos y los significados que les atribuyen las comunidades con las que trabaja. La secularidad de la práctica psicológica no puede confundirse con el abandono que rodea esta dimensión, sino más bien con su aceptación ética, crítica y humanizadora permanente de las poblaciones atendidas.

Integrative review of singing and music interventions for family carers of people living with dementia.

The majority of people living with dementia are cared for by their families. Family carers play a vital role in upholding the formal care system. Caring for a family member with dementia can be fulfilling. However, this role can have a considerable negative impact on family carers' mental and physical health and quality of life. Several empirical research studies have recently been conducted that explore the potential benefits of music interventions for family carers of people living with dementia. Singing has been the primary musical medium employed. This article presents the first review of this literature to date. It investigates the impact of music interventions on the health and well-being of family carers of people living with dementia, and how they experience and perceive these interventions. Whittemore and Knafl's five-stage integrative review framework was utilized: (i) problem identification; (ii) literature search; (iii) data evaluation; (iv) data analysis and synthesis; and (v) presentation of the findings. A total of 33 studies met the inclusion criteria. Analysis and synthesis resulted in three overarching themes: impact on family carers, carer perceptions of music interventions and null quantitative findings in small studies. The review found that singing and music interventions may improve family carers' social and emotional well-being, enhance their ability to cope and care and ameliorate the caring relationship, contributing to experiences of flourishing. However, it highlighted that this area is under-researched and pointed to the need for larger, more rigorous studies.

Needs of family members caring for stroke survivors in china: A deductive qualitative content analysis study by using the caregiver task inventory-25.

BACKGROUND: In China, family caregivers are usually the main carers of relatives after stroke due to traditional Chinese culture and the limited development of the primary healthcare system. This responsibility often results in burdens and negative health outcomes. However, family caregivers seldom receive support. To improve informal care, as well as the health and well-being of family caregivers, it is important to identify their needs. OBJECTIVE: This study aimed to deductively explore the needs of family members caring for stroke survivors in China. METHODS: Twenty-six semi-structured interviews were performed with family caregivers of stroke survivors who were selected from one city and three communities by purposive sampling. A deductive qualitative content analysis method was performed by using the Caregiver Task Inventory-25 (CTI-25), an instrument measuring the needs of family caregivers, as a framework. RESULTS: All subscales, as well as all belonging items in the CTI-25, were identified in the present study, meaning that the family caregivers had needs related to learning to cope with new role, providing care according to care-receiver's needs, managing own emotional needs, appraising supportive resources, and balancing caregiving needs and one's own needs. Moreover, needs related to financial support, both direct and indirect, were identified but not part of the CTI-25. CONCLUSION: These findings identified that family caregivers of stroke survivors in China had various needs, which is important knowledge when assessing needs and improving health care for family caregivers. Cultural adjustments and modifications should be made if CTI-25 is used in mainland China. This study also indicated a comprehensive and holistic perspective (individual, community, and social level) when identifying, assessing needs or implementing interventions to support family caregivers.

Exploring resilience processes of Filipino migrant domestic workers: A multisystemic approach.

This study identified resilience processes at the individual, family, and community levels among Filipino migrant domestic workers (MDWs). Resilience processes highlight strengths and resources that can enhance positive adaptation to problems that affect this vulnerable migrant group. Data came from focus groups and key informant interviews involving 27 MDWs and 7 key informants. Data was analyzed using thematic analysis and organized according to the socioecological model. Results revealed 7 resilience processes. Financial coping, health management, and spirituality were found across levels. Companionship and emotional support are transacted within family and community levels, whereas expanding knowledge and support occurs at individual and community levels. MDWs and their families prioritize each family member, whereas the community provides legal support. Resilience processes exist across ecological levels. However, individual resilience processes are insufficient, thus necessitating collective agency through familial and community resilience processes and building social structures that facilitate resilience.

Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare professionals.

OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care professionals. Data were analysed using thematic analysis. SETTING: Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018. PARTICIPANTS: Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children's palliative care services. FINDINGS: A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural 'collusion of immortality', where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in 'illuminating the blind spot' of palliative care as well as providing hands-on care. CONCLUSIONS: Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.