Family centered nursing practices towards women and their families in the birthing context: A qualitative systematic review.

AIM: Synthesize qualitative evidence examining how nurses' attitudes, beliefs, and sense of efficacy and the context surrounding birth facilitate or hinder family-centered nursing practice. DESIGN: Thematic synthesis of qualitative studies. METHODS: A literature search was conducted in CINAHL, MEDLINE, PsycINFO, SCOPUS, SCIENCE DIRECT, REPÈRES, CAIRN, and ÉRUDIT from October 2020 to June 2021. The PRISMA guidelines were followed, and studies were critically appraised using the Critical Appraisal Skills Programme checklist. Data were extracted by two independent reviewers, and Thomas and Harden's qualitative thematic synthesis method was performed for data analysis. RESULTS: Thirteen studies were included. Three analytical themes were generated: (1) sharing power: opposing beliefs, (2) feeling a sense of efficacy in fulfilling one's role, and (3) managing a challenging work environment. PATIENT OR PUBLIC CONTRIBUTION: Synthesizing nurses' experience is essential to promote implementation of favourable changes for care that is more focused on the needs of families.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations.

OBJECTIVE: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. METHOD: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. RESULTS: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. CONCLUSION: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

Experiências de luto parental após um natimorto: uma síntese temática no contexto da América Latina / Parental grieving experiences after stillbirth: a thematic synthesis in the context of Latin America

OBJETIVO: Sintetizar estudos qualitativos sobre as experiências de luto após um natimorto em pais que vivem na América Latina. MÉTODO: Revisão sistemática qualitativa realizada em quatro bases de dados eletrônica e que utilizou o Guideline Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ). A qualidade metodológica dos estudos incluídos foi avaliada usando o Critical Appraisal Skills Programme e uma síntese temática foi realizada. RESULTADOS: Um total de 110 estudos foram encontrados e quatro estudos eleitos com base nos critérios de elegibilidade. Quatro temas apresentam a experiência de luto parental: impacto, sofrimento e transformação após a morte fetal; preocupação com o corpo do bebê falecido; insatisfação com a qualidade da assistência em saúde; e família e religião como principais fontes de apoio. CONCLUSÃO: A natimortalidade na América Latina precisa ser explorada em pesquisas futuras e ainda é marcada pela desassistência no processo de luto.

OBJECTIVE: To synthesize qualitative studies on Latin American parents' grieving experiences after a stillbirth. METHOD: A systematic qualitative review was conducted in four electronic databases using the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guideline. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme, and a thematic synthesis was performed. RESULTS: One hundred ten studies were found, and four were chosen based on the eligibility criteria. Four themes were identified concerning the experience of parental grieving: impact, suffering, and transformation after fetal death; preoccupation with the deceased baby's body; dissatisfaction with the quality of health care; and family and religion as the primary sources of support. CONCLUSION: Stillbirth in Latin America must be explored in future research, and a lack of assistance still marks the grieving process.

Five tips for conducting remote qualitative data collection in COVID times: theoretical and pragmatic considerations / Cinco dicas para realizar coleta remota de dados qualitativos em tempos de COVID: considerações teóricas e pragmáticas / Cinco sugerencias para realizar recolección remota de datos cualitativos en tiempos de COVID: consideraciones teóricas y pragmáticas

ABSTRACT Objective: To provide five methodological and pragmatic tips for conducting remote qualitative data collection during the context of the COVID-19 pandemic. Method: The tips presented in this article are drawn from insights of our own experiences as researchers conducting remote qualitative research and from the evidence from the literature on qualitative methods. The relevant literature was identified through searches using relevant keywords in the following databases: CINAHL, PubMed, SCOPUS, and Web of Science. Searches were limited to articles in English and Portuguese, published from 2010 to 2021, to ensure a current understanding of the phenomenon. Results: Five tips are provided: 1) Pay attention to ethical issues; 2) Identify and select potential participants; 3) Choose the type of remote interview; 4) Be prepared to conduct the remote interview; and 5) Build rapport with the participant. Conclusion: Despite the challenges in conducting remote data collection, strengths are also acknowledged and our experience has shown that it is feasible to recruit and interview participants remotely. The discussions presented in this article will benefit, now and in the future, other research teams who may consider collecting data for their qualitative studies remotely.

RESUMEN Objetivo: Proporcionar cinco consejos metodológicos y pragmáticos para el manejo de la recogida de datos cualitativos durante el contexto de la pandemia de COVID-19. Método: Los consejos presentados en este artículo son extraídos de insights de nuestras propias experiencias como investigadores que realizan investigaciones cualitativas remotas y de la evidencia de la literatura sobre métodos cualitativos. La literatura relevante fue identificada a través de búsquedas utilizando palabras clave relevantes en las siguientes bases de datos: CINAHL, PubMed, SCOPUS y Web of Science. Las búsquedas se limitaron a artículos en inglés y portugués publicados entre 2010 y 2021 para asegurar una comprensión actual del fenómeno. Resultados: Se ofrecen cinco consejos: 1) Preste atención a las cuestiones éticas; 2) Identifique y seleccione potenciales participantes; 3) Escoja el tipo de entrevista remota; 4) Esté preparado para coordinar la entrevista remota; y 5) Promueva el vínculo con su participante. Conclusiones: A pesar de los desafíos en el manejo de la recogida remota de datos, también se reconocen las fortalezas y nuestra experiencia ha demostrado que es viable reclutar y entrevistar participantes remotamente. Las discusiones presentadas en este artículo beneficiarán, ahora y en el futuro, a otros equipos de investigación que puedan considerar recopilar datos para sus estudios cualitativos de forma remota.

RESUMO Objetivo: Fornecer cinco dicas metodológicas e pragmáticas para conduzir coleta remota de dados qualitativos durante o contexto da pandemia de COVID-19. Método: As dicas apresentadas neste artigo são extraídas de insights de nossas próprias experiências como pesquisadores conduzindo pesquisas qualitativas remotas e das evidências da literatura sobre métodos qualitativos. A literatura relevante foi identificada por meio de pesquisas usando palavras-chave relevantes nas seguintes bases de dados: CINAHL, PubMed, SCOPUS e Web of Science. As buscas foram limitadas a artigos em inglês e português publicados de 2010 a 2021 para garantir uma compreensão atual do fenômeno. Resultados: Cinco dicas são fornecidas: 1) Esteja atento às questões éticas; 2) Identifique e selecione potenciais participantes; 3) Escolha o tipo de entrevista remota; 4) Esteja preparado para conduzir a entrevista remota; e 5) Estabeleça previamente vínculo com o participante. Conclusão: Apesar dos desafios na condução da coleta remota de dados, os pontos fortes também são reconhecidos e nossa experiência tem mostrado que é viável recrutar e entrevistar participantes remotamente. As discussões apresentadas neste artigo beneficiarão, atualmente e no futuro, outras equipes de pesquisa que possam considerar a coleta de dados para seus estudos qualitativos remotamente.

Waves of family hope: narratives of families in the context of pediatric chronic illness.

OBJECTIVE: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. METHOD: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. RESULTS: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. CONCLUSION: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.

Experiences of Nurses Who Support Parents During Perinatal Death.

OBJECTIVE: To describe the experience of nurses who support parents during perinatal death, particularly how perinatal death influences the nurse, how the nurse feels when caring for a suffering parent, and how the perinatal death contributes to the nurse's understanding of self. DESIGN: Descriptive qualitative. SETTING: Four regions of Quebec, Canada. PARTICIPANTS: Twenty-five nurses from different perinatal clinical and community backgrounds who worked with parents who experienced perinatal death. METHODS: We conducted individual, semistructured interviews during which the participants were given the opportunity to describe what they felt and experienced when they supported parents who experienced perinatal death. RESULTS: Analysis of the data showed three main themes related to the nurse's experience of perinatal death: Unrealistic Self-Expectations, Self-Denial, and Negative Self-Awareness. CONCLUSION: Our results suggest that during perinatal death, nurses want to feel useful and to relieve the suffering of parents. A clear understanding of this experience can help nurses to better understand their own experiences.

Experience of hope: An exploratory research with bereaved mothers following perinatal death.

PROBLEM: The negative implications of perinatal death on mothers' mental health are documented, however little is known about their experience of hope. BACKGROUND: Within the broader literature, hope has contributed to better mental health and bereavement adjustment and often bereaved mothers report the importance of hope for the grieving process. AIM: This study aims to explore bereaved mothers' experience of hope following perinatal death. METHODS: Individual interviews were conducted with 33 mothers having experienced the death of an infant in the perinatal period. Data from the interviews were analysed using thematic analysis. FINDINGS: The mothers' experience of hope following perinatal loss is organized into three themes: Hope disrupted by perinatal loss; Transformed hope: a new pregnancy challenged by the sense of foreboding of another loss; and Ways to restore and foster hope in life. DISCUSSION: Although hope has been a motivating force for mothers to reconnect with their life plan and move on after a loss, it is also negatively affected by the experience of perinatal bereavement, social support, and health professionals' clinical practice. CONCLUSION: Bereaved mothers have reported a disruption in their experience of hope. While some experience a loss of hope or a sense of hopelessness, others experience a transformation and restoration of hope, which is reinvested in the grieving process. Mothers' experience of hope highlights the need for the support of a healthcare professional and may contribute to enhanced clinical practice through the promotion of bereavement care, considering the aspects that instil, maintain, and interfere with hope.

Waves of family hope: narratives of families in the context of pediatric chronic illness / Olas de esperanza familiar: narrativas de las familias en el contexto de la enfermedad crónica pediátrica / Ondas de esperança familiar: narrativas de famílias no contexto da doença crônica pediátrica

Objective: to analyze narratives about the experience of hope of families in the context of pediatric chronic illness. Method: a narrative research using Family Systems Nursing as a conceptual framework. Three families of children and adolescents diagnosed with complex chronic illness participated in this study, totaling 10 participants. Data collection was developed using family photo-elicitation interviews. Family narratives were constructed and analyzed according to inductive thematic analysis with theoretical data triangulation. Results: the analytical theme - Waves of Family Hope in the Context of Pediatric Chronic Illness - is composed of four different types of hope: uncertain hope, caring hope, latent hope, and expectant hope. Movement through these hopes generates a driving energy and depends on a number of factors: support, information, searching for normality, and thoughts and comparisons. Conclusion: the results highlight the interaction and reciprocities of the members of the family unit, and the dynamics of hope, and illustrate the different types of hope and the factors that influence them. This study highlights the experience of hope as a family resource rather than just an individual resource, and supports health professionals in the planning of family care considering hope as an essential and dynamic family resource.

Objetivo: analizar las narrativas sobre la experiencia de esperanza de las familias en el contexto de la enfermedad crónica pediátrica. Método: investigación narrativa que utilizó la Enfermería de Sistemas Familiares como marco conceptual. En este estudio participaron tres familias de niños y adolescentes diagnosticados con enfermedades crónicas complejas, con un total de 10 participantes. La recogida de datos se desarrolló mediante entrevistas familiares con foto-elicitación. Se construyeron y analizaron narrativas familiares siguiendo el análisis temático inductivo con triangulación teórica de los de datos. Resultados: el tema analítico - Olas de esperanza familiar en el contexto de la enfermedad crónica pediátrica - se compone de cuatro tipos diferentes de esperanza: esperanza incierta, esperanza cuidadora, esperanza latente y esperanza expectante. El movimiento a través de estas esperanzas genera una fuerza motriz y dependiente de varios factores: apoyo, información, búsqueda de la normalidad, pensamientos y comparaciones. Conclusión: los resultados destacan la interacción y reciprocidad de los miembros de la unidad familiar, la dinámica de la esperanza, e ilustran los diferentes tipos de esperanza y los factores que los influyen. Este estudio destaca la experiencia de la esperanza como un recurso familiar, en vez de un recurso individual, y apoya a los profesionales de la salud en la planificación del cuidado familiar considerando la esperanza como un recurso familiar esencial y dinámico.

Objetivo: analisar as narrativas de famílias sobre suas experiências de esperança no contexto da doença crônica pediátrica. Método: pesquisa narrativa, que utilizou a teoria de sistemas familiares aplicada à enfermagem como referencial teórico. Compuseram a amostra deste estudo três famílias de crianças e adolescentes diagnosticados com doenças crônicas complexas, em um total de 10 participantes. Os dados coletados por meio de entrevistas com foto-elicitação permitiram a construção de narrativas familiares, as quais foram analisadas de acordo com a análise temática indutiva e triangulação teórica dos dados. Resultados: o tema analítico - Ondas de esperança familiar no contexto da doença crônica pediátrica - está composto por quatro diferentes tipos: esperança incerta, esperança cuidativa, esperança latente e esperança expectante. O movimento suscitado por essas esperanças gera uma energia motriz e depende de uma série de fatores, tais como apoio, informação, busca pela normalidade, pensamentos e comparações. Conclusão: os resultados evidenciam a interação e reciprocidades dos membros da unidade familiar, bem como a dinâmica da esperança, os diferentes tipos de esperança e os fatores que os influenciam. Este estudo destaca a experiência de esperança como um recurso familiar e não apenas individual, além de auxiliar os profissionais de saúde no planejamento do cuidado familiar considerando a esperança como um recurso familiar essencial e dinâmico.

Perceived Paternal Involvement, Relationship Satisfaction, Mothers' Mental Health and Parenting Stress: A Multi-Sample Path Analysis.

Research has demonstrated the short- and long-term impacts of maternal mental health and well-being on children's emotional and behavioral outcomes. It is thus important to better understand the antecedents of maternal depression and stress. The aim of this study was to determine whether the contribution of perceived paternal involvement to account for mothers' depression and parental stress was mediated by relationship factors such as parenting alliance and dyadic adjustment. A second aim was to determine whether these relationships hold equally true in mothers of infants and young toddlers (0-24 months) and mothers of older children (25 months and older). Cross-sectional data were collected from 447 mothers. Mothers reported on their perceptions of paternal involvement with childcare responsibilities, dyadic adjustment, parenting alliance, parenting stress, and depression. Multi-sample path modeling analyses were conducted. Results revealed that perceived paternal involvement was positively related to both dyadic adjustment and parental alliance, that parenting alliance was negatively related to all three subscales of parenting stress and mothers' depression but that dyadic adjustment was negatively related to parenting distress (one subscale of parenting stress) and mothers' depression. Results from the multi-sample analyses indicated that the pattern of relationships was the same in the two groups, but that the model was not invariant. The most notable difference was that parenting alliance did not significantly account for depression in the mothers of younger children. Correlates of maternal mental health and well-being identified in this study could be useful when designing psychological interventions for mothers and fathers.

Protective and risk factors for women's mental health after a spontaneous abortion.

OBJECTIVE: to examine personal and contextual protective and risk factors associated with women's mental health after a spontaneous abortion. METHOD: a cross-sectional study was carried out where 231 women who had experienced spontaneous abortions in the past 4 years answered a self-reporting online questionnaire to assess their mental health (symptoms of depression, anxiety, perinatal grief) and to collect personal as well as contextual characteristics. RESULTS: women who had experienced spontaneous abortions within the past 6 months had higher scores for depressive symptoms than those who had experienced spontaneous abortions between 7 and 12 months ago, while anxiety level and perinatal grief did not vary according to the time since the loss. Moreover, low socioeconomic status, immigrant status, and childlessness were associated with worse mental health after a spontaneous abortion. In contrast, the quality of the conjugal relationship and the level of satisfaction with health care were positively associated with women's mental health. CONCLUSION: women in vulnerable situations, such as immigrants, women with a low socioeconomic status, or childless women are particularly vulnerable to mental health problems after a spontaneous abortion. However, beyond those personal and contextual factors, the quality of the conjugal relationship and the level of satisfaction with health care could be important protective factors.

Creating a space to talk about one's experience of suffering: families' experience of a family nursing intervention.

STUDY RATIONALE: The impacts of health problems on individual and family functioning, as well as the influence of family on health, are well documented. However, health care and services in the West are mostly oriented towards individuals, and the needs of families often receive little consideration. The Family Support Service (FSS) was developed to address this situation. Its aim is to improve the education of nursing students and contribute to the health of the community by offering family conversations to families whose members have a health problem or who have difficulty adjusting to certain transitions. AIMS AND OBJECTIVES: The objective of this study was to explore families' experience of the family conversations in which they participated and their satisfaction with the FSS. METHODOLOGICAL DESIGN AND JUSTIFICATION: This study used a descriptive qualitative design based on semi-structured interviews and thematic analysis. The study followed ethical codes of conduct and conformed to the Canadian Tri-Council Policy Statement (TCPS). RESEARCH METHODS: Qualitative interviews were conducted with 22 participants who had participated in family conversations as interventions, to evaluate their experience of those family conversations and their satisfaction with the FSS. RESULTS: The families reported a very positive experience of the family conversations. Three themes emerged from their statements and explained this satisfaction: (i) the nurse's attitudes and skills as the foundation for meaningful encounters; (ii) a family systems intervention where families feel recognised; and (iii) a structure adapted to the needs of families. CONCLUSIONS: This study adds to the existing body of knowledge on families' experience of family system nursing and invites nurses to develop attitudes that are conducive to meaningful encounters with families.

Protective and risk factors for women's mental health after a spontaneous abortion / Fatores de proteção e de risco na saúde mental das mulheres após aborto espontâneo / Factores de protección y de riesgo para la salud mental de las mujeres después de un aborto espontáneo

Objective: to examine personal and contextual protective and risk factors associated with women's mental health after a spontaneous abortion. Method: a cross-sectional study was carried out where 231 women who had experienced spontaneous abortions in the past 4 years answered a self-reporting online questionnaire to assess their mental health (symptoms of depression, anxiety, perinatal grief) and to collect personal as well as contextual characteristics. Results: women who had experienced spontaneous abortions within the past 6 months had higher scores for depressive symptoms than those who had experienced spontaneous abortions between 7 and 12 months ago, while anxiety level and perinatal grief did not vary according to the time since the loss. Moreover, low socioeconomic status, immigrant status, and childlessness were associated with worse mental health after a spontaneous abortion. In contrast, the quality of the conjugal relationship and the level of satisfaction with health care were positively associated with women's mental health. Conclusion: women in vulnerable situations, such as immigrants, women with a low socioeconomic status, or childless women are particularly vulnerable to mental health problems after a spontaneous abortion. However, beyond those personal and contextual factors, the quality of the conjugal relationship and the level of satisfaction with health care could be important protective factors.

Objetivo: examinar os fatores pessoais e contextuais de proteção e de risco associados à saúde mental das mulheres após aborto espontâneo. Método: foi realizado um estudo transversal, no qual 231 mulheres que sofreram aborto espontâneo nos últimos quatro anos responderam a um questionário on-line, cujo intuito era avaliar a saúde mental (sintomas de depressão, ansiedade, luto perinatal) e coletar informações pessoais, além de características contextuais. Resultados: mulheres que sofreram aborto espontâneo nos últimos seis meses apresentaram escores mais altos para sintomas depressivos do que mulheres que sofreram aborto espontâneo entre sete e 12 meses atrás, ao passo que o nível de ansiedade e o luto perinatal não variaram de acordo com o tempo transcorrido desde a perda. Além disso, baixo nível socioeconômico, status de imigrante e ausência de filhos foram associados a pior saúde mental após aborto espontâneo. Por outro lado, a qualidade do relacionamento conjugal e a satisfação com a assistência à saúde foram associadas positivamente à saúde mental das mulheres. Conclusão: mulheres em situação de vulnerabilidade, como as imigrantes, com baixo nível socioeconômico ou sem filhos estão particularmente vulneráveis a problemas de saúde mental após um aborto espontâneo. No entanto, além desses fatores pessoais e contextuais, a qualidade do relacionamento conjugal e a satisfação com a assistência à saúde podem ser importantes fatores de proteção.

Objetivo: examinar factores de protección y de riesgo personales y contextuales asociados a la salud mental de la mujer después de un aborto espontáneo. Método: se llevó a cabo un estudio transversal en el que 231 mujeres que habían sufrido un aborto espontáneo en los últimos 4 años respondieron a un cuestionario online de autoinforme para evaluar su salud mental (síntomas de depresión, ansiedad, duelo perinatal) y para recopilar características personales y contextuales. Resultados: las mujeres que habían sufrido un aborto espontáneo en los últimos 6 meses obtuvieron una puntuación más alta en lo que respecta a síntomas de depresión que las que lo habían sufrido entre 7 y 12 meses atrás, mientras que el nivel de ansiedad y el duelo perinatal no variaron según el tiempo transcurrido desde la pérdida. Además, la baja condición socioeconómica, el estado de inmigración y la falta de hijos se asociaron con una peor salud mental después de un aborto espontáneo. En cambio, la calidad de la relación conyugal y la satisfacción con la atención de la salud se asociaron positivamente con la salud mental de las mujeres. Conclusión: las mujeres en situaciones vulnerables, como las inmigrantes, las de baja condición socioeconómica o las mujeres sin hijos son especialmente vulnerables a problemas de salud mental después de un aborto espontáneo. Sin embargo, más allá de esos factores personales y contextuales, la calidad de la relación conyugal y la satisfacción con el cuidado de la salud podrían ser importantes factores de protección.

Women's Experiences of Miscarriage in the Emergency Department.

INTRODUCTION: Miscarriage is a common event, usually managed in the emergency department. Although studies have examined the impact of miscarriage on women's mental health and the effects of their dissatisfaction with health care received, little is known about the characteristics of the miscarriage experience in the emergency department. The objective of this study was to identify characteristics of care management that may have contributed to the difficulties experienced by women presenting with miscarriage in the emergency department. METHODS: Forty-eight women treated at 4 emergency departments in different regions of Quebec, Canada, were interviewed for 60 to 90 minutes. A thematic qualitative analysis of these interviews was performed. RESULTS: Analyses revealed that participants' experiences were characterized particularly by a lack of information at 3 critical junctures of the miscarriage experience: the announcement of the miscarriage, the course of the miscarriage, and the ED discharge. The topics on which the women lacked information were categorized into 7 subthemes within these junctures. DISCUSSION: Lack of information throughout the care management of miscarriage exacerbated the already-difficult nature of this event for the participants. Training emergency nurses to give adequate and complete information enables the delivery of compassionate care, potentially making a difficult situation less traumatic.

The role of fathers during breastfeeding.

OBJECTIVE: identify fathers' perceptions of their role in a breastfeeding context. SETTING: three different geographic areas (urban, semi-urban, and rural) of Quebec, a francophone province in Canada. PARTICIPANTS: 43 fathers whose children had been exclusively breastfed for a minimum of six months. METHODS: a qualitative study using semi-structured interviews was undertaken. Thematic analysis of the interviews was carried out with NVivo 11. FINDINGS: variations were identified in the role of father during breastfeeding, namely, 1) acting as partners in decision-making; 2) being responsible for the family functioning, and 3) providing emotional support to the mother. These different variants each entail challenges and tasks. KEY CONCLUSIONS: participating fathers perceived their role as much more complex than the limited role of breastfeeding facilitator that is usually attributed to them. Fathers saw themselves as stakeholders in decision-making relating to how their child was fed and they reacted to the imbalance created by breastfeeding. Their involvement occurred at several levels: that of their child, their spouse, and their family. IMPLICATIONS FOR PRACTICE: these results suggest that more attention should be given to fathers' roles in a breastfeeding context and more investigation is required into the extent to which health professionals, such as midwives and nurses, support fathers in managing these various roles and the challenges they entail.

Women's persistent depressive and perinatal grief symptoms following a miscarriage: the role of childlessness and satisfaction with healthcare services.

The objectives of this cross-sectional study were to determine whether depressive and perinatal grief symptoms vary according to time since miscarriage and to test whether childlessness and satisfaction with healthcare services influence symptom duration. A total of 245 women who had experienced a miscarriage answered a self-report questionnaire, indicating the date of their miscarriage and assessing their present level of depressive and perinatal grief symptoms. They also provided sociodemographic characteristics and indicated their level of satisfaction with healthcare services. One-way analyses of variance indicated that women who had miscarried within the past 6 months reported higher scores for depressive symptoms than did women who had miscarried between 7 and 12 months ago and more than 2 years ago. However, when controlling for childlessness and satisfaction with healthcare services, those differences became respectively marginal and non-significant, indicating that depressive symptoms are similar across time for more than 2 years after the loss. Regarding perinatal grief, results revealed that symptoms significantly decreased across time only for women with children and women who were satisfied with healthcare services. For childless women and those dissatisfied with healthcare services, perinatal grief symptoms did not vary according to time since miscarriage. Results suggest that, particularly for women who are childless and/or dissatisfied with healthcare services, depressive and perinatal grief symptoms persist long after a miscarriage. These results highlight the importance of paying particular attention to more vulnerable women and of improving healthcare services post-miscarriage.

Priority needs referred by families of rare disease patients / Necesidades prioritarias de las familias de personas con enfermedades raras / Necessidades prioritárias referidas pelas famílias de pessoas com doenças raras

ABSTRACT Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family.

RESUMEN Las enfermedades raras provocan fuerte impacto en las familias, generando necesidades más allá de los relacionados con las enfermedades más frecuentes. La incorporación de nuevas responsabilidades y la relación con los servicios sociales y de salud, son algunas de ellas. Este estudio tiene como objetivo identificar las necesidades prioritarias de las familias de las personas con enfermedades raras, percibidas desde el diagnóstico. Se trata de un estudio cualitativo realizado con 16 miembros de la familia de las personas con enfermedades raras, los residentes de Rio Grande do Sul, cuyos datos fueron recolectados entre noviembre/2012 y marzo/2013, a través de entrevistas semiestructuradas y sometido a análisis de contenido, impulsado por La teoría bio-ecológica del desarrollo humano. Los resultados indican como prioridad las necesidades de: acceso a los servicios sociales y de salud; conocimiento sobre las enfermedades raras; estructuras de apoyo social; la aceptación y la integración social; preservación de la vida personal y familiar. Llegamos a la conclusión de que (re)organizar los servicios y satisfacer las necesidades específicas son condiciones previas para calificar la atención de enfermería y amortiguar el impacto de las causas de enfermedades raras en la família.

RESUMO As doenças raras provocam forte impacto nas famílias, gerando necessidades que ultrapassam aquelas associadas às doenças mais frequentes. A incorporação de novas responsabilidades e a relação com serviços sociais e de saúde são algumas dessas. Este estudo objetiva identificar as necessidades prioritárias das famílias de pessoas com doenças raras, percebidas a partir do diagnóstico. Trata-se de um estudo qualitativo desenvolvido com 16 familiares de pessoas com doenças raras, residentes no Rio Grande do Sul, cujos dados foram coletados entre novembro/2012 e março/2013, por meio de entrevista semiestruturada e submetidos à análise de conteúdo, balizada pela teoria bioecológica do desenvolvimento humano. Os resultados apontam como prioritárias as necessidades de: acesso aos serviços sociais e de saúde; conhecimento sobre doença rara; estruturas de apoio social; aceitação e inserção social; preservação da vida pessoal e familiar. Conclui-se que (re)organizar os serviços e conhecer as especificidades das necessidades são pré-condições para qualificar a assistência de enfermagem e amenizar o impacto que a doença rara provoca na família.

Doenças raras: itinerário diagnóstico e terapêutico das famílias de pessoas afetadas / Rare diseases: diagnostic and therapeutic journey of the families of affected people

Objetivo: Caracterizar o itinerário diagnóstico e terapêutico realizado pelas famílias de pessoas com doenças raras, no âmbito da rede de serviços públicos brasileiros. Métodos Trata-se de pesquisa qualitativa. Utilizou-se a teoria bioecológica do desenvolvimento humano, de Urie Bronfenbrenner, para a compreensão dos dados. O instrumento de pesquisa foi uma entrevista semiestruturada, e os dados foram analisados pelo método de análise de conteúdo. Resultados Foram agrupados três núcleos temáticos: “Itinerário das famílias em busca do diagnóstico da doença”; “Itinerário das famílias no pós-diagnóstico da doença”; “Itinerário de manutenção terapêutica”. Conclusão O acesso aos serviços especializado possibilitou a obtenção do diagnóstico da doença rara. O tratamento foi um desafio, pois há poucos medicamentos disponíveis na escolha terapêutica para essas doenças. A judicialização foi fundamental para o acesso e a manutenção terapêutica.

Objective: To characterize the diagnostic and therapeutic journey of families of people with rare diseases within the network of Brazilian public services. Methods This was a qualitative research project. The bio-ecological theory of human development, by Urie Bronfenbrenner, was used to understand the data. The research instrument was a semi-structured interview, and data were analyzed using the content analysis method. Results Three central themes were grouped: “Journey of families in search of a diagnosis”; “Journey of families after the diagnosis of the disease”; “Journey of therapeutic maintenance”. Conclusion The access to specialized services enabled diagnosing of the rare disease. The treatment was a challenge, because there were few drugs available within the therapeutic options for these diseases. Legal recourse was essential for therapeutic access and maintenance.

Psychosocial factors associated with paternal postnatal depression.

BACKGROUND: While maternal postpartum depression is a well-known phenomenon, paternal postnatal depression has been less studied. It is known that paternal postnatal depression impacts on children's and families' development, affects marital satisfaction and affects the economic health of industrialized countries. The aim of this study was to identify the psychosocial factors associated with paternal postnatal depression. METHODS: A descriptive-correlational study was conducted with a sample of fathers of infants (average age: 11 months) who were breastfed exclusively or predominantly for at least 6 months, comparing psychosocial factors in fathers with (n: 17, 8.2%) and without a positive score for depression on the EPDS scale (n: 188). Psychosocial factors were assessed through questionnaires. RESULTS: Depression in fathers of breastfed infants is associated with the experience of perinatal loss in a previous pregnancy, parenting distress, infant temperament (difficult child), dysfunctional interactions with the child, decreased marital adjustment and perceived low parenting efficacy. Multivariate analysis suggests an independent effect of psychosocial factors such as parenting distress, quality of the marital relationship and perceived parenting efficacy on paternal depression. LIMITATIONS: The sample focused on fathers of breastfed infant, since breastfeeding has become the feeding norm, and this should be taken into account when considering the generalization of findings. CONCLUSION: These findings emphasize the need to consider a set of psychosocial factors when examining fathers' mental health in the first year of a child's birth. Health professionals can enhance parenting efficacy and alleviate parenting distress by supporting fathers' unique experiences and addressing their needs.