Asking about violence and abuse among patients experiencing homelessness: a focus group study with healthcare professionals.

BACKGROUND: People experiencing homelessness are at increased risk of violence and abuse, however, there is insufficient knowledge about rates of inquiry or readiness of healthcare professionals to address violence and abuse among this population. This study aimed to explore healthcare professionals' experiences and perceptions of asking about violence and abuse among patients experiencing homelessness. METHODS: This study used a qualitative, interpretive, and exploratory design. We performed focus group discussions with healthcare professionals (n = 22) working at an integrative healthcare unit for people experiencing homelessness. Data were analysed using reflexive thematic analysis, following Braun and Clarke's six-phase approach. Findings are reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. RESULTS: The overarching theme of the analysis is that addressing violence and abuse is at risk of "falling through the cracks". The theme is supported by three sub-themes: Hesitance to address violence and abuse, The complex dynamics of violence and abuse in homelessness, and Challenges in addressing violence and abuse amidst competing priorities and collaborative efforts. The normalisation of violence and abuse within the context of homelessness perpetuates a "cycle" where the severity and urgency of addressing violence and abuse are overlooked or minimised, hindering effective interventions. Moreover, healthcare professionals themselves may inadvertently contribute to this normalisation. The hesitance expressed by healthcare professionals in addressing the issue further reinforces the prevailing belief that violence and abuse are inherent aspects of homelessness. This normalisation within the healthcare system adds another layer of complexity to addressing these issues effectively. CONCLUSIONS: The findings underscore the need for targeted interventions and coordinated efforts that not only address the immediate physical needs of people experiencing homelessness but also challenge and reshape the normalised perceptions surrounding violence and abuse. By prioritising awareness, education, and supportive interventions, we can begin to "break the cycle" and provide a safer environment where violence and abuse are not accepted or overlooked.

Health literacy and its association with mental and spiritual well-being among women experiencing homelessness.

Low health literacy (HL) has been linked to low self-rated health, reduced efficacy of behaviour change, and challenges in preventing, treating, or managing health conditions. People experiencing homelessness are at risk of poor HL; however, few studies have investigated HL in relation to mental and spiritual well-being among people experiencing homelessness in general, or women experiencing homelessness specifically. This cross-sectional study of 46 women experiencing homelessness in Stockholm, Sweden, recruited during the period October 2019-December 2020, aimed to examine how HL was associated with mental and spiritual well-being among women experiencing homelessness. Participants answered questions about socio-demographic characteristics (age, length of homelessness, education) and digital technology (mobile phone/the Internet) use, in addition to Swedish language versions of three questionnaires administered through structured, face-to-face interviews: the Communicative and Critical Health Literacy Scale, the General Health Questionnaire 12 and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being. Data were analysed using linear regression, which revealed statistically significant associations between HL and mental well-being (p = .009), and between HL and spiritual well-being (p = .022). However, neither socio-demographic characteristics nor digital technology use were significantly associated with HL. In conclusion, promoting HL may improve mental and spiritual well-being in this vulnerable population. An advisory board of women with lived experiences of homelessness (n = 5) supported the interpretation of the findings and emphasised the need to consider HL in relation to basic needs such as 'housing first'. Moreover, health information and services should be accessible to people with different degrees of HL.

Collaborative Interpretation of Researcher-Generated Photo-Elicitation Findings: Insights From Women With Lived Experience of Homelessness.

Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants' perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women's willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.

Voices of women in homelessness during the outbreak of the COVID-19 pandemic: a co-created qualitative study.

BACKGROUND: Women in homelessness face extreme health- and social inequities. It could be postulated that during societal crises, they become even more vulnerable. Thus, the aim was to explore experiences related to the COVID-19 pandemic among women in homelessness. METHODS: Ten interviews were conducted with women in homelessness, in Stockholm, Sweden, using researcher-driven photo elicitation. The data analysis was guided by the DEPICT model for collaborative data analysis and a qualitative content analysis was performed. A collaborative reference group of women with lived experience of homelessness contributed to the research process through designing the data collection, performing the data analysis, and providing feedback during report writing. RESULTS: For women in homelessness, the COVID-19 pandemic was adding insult to injury, as it significantly affected everyday life and permeated most aspects of existence, leading to diminished interactions with others and reduced societal support. Thus, in an already dire situation, the virus amplified health- and social issues to another level. The women strived to find their balance on the shifting sands of guidelines and restrictions due to the pandemic. Adhering to the new social distancing rules and guidelines in line with the rest of society, was simply impossible when experiencing homelessness. However, for some women the pandemic was nothing but a storm in a teacup. The harsh reality continued irrespectively, living one day at a time and prioritizing provision for basic human needs. CONCLUSIONS: The COVID-19 pandemic and homelessness can be viewed as two intersecting crises. However, the women's aggregated experiences were greater than the sum of experiencing homelessness and meeting the threat of the virus. Gender, exposure to violence, poverty, social isolation, and substance use were additional factors that further marginalized the women during the pandemic. To rebuild a better and more sustainable post-pandemic future for all, global commitment to ending homelessness is crucial. In addition, addressing social determinants of health must be the number one health intervention.

A comparison of perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students.

BACKGROUND: The population of women in homelessness in Europe is increasing and women in homelessness experience multiple healthcare needs. However, there is insufficient understanding about how perceptions of caring behaviours compare between women in homelessness as patients and nurses in their clinical practice. AIM: This study aimed to investigate perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students. METHODS: A cross-sectional design was used with convenience sampling to recruit groups of women in homelessness (n = 37), Registered Nurses (n = 92) and nursing students (n = 142) in Stockholm, Sweden. Between August 2019 and December 2020, data were collected through face-to-face interviews or online, using the Caring Behaviours Inventory-24 instrument. Data were analysed using descriptive statistics and group-comparing hypothesis tests. RESULTS: Overall, women in homelessness' perceptions of caring behaviours were significantly lower than nursing students (p < 0.001), who in turn scored significantly lower than Registered Nurses (p < 0.001). The Knowledge and Skill domain had the highest score, and the Connectedness domain had the lowest score in all three groups. The ranking of the individual items according to score varied between the groups. However, all three groups had the highest score for the Knowing how to give shots, IVs, etc., item and the lowest score for the Helping the patient to grow item. CONCLUSION: Healthcare providers and nurse educators should consider incongruences and congruences in caring behaviours to better prepare Registered Nurses and nursing students to contribute to increased health equity, and more targeted clinical practice for women in homelessness.

The relationship between attitudes to homelessness and perceptions of caring behaviours: a cross-sectional study among women experiencing homelessness, nurses and nursing students.

BACKGROUND: Women experiencing homelessness have complex and multifaceted healthcare needs and yet they are an underserved population across healthcare services. Nurses are trained to perform an integral role in the provision of equitable healthcare and their attitudes towards homelessness may therefore influence the care that women experiencing homelessness receive. This study aimed to examine correlations between attitudes towards homelessness and caring behaviours, and to test if these correlations differed between the groups of women experiencing homelessness, registered nurses, and nursing students. METHODS: A cross-sectional design using convenience sampling was used to recruit women experiencing homelessness (n = 37), registered nurses (n = 90), and nursing students (n = 138) in Stockholm, Sweden between August 2019 and December 2020. The participants answered two questionnaires: the Attitudes Toward Homelessness Inventory and the Caring Behaviours Inventory-24. Correlations between ordinal variables were calculated using Spearman's rank correlation ρ. Tests of equality between two independent correlations were performed using a Z-test applied to Fisher's z-transformed correlations. An advisory board of women with lived experience of homelessness supported the interpretation of the results. RESULTS: Weak, negative correlations were identified between the Attitudes Toward Homelessness Inventory and Caring Behaviours Inventory-24. The Attitudes Toward Homelessness Inventory mean total scores (SD) were 4.1 (0.6), 4.2 (0.6), 4.1 (0.5) points for the women experiencing homelessness, registered nurse, and nursing student groups, respectively, with the corresponding scores for the Caring Behaviours Inventory-24 being 4.1 (1.1), 5.2 (0.5), 4.8 (0.7) points, respectively. CONCLUSIONS: To promote equitable health for women experiencing homelessness, healthcare providers and nurse educators should consider the role of stigmatising attitudes in relation to caring behaviours.

Caring for patients with eating deficiencies in palliative care-Registered nurses' experiences: A qualitative study.

AIMS AND OBJECTIVES: The aim was to explore RNs' experiences of caring for patients with eating deficiencies in palliative care. BACKGROUND: Food and mealtimes are fundamental aspects for wellbeing and social interactions. The worldwide trajectory of ageing populations may result in increased need for palliative care. Everyday life with chronic life limiting illness and eating deficiencies is challenging for patients and families. RNs are key care providers at end-of-life. DESIGN: A qualitative study with an inductive approach was used. METHODS: Nineteen experienced RNs in palliative care were interviewed through telephone; interviews were audio recorded and transcribed verbatim. Inductive qualitative content analysis was performed, and the COREQ checklist was used to guide proceedings. RESULTS: The overarching theme, Supporting persons with eating deficiencies in-between palliative care and end-of-life care, is represented by three sub-themes: Easy to stick with doing, Just being, without doing, is hard and Letting go. Near end-of-life, eating symbolized social belonging and quality of life for RNs, whereas for patients and families, eating symbolized life. RNs tried practical solutions, however, not always according to patients' and families' preferences. CONCLUSIONS: RNs were well prepared to tackle physical inconveniences and provide support, however, less prepared to encounter existential, psychological and social issues in relation to eating deficiencies. Although RNs stated that human beings stop eating when they are about to die, letting nature run its' course and facilitating patients' transition to end-of-life care was challenging. RELEVANCE TO CLINICAL PRACTICE: Food and mealtimes represent fundamental aspects of human life and denote central parts in RNs clinical practice in palliative care. The findings can inspire development of a comprehensive palliative care approach to support patients and families. Structured reflection in relation to clinical practice may support and encourage RNs, caring for patients with eating deficiencies, in mastering both doing and being.

Belonging to a community of care: Mothers' experiences of online peer support groups for parents having lost a child with congenital heart defects.

The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.

Peer Support Experienced by Mothers of Children With Congenital Heart Defects in Sweden.

The aim of this study was to describe experiences of peer support among mothers of children with congenital heart defects. Ten mothers were interviewed through a semi-structured approach and interviews were analyzed with systematic text condensation. The respondents established various channels used for peer support and navigated between the channels depending on what type of information or support they needed. Through the channels, they found peers they developed strong friendships with and who they relied on for emotional support. Communicating with peers involved the reciprocal exchange of unique emotional support between peers who understand each other as well as the exchange of information derived from their collective knowledge, and thus, difficult to find without the help of peers. The findings illustrate the potential strengths of establishing reliable collaboration and liaisons between clinical units and peer support networks.

Caring Behaviors Inventory-24: translation, cross-cultural adaptation and psychometric testing for use in a Swedish context.

BACKGROUND: Patients' health and wellbeing are promoted when nurses successfully conceptualize caring in clinical practice. Measuring caring behaviors can advance knowledge about caring and has potential to improve caring practices and the outcomes of care. The Caring Behaviors Inventory-24 (CBI-24) is an empirical instrument for measuring caring, developed to determine perceptions of caring among patients and nurses. Since the instrument was not available in Swedish, the aim of this study was therefore to translate into Swedish and cross-culturally adapt CBI-24 for a Swedish healthcare context, and to psychometrically analyze the Swedish version of CBI-24. METHODS: The study used a traditional forward and back translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews, and (6) psychometric evaluations. RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential and conceptual equivalence. The cognitive interviews generated thoughts and reflections, which resulted in adjusting three items of the CBI-24 SWE. For psychometric analyses, 234 persons answered the questionnaire. Results indicated acceptable overall model fit in the χ2-value for the confirmatory factor analysis, while for the heuristic goodness-of-fit indices, the comparative fit index (CFI) and the standardized mean square residual (SMSR) indicated good model fits, and the root mean square error approximation (RMSEA) indicated an acceptable fit. CONCLUSIONS: CBI-24 SWE has been shown to be a psychometrically acceptable instrument for use in Swedish research contexts. Further studies regarding the clinical usefulness of the instrument may be in order. In particular, CBI-24 SWE should be evaluated among nurses in rural areas.

Experiences of food and mealtime from the perspective of patients with chronic life-limiting disease: A mixed-method systematic review.

AIM: To describe and synthesise experiences of food and mealtimes from the perspective of patients with chronic life-limiting disease. DESIGN: A mixed-method systematic review. DATA SOURCES: The databases Academic Search Complete, CINAHL, Nursing and Allied Health Database, PsycINFO, PubMed, Soc Index and Web of Science Core Collection were searched (January 2000 to March 2019). REVIEW METHODS: Out of 3151 identified articles, 24 were included for appraisal and synthesis, using a data based convergent design. RESULTS: Four themes were derived: 'understanding hampered eating-perhaps it is best to let nature run its course'; 'food and meals evoke distress-reducing joy, testing interim ways'; 'struggling with food and meals-eating to please others and to postpone death'; and 'food and meals as caring and love-flanked by social disconnecting'. CONCLUSION: For patients with chronic life-limiting disease, food entailed potential to remain healthy, improve well-being and prolong life. Meanwhile, eating difficulties were experienced as fundamentally affecting social life and interactions; consequently, joy around food and meals was lost.

Translation, Cross-Cultural Adaptation, and Psychometric Analysis of the Attitudes Towards Homelessness Inventory for Use in Sweden.

BACKGROUND: Homelessness is an increasing problem worldwide, and the origins of homelessness in high-income countries are multifaceted. Due to stigma and discrimination, persons in homelessness delay seeking health care, resulting in avoidable illness and death. The Attitudes Towards Homelessness Inventory (ATHI) was developed to cover multiple dimensions of attitudes toward persons in homelessness and to detect changes in multiple segments of populations. It has, however, not previously been translated to Swedish. AIMS: The aim of the present study was to translate, cross-culturally adapt, and psychometrically test the ATHI for use in a Swedish healthcare context. METHODS: The project used a traditional forward- and back-translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back-translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews including registered nurses (n = 5), nursing students (n = 5), and women in homelessness (n = 5); and (6) psychometric evaluations. The final ATHI questionnaire was answered by 228 registered nurses and nursing students in the year 2019. RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential, and conceptual equivalence. Confirmatory factor analysis was used to examine if the collected data fitted the hypothesized four-factor structure of the ATHI. Overall, it was found that the model had an acceptable fit and that the Swedish version of ATHI may be used in a Swedish healthcare context. LINKING EVIDENCE TO ACTION: The ATHI has been shown to be a psychometrically acceptable research instrument for use in a Swedish healthcare context. The systematic and rigorous process applied in this study, including experts with diverse competencies in translation proceedings and testing, improved the reliability and validity of the final Swedish version of the ATHI. The instrument may be used to investigate attitudes toward women in homelessness among nursing students and RNs in Sweden.

Perceptions of care after end-of-treatment among younger women with different gynecologic cancer diagnoses - a qualitative analysis of written responses submitted via a survey.

BACKGROUND: Less attention has been given to younger adults' psycho-oncology care needs than to children and older adults with cancer. The aim was to explore how care following end-of-treatment was perceived by women treated for different gynecologic cancer diagnoses during younger adulthood. METHODS: A sample of 207 women diagnosed with gynecologic cancer 2008 to 2016, aged 19-39 at time of diagnosis answered one open-ended question regarding important aspects of care after end-of-treatment. The written responses were analyzed with manifest content analysis and presented in relation to the women's diagnoses, i.e., cervical (n = 130), ovarian (n = 57), and other gynecologic cancer diagnoses (n = 20). RESULTS: The analysis resulted in three categories: Unmet long-term supportive care needs, Satisfying long-term supportive care, and Health care organizational difficulties. Over half of the women (66.7%) described unmet care needs. The corresponding figures were 80.7, 63.1 and 50% for women diagnosed with ovarian, cervical and other gynecologic cancer diagnoses, respectively. Satisfying supportive care were described by approximately one quarter of the women (26.1%). Among women diagnosed with ovarian cancer 14% described satisfying supportive care. The corresponding figures were 26.9 and 30% for women diagnosed with cervical cancer and other gynecological diagnoses, respectively. Approximately one quarter of the women, irrespectively of diagnosis, described aspects related to health care organizational difficulties (28%). CONCLUSIONS: The results highlight the importance of good quality care linked to the diagnosis and based on an understanding of the woman's need, desire and expectation of support after end-of-treatment.

Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey.

AIM: To explore experiences of peer support among parents of children with congenital heart defects. DESIGN: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden. METHODS: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation. RESULTS: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. CONCLUSION: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. IMPACT: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

Mothers' Adaptation to a Late Preterm Infant When Breastfeeding.

The aim of this study was to psychometrically test the Adaptation to the Late Preterm Infant when Breastfeeding Scale (ALPIBS) and also to test how a mother's self-efficacy predicts adaptation to a late preterm infant when breastfeeding. This study had a longitudinal and prospective design, and data collection was consecutive. Mothers (n = 105) with infants born between 340/7 and 366/7 weeks were recruited from a neonatal intensive care unit or a maternity unit. The ALPIBS was developed using exploratory factor analysis, and the association between breastfeeding self-efficacy and ALPIBS score was examined using linear regression analysis. The Breastfeeding Self-Efficacy Scale-Short Form instrument was used to measure self-efficacy in breastfeeding. A higher degree of self-efficacy was significantly associated with a higher degree of adaptation to the late preterm infant's breastfeeding behavior (P < .001). We identified 4 separate underlying factors measured by 11 items in the ALPIBS: (A) breastfeeding is a stressful event; (B) the infant should breastfeed as often as he or she wants; (C) a mother has to breastfeed to be a good mother; and (D) it is important to ensure control over the infant's feeding behavior. There is a link between self-efficacy and ALPIBS score, and self-efficacy is a modifiable factor that influences breastfeeding.

Written narratives from immigrants following a prenatal diagnosis: qualitative exploratory study.

BACKGROUND: Expectant parents often have optimistic expectations of the obstetric ultrasound examination and are unprepared for a diagnosis of foetal anomaly. Research that gives voice to the experiences of immigrants faced with a prenatal diagnosis is scarce, and there is a need for more exploratory research that provides insights into the experiences of these persons. The aim of this study was to explore narratives of experiences of immigrants with Arabic or Sorani interpreter needs when presented with a prenatal diagnosis of foetal anomaly. METHODS: A web-based tool with open-ended questions was distributed via Arabic and Kurdish non-profit associations and general women's associations in Sweden. Responses were received from six women and analysed with qualitative content analysis. RESULTS: The analysis resulted in three themes: (1) an unexpected hurricane of emotions, (2) trying to understand the situation though information in an unfamiliar language, and (3) being cared for in a country with accessible obstetric care and where induced abortion is legal. CONCLUSIONS: Immigrant women described an unexpected personal tragedy when faced with a prenatal diagnosis of foetal anomaly, and emphasised the importance of respectful and empathic psychological support. Their experiences of insufficient and incomprehensible information call attention to the importance of tailored approaches and the use of adequate medical interpreting services. There is a need for more descriptive studies that investigate decision-making and preparedness for induced abortion among immigrants faced with a prenatal diagnosis.

Women treated for gynaecological cancer during young adulthood - A mixed-methods study of perceived psychological distress and experiences of support from health care following end-of-treatment.

OBJECTIVE: To investigate the prevalence and predictors of cancer-related distress in younger women treated for gynaecological cancer, and to explore women's needs and experiences of psychosocial support following end-of-treatment. METHODS: Data were collected from 337 gynaecological cancer survivors, 19-39years at diagnosis, using a study-specific questionnaire and the Swedish Quality Register of Gynaecologic Cancer. Predictors of distress were investigated with multivariable logistic regression analysis. Open-ended questions were analysed with content analysis. RESULTS: The prevalence of cancer-related distress was 85% (n=286) including fear of cancer-recurrence (n=175, 61%), anxiety (n=152, 53%), depression (n=145, 51%), fear of death (n=91, 32%), concerns regarding sexuality (n=87, 34%) and fertility (n=78, 27%), and changed body image (n=78, 27%). Multi-modal treatment (OR 2.25, 95% CI 1.13-4.49) and a history of psychological distress (OR 3.44, 95% CI 1.41-8.39) predicted cancer-related distress. The majority of women experiencing distress also reported a need for support after end-of-treatment (n=205, 71%). One-third of those receiving support reported the received support as inadequate (n=55, 34%). Eight categories described reasons for not seeking support, e.g., lacked strength to seek professional support and too busy managing every-day life and, wanted help but did not know who to turn to. Four categories described reasons for not receiving sought support e.g., found it difficult to openly express feelings, psychosocial care was under-dimensioned, insufficient and unprofessional. CONCLUSION: Results identify the importance of support and longer-term follow-up for young survivors of gynaecological cancer. The support needs to be organised to meet this group's specific needs.

Prevalence and predictors of symptoms of anxiety and depression, and comorbid symptoms of distress in parents of childhood cancer survivors and bereaved parents five years after end of treatment or a child's death.

BACKGROUND: Symptoms of anxiety and depression and their comorbidity in parents of children diagnosed with cancer, particularly later in the cancer trajectory, need further study. The aim was to investigate the prevalence and predictors of symptoms of anxiety and depression in parents of childhood cancer survivors and bereaved parents, five years after end of treatment or a child's death and to investigate comorbidity between symptoms of anxiety, depression and posttraumatic stress. MATERIAL AND METHODS: Participants were 132 parents (68 mothers, 64 fathers) of survivors and 37 bereaved parents (20 mothers, 17 fathers). Chi-square test and t-test were used to explore differences in symptoms of anxiety and depression. Comorbidity was explored using Pearson's correlations and Chi-square test. Multivariable hierarchical linear regressions were used to identify predictors of symptoms of anxiety and depression. RESULTS: In parents of survivors, 20% reported anxiety and 14% reported depression. Corresponding figures among bereaved parents were 30% and 35%. Among parents of survivors reporting clinically relevant anxiety and depression, a larger proportion were mothers than fathers. No such difference was found among bereaved parents. Symptoms of anxiety, depression and posttraumatic stress were highly correlated (all r ≥ 0.65, p < .001). Comorbid symptoms were reported by 7-11% of parents of survivors and 14-24% of bereaved parents. In multivariable analyses, more severe symptoms of depression were associated with anxiety, posttraumatic stress and distress related to previous stressful life events. Being a mother, symptoms of depression and posttraumatic stress were associated with more severe symptoms of anxiety. CONCLUSION: A subset of parents report clinically elevated symptoms of anxiety and depression, comorbid anxiety, depression and posttraumatic stress. Experiencing distress related to previous stressful life events as well as concurrent comorbidity were associated with more severe psychological distress at five years after end of treatment/a child's death. These results deserve further attention in research and clinical care.

Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner.

BACKGROUND: Expectant fathers consider the second-trimester obstetric ultrasound examination as an important step towards parenthood, but are ill prepared for a detection of a fetal anomaly. Inductive research is scarce concerning their experiences and needs for support. Consequently, the aim of this study was to explore the emotional and cognitive experiences, during the time of diagnosis and decision-making, among males presented with congenital heart defect in the fetus carried by their pregnant partner. METHODS: Twelve expectant fathers were consecutively recruited through two tertiary referral centers for fetal cardiology in Sweden, after they had been presented with a prenatal diagnosis of congenital heart defect in the fetus carried by their pregnant partner. The respondents were interviewed via telephone, and the interviews were analyzed using inductive qualitative content analysis. RESULTS: The respondents experienced an intense emotional shock in connection with detection. However, they set their own needs aside to attend to the supportive needs of their pregnant partner, and stressed the importance of an informed joint decision regarding whether to continue or terminate the pregnancy. When terminating the pregnancy, they experienced a loss of a wanted child, an emotionally intense termination procedure, needs of support neglected by professionals, and worries about the risk of recurrence in future pregnancies. When continuing the pregnancy, they tried to keep a positive attitude about the coming birth, but were simultaneously worried about the postnatal situation. CONCLUSIONS: The findings illustrate the importance of inclusive care and adequate follow-up routines for both expectant parents following a prenatal diagnosis. This includes the initial emotional shock, the decisional process, and depending on decision reached, the termination or continuation of the pregnancy. Expectant fathers presented with a fetal anomaly need adequate follow-up routines to address worries about risk of recurrence in future pregnancies and worries about the postnatal situation.

Prospective questionnaire study showed that higher self-efficacy predicted longer exclusive breastfeeding by the mothers of late preterm infants.

AIM: An important variable that influences breastfeeding outcomes is how confident a woman feels about her ability to breastfeed successfully at an early stage. We investigated breastfeeding self-efficacy in the mothers of late preterm infants. METHODS: This was a prospective, comparative study that focused on mothers who had delivered babies at 34 + 0 to 36 + 6 weeks and were recruited in 2012-2015 from a neonatal intensive care unit and a postnatal ward at a Swedish university hospital. The Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) was used to psychometrically assess the mothers at 40 weeks of postmenstrual age (n = 148) and at three months of corrected age (n = 114). RESULTS: The BSES-SF scores were higher in the 87% of mothers that exclusively breastfed when their babies reached 40 weeks (57.1 out of 70) than those who did not (41.4, p < 0.001), indicating better self-efficacy. The figures remained higher in the 68% of exclusive breastfeeding mothers at three months of corrected age (60.9 versus 51.7). CONCLUSION: Self-efficacy was an important predictor of the length of breastfeeding in mothers of late preterm infants, and the BSES-SF can be used to detect low self-efficacy that could lead to early breastfeeding cessation.