Obstacles and facilitators to communicating with children about their parents' mental illness: a qualitative study in a sub-district of Mpumalanga, South Africa.

BACKGROUND: Given that common mental disorders are one of the leading causes of disease burden worldwide, it is likely that many children are growing up with a parent or other adult within their family who has anxiety or depression. Parents with a mental illness may not consider it appropriate to discuss their illness with their child, and consequently an absence of communication may lead to stigmatization, shame, misunderstanding their parents' symptoms, and even blaming themselves. There is a scarcity of research exploring the experiences and perceptions of healthcare professionals about communication with children of parents with mental illness in low-resource and African contexts. METHODS: A qualitative study using semi-structured interviews with healthcare professionals (n = 15) was conducted within the Bushbuckridge sub-district of Mpumalanga Province, South Africa. Data were analysed using Thematic Analysis. RESULTS: Four themes were identified relating to the obstacles around communication with children. These included: (1) finding an appropriate language to describe mental illness, as well as the prevailing cultural explanations of mental illness (2) the stigma associated with mental illness (3) the perceived role of children in society and (4) mental health services and staff skills. Two themes that addressed facilitators of communication about parental mental illness were identified: (1) the potential to increase mental health awareness amongst the broader community through social media, the internet, and general psychoeducation (2) healthcare professionals' concerns for the wellbeing and future mental health of patients' children, as well as their hopes for increased mental health awareness amongst future generations. CONCLUSIONS: This study provides insight into healthcare professionals' attitudes and perceptions about talking to patients and families within their community about mental illness. The results provide recommendations about possible ways to promote sharing information about a parent's mental illness with children at an individual and community level. Future research should focus on the collaborative creation of culturally sensitive psychoeducational resources and evidence-based guidelines. This must be supported by systemic and organisational change in order for professionals to successfully facilitate conversations with patients who are parents, and their children.

Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings.

OBJECTIVES: This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating' healthcare professionals' (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child's own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda. DESIGN: A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions. SETTING: Health and social care and third sector organisations in South Africa and Uganda. PARTICIPANTS: Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English. RESULTS: Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients' beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations. CONCLUSIONS: Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals' and communities' understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.

Exploring healthcare professionals' beliefs, experiences and opinions of family-centred conversations when a parent has a serious illness: A qualitative study.

This study explored healthcare professionals' perceived role in talking to adult patients about sharing their diagnosis with children. Semi-structured interviews were conducted to explore healthcare professionals' beliefs about how families could and should be supported when a parent has a serious illness. Participants were 24 healthcare professionals working in primary, secondary and tertiary NHS services in the UK with adult patients diagnosed with a serious illness. Data were analysed thematically. Many healthcare professionals reported systems to identify patients' family relationships, but this information was rarely used to initiate conversations on what and how to talk to children. It was frequently assumed that someone else in the healthcare system was supporting patients with family communication. Others reported there were more urgent priorities for the consultation or considered that talking to children was a private family matter. However, several professionals did undertake these conversations, viewing this as a central part of their role. Some healthcare professionals felt they had inadequate skills or confidence to raise talking to children with their patients and indicated a need for specific training to address this. The results highlight the importance of systematically documenting patients' relationships with children so that this information can be used to inform ongoing discussions with the healthcare team about what children have been told. Patients consistently report wanting support about how to talk to children and the benefits of effective communication are well documented. Dissemination of this evidence could encourage professionals across all specialities to include family-centred communication in routine patient care. Training resources are needed so that staff feel empowered and equipped to raise these sensitive subjects with their patients.

Challenges and opportunities for perinatal health services in the COVID-19 pandemic: a qualitative study with perinatal healthcare professionals.

BACKGROUND: Perinatal healthcare professionals (PHCPs) provide essential support to all parents in the perinatal period, including young parents aged 16-24, who are at an increased risk of morbidity and mortality. Little is known about the impact of COVID-19 restrictions on the provision of perinatal services, and on perinatal healthcare professionals, caring for young parents in the UK. METHODS: A UK based qualitative study using semi-structured interviews with perinatal healthcare professionals (n = 17). Data were analysed using thematic analysis. RESULTS: Two themes were identified describing perinatal healthcare professionals' perceptions of providing care to young parents during the pandemic. Perinatal healthcare professionals perceived that young parents' needs were amplified by the pandemic and that pandemic-related changes to the service, such as the use of telemedicine to replace face-to-face interactions, did not manage to successfully mitigate the increased feelings of anxiety and isolation experienced by young parents. Concerns were raised by perinatal healthcare professionals that these changes reduced young parent's access to vital support for themselves and their child and may contribute to exacerbating pre-existing inequalities. CONCLUSIONS: This study provides insight into the impact of the COVID-19 pandemic on the provision of perinatal care to young parents. Perinatal mental health professionals felt these negative impacts could be overcome by using a blended approach of technology and face-to-face interactions allowing regular contact with young parents and facilitating the exchange of vital information, while maintaining access to opportunities for social interactions with other parents. Findings from this study could be used to future-proof services against further COVID-19 restrictions.

Young parents' experiences of pregnancy and parenting during the COVID-19 pandemic: a qualitative study in the United Kingdom.

Young parents (aged 16-24 years) in the perinatal period are at an increased risk of poor mental health especially during the COVID-19 pandemic, due to multiple risk factors including social and economic instability. COVID-19 related restrictions had profound implications for the delivery of perinatal care services and other support structures for young parents. Investigating young parents' experiences during the pandemic, including their perceived challenges and needs, is important to inform good practice and provide appropriate support for young parents.Qualitative interviews were conducted with young parents (n = 21) during the COVID-19 pandemic in the United Kingdom from February - May 2021. Data were analysed using thematic analysis.Three key themes were identified to describe parents' experiences during the COVID-19 pandemic. Parents reported specific COVID-19 related anxieties and stressors, including worries around contracting the virus and increased feelings of distress due to uncertainty created by the implications of the pandemic. Parents described feeling alone both at home and during antenatal appointments and highlighted the absence of social support as a major area of concern. Parents also felt their perinatal care had been disrupted by the pandemic and experienced difficulties accessing care online or over the phone.This study highlights the potential impact of the COVID-19 pandemic on young parents, including their mental wellbeing and the perinatal support they were able to access. Insights from this study can inform the support and services offered to families going forward. Specifically, the findings emphasise the importance of (a) supporting both parents during perinatal appointments, (b) providing parents with mental health support early on and (c) finding ways to facilitate communication pathways between professionals and parents.

Parent and Patient Reported Outcomes for Head Shape in Children Undergoing Surgery for Single Suture Synostosis.

ABSTRACT: Assessing outcomes following surgery for single suture craniosynostosis is important to ensure minimum standards are being met, but also to compare results using different surgical techniques and treatment protocols. What constitutes an "outcome" and how this is measured remains a challenge, particularly when assessment should include consideration of aesthetic, functional, and psychological domains.The Oxford Craniofacial Unit has initiated routine collection of parents' and patients' ratings of 2 factors that are closely associated with psychological adjustment; how noticeable the child's headshape is and how much this bothers the parent and/or child. A brief Surgical Outcome Questionnaire is completed by parents and children (over 7 years) at their outpatient appointment; parents are also asked to rate the extent to which they feel surgery made a difference to their child's headshape.Data are presented for 519 parents and 248 children with single suture craniosynostosis who attended the Oxford Craniofacial Unit in 2018 and 2019; this represents over 80% of patients seen in the clinic indicating the questionnaire is acceptable for families and the potential for rapid, relevant data on a continuous basis. Analysis of the data is presented to demonstrate the utility of the Surgical Outcome Questionnaire in exploring the views of both parents and patients of the noticeability and level of concern about the child's headshape for different age groups and diagnoses.The Surgical Outcome Questionnaire provides a novel method of collecting routine data for patients across their craniofacial care pathway, using variables which are relevant and meaningful for patients and parents.

Conversations About Children When an Important Adult Is at End of Life: An Audit.

PURPOSE: Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals' perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice. METHODS: An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress. RESULTS: Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option. CONCLUSIONS: Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.

Experiences of preparing children for a death of an important adult during the COVID-19 pandemic: a mixed methods study.

OBJECTIVE: The objectives of this study were to investigate how families prepared children for the death of a significant adult, and how health and social care professionals provided psychosocial support to families about a relative's death during the COVID-19 pandemic. DESIGN/SETTING: A mixed methods design; an observational survey with health and social care professionals and relatives bereaved during the COVID-19 pandemic in the UK, and in-depth interviews with bereaved relatives and professionals were conducted. Data were analysed thematically. PARTICIPANTS: A total of 623 participants completed the survey and interviews were conducted with 19 bereaved relatives and 16 professionals. RESULTS: Many children were not prepared for a death of an important adult during the pandemic. Obstacles to preparing children included families' lack of understanding about their relative's declining health; parental belief that not telling children was protecting them from becoming upset; and parents' uncertainty about how best to prepare their children for the death. Only 10.2% (n=11) of relatives reported professionals asked them about their deceased relative's relationships with children. This contrasts with 68.5% (n=72) of professionals who reported that the healthcare team asked about patient's relationships with children. Professionals did not provide families with psychosocial support to facilitate preparation, and resources were less available or inappropriate for families during the pandemic. Three themes were identified: (1) obstacles to telling children a significant adult is going to die, (2) professionals' role in helping families to prepare children for the death of a significant adult during the pandemic, and (3) how families prepare children for the death of a significant adult. CONCLUSIONS: Professionals need to: provide clear and honest communication about a poor prognosis; start a conversation with families about the dying patient's significant relationships with children; and reassure families that telling children someone close to them is dying is beneficial for their longer term psychological adjustment.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

Coping with a cleft II: Factors associated with psychosocial adjustment of adolescents with a cleft lip and palate and their parents.

OBJECTIVE: TO explore the factors that predict psychosocial adjustment in young people with a cleft and their parents. DESIGN, PARTICIPANTS, SETTING: The study used a cross-sectional postal questionnaire design involving young people aged between 11 and 16 and their parents from two cleft services. Data are presented for 91 adolescents and their mothers. MAIN OUTCOME MEASURES: Participants completed measures of psychological adjustment, coping, social experiences, satisfaction with appearance, stressful life events, cleft-related factors, and demographic information. RESULTS: Psychosocial adjustment in adolescents was predicted by their social experiences and maternal well-being. Satisfaction with appearance, perceived speech problems, and the use of avoidant coping strategies were also important factors relating to their adjustment. For mothers, adjustment was predicted by use of coping strategies such as self-blame, venting, and acceptance, in addition to perceived problems with their child's hearing and the number of stressful life events experienced. CONCLUSIONS: The findings are discussed in relation to the concepts of adjustment, coping, satisfaction with appearance, and maternal mental health. Directions for future research are outlined, and a number of opportunities and challenges for cleft services regarding the provision of timely interventions for this age group and their families are discussed.

Coping with a cleft: psychosocial adjustment of adolescents with a cleft lip and palate and their parents.

OBJECTIVE: To explore the nature of psychosocial adjustment in young people with a cleft as well as in their parents, within the framework of Lazarus and Folkman's (1984) transactional model of stress and coping. DESIGN, PARTICIPANTS, SETTING: A cross-sectional postal questionnaire design study was used, involving young people aged between 11 and 16 years and their parents. There were 145 families from two cleft services participating in the study. OUTCOME MEASURES: Participants completed measures of psychological adjustment, coping, social experiences, satisfaction with appearance, cleft-related factors, and demographic information. RESULTS: Young people with a cleft and their mothers did not report psychosocial adjustment difficulties above that of the normal population. An insufficient number of fathers were recruited for substantive analysis to be conducted using their data. CONCLUSIONS: The findings show little evidence of significant psychosocial adjustment difficulties for adolescents with a cleft or for their mothers. The concepts of adjustment, coping, satisfaction with appearance, and maternal mental health in this population are discussed. The results highlight the importance of timely interventions and seeking multiple perspectives in clinical management of a cleft. Questions are raised about the completion of self-report measures for future research in this population.