'There's something about admitting that you are lonely' - prevalence, impact and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study.

BACKGROUND: Loneliness is a prevalent societal issue and can impact on a person's physical and mental health. It is unclear how loneliness impacts on end of life experiences or how such feelings can be alleviated. AIM: To explore the perceived prevalence, impact and possible solutions to loneliness among people who are terminally ill and their carers in Northern Ireland through the lens of health and social care professionals. DESIGN: An explanatory multi-method study. SETTING/PARTICIPANTS: An online survey (n = 68, response rate 30%) followed by three online focus groups with palliative and end of life care health and social care professionals (n = 14). Data were analysed using descriptive statistics and thematic analysis. RESULTS: Loneliness was perceived by professionals as highly prevalent for people with a terminal illness (92.6%) and their carers (86.8%). Loneliness was considered a taboo subject and impacts on symptoms including pain and breathlessness and overall wellbeing at end of life. Social support was viewed as central towards alleviating feelings of loneliness and promoting connectedness at end of life. Four themes were identified: (1) the stigma of loneliness, (2) COVID-19: The loneliness pandemic (3) impact of loneliness across physical and mental health domains and (4) the power of social networks. CONCLUSION: There is a need for greater investment for social support initiatives to tackle experiences of loneliness at end of life. These services must be co-produced with people impacted by terminal illness to ensure they meet the needs of this population.

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.

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'.