Factors Associated With Higher Levels of Grief and Support Needs Among People Bereaved During the Pandemic: Results from a National Online Survey.

We identified factors associated with higher levels of grief and support needs among 711 people bereaved during the COVID-19 pandemic in the UK (deaths 16 March 2020-2 January 2021). An online survey assessed grief using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36), and practical and emotional support needs in 13 domains. Participants' mean age was 49.5 (SD 12.9); 628 (88.6%) female. Mean age of deceased 72.2 (SD 16.1). 311 (43.8%) deaths were from confirmed/suspected COVID-19. High overall levels of grief and support needs were observed; 28.2% exhibited severe vulnerability (index of vulnerability ≥24). Grief and support needs were higher for close relationships with the deceased (vs. more distant) and reported social isolation and loneliness (p < 0.001), and lower when age of deceased was above 40-50. Other associated factors were place of death and health professional support post-death (p < 0.05).

Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. AIM: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. DESIGN: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. SETTING/PARTICIPANTS: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. RESULTS: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% (n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. CONCLUSIONS: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation.

Exploring the psychological impact of life-limiting illness using the Attitude to Health Change scales: A qualitative focus group study in a hospice palliative care setting.

OBJECTIVE: Practitioners are often reluctant to engage in conversations that acknowledge patient's health concerns. This can affect patient and family carer psychological well-being. The Attitude to Health Change scales, adapted from the validated Adult Attitude to Grief scale, may have potential to address the psychological impact of illness and facilitate conversations in palliative care. To explore how health and social care professionals experience using the Attitude to Health Change Scales within hospice settings. METHODS: Qualitative focus groups with practitioners currently using the Attitude to Health Change scales in three UK hospices. Two researchers conducted the interviews, developed the thematic framework and independently coded the transcripts using a framework analysis approach. RESULTS: Three focus groups (n = 21 practitioners). The scale was used to assess and reassess levels of vulnerability and resilience to identify the need for support and to facilitate structured in-depth conversations. Factors that influenced scale implementation included the following: practitioner personal comfort and training; patient and family carer willingness to engage with the scales and having a practitioner "champion" within the organisation. CONCLUSION: This exploratory work has identified the potential value of the scales for assessment and to facilitate conversations. Further research needs to incorporate the views of patients and family carers.

Identifying vulnerability in grief: psychometric properties of the Adult Attitude to Grief Scale.

PURPOSE: Grief is a reaction to a significant loss that can profoundly affect all aspects of life and capacity to function well. The consequences can vary from severe psychological distress through to physical disturbances and significant social problems. This study sought to identify a measure of vulnerability in grief, by examining the psychometric properties of the Adult Attitude to Grief (AAG) scale in a sample of 168 people seeking help in their bereavement. METHODS: The factor structure of the scale, its internal consistency, its construct validity and optimum classification cutoffs were tested. RESULTS: Confirmatory factor analysis broadly supported the factor structure of the AAG, but identified one item that could profitably be reworded. Internal consistency of the three subscales was acceptable. Construct validity and discriminative validity were supported by correlations with allied constructs (depression and anxiety) and a significant difference between scores for clients with Prolonged Grief Disorder and those without. A correlation with counsellors' own clinical ratings of vulnerability demonstrated criterion-related validity of the AAG. Using receiver operating characteristic methods, optimum cutoff scores on the scale were identified for the classification of different levels of vulnerability. CONCLUSION: The AAG was found to be a psychometrically promising tool for identifying vulnerability in grief.

Measuring Vulnerability in Grief: The Psychometric Properties of the Italian Adult Attitude to Grief Scale.

Although experiences of loss and the consequent grief are natural in human life, some individuals may have difficulty managing these events, to the point of developing significant impairment in their functioning in important life areas. Given this, the present research aimed to explore the psychometric properties of the Italian version of the Adult Attitude to Grief scale (AAG) to facilitate research on adult vulnerability to grief among Italian-speaking populations. A sample of 367 participants (Mage = 30.44, SD = 11.21; 78% females) participated in this research. A back-translation procedure was implemented to develop the Italian AAG. Then, participants completed the Italian AAG alongside a battery of other self-report psychometric scales in order to assess aspects of the construct validity of the AAG: the Forty-Item Defense Style Questionnaire, the Impact of Event Scale-Revised, and the Beck Depression Inventory-II. A bifactor structure was found to have the best fit to the data, supporting the possibility of using both the general factor (i.e., vulnerability) and three dimensions (i.e., overwhelmed, controlled, and resilient). Unlike the original version, the control dimension emerged as a "protective" factor in the Italian population, together with the resilient factor. Furthermore, results provided satisfactory indications of internal consistency and construct validity. In conclusion, the Italian AAG was shown to be a valid, reliable, quick, and easy-to-use scale that can be used both for research and clinical practice in the Italian context.

Prolonged grief during and beyond the pandemic: factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic.

Background: The COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time. However, little is known about the long-term consequences of these experiences, including the prevalence of Prolonged Grief Disorder (PGD) and other conditions in pandemic-bereaved populations. Methods: A longitudinal survey of people bereaved in the UK between 16 March 2020 and 2 January 2021, with data collected at baseline (n = 711), c. 8 (n = 383), 13 (n = 295), and 25 (n = 185) months post-bereavement. Using measures of Prolonged Grief Disorder (PGD) (Traumatic Grief Inventory), grief vulnerability (Adult Attitude to Grief Scale), and social support (Inventory of Social Support), this analysis examines how participant characteristics, characteristics of the deceased and pandemic-related circumstances (e.g., restricted visiting, social isolation, social support) are associated with grief outcomes, with a focus on symptoms of PGD. Results: At baseline, 628 (88.6%) of participants were female, with a mean age of 49.5 (SD 12.9). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Sample demographics were relatively stable across time points. 34.6% of participants met the cut-off for indicated PGD at c. 13 months bereaved and 28.6% at final follow-up. Social isolation and loneliness in early bereavement and lack of social support over time strongly contributed to higher levels of prolonged grief symptoms, while feeling well supported by healthcare professionals following the death was associated with reduced levels of prolonged grief symptoms. Characteristics of the deceased most strongly associated with lower levels of prolonged grief symptoms, were a more distant relationship (e.g., death of a grandparent), an expected death and death occurring in a care-home. Participant characteristics associated with higher levels of prolonged grief symptoms included low level of formal education and existence of medical conditions. Conclusion: Results suggest higher than expected levels of PGD compared with pre-pandemic times, with important implications for bereavement policy, provision and practice now (e.g., strengthening of social and specialist support) and in preparedness for future pandemics and mass-bereavement events (e.g., guidance on infection control measures and rapid support responses).

Exploring Specialist Palliative Care Practitioner Perspectives on the Face Validity of the Attitude to Health Change Scales in Assessing the Impact of Life-limiting Illness on Patients and Carers.

Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face validity of the Attitude to Health Change Scales (patient and carer versions) from the perspective of specialist palliative care professionals. Design: A two-stage study: (i) focus groups to explore experiences of scale use and wording, (ii) online survey to gather preferences on possible scale modifications. Focus group data were analysed using framework analysis. A hermeneutic approach was used to modify the wording of the scales, ensuring adherence to the underpinning concepts used in the design of the scale, congruence with the palliative care context, and simplicity of language. Setting/Subjects: Specialist palliative care practitioners in UK hospice settings who had been involved in pilot use of the scales in clinical practice. Results: 21 practitioners participated in 3 focus groups across 3 UK hospice sites, 9 of those participants responded to the survey. Four themes are presented: the importance and distinctiveness of the scales; maintaining conceptual integrity; ensuring a palliative care focus; and ensuring linguistic clarity. New iterations of the patient and carer versions of the Attitude to Health Change scales were developed. Conclusion: The scales appear to reflect the intended theoretical constructs, and are worded in a way which is congruent with the experience of specialist palliative care practitioners.