Moving on: Factors associated with caregivers’ bereavement adjustment using a random population-based face-to-face survey

Burns, Emma J.; Prigerson, Holly G.; Quinn, Stephen; Abernethy, Amy P.; Currow, David C.

doi:10.1177/0269216317717370

Cited by 16 publications

(7 citation statements)

References 72 publications

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“…2 Emotional support is also necessary for MND caregivers because of their much higher risk of PGD than the general bereaved population and insufficient support for caregivers during the disease journey was a significant predictor to PGD. 2 Support helps caregivers to move on, 22 but this study showed that the support received was not optimal. This dissatisfaction was closely linked to the perception that staff lacked training and competence in this area of care, which was compounded by insufficient contact with Advisors.…”

Section: Training For and Provision Of Emotional Supportmentioning

confidence: 80%

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

et al. 2021

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Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.

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Section: Training For and Provision Of Emotional Supportmentioning

confidence: 80%

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

et al. 2021

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“…Caregiver prolonged grief (PG-12) predicted post-death prolonged grief (PG-13) scores, and this finding aligns with previous studies showing the predictive utility of the PG-12. 8,[19][20][21] However, several factors contribute to prolonged grief symptoms post-death, 20,22,[25][26][27] which is why comprehensive, systematic and repeated assessment of grief, both before and after death, is recommended in research, 20,23,46,47 policy 48 and practice guidelines. 49 Preand post-death support that is tailored to the needs of 'normal' grievers, who are the majority of bereaved caregivers, might best work in partnership with explicit and careful attention to promoting informal support, 50 and could focus on bereaved caregivers' wishes for more information on preparing for bereavement, how to harness their social networks and developing strategies for dealing with grief.…”

Section: Discussionmentioning

confidence: 99%

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

et al. 2019

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Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers’ grief, quality of life and general health in relation to non-caregivers. Aim: We aimed to determine how caregivers’ grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months). Setting/participants: Participants ( N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. Results: There were significant differences between the caregivers’ and comparisons’ grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death. Conclusion: It took 9–10 months for the caregivers’ grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

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“…a closer relationship to the deceased, socioeconomic disadvantage) as well as positive factors for reduced risk (e.g. positive high-quality social support, caregiver report of needs met) [ 35 – 39 ]. Moreover, instruments to identify family members at risk for developing bereavement-related mental health challenges pre- or post-loss have been developed (e.g.…”

Section: Discussionmentioning

confidence: 99%

Can a single question about family members’ sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient’s death

2019

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Background It has been recognised that more evidence about important aspects of family members’ sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members’ sense of security during palliative care, and iii) to evaluate if family members’ sense of security during ongoing palliative care predicts well-being during bereavement. Methods Between September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patient’s death (70%). They answered a single question regarding the family members’ sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link). Results Sixteen variables were positively related to family members’ sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members’ mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members’ perceived quality of life. Moreover, the family members’ sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patient’s death, e.g. psychological well-being, complicated grief symptoms, health related quality of life. Conclusions The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care. Electronic supplementary material The online version of this article (10.1186/s12904-019-0446-1) contains supplementary material, which is available to authorized users.

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Moving on: Factors associated with caregivers’ bereavement adjustment using a random population-based face-to-face survey

Abstract: These results support the relevance of 'moving on' as an indicator of caregivers' bereavement adjustment. Following the outcomes of bereaved caregivers longitudinally is essential if effective interventions are to be developed to minimise the risk of prolonged grief disorder.

Cited by 16 publications

References 72 publications

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study

Can a single question about family members’ sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient’s death

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