Relatives in end‐of‐life care – part 2: a theory for enabling safety

Öhlén, Joakim; Andershed, Birgitta; Berg, Christina; Frid, Ingvar; Palm, Carl-Axel; Ternestedt, Britt‐Marie; Segesten, Kerstin

doi:10.1111/j.1365-2702.2006.01474.x

Cited by 34 publications

(37 citation statements)

References 30 publications

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“…They can become cluttered and poorly maintained environments [6,9]. Several challenges such as the mismatch between the available physical space and storage requirements of equipment and supplies in private homes, [46]; a lack of training or preparation to meet the complex demands, tailored information about available resources for clients and caregivers [47]; and the need to teach clients and caregivers practical skills and information [46,[48][49][50][51][52], have all been previously reported but without the link to safety. It is important to provide tailored and accessible information about the services available; training related to lifting and handling; medication management and administration; and dealing with symptoms and other forms of caregiver distress.…”

Section: Discussionmentioning

confidence: 99%

“…As in this study, caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or explained by others, instead of learning reactively after a crisis. Thus, preparing and guiding caregivers to manage the complexity of practical, emotional, and cognitive challenges associated with caring for the person who is dying, is pivotal to ensuring their physical, emotional, social, and functional safety as well as that of the person for whom they are caring [46][47][48][49][50]. This level of support for caregivers is essential to help them cope, enable them to recognize when they need additional support, and how to seek it, especially when care providers are not present.…”

Section: Discussionmentioning

confidence: 99%

“…Trust and confidence in healthcare providers have been shown to be critical to a feeling of safety at home [46][47][48][49]54,55]. Providing nurses and support workers as part of palliative home care services is accepted as being helpful, yet it also has the potential to compromise trust, confidence and the emotional safety of clients and caregivers if this help is seen as a revolving door of different home care providers.…”

Section: Discussionmentioning

confidence: 99%

“…• Inability to recognize if something is wrong because never told what to look for their concerns and efforts, and that enables the client, family, and caregivers to live their lives as they wish, to the extent possible [47]. This suggests that while the family's choice to prioritise other concerns over those of physical safety the broader concept of safety is actually increased.…”

Section: Functionalmentioning

confidence: 99%

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Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

et al. 2015

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Background: Palliative care clients with complex needs are increasingly choosing to remain at home for their care. Home represents familiarity, presence of supportive family and friends, potential for normalcy and, a safe haven. The palliative care literature although robust is hardly ever linked with safety and home care. Patient safety has been focused predominantly on institutions without a corresponding level of research or safety initiatives in the home care sector. Although a growing body of research has begun to highlight the complexity and multidimensionality of home care safety there is a dearth of understanding of safety issues from the perspectives of clients, caregivers, and paid providers who are responsible for managing and coordinating palliative home care. The aim of this study was to describe the experiences, challenges, and insights regarding safety for adults receiving and providing palliative home care services. Methods: Mixed method design was used to capture the multiple meanings and influences on the broadened conceptualization of home care safety including emotional, social, and functional safety. There were three types of participants in this multi-site study namely palliative home care clients, caregivers, and paid providers. Individual interviews (n = 33) were conducted in the client's home followed by a photo "walkabout" to describe their daily experiences and routines. Focus groups, three with experienced professionals (n = 25) and two with home support workers (n = 11) were also conducted. Results: This study supports the broadened conceptualization of home care safety namely that: the safety of the client and caregiver are inextricably linked; the home is an unregulated and uncontrolled site for providing palliative home care in contrast to hospitals or other institutional settings; and clients and caregivers have the autonomy to live and take risks in their own home. Conclusion: To ensure quality in palliative home care and to mitigate safety risks the client and caregiver(s) should be considered as the unit of care; caregivers need to be better prepared and trained to manage the complexity of issues; and regular assessments are imperative to monitor and detect changes in the unit of care and their changing needs while respecting their autonomy to make less than safe choices.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Functionalmentioning

confidence: 99%

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Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

et al. 2015

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“…‘knowing the system will be there when they need it’) is a key aspect of their ability to cope. Further, the findings from a systematic review of family members’ situations and needs for support in end‐of‐life care (Andershed 2006) demonstrates the significance of family members’ need for safety and security (Öhlén et al. 2007).…”

Section: Potential Implications For Palliative Family Caregiversmentioning

confidence: 99%

A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care‐giving

et al. 2010

Self Cite

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Traditionally viewed as in opposition to palliative care, newer ideas about 'health-promoting palliative care' increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are universally beneficial for and welcomed by all individuals. But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of 'family empowerment' strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of 'family empowerment' are explored in this regard. 'Family empowerment' approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers.

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What is a ‘secure base’ when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care

Milberg

Wåhlberg²,

Jakobsson³

et al. 2011

Psycho-Oncology

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Relatives in end‐of‐life care – part 2: a theory for enabling safety

Cited by 34 publications

References 30 publications

Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care‐giving

What is a ‘secure base’ when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care

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