The dying parent and dependent children: a nationwide survey of hospice and community palliative care support services

Cockle-Hearne, Jane; Reed, Elizabeth; Todd, Jennifer; Ream, Emma

doi:10.1136/bmjspcare-2019-001947

Cited by 15 publications

(32 citation statements)

References 30 publications

(39 reference statements)

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“…Existing health and social care structures for people with dementia rarely seem to meet the needs of this particular group. In contrast, support services for children and young adults in the context of palliative care is a natural part of the palliative care philosophy and are well integrated into palliative care services (Cockle-Hearne et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis: A scoping review

2021

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Background Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden. Design and methods Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed. Findings Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents’ behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support. Conclusions The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members’ access to relevant care and support for themselves.

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Section: Discussionmentioning

confidence: 99%

Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis: A scoping review

2021

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“…Professionals feared any intervention on their part might worsen the situation, rather than improve it. The phrase 'opening a can of worms' was cited in several articles [15][16][17]; it was alluded to by professionals and researchers alike over concerns of potentially complicating a situation [18,19], and not being able to cope emotionally in the aftermath [16]. They had "concerns about saying the wrong thing, being perceived as critical of parenting, or the potential to cause distress to children and their families when exploring children's support needs" [20].…”

Section: Fear Of Opening a Can Of Wormsmentioning

confidence: 99%

“…The situation became more disorderly and chaotic, and the nurses found it more difficult not being able to control and/ or restore the order in the family. " [26] Thus, while professionals empathised with the parents, recognising that they might be having difficulties accepting their prognosis and have the desire to protect their own children from distress, their own perceived duty to the child led to a dilemma that left them feeling powerless [18,19,21,22,[25][26][27]:…”

Section: Caught In Between Family Dynamics and Their Own Valuesmentioning

confidence: 99%

“…This might have led to missed opportunities for rendering support or legitimised practices that removed 'disruptive' children from delicate situations [25]. In addition, as they often took cues from their parents, children were less likely to engage with professionals [18,19,25], particularly if parents were reluctant to talk or appeared stoic. All these assumptions, coupled with self-devaluation of the role they played in providing a listening ear and being emotionally present [21], might have led to professionals passing the responsibility of supporting children onto others.…”

Section: It Is Futile To Engage Themmentioning

confidence: 99%

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Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals

Wickramasinghe¹,

Yeo²,

Chong³

et al. 2022

BMC Palliat Care

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Background Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. Methods Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields”. Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. Results Three themes emerged – healthcare professionals’ discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. Conclusion Healthcare professionals’ sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions.

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“…To facilitate family resilience, there is often a need for parents to be encouraged, equipped and supported to meet the needs of their children throughout the EOL experience [16]. Providing support for children's parents not only enhances a parent's capacity to support their children through this highly stressful life-event, but can also be emotionally protective for them as caregivers [17,18].…”

Section: Introductionmentioning

confidence: 99%

‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer

McCaughan

Semple

Hanna

2021

Support Care Cancer

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Purpose Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. Methods This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. Results Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. Conclusions Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is ‘well enough’ to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

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The dying parent and dependent children: a nationwide survey of hospice and community palliative care support services

Cited by 15 publications

References 30 publications

Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis: A scoping review

Childrens’ and young adults’ perspectives of having a parent with dementia diagnosis: A scoping review

Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals

‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer

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