What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents
home care; home care services; Paediatrics; palliative care; preferred place of death; terminal care
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. AIM: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. DESIGN: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. SETTING/PARTICIPANTS: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. RESULTS: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. CONCLUSION: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.
Malcolm C; Knighting K
Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163211023300" target="_blank" rel="noreferrer noopener">10.1177/02692163211023300</a>
A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?
Children; End-of-life care; Evaluation; Families; Home-based
Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children's end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why. Method(s): Adopting principles of realist evaluation, an initial programme theory (IPT) was developed from multiple data sources including a scoping review, service documentation review, audit of service data, and qualitative data gathered from stakeholder (n = 6) and family interviews (n = 10). Three families who had used the service were identified as case studies and interviews with professionals involved in their care (n = 20) were conducted to test the IPT. The findings informed the revised CMOs illustrating the contexts and mechanisms which underpin how and why the service works and for whom. Result(s): CMO configurations were identified explaining how and why the service works for families across five core components: anticipatory approach to care planning and delivery, advance care planning, service responsiveness and flexibility, 24/7 nurse-led service with 24-h medical support, and partnership working. Key mechanisms include establishing trusting relationships, building skills and parent confidence to deliver care, early advance care planning discussions with clear documentation, providing a single point of contact for families, workforce planning and resources to deliver the service as intended, effective communication and leadership within and between providers of the service, and use of joint policies and procedures. Recommendations for future development and expansion of the service are also discussed. Conclusion(s): The findings highlight core components making this service a success and areas of challenge which continue to be addressed as the service develops. With increasing demand for home-based end of life care for children these components provide a structure which can help to guide service development to meet the needs of these families in other regions to ensure that children and families receive good quality care in their place of choice. Copyright © 2022, The Author(s).
Malcolm C; Knighting K
BMC Palliative Care
2022
<a href="http://doi.org/10.1186/s12904-022-00921-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00921-8</a>
What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents
terminal care; home care; palliative care; Paediatrics; home care services; preferred place of death
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. AIM: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. DESIGN: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. SETTING/PARTICIPANTS: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. RESULTS: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. CONCLUSION: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.
Malcolm C; Knighting K
Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163211023300" target="_blank" rel="noreferrer noopener">10.1177/02692163211023300</a>
A relational understanding of sibling experiences of children with rare life-limiting conditions Findings from a qualitative study
Palliative Care; qualitative approaches; Siblings
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother’s or sister’s condition and the emotional sequelae of disease progression. Exploration of siblings’ experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.
2014-09
Malcolm C; Gibson F; Adams S; Anderson G; Forbat L
Journal Of Child Health Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1367493513485825" target="_blank" rel="noreferrer">10.1177/1367493513485825</a>
Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care
Humans; Attitude of Health Personnel; Health Services Accessibility; Health Services Needs and Demand; Qualitative Research; Focus Groups; Needs Assessment; Respite Care; Scotland; Charting the Territory; Family/psychology; Research/organization & administration; Palliative Care/organization & administration/standards; Hospice Care/organization & administration/standards; Terminal Care/organization & administration/psychology/standards
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.
Malcolm C; Forbat L; Knighting K; Kearney N
Palliative Medicine
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216308098214" target="_blank" rel="noreferrer">10.1177/0269216308098214</a>
Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study
Child; Humans; Terminally Ill; Family; Attitude of Health Personnel; Focus Groups; Needs Assessment; Delphi Technique; Scotland; adolescent; Palliative Care/organization & administration; Charting the Territory; Research/organization & administration; Hospice Care/organization & administration
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research priorities for children's hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children's hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritized research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children's hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children's hospice and palliative care research and optimise the delivery of children's hospice services that are underpinned by valid and robust research.
Malcolm C; Knighting K; Forbat L; Kearney N
Palliative Medicine
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216309104061" target="_blank" rel="noreferrer">10.1177/0269216309104061</a>
Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families
Malcolm C; Forbat L; Anderson G; Gibson F; Hain R
Palliative Medicine
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216310391346" target="_blank" rel="noreferrer">10.1177/0269216310391346</a>
Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families
Child; Female; Humans; Male; Young Adult; Interviews as Topic; Prospective Studies; Disease Progression; Medical Records; Family Health; adolescent; Preschool; Charting the Territory; Psychological; Stress; Mucopolysaccharidoses/diagnosis/psychology/therapy; Mucopolysaccharidosis I/diagnosis/therapy; Mucopolysaccharidosis III/diagnosis/therapy; Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Malcolm C; Hain R; Gibson F; Adams S; Anderson G; Forbat L
Acta Paediatrica
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1651-2227.2012.02680.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2012.02680.x</a>