Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Pediatric Blood and Cancer
2020
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/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
Taking Memory Making to the Next Level with the Use of Resin
Memory; resin; Artifact; Bereavement; Bereavement support; Child; conference abstract; controlled study; foot; grief; hair; Hospice; Human; Memory; nut; Palliative Therapy; photography; sibling; worker
Background Memory making is the process of creating mementos of a child with a life-limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Acorns memory making work already included sensitive and specialist use of artwork, hand and footprints, hand casting and photographs of children post death. Aim(s) 1. To share how effective Resin can be as a memory making tool, capturing very personal images and mementoes for parents and carers pre- and post- the loss of their child. 2. To understand the positive impact effective memory making has on families, pre- and post- bereavement. Methods * June. The use of Resin in memory making was identified as an area of interest by a Clinical Support Worker leading on Play and Activity. * July - Sept. Working group established bringing together key palliative care professionals across the hospice who were delivering memory making and keen to develop the service further. * Sept. - Dec. Introduced the use of Resin into memory making work. Results 1. After seeing the results of the Resin art, parents are increasingly requesting ongoing memory making through the last few days of their children's lives; using Resin as a tool supports this very specialised area of work we do across hospices. 2. Parents experienced an overwhelmingly positive impact from memory making, displaying the Resin-based artefacts created in pride of place in their homes. 3. Parent and siblings referring to the impact the memory making process and ongoing value of the Resin created items in post bereavement support sessions. Conclusions Our journey with using Resin has been a progressive one and following feedback from parents we know it has positively impacted on their bereavement experience. The Resin work has been led by parent and sibling engagement who find the creative work we do with them during the end of life phase and after their loss supports them through their grief. Resin is so adaptable therefore the memory- making teams can capture pictures of children, fingerprints, hand and foot prints and locks of hair in ornaments, necklaces, key rings. We hope that by sharing our work in this area other memory making teams across the palliative care sector can consider how they too may like to add this as another optional tool for their memory making work.
Aspinall E; Kelly M
BMJ Supportive and Palliative Care
2022
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/10.1136/spcare-2022-HUNC.206" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.206</a>
Young People and Transition at a Hospice for Adults
Hospice; Adult; Child; conference abstract; Hospice; Human; relative; skill; voice; worker; young adult
Background The hospice recognised a gap in services for patients, relatives and carers aged 18-30 and that services should be more age appropriate (Smith, Mooney, Cable, & Taylor (eds.). Teenage Cancer Trust, 2016). In addition, young people are living longer with life-limiting conditions (Fraser, Gibson-Smith, Jarvis, et al., 2020.) so transition to adult hospice services has become more necessary, which can be a daunting process (Beresford, 2013). Aim(s) Provide a 3-year National Lottery funded Young Person & Transition Key Worker to support patients, relatives and carers aged 18-30 accessing adult hospice services. The key worker will ensure that the needs of young people are understood, staff have the skills and knowledge to support them effectively and that transition to the adult hospice is a smooth and reassuring process. Methods The Young Person & Transition Key Worker offers support by: * Giving young people a voice (National Institute for Health and Care Excellence. [NG43], 2016); using their feedback to shape services. * Providing age appropriate services and adapting existing ones, where possible, to meet the individual needs of the young person. * Offering support to relatives and carers aged 18-30. * Promoting the service to ensure that local agencies are aware of the support available to young people and to allow collaborative work. * Working with local children's services to create a better transition pathway. Anticipated results Young people and their families will feel confident to choose hospice services. Services at the hospice will be age appropriate. Transition from children to adult services will be less daunting. Innovation Although it is understood that the needs of young people differ from the needs of the population usually supported in adult hospices, there are few roles that are specifically designed to support people 18-30 in this setting. A key worker to meet the individual needs of young people is not only unusual but also invaluable in ensuring young people have the best possible experience (Noyes, Pritchard, Rees, et al., 2014).
Finch F
BMJ Supportive and Palliative Care
2022
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/10.1136/spcare-2022-HUNC.62" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.62</a>
A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Child; child; article; human; caregiver; qualitative research; perception; palliative therapy; pediatrics; conceptual framework; health care quality; total quality management; Singapore; Only Child; health care organization; human tissue; semi structured interview; theoretical study; holistic care; grounded theory; worker; benchmarking
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of care. Our objective was to identify the key process indicators prioritized by parents in the care of seriously ill young children and develop a framework to guide assessment of quality of care. Method(s): This qualitative study followed Charmaz's Constructivist Grounded Theory. In-depth semi-structured interviews were conducted with parents of young children with serious illness in Singapore. Participants were sampled across various healthcare settings, children's ages, and illness categories. Theoretical sampling and constant comparative analysis were used to generate initial, focused, and theoretical codes, which informed construction of a conceptual framework. Result(s): 31 parents participated from July 2021 to February 2022. Initial and focused coding generated 64 quality of care indicators describing key care practices, interactions, and procedures. Indicators were categorized under four themes: (1) efficient healthcare structures and standards, (2) professional qualities of healthcare workers, 3. supporting parent-caregivers, and 4. collaborative and holistic care. Theoretical coding led to the development of the "PaRental perspectives on qualIty of care for Children with sErious iLlnESSes (PRICELESS)" framework which summarizes elements contributing to the parental perception of quality of care. Discussion(s): The identified process indicators will facilitate the development of standardised parent-reported measures for assessing service quality and benchmarking among providers. The framework provides overall guidance for conceiving quality improvement initiatives.Copyright 2023 Ang, Chow, Chong, Tan, Amin, Buang and Finkelstein.
Ang FJL; Chow CCT; Chong PH; Tan TSZ; Amin Z; Buang SNH; Finkelstein EA
Frontiers in Pediatrics
2023
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/10.3389/fped.2023.1167757" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1167757</a>