Building community through song: The therapeutic hospice choir
singing; hospice; Rehabilitation; impact; caregivers; members; family support; music; music therapy
Music enables us not only to reflect upon the world in which we live but also to become active agents in creating and shaping it and ourselves. The Treehouse Choir is an innovative, therapeutic programme open to all adult service users and staff at one of the East Anglia's Children's Hospices. The target group of the choir membership focuses primarily on the mothers of children receiving care at the hospice and bereaved mothers. The choir addresses the need for psychosocial support for families as they face the challenges of caring for a child with life-limiting and complex health conditions, as well as families mourning the loss of a child. This article analyzes data collected from questionnaires and interviews referring to the emotional, psychological and social benefits of participation in the choir. It examines how singing in the choir serves as a means through which individuals form a community built on shared life experiences, bridging boundaries between service provider and service user, creating a means of self-expression, and breaking down barriers to enable new lines of communication within a non-threatening environment. It also examines the role of public performances in promoting greater awareness of the services provided by the hospice.
Gosine J; Travasso R
British Journal of Music Therapy
2018
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/10.1177/1359457518759960" target="_blank" rel="noreferrer noopener">10.1177/1359457518759960</a>
Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy
Care coordination;Family support;Family centered care;Spinal muscular atrophy
STUDY PURPOSE: The purpose of this qualitative study was to understand, from the parent perspective, the experience of the family whose child has Type 1 spinal muscular atrophy (Type 1 SMA), in the emergency center, hospital, and clinical care settings to identify opportunities for improved family-centered care (FCC). DESIGN AND METHODS: This study used a qualitative descriptive design with individual or small group interviews guided by a semi-structured questionnaire. Reviewers used framework analysis to identify gaps in the provision of FCC and opportunities for improvement with respect to services health professionals may provide families of children with Type 1 SMA. RESULTS: Nineteen families with 22 children with Type 1 SMA participated. Results are organized according to eight basic tenets of FCC. Family-to-family interactions strongly impacted participants' decision-making and perceived level of support. Participants valued strong family/provider partnerships, feeling heard and respected by their providers, and receiving complete education regarding disease trajectory. CONCLUSIONS: Our analyses revealed both successful application of FCC and gaps in care where FCC could have been used to benefit families who have children with Type 1 SMA. As a pediatric chronic illness affects the whole family, FCC is important in maintaining the providers' focus on the family during the child's care. PRACTICE IMPLICATIONS: There are opportunities for nursing, social work, care managers and others to engage as care coordinators to explain the family's goals and values to the medical team. Care coordinators help ensure understanding between families and providers, empowering the family to articulate their hopes and concerns.
Murrell DV;Crawford CA;Jackson CT;Lotze TE;Wiemann CM
Journal of Pediatric Nursing
2018
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/10.1016/j.pedn.2018.09.007" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.09.007</a>
Psychosocial factors related with caregiver burden among families of children with chronic conditions
Family support; Caregiver burden; affiliations.; Bioseguridad] of the Hospital Infantil de Mexico Federico Gomez National; Ethics and Biosafety Commission [Comisiones de Investigacion Etica y; Family caregivers; Family functioning; have given their approval for the article to be published.Springer Nature remains; informed consent form.The authors declare that they have no competing interests.; Institute of Health. All participants signed an informed consent form.Consent to; neutral with regard to jurisdictional claims in published maps and institutional; Pediatric chronic diseases; Psychosocial factors; publish this study has been provided and all participants have signed an; Social support networks; Sociodemographic variables; Well-being
Background: The impact of looking after children who live with complex chronic conditions is a growing public health issue. However, it is unclear whether sociodemographic and psychosocial variables can be used to predict the burden on the caregiver and how the profiles of families of children with chronic diseases are defined and structured. The objective of this study was to identify multivariate sociodemographic and psychosocial variables as well as sociocultural and familial factors to analyze the caregiver burden of family caregivers of children with chronic diseases. Methods: A cross-sectional study was conducted involving 416 family caregivers of children with chronic diseases at the National Institute of Health in Mexico City. The participants responded to a questionnaire on sociodemographic variables and a battery of 7 instruments that examined caregiver burden, family support, parental stress, anxiety, support networks, family functioning, historic-psycho-socio-cultural premises and the World Health Organization Well-Being Index. Results: A multivariate analysis using hierarchical multiple regression models showed that the variables included in the psychosocial and sociodemographic profile as a whole explained 40% of the variance in caregiver burden, taking sociocultural historical premises, stressors and anxiety into account as positive individual predictors. Negative individual predictors for caregiver burden included upper secondary education, social support networks, family support, family functioning and well-being. The sociodemographic profiles of family caregivers were as follows: female (81.7%); mean age, 31.7 years (standard deviation [SD], 8 years); married (79.3%); nuclear family (60%); basic education (62.7%); unpaid work (66.3%); and a daily household income of approximately 4 USD (61.1%). Conclusions: The caregiver burden of family caregivers of children with chronic diseases is defined and structured based on personal, family, and sociocultural factors. These features provide evidence to conduct research and implement intervention strategies with regard to families facing adversity, risk and vulnerability during a child's disease.
Toledano-Toledano F; Dominguez-Guedea M T
BioPsychoSocial Medicine
2019
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/10.1186/s13030-019-0147-2" target="_blank" rel="noreferrer noopener">10.1186/s13030-019-0147-2</a>
Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)
Bereavement; Cause of Death; Child Pediatricians; Child Welfare; Childhood; Coping; Death; Emergency Service; England; Evaluation; Family; Family Support; Infancy; Parents; Police Home Visits; Psychosocial Factors; Sudden
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, United Kingdom (UK) shows how a number of key service outcomes can be measured and achieved through a raft of actions which are commensurate with and exceed the service level recommended by the UK Government. Annual reports covering the work of the Greater Manchester SUDC team are compiled from audit forms completed by the attending SUDC pediatrician for each case. Data from these reports from April 1, 2015 to March 31, 2020 were analyzed. Most cases happened out of normal working hours, predominantly on Sundays. This supports the need for a 24-hour, 7 days per week SUDC service to enable early investigation and timely support for families. The review demonstrated that the Greater Manchester model is able to deliver this in a rapid response with early attendance in emergency departments and early home visits; effective joint agency working with police, children's social services, and other agencies; and provision of support to families. The proposed instigation of a key worker role in the SUDC team is a welcome development. This is central to ameliorating the experience for parents by providing bereavement support separate from the investigative role of the SUDC team. Research is needed into the role of the key worker, potentially as a dedicated bereavement nurse, and understanding of families' experiences to ensure that support is optimal.
Quinn S; Dierckx E; Long T; Rowland AG
Comprehensive Child & Adolescent Nursing
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/10.1080/24694193.2022.2047828" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2047828</a>
"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ
Children
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/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</a>
Sharing care at the End of life for adolescent patients with neuro-disability: A case series
child; Adolescent; adult; female; hospital admission; human; male; palliative therapy; patient care; terminal care; young adult; clinical article; hospital discharge; groups by age; adolescent; deterioration; conference abstract; learning; adulthood; case study; neurodisability; bereavement support; community health nursing; family support; health hazard
Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to adult services; for others however, reaching adulthood coincides with a significant deterioration in their health. Identifying the best team to support the patient in this situation can be controversial. Community and hospital adult palliative care teams may have an important role to play in supporting these patients, yet clinicians may lack experience working with this age group or managing the symptoms associated with paediatric neurodisability. We present reflections from a series of 6 young adults who received shared-care from adult and paediatric palliative teams and raise discussion about the strengths and learning needs of the different teams involved. Intervention Over a period of 2 years, patients who were between the age of 15 and 19 years and experiencing a significant deterioration in their health were referred to the children's palliative care team for the North East North Cumbria region. Where appropriate, the children's team identified a local adult palliative care team and established a model of shared-care with this team. Findings Across the region 3 adult hospital palliative liaison teams and 4 adult community palliative care teams were involved in shared end of life care. Cross-team debriefs identified benefits including * Improved continuity of care * Access to out of hours support * Avoiding hospital admission/Safe discharge planning * Confidence with medication for symptom management * Access to local family support and bereavement services * Building relationships for future joint working * Support for adult and children's community nursing teams Conclusion Sharing end of life care between adult and paediatric palliative care services can improve the experience of young adults and their families.
Elverson J; Aspey H; Bond E; Mackerness C; Hoskins R; Shiell A
BMJ Supportive and Palliative Care
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/10.1136/spcare-2023-PCC.196" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.196</a>
Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
Infant, Newborn; terminal care; human; palliative therapy; patient care; newborn care; newborn death; pain; philosophy; review; personal experience; distress syndrome; emotionality; parental behavior; health care personnel; family relation; family support; doctor patient relationship; compassionate care; intersectoral collaboration; parent counseling; psychological care
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care.
Wyatt J; Hain R
Children
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/10.3390/children9030344" target="_blank" rel="noreferrer noopener">10.3390/children9030344</a>
Psychosocial well-being of siblings of pediatric patients in palliative home care
Home Care Services; Pediatric palliative care; quality of life; home care; siblings; family support
Dinkelbach L; Kohler M; Galushko M; Pieper L; Kuhlen M; Danneberg M; Dechert O; Trocan L; JanBen G
J Pain Symptom Manage
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/10.1016/j.jpainsymman.2023.08.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.08.022</a>
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Rapoport A; Nicholas DB; Zulla RT
BMC Palliative Care
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/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>