Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention
decision making; end-of-life; family caregiver; intervention; intervention. She receives a small royalty.; palliative care needs; pediatric advanced care planning; rare disease
OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.
Lyon ME; Thompkins JD; Fratantoni K; Fraser JL; Schellinger SE; Briggs L; Friebert S; Aoun S; Cheng YI; Wang J
BMJ Supportive Palliative Care
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/10.1136/bmjspcare-2019-001766" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001766</a>
Children's unmet palliative care needs: a scoping review of parents' perspectives
advance care planning; paediatric palliative care; review; hospice care; parental experience; service evaluation
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs. AIM: To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. ELIGIBILITY CRITERIA: Inclusion criteria: papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance. CHARTING METHODS: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. SOURCES OF EVIDENCE: The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people. RESULTS: Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills. CONCLUSIONS: The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
Constantinou G; Garcia R; Cook E; Randhawa G
BMJ Supportive Palliative Care
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/10.1136/bmjspcare-2018-001705" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001705</a>
Non-pharmacological interventions for management of fatigue among children with cancer: systematic review of existing practices and their effectiveness
Cancer; Children; Complementary Therapy; Fatigue; Non-pharmacological
OBJECTIVES: Fatigue is common among children living with cancer, particularly in advance stages. Little is known about the effectiveness of non-pharmacological approaches to manage this complex and distressing symptom among children. Thus, the present paper aim to critically examine the effectiveness and setting for non-pharmacological interventions to manage fatigue among children with cancer. METHODS: Six electronic databases were screened first in February 2013 and at second instance in March 2015. They include PsycINFO, Medline, EMBASE, CINAHL, Scopus and Cochrane library. All databases were systematically searched for literature on fatigue and cancer, limited to children (as age group) and English language. RESULTS: 1498 articles were identified, of which six were reviewed. Three types of interventions for managing fatigue were identified including (1) complementary and alternative medicine (healing touch/massage therapy), (2) exercise-based interventions and (3) nursing-based interventions. Most interventions were delivered during active treatment and in hospital settings where parents were involved to optimise participation. Despite fatigue scores being lower among intervention groups, no study findings were observed as being statistically significant. CONCLUSION: Fatigue is common among children treated for and living with cancer. The most appropriate setting to deliver non-pharmacological interventions to manage fatigue appears to be in hospital. However, in absence of any strong evidence, professionals need to be cautious about existing non-pharmacological interventions. Future research must adopt more rigorous research designs that are adequately powered using validated measures to identify potential benefits. In addition, researchers may wish to test psychosocial interventions shown to be of benefit in adults.
Bhardwaj T; Koffman J
Bmj Supportive Palliative Care
2017
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/bmjspcare-2016-001132" target="_blank" rel="noreferrer">10.1136/bmjspcare-2016-001132</a>
GPs and paediatric oncology palliative care: a Q methodological study
Bereavement; Cancer; General Practitioner; Home Care; Paediatrics; Terminal Care
OBJECTIVE: This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. METHODS: Using data obtained from the analysis of semistructured interviews with GPs who had cared for a child receiving palliative care at home and bereaved parents, 50 statements were identified as representative of the analysis findings. 32 GPs with a non-palliative child with cancer on their caseload were asked to rank the statements according to their level of agreement/disagreement on a grid. They were then asked to reflect and comment on the statements they most and least agreed with. The data were analysed using a dedicated statistical software package for Q analysis PQMethod V.2.20 (Schmolck 2012). A centroid factor analysis was undertaken initially with 7 factors then repeated for factors 1-6. Varimax and manual flagging was then completed. RESULTS: 4 shared viewpoints were identified denoting different GP roles: the GP, the compassionate practitioner, the team player practitioner and the pragmatic practitioner. In addition consensus (time pressures, knowledge deficits, emotional toll) and disagreement (psychological support, role, experiential learning, prior relationships) between the viewpoints were identified and examined. CONCLUSIONS: Q methodology, used for the first time in this arena, identified 4 novel and distinct viewpoints reflecting a diverse range of GP perspectives. Appropriately timed and targeted GP education, training, support, in conjunction with collaborative multiprofessional working, have the potential to inform their role and practice across specialities.
Neilson S; Gibson F; Jeffares S; Greenfield SM
Bmj Supportive Palliative Care
2017
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/bmjspcare-2015-000852" target="_blank" rel="noreferrer">10.1136/bmjspcare-2015-000852</a>