Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
Pediatrics; palliative care; bereavement; end of life care; Health personnel
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. METHODS: Exploratory qualitative research using semi-structured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multi-disciplinary team thematically analyzed the data. RESULTS: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. CONCLUSION: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team.
Kochen EM; Teunissen SCCM; Boelen PA; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Academic Pediatrics
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/10.1016/j.acap.2021.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.08.015</a>
Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project
Child; Female; Humans; Male; Adult; Health Care Surveys; Parents; Middle Aged; Health Status; Family Health; quality of life; adolescent; Preschool; infant; Chronic disease; retrospective studies; caregivers
CONTEXT: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the understanding of the impact of caring for a chronically ill child. This will contribute to pediatric family care. OBJECTIVE: Our goal was to determine the health-related quality of life of parents of chronically ill children compared with parents of healthy schoolchildren. DESIGN, SETTING, AND PARTICIPANTS: A survey of 533 parents of children with chronic conditions (10 diagnosis groups, children aged 1-19 years, diagnosed >1 year ago, living at home) and 443 parents of schoolchildren was conducted between January 2006 and September 2007. Parents were approached through Emma Children's Hospital (which has a tertiary referral and a regional function) and through parent associations. The comparison group included parents of healthy schoolchildren. Health-related quality of life was assessed with the TNO-AZL Questionnaire for Adult's Health Related Quality of Life. MAIN OUTCOME MEASURE: Health-related quality of life measures gross and fine motor function, cognitive functioning, sleep, pain, social functioning, daily activities, sexuality, vitality, positive and depressive emotions, and aggressiveness. The health-related quality of life of the study group was compared with that of the comparison group, and effect sizes were estimated. The percentages of parents at risk for a low health-related quality of life were compared with the 25th percentile scores of the comparison group. RESULTS. Parents of chronically ill children had a significantly lower health-related quality of life. Subgroup analysis showed lower health-related quality of life on sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions in disease-specific groups. On average, 45% of the parents were at risk for health-related quality-of-life impairment. CONCLUSIONS: Parents of chronically ill children report a seriously lower health-related quality of life, which should receive attention and supportive care if necessary. A family-centered approach in pediatrics is recommended.
2008
Hatzmann J; Heymans HS; Ferrer-i-Carbonell A; van Praag BM; Grootenhuis MA
Pediatrics
2008
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Journal Article
<a href="http://doi.org/10.1542/peds.2008-0582" target="_blank" rel="noreferrer">10.1542/peds.2008-0582</a>
Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis
adolescent; Child; Female; Humans; Male; retrospective studies; Neoplasms; Siblings; quality of life; Adaptation; Psychological; sibling bereavement
Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied in research on the effects of chronic illness on the affected patient, but has not yet been studied in siblings. AIMS: To investigate the prevalence of self-reported psychosocial problems in siblings of pediatric cancer patients, 2 years after the onset of the illness. MEASUREMENTS: Two Dutch quality of life questionnaires, the TACQOL and the DUCATQOL are used, as well as generic non-health-related measures of emotional and behaviour problems (CBCL-YSR) and anxiety (STAI-C). PARTICIPANTS: Participants were 103 siblings aged 7-18 years old. Fifty seven Siblings participated in a prospective and 46 in a retrospective study group. RESULTS: Siblings aged 7-11 report lower overall quality of life than children in the norm group. No differences in mean scores were found on any of the other domains that were investigated. When the prevalence of problems was investigated, however, relatively more siblings compared to normative data had scores in the impaired group based on the 20th percentile norm. A relatively high number of siblings aged 7-11 reported impaired emotional (42%), social (34%) and total quality of life (47%) (DUCATQOL) and physical problems (26%) (TACQOL). Relatively many adolescent siblings (26%) reported significant internalising problems on the CBCL-YSR. CONCLUSIONS: Although acute emotional distress reactions seem to have normalised in most siblings as has been suggested in the literature, emotional distress of having a brother or sister with cancer may continue beyond diagnosis for a subgroup of children. Young siblings seem to be affected in their quality of life, whereas a subgroup of adolescent siblings experience clinically relevant internalising problems. The results support the use of quality of life measures for siblings. Predictors of long-term adaptation in siblings need to be investigated.
2004-08
Houtzager BA; Grootenhuis MA; Caron HN; Last BF
Psycho-oncology
2004
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Journal Article
<a href="http://doi.org/10.1002/pon.759" target="_blank" rel="noreferrer">10.1002/pon.759</a>
One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer
adolescent; Child; Female; Humans; Male; Neoplasms; Emotions; Siblings; Age Factors; Health Status; Child welfare; Sex Factors; Cognition Disorders; quality of life; Adaptation; Psychological; sibling bereavement
BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the illness. METHODS: Participants were 83 siblings from 56 families-46 girls and 37 boys, aged 7-18. The assessment took place 1 month to 8 weeks after the diagnosis of cancer in the ill child. The siblings' QoL was assessed with the TNO-AZL children's quality of life questionnaire (TACQOL). Coping strategies were assessed with the Cognitive Coping Strategies Scale for siblings (CCSS-s). Physical problems and eating and sleeping problems that existed before the ill child was diagnosed were determined in a structured interview with the parents. RESULTS: A substantial number of siblings reported impaired cognitive and emotional QoL compared to the reference group. School-aged siblings (7-11 years) reported more trouble with motor functioning than peers. The coping strategy 'predictive control' (maintaining positive expectations regarding the illness) positively predicted siblings' QoL. The presence of health problems before diagnosis was negatively associated with siblings' QoL. Older siblings reported more negative emotions, while girls reported lower social QoL and reliance on 'interpretative control' (trying to understand the illness) was associated with fewer positive emotions. CONCLUSIONS: During the first 2 months after the diagnosis of cancer in a brother or sister, siblings have relatively lower QoL than peers. Health problems that existed before diagnosis may be a predictor of later adjustment problems. Positive expectations about the course of the illness appear to protect siblings from distress. Information about the illness is a delicate issue that requires parental guidance.
2005-01
Houtzager BA; Grootenhuis MA; Hoekstra-Weebers JE; Last BF
Child: Care, Health And Development
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2005.00459.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2005.00459.x</a>
Aspects And Intensity Of Pediatric Palliative Case Management Provided By A Hospital-based Case Management Team
Case Management; Child; End-of-life Care; Only Child; Palliative Care; Palliative Care Team; Pediatrics; Retrospective Studies
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. RESULTS: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). SIGNIFICANCE OF RESULTS: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.
Jagt Van Kampen CT; Colenbrander DA; Bosman DK; Grootenhuis MA; Kars MC; Schouten-Van Meeteren AYN
American Journal Of Hospice And Palliative Medicine
2017
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10.1177/1049909117695068
A Prospective Study On The Characteristics And Subjects Of Pediatric Palliative Care Case Management Provided By A Hospital Based Palliative Care Team
Case Management; Hospital; Palliative Therapy; Prospective Study; Child; Clergy; Controlled Study; Human; Major Clinical Study; Nurse; Psychologist; Questionnaire; Social Worker
Background: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). Methods: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents. Results: Four hundred fifty-five contacts took place with parents of 70 patients (27MD, 43NMD). Sixty-two percent of all contacts were with the specialized nurse. The child life specialists, psychologist and social worker were also regularly consulted, the chaplain was not consulted. Ninety-five percent of all contacts took place between 8 am and 6 pm during weekdays, a limited number between 6 pm and 9 pm. Twenty-five percent of all contacts were proactively initiated by the PPCT, 25 % were initiated by parents. In these care characteristics, no differences were seen for MD and NMD patients. Psychosocial topics were addressed most frequently. MD patients consulted the PPCT more often about school and NMD patients about socio-economic issues. Conclusions: All different disciplines of the PPCT were regularly consulted, except for the chaplain. With an easy accessible team with a highly pro-active approach, availability from 8 am to 9 pm seems sufficient to accommodate patient's and parent's needs. More anticipation seems required for socio-economic topics. This insight in pediatric palliative case management can provide guidance in the development of a new PPCT. Copyright © 2016 The Author(s).
Jagt Van Kampen CT; Kars MC; Colenbrander DA; Bosman DK; Grootenhuis MA; Caron HN; Schouten-Van Meeteren AYN
Bmc 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).
10.1186/s12904-016-0166-8
Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease
2018; Case Management; Child; end-of-life care; Hospitals; Only Child; Palliative Care; palliative care team; Pediatrics; retrospective studies; Teams
Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. Methods: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. Results: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). Significance of Results: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Jagt-van Kampen CT; Colenbrander Derk A; Bosman DK; Grootenhuis MA; Kars Marijke C; Schouten-van Meeteren; Antoinette YN
American Journal Of Hospice & Palliative Medicine
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/10.1177/1049909117695068" target="_blank" rel="noreferrer">10.1177/1049909117695068</a>
Health care professionals' experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators
Bereavement; palliative care; end-of-life; Health Personnel; Terminal Care; Child Loss
CONTEXT: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into the health care professionals' (HCPs) intentions and strategies in pre-loss care during the end-of-life is still lacking. OBJECTIVES: To create a starting point for improvement of pre-loss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end-of-life. METHODS: Exploratory qualitative research using individual semi-structured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team. RESULTS: Nineteen HCPs participated. HCPs tried to ensure that (1) parents could reflect on the care received as concordant to their preferences and (2) were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While employing these strategies, HCPs faced several difficulties: uncertainty about the illness-course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues and making joint decisions with colleagues. CONCLUSIONS: HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and wellbeing during the end-of-life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence and training is needed to improve pre-loss care in pediatrics.
Kochen EM; Boelen PA; Teunissen SCCM; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.001</a>
A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
Child; loss; end of life; Only Child; palliative; bereavement; coping with grief
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. RESULTS: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. CONCLUSION: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
Kochen EM; Grootenhuis MA; Teunissen Sccm; Boelen PA; Tataranno ML; Fahner JC; de Jonge RR; Houben ML; Kars MC
Acta Paediatrica
2023
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<a href="http://doi.org/10.1111/apa.16716" target="_blank" rel="noreferrer noopener">10.1111/apa.16716</a>
Positive effects of a psycho-educational group intervention for children with a chronic disease: First results
Child; Psychotherapy; Children; Chronic disease; Intervention; Interventions; Group Intervention; Group Therapy
OBJECTIVE: To determine the effectiveness of a psycho-educational group intervention for chronically ill children. METHODS: Based on principles from cognitive behavior therapy and information from previous research about children's experiences with coping with a chronic disease we developed an intervention to be used for children with different chronic diseases. The program, called Op Koers (OK), with six sessions for different age groups, was evaluated by standardised and researcher-developed psychological measures. RESULTS: A total of 109 patients participated in the study on the effects of the psycho-educational intervention. Improvements in behavioral-emotional outcomes, social competence, information seeking, relaxation and positive thinking were found both in short and medium term. Additionally, the sessions received positive appraisals. CONCLUSIONS: The program appears to have a significant and positive impact on chronically children. Further research is needed to establish the effects of the intervention. PRACTICE IMPLICATIONS: Beneficial effects can be expected from the implementation of a psycho-educational group intervention for children with heterogeneous chronic health conditions.
2007
Last BF; Stam H; Onland-van Nieuwenhuizen AM; Grootenhuis MA
Patient Education And Counseling
2007
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Journal Article
<a href="http://doi.org/10.1016/j.pec.2006.06.017" target="_blank" rel="noreferrer">10.1016/j.pec.2006.06.017</a>
Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood
Humans; Adult; Peer Group; Netherlands; Health Status; Life Change Events; Survivors; quality of life; adolescent; Adolescent Transitions; Risk-Taking; Chronic disease; Chronic/complications/psychology/rehabilitation; Esophageal Atresia/complications/psychology/rehabilitation; Hirschsprung Disease/complications/psychology/rehabilitation; Kidney Failure; Neoplasms/complications/psychology/rehabilitation
PURPOSE: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care requires knowledge of the psychosocial history of patients grown up with a pediatric disease. METHODS: A total of 508 young adults from the general Dutch population and 650 patients, aged 18-30 years, participated: 348 survivors of childhood cancer, 93 patients with anorectal malformations, 72 patients with Hirschsprung's disease, 61 patients with oesophageal atresia, 76 patients with end-stage renal disease. They completed the Course of Life Questionnaire, which retrospectively assesses the achievement of developmental milestones (autonomy, psychosexual and social development), and risk behavior (antisocial behavior, substance use and gambling). RESULTS: The young adults grown up with a chronic or life-threatening disease proved to have achieved significantly fewer milestones, or at older age than their peers, in all course-of-life domains. The course of life of young adults grown up with esophageal atresia was not delayed compared with that of their peers, whereas that of survivors of childhood cancer and patients with end-stage renal disease was delayed most. CONCLUSIONS: Health care providers should help to minimize the harm for children who grow up with a chronic or life-threatening disease by encouraging parents to stimulate social contacts and autonomy. Attention should especially be directed at children and adolescents growing up with childhood cancer or with end-stage renal disease.
2006
Stam H; Hartman EE; Deurloo JA; Groothoff J; Grootenhuis MA
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
2006
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Journal Article
<a href="http://doi.org/10.1016/j.jadohealth.2005.03.011" target="_blank" rel="noreferrer">10.1016/j.jadohealth.2005.03.011</a>
Barriers and facilitators to the implementation of a paediatric palliative care team
health care personnel; palliative therapy; Child; Only Child; Palliative Care; Pilot Projects; human experiment; major clinical study; pilot study; expectation; concrete; child; human; female; male; pediatrics; article; awareness; patient satisfaction; tertiary health care
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. Methods: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which >=20% of participants responded with 'totally disagree/disagree' and >=80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. Results: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. Conclusion: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Verberne LM; Kars MC; Schepers SA; Schouten-Van Meeteren AYN; Grootenhuis MA; Van Delden JJM
BMC Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0274-8</a>
Aims And Tasks In Parental Caregiving For Children Receiving Palliative Care At Home: A Qualitative Study
Child Parent Relation; Family Life; Home Care; Palliative Therapy; Qualitative Research; Child; Clinical Article; Controlled Study; Human; Interview; Personal Experience; Sound; Symptom; Thematic Analysis
In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Conclusion: Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened.(Table presented.) Copyright © 2017 The Author(s)
Verberne LM; Kars MC; Schouten-Van Meeteren AYN; Bosman DK; Colenbrander DA; Grootenhuis MA; van Delden JJ
European Journal Of Pediatrics
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).
10.1007/s00431-016-2842-3
Parental experiences with a paediatric palliative care team: A qualitative study
case management; palliative therapy; Pediatrics; qualitative research; Child; Clinical Article; concrete; coordination; expectation; Female; Human; Interview; Male; thematic analysis
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective. Design: An interpretative qualitative interview study using thematic analysis was performed. Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases. Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support. Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.
Verberne LM; Schouten-van Meeteren AYN; Bosman DK; Colenbrander DA; Jagt CT; Grootenhuis MA; van Delden JJM; Kars MC
Palliative Medicine
2017
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<a href="http://doi.org/10.1177/0269216317692682" target="_blank" rel="noreferrer">10.1177/0269216317692682</a>