Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review
Child; child; palliative care; male; life-limiting conditions; Only Child; qualitative research; parents; paediatric palliative care; hospice and palliative nursing; fathers; family-centred care
AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review and metasynthesis. METHODS: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research. DATA SOURCES: A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options. RESULTS: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'. CONCLUSION: Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences. IMPACT: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. REPORTING METHOD: Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework. PATIENT OR PUBLIC CONTRIBUTION: No patient or Public Contribution.
Sjuls M; Ludvigsen MS; Robstad N; Fegran L
Journal of Advanced Nursing
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/10.1111/jan.15884" target="_blank" rel="noreferrer noopener">10.1111/jan.15884</a>
Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study
Bereaved Parents; Family-Centred Care; Paediatric; Palliative Care; Patient-Centred Care
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. MATERIALS AND METHODS: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. RESULTS: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. CONCLUSION: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.
Chong L; Khalid F; Abdullah A
Indian Journal of 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/10.25259/ijpc_50_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_50_2021</a>
Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit
Bereavement; End-of-life care; Family-centred care; Grief; Long-term outcomes; Qualitative
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. RESEARCH DESIGN: Qualitative description with content analysis. SETTING: Interviews with eight parents of eight children who died in the paediatric intensive care unit 7-11 years prior. MAIN OUTCOME MEASURES: Descriptive categories of parents' perceptions of end-of-life needs. FINDINGS: Parents identified four shifting and intersecting categories of needs: To be together, To make sense of the child's evolving clinical care, To manage institutional, situational, and structural factors, and To navigate an array of emotions in a sterile context. Being closely connected with the child was highly important, but often intersected with other domains, requiring nurses' support. Parents' memories demonstrated persistent uncertainty about their child's end-of-life care that influenced their long-term grief. CONCLUSIONS: Intersections between parent-identified care needs suggest potential mechanisms to strengthen nurses' care for dying children. Equipped with the knowledge that the parent-child bond often shapes parents' priorities; nurses should aim to facilitate connections amidst paediatric intensive care unit processes. Ongoing uncertainty in parents' adaptation to loss suggests that attention to instances when needs intersect can have a lasting impact on parents' grief.
Broden EG; Werner-Lin A; Curley MAQ; Hinds Rnps
Intensive and Critical Care Nursing
2022
<a href="http://doi.org/10.1016/j.iccn.2022.103216" target="_blank" rel="noreferrer noopener">10.1016/j.iccn.2022.103216</a>
Understanding Young People and Their Care Providers' Perceptions and Experiences of Integrated Care Within a Tertiary Paediatric Hospital Setting, Using Interpretive Phenomenological Analysis
paediatrics; healthcare providers; family-centred care; integrated care; patient experience; person-centred care; Person-Driven Care Special Collection.
INTRODUCTION: Benefits of integrated care include improved health outcomes and more satisfaction with experiences of care for consumers. For children and young people with chronic and complex health conditions, their care may be fragmented due to the multitude of healthcare providers involved. This paper describes the experiences of integrated care in a paediatric tertiary hospital. THEORY AND METHODS: Using an Interpretive Phenomenological Analysis approach, semi-structured interviews were conducted with children and young people, their parents and healthcare providers to explore stakeholders' integrated care experiences. RESULTS: Nineteen interviews were completed (6 children and young people, 7 parents and 6 healthcare providers) and transcribed verbatim. Two recurrent themes were applicable across the three cohorts: 'agency and empowerment' and 'impact of organisational systems, supports and structures'. DISCUSSION AND CONCLUSION: Stakeholders' experiences of integrated care highlighted the need to examine the discrepancies between healthcare strategies, policies and service delivery within a complex, and often inflexible organisational structure. Power imbalance and family agency (including directly with children and young people) needs to be addressed to support the implementation of integrated care.
Johnson H; Simons M; Newcomb D; Borkoles E
International Journal of Integrated Care
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/10.5334/ijic.5545" target="_blank" rel="noreferrer noopener">10.5334/ijic.5545</a>
Improving mealtimes for paediatric intensive care children and families: A quality improvement initiative
burn out; family-centred care; meal service; post-intensive care syndrome; quality improvement; rehabilitation
INTRODUCTION: Many critically ill children can be fed orally at some point during their paediatric intensive care (PICU) stay, but reduced appetite and other factors may impact their intake. At home, oral feeding is usually delivered by parents, so involving parents more actively during mealtimes in the PICU may contribute to improved patient/family satisfaction. We aimed to assess the impact of a new "room service" initiative involving parents on mealtime quality and on both family and health care professional (HCP) satisfaction. METHODS: A prospective, single-centre, before-and-after intervention study was designed as part of a PICU quality-of-care improvement programme in 2013 to 2016. Two questionnaires assessing oral nutrition practices and family/HCP overall satisfaction were disseminated among the parents of critically ill children capable of oral feeding during their PICU admission and among the whole PICU HCP team (nurses, nurse assistants, and medical doctors). Categorical variables were compared using the chi-square test, and Likert scales were compared between groups with the Mann-Whitney-Wilcoxon test. RESULTS: the pre-intervention surveys were completed by 97 of 130 (75%) HCPs and 52 families and the post-intervention surveys by 74 of 130 (57%) HCPs and 54 families. After the intervention, a marked improvement was observed in the overall quality of meal service rating by both HCPs and families (medians and IQR: 5 (5-7) to 7 (7, 8) and 6 (6-8) to 8 (7-9), respectively; P < .01) and also in parents' involvement; in children's, families', and HCP satisfaction; in meal-dedicated facilities and equipment; and in perception that oral nutrition is an important aspect of PICU care. CONCLUSIONS: Implementation of an improved "room service" initiative in the PICU was feasible and improved the perceived quality of care and satisfaction around oral feeding. This family-centred care initiative can be integrated in an overall quality improvement strategy.
De Monte M; Marty Petit EML; Baudin F; Zamor J; Ford-Chessel C; Tume LN; Bordet F; Valla FV
Critical Care Nurse
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/10.1111/nicc.12567" target="_blank" rel="noreferrer noopener">10.1111/nicc.12567</a>
Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences
Children's hospice; Family-centred care; Neonatal; Palliative care; Referral
Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.
Mendizabal-Espinosa R M; Price J E
Journal of Neonatal Nursing
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/10.1016/j.jnn.2020.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2020.08.005</a>
Paediatric Palliative Care And Intellectual Disability-a Unique Context
Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. CONCLUSION: A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.
Duc J K; Herbert A; Heussler H S
Journal Of Applied Research In Intellectual Disabilities
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="https://doi.org/10.1111/jar.12389" target="_blank" rel="noreferrer">10.1111/jar.12389</a>