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>
Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis
child; human; male; palliative therapy; systematic review; review; Cinahl; walking; therapy; cognition; thematic analysis; coping behavior; sibling; family structure
Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate support for them. A review of existing literature is thus needed to better understand the experiences of these siblings and to identify research gaps that may require further examination. Aim: To consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care. Design: A qualitative systematic review using a meta-synthesis approach was conducted. Data sources: Six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until October 2022. The search included qualitative and mixed-method studies that reported the perceptions and associations of siblings of patients receiving paediatric palliative care. Data were synthesised using thematic analysis. Results: Eleven studies were included. The overarching theme of the review would be 'A walking shadow: Living in the darkness shaped by the dying sibling', and three key themes and nine subthemes were identified from the included articles: (1) Changing family dynamics; (2) Impact on school and socialisation and (3) Psychological impact and coping. Conclusion: Siblings demonstrated negative psychological impacts and were affected by changing family structure and relationships. However, socialisation with society, and varied coping skills such as cognitive coping and using distraction techniques, were significant for siblings to go through this journey and even led to some positive outcomes for them.
Rajendran P; Jarasiunaite-Fedosejeva G; Isbir GG; Shorey S
Palliative Medicine
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/10.1177/02692163231217597" target="_blank" rel="noreferrer noopener">10.1177/02692163231217597</a>
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
child; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Nogueira AJ; Ribeiro MT
Annals of Medicine
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/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</a>
The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
Bereavement; article; human; death; pediatrics; clinical practice; grief; terminal care; dying; wellbeing; comfort; resident; human relation; pediatrician; bereavement; medical education; frustration; coping behavior; work environment; posthumous care; anger; bereavement support; medical student; catharsis; gesture; loneliness
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build relationships with patients and families. One memory, among many, inspired our work to bolster and reform trainee bereavement practices. On Monday, I walked into the hospital apprehensively. I was nearing the end of a month-long rotation in the medical-surgical ICU, my first experience caring for critically ill children during residency. I heard the news from my coresident: my patient had died on Sunday. Although it was not unexpected, it still hurt all the same. It was 5:50 am when I rounded the hospital corner and approached his old room. As I peeked inside, my heart sank. Just 3 days ago, this room was full of people and things and sounds;...
Rabinowitz DG; Korus RE; Eastland SL; Bloomhardt HM
Hospital 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/10.1542/hpeds.2023-007225" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2023-007225</a>
How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Parents; child; female; human; male; ethics; Hospices; emotion; clinical article; hospice; mobile phone; human experiment; nurse; human tissue; thematic analysis; conference abstract; coping behavior; theoretical study; social media; telephone interview; nursing practice; emotional intelligence; professionalism; purposive sample
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been researched, studies undertaken exclusively in children's hospices (CH) are rare. Aims Develop an understanding of how CH nurses maintain professional integrity whilst providing long-term practical, emotional, social and spiritual care to parents. Explore coping strategies used by CH nurses to manage emotional labour. Methods Participants were a purposive sample of six registered children's nurses, employed at CH for minimum of 4 years. Participants told the story of a shift, focusing on interactions with parents. Data collected (January 2019-January 2020) via audio diaries recorded on mobile phones and further explored in telephone interviews. Audio diaries securely transmitted via 'Whatsapp' (university and hospice ethics approval granted). Results Thematic analysis (Braun and Clarke 2006)1 was used to identify that participants used a range of strategies/ approaches to manage their relationship with parents; in terms of their emotions (Purposeful positioning) and interactions (Balancing personability and professionalism). In addition, participants revealed other CH specific factors which helped them cope with their role (Coping with and counterbalancing emotional labour). Discussion Findings were indicative of CH nurses' using and building Emotional Intelligence (EI). Established EI theory was combined with findings to develop: ENRiCHn (Using EI to Navigate Relationships in Children's Hospices: a framework for nurses). Although CH specific, aspects of the framework could be adapted for other areas of nursing practice where long-term nurse-parent/client relationships exist. Conclusions The findings provided an insight into how experienced CH nurses used emotional intelligence to engage emotionally with parents whilst simultaneously managing the level of involvement and maintaining a sense of separation. Features of hospice work which positively contributed to counterbalancing the emotional demands of the role were also highlighted.
Brimble MJ
BMJ Supportive and Palliative Care
2023
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<a href="http://doi.org/10.1136/spcare-2023-PCC.52" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.52</a>
Religious and cultural challenges in paediatrics palliative care: A review of literature
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Journal of Pediatric Hematology/Oncology
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/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</a>
Cultivating Gratitude in Bereaved Families: Description of the Impact of the Bereavement Workshop on Families of Deceased Patients in the Pediatric Palliative Care Program
active listening; bereavement; butterfly; child; conference abstract; coping behavior; genetic transcription; grief; group therapy; human; learning; music therapy; nonhuman; palliative therapy; perception; qualitative research; quantitative analysis; ritual; writing
Background and Aims: Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement care to parents and relatives of deceased children who have previously been cared for by health professionals. In this study, a bereavement workshop for parents is proposed as an intervention strategy, providing accompaniment to the families of deceased patients who received pediatric palliative care (PPC). Method(s): We conducted a quantitative and qualitative study in a focus group of parents of deceased children who participated in a bereavement workshop. The intervention consisted of a bereavement workshop, guided by the multidisciplinary PPC team, in which 4 activities were developed: group psychotherapy, music therapy, gratitude activity, symbolic ritual of delivery of butterfly. The gratitude activity consisted of motivating the families to express their gratitude by writing on cards with phrases that encourage reflection: during this process I am grateful for., I thank my child or family member for. . . , I thank the pediatric palliative care program for. . .; the cards were transcribed into a database constructed for this study and analyzed by 4 evaluators, thematic categories were assigned to each reflective sentence. Result(s): 60 families received the personalized letter of condolences with invitation to the workshop, 23 families attended the workshop. From the gratitude activity, families made 49 thank you cards, the following categories were highlighted: Communication, Hope, compassion, acceptance, humanization, learning, gratitude, active listening, coping strategies, regards, faith and humanization Conclusion(s): Strategies that favor adequate emotional management of the grieving process should be promoted. This study reflects the perceptions of parents attending a bereavement workshop. It highlights the gratitude, feelings and reflections of the family members during the health process and the death of the child while receiving accompaniment by a pediatric palliative care team.
Cuervo M; Devia A; Pereira L; Alvarez T; Molina K; Bolanos J; Correa I; Garcia X
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.299522" target="_blank" rel="noreferrer noopener">10.1002/pbc.299522</a>
Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
child; human; palliative therapy; controlled study; female; major clinical study; male; article; adolescent; school child; young adult; quality of life; total quality management; outcome assessment; randomized controlled trial; treatment outcome; cancer center; coping behavior; socioeconomics; Pediatric Quality of Life Inventory; stress management; cancer specific quality of life; Connor-Davidson Resilience Scale; Hope Scale; patient-reported outcome; Psychological Distress Scale; psychosocial development; environmental resilience; post hoc analysis
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Lau N; Bradford M C; Steineck A; Scott S; Bona K; Yi-Frazier J P; McCauley E; Rosenberg A R
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">10.1177/0269216319886215</a>
Pediatric palliative care-child life beyond the hospital
bereavement; ceremony; child; child parent relation; childhood; conference abstract; controlled study; coping behavior; education; emergency care; health care need; home visit; human; memory; palliative therapy; psychosocial care; respite care; sibling; skill; voice
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and skills to provide innovative care in Pediatric Palliative Care and home settings. Evaluation: Using fundamental skills of therapeutic relationship building and play-based communication, CCLS are able to assess needs and provide interventions that meet the unique needs of each child and family member throughout their continuum of care. In this setting, we have the freedom of time, often over a period of several months and even years. We may spend time with the patient/ family during respite care, home visits, holiday events and other occasions. The Child Life Assessment includes factors such as the child's growth and development, physical strengths and limitations, diagnosis, treatment, communication methods, coping skills, family systems, cultural beliefs, community support/resources and other health care, family and child variables. First and foremost our goal is to let the child be a child and have everyone understand and support the strengths of each child. This relationship specifically allows each child and family to establish goals of care unique to their child and advocate well throughout the continuum of care. CCLS can then offer support and maintain the child's developmental milestones despite their medical challenges. The CCLS can also reaffirm the child's life, life review and life closure when the time is right. Also important, CCLS can help siblings to have a voice that is respected and honored in the family and facilitate opportunities to continue this role throughout their childhood. We can also support and nurture parenting through the tough times and as developmental change occurs with both affected children and their siblings. CCLS provide psychosocial support to facilitate expression of thoughts and feelings, self-expression, legacy leaving and memory making. We involve children in discussions and decisions about their medical condition and treatment when medically appropriate, and provide tools to enhance their coping strategies. We provide bereavement opportunities for the dying child and the whole family.
Case C; Fisher J M
Pediatrics
2018
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The Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community
human; palliative therapy; pediatric patient; coping behavior; terminal care; bereavement; grief; medical specialist; health care system; bereavement support; breathing exercise; child life specialist; communication skill; cultural anthropology; family centered care; guided imagery; health care delivery; health personnel attitude; letter; medical procedures; Mexican; relaxation training; religion; scope of practice
Petkus J M
Journal of Palliative 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/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0203</a>
Parents' experiences of requests for organ and tissue donation: The value of asking
article; child; female; human; male; palliative therapy; retrospective study; qualitative research; awareness; clinical article; coping behavior; coronary care unit; fear; hospice; multicenter study; neonatal intensive care unit; organ donation; organ donor; palliative care; parents; pediatric intensive care unit; terminal care
Objective: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences. Design(s): A retrospective qualitative study. Setting(s): Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice. Patient(s): Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs. Intervention(s): None. Main Outcomes and Measures: Parents' and HCPs' views and experiences of discussions about OTD. Result(s): 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\textbackslash and parents' assumptions about health of organs (when donation is not discussed). Conclusion(s): The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised. Copyright © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.
Darlington A S; Long-Sutehall T; Randall D; Wakefield C; Robinson V; Brierley J
Archives of Disease in Childhood.
2019
<a href="http://doi.org/10.1136/archdischild-2018-316382" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-316382</a>
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
European Journal of Pediatrics.
2019
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>
Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child
economics; empathy; nursing; psychology; adult; climacterium; complication; coping behavior; critical illness; etiology; female; human; male; mental stress; parent; pediatric intensive care unit; qualitative research; social support
Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their families. In most cases this means the child's carers, their parents, most often their mothers, are required to undertake a great deal of the child's care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state's responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children's care. I use Margret Urban Walker's ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child's life and their death.
Randall DC
Comprehensive child and adolescent nursing
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/10.1080/24694193.2017.1376360" target="_blank" rel="noreferrer noopener">10.1080/24694193.2017.1376360</a>
Teamwork and conflicts in paediatric end-of-life care
conflict; Pediatrics; teamwork; Terminal Care; conflict management; Coping Behavior; editorial; emotion; health care personnel; Human; Medical Decision Making; nurse; parental attitude; physician; physiotherapist; priority journal; psychologist
2018
Verhagen AAE
Acta Paediatrica
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/10.1111/apa.14102" target="_blank" rel="noreferrer">10.1111/apa.14102</a>
Individual differences, mood, and coping with chronic pain in Rheumatoid Arthritis: a daily process analysis.
Pain; Chronic Pain; Adaptation; Psychological; Arthritis; Rheumatoid; coping; Coping Behavior; Coping Skills; Mood; Rheumatoid Arthritis
This study examines individual differences in coping and associated health outcomes as they unfold across time. Twice daily for one week, 71 individuals with Rheumatoid Arthritis reported their pain, coping efforts, and negative mood via structured daily records. The five factor model of personality (neuroticism, extraversion, openness to experience, agreeableness, conscientiousness) and disease status were also assessed. Multi-level statistical models examining within and between person variability indicated significant temporal associations from coping to pain and bi-directional associations between mood and pain within days. Furthermore, findings suggest that coping use and coping effectiveness were moderated by personality. Implications for models of coping with chronic pain, as well as clinical applications, are discussed.
2004
Newth S; DeLongis A
Psychology & Health
2004
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).
Journal Article
<a href="http://doi.org/10.1080/0887044042000193451" target="_blank" rel="noreferrer">10.1080/0887044042000193451</a>
Finding positive meaning in a stressful event and coping
Stress; Parent caregivers; Coping Behavior; Positivism; adults whose homes were damaged by fire assessed immediately after vs 1 yr later; coping & blaming others; Disasters; Emotional Trauma; finding positive meaning in traumatic event; Life Experiences; Meaningfulness
Surveyed 32 people (average age 63 yrs) whose homes were damaged or destroyed by a fire immediately after the fire and 1 yr later, to examine the prediction that finding positive meaning in that traumatic event would be associated with better coping and with less blame to others for the event. Five ways of focusing on the positive were measured in this study: finding side benefits, making social comparisons, imagining worse situations, forgetting the negative, and redefining. As expected, positive revaluators coped better and were somewhat less likely to blame others. Two alternative explanations for these relationships--amount of loss incurred and social desirability--were considered, but analyses did not lend support to these interpretations. The longitudinal analysis indicated that one's initial cognitive orientation toward an event such as a fire appears to be fairly stable: There were few changes in positive meaning or blame during the year following the fire. (26 ref) (PsycINFO Database Record (c) 2007 APA, all rights reserved)
1985
Thompson SC
Basic And Applied Social Psychology
1985
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).
Journal Article
<a href="http://doi.org/10.1207/s15324834basp0604_1" target="_blank" rel="noreferrer">10.1207/s15324834basp0604_1</a>
Exploring NICU Nurses' Affective Responses to End-of-Life Care
Affect; Newborn Intensive Care; Psychology; Verbal Communication; Adult; Aged; Anger; Coping Behavior; Female; Guilt; Human; Identity; Mental Stress; Middle Aged; Neonatal Intensive Care Unit; Neonatal Nurse; Qualitative Research; Terminal Care
BACKGROUND: The survival rate for infants born with life-threatening problems has improved greatly over the last few decades. Nevertheless, infants still die in neonatal intensive care units (NICUs) every day. Despite existing standards of care, some aspects of end-of-life care (EOLC) are still not delivered consistently. Little is known about how NICU nurses' individual experiences affect EOLC. PURPOSE: The purpose of this study was to explore, through lived and told stories, the affective, interactional, and meaning-related responses that NICU nurses have while caring for dying infants and their families. Coping strategies and changes in practice were also explored. METHODS: Thirty-six members of the National Association of Neonatal Nurses submitted written narratives about an EOLC experience during which the nurse experienced strong emotions. FINDINGS: Narrative analysis revealed many affective responses, but 3 were the most frequent: responsibility, moral distress, and identification. Coping methods included healthy and less healthy strategies, such as colleague support, informal and formal debriefing, practicing intentional gratefulness, avoidance, and compartmentalization. Changes in practice identified were universally described as professional growth through the use of reflective practice. IMPLICATIONS FOR PRACTICE & RESEARCH: Educators should discuss the range of emotions experienced by caregivers related to EOLC and healthy coping strategies and encourage the use of reflective practice as a facilitator of professional growth. Nurse leaders should promote supportive environments in NICUs and ensure debriefing opportunities for nurses who have recently cared for a dying infant. Future research should focus on formulating interventions to utilize debriefing with NICU nurses and perhaps the development of EOLC mentors.
Lewis SL
Advances In Neonatal Care : Official Journal Of The National Association Of Neonatal Nurses
2017
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<a href="http://doi.org/10.1097/ANC.0000000000000355" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000355</a>
The Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters
Family Attitude; Sibling; Sibling Attitude; Trisomy 13; Trisomy 18; Adult; Article; Brother; Coping Behavior; Female; Genetic Disorder; Grief; Human; Male; Parental Attitude; Peer Group; Priority Journal; Psychological Resilience; Qualitative Analysis; Sister; Structured Interview; Wellbeing
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative approach with in-depth semi-structured interviews to explore the experiences of 10 adult siblings of a baby diagnosed with Trisomy 13 (Patau syndrome) or Trisomy 18 (Edward syndrome). Findings illustrate that parental grief from the time of their child's diagnosis onward is also experienced by siblings. Although young adults may have conflicting feelings as a bereaved sibling, there is evidence that the experience impacts on their world views and their attitudes about prospective and expectant parenthood. The study highlights the importance of providing siblings with short-term and long-term support from the time of their brother's or their sister's diagnosis onward and provides new understanding about benefit of professional and peer support in helping young adults develop resilience and coping strategies.
Brown E; Coad J; Franklin A
American Journal Of Medical Genetics Part A
2017
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10.1002/ajmg.a.38213