Flourishing, religion, and burnout among caregivers working in pediatric palliative care
child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Oberholzer AE; Doolittle BR
International Journal of Psychiatry in Medicine
2024
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/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</a>
The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Nogueira AJ; Ribeiro MT
Clinics and Practice
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Miquel P; Clemente I; Ciccorossi M
BMC Palliative Care
2024
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<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</a>
The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
2024
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<a href="http://doi.org/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
Culturally and linguistically diverse men's experiences of support following perinatal death: A qualitative study
Men; Descriptive Statistics; Human; Thematic Analysis; Male; Qualitative Studies; Australia; Perinatal Death; Bereavement; Comparative Studies; Psychosocial Factors; Support, Psychosocial; Communities; Coping; Cultural Diversity; Family Centered Care; Health Personnel; Leaders; Life Experiences; Linguistics; Public Policy; Self-Advocacy; Semi-Structured Interview; Stigma
Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families. Background: Many groups of culturally and linguistically diverse families in Australia are at higher risk of experiencing perinatal death. Culturally sensitive bereavement services are essential; however, there has been no previous research specifically examining culturally and linguistically diverse men's experiences of support following perinatal death. Design: Individual semi-structured interviews were completed with healthcare providers, community leaders and culturally and linguistically diverse men who had experienced a perinatal death in Australia (n = 16). Data were analysed using Thematic Analysis and COREQ guidelines were followed. Results: Men's need for support following perinatal death was associated with stigma, and shaped by culturally-relevant religion and ritual, and connection to community and family. Significant barriers to men seeking and gaining support included challenges with self-advocacy and navigating the woman-centred nature of perinatal care in Australia. Conclusions: Culturally and linguistically diverse men's specific needs should be included in the development of policy and practice surrounding perinatal death. While perinatal bereavement care guidelines acknowledge the importance of culturally informed care following perinatal death, there remains a lack of culturally specific supports available, particularly for culturally and linguistically diverse men. Relevance to clinical practice: Specific recommendations from this research include increasing community liaison officers or cultural consultants in hospitals and support organisations; providing culturally and linguistically diverse support groups; adopting family-centred and father-inclusive language in all perinatal death support services and ensuring clear communication and targeted assistance for culturally and linguistically diverse men to self-advocate for their baby and access to support. Patient or public contribution: This study came out of consultation with community members and member checking of results was conducted to ensure adequate representation of participants' views.
Pearson T; Obst K; Due Cl
Journal of Clinical 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/jocn.16465%5C">10.1111/jocn.16465\</a>"
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Female; Attitude to Death; Bereavement; Grief; Adult; Altruism; Mothers; Phenomenological Research; Human; Life Experiences; Evaluation; Northern Ireland; Thematic Analysis; Coping; Perinatal Death; Funding Source; Milk Banks; Milk, Human; Maternal Attitudes; Semi-Structured Interview; Psychosocial Factors; Maternal Role; Milk Ejection; Autonomy; Milk Expression
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
Ward G; Adair P; Doherty N; McCormack D
Maternal & Child Nutrition
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/mcn.13473" target="_blank" rel="noreferrer noopener">10.1111/mcn.13473</a>
Coping with cystic fibrosis: An analysis from the sibling's point of view
chronic illness; coping; cystic fibrosis; grounded theory; psychological adjustment; siblings
Abstract Background Cystic fibrosis (CF) is a chronic, life-threatening condition that results in life-long morbidity and premature mortality. CF has a significant impact on healthy siblings' adaptation and well-being. Siblings of patients with a chronic disease may experience psychological difficulties, such as anxiety, depression symptoms and troubles in adaptation. This study aimed to explore the participants' experiences of growing up with a CF patient diagnosed at a paediatric age and their adaptation strategies. Methods We enrolled eight CF siblings (adolescents and young adults) in a 6-month focus group sessions programme. Each session had two phases (psychoeducational and experiential). Transcripts were analysed and grouped through grounded theory analysis to elaborate on data-driven theory. Results We identified 14 subthemes by which the raw data could be organized. All the subthemes were gathered together according to the axial coding process into six themes (illness, changes, communication, avoidance, normalization, and protection and care). We then grouped the six themes into two main themes (?Growing up with a CF brother or sister? and ?Finding the right distance?) and conceptualized the grounded theory ?Keeping the right distance?. The participants described the evolving process of maintaining a balance between the illness of their brother or sister, family organization and their own needs. Conclusions Knowing siblings' experiences and their common strategies to deal with the experience of having a brother or sister with a chronic health condition may be useful to ensure more tailored and specific interventions.
Milo F; Ranocchiari S; Lucidi V; Tabarini P
Child: Care, Health and Development
2021
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<a href="http://doi.org/10.1111/cch.12890" target="_blank" rel="noreferrer noopener">10.1111/cch.12890</a>
Parents' Views on What Facilitated or Complicated Their Grief after Losing A Child to Cancer
Bereavement; Grief; Pediatric oncology; Parents; Coping
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer. METHODS: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses. RESULTS: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage. SIGNIFICANCE OF RESULTS: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.
Pohlkamp L; Sveen J; Kreicbergs U; Lövgren M
Palliative and Supportive Care
2020
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<a href="http://doi.org/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener">10.1017/s1478951520001212</a>
Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
American Journal of Hospice and Palliative Medicine
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/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</a>
Learning to Hold a Paradox': A Narrative Review of How Ambiguous Loss and Disenfranchised Grief Affects Children in Care
Assessment; Care Needs; Child; Child Behavior Support; Child Care; Coping; Foster Home; Grief; Human; Infancy and Childhood; Interpersonal Relations; Personal Loss; Practice; Psychosocial Life; Purpose; Social Work; Systemic Review; Thematic Analysis
Separation and loss characterise a child's experience in care, yet losses in the care-experienced population have rarely been studied as a possible source of trauma or as events that may justify a grief response. A literature search of five databases yielded 592 publications. 41 full text articles were reviewed, 16 publications were included. Thematic analysis revealed: children in care are affected by two broad type of ambiguous loss, relationship losses and psychosocial losses; behaviours labelled as 'problem' behaviours may in fact be indicators of the manifestations of ambiguous loss and disenfranchised grief; manifold ambiguous losses associated with multiple placement moves has a cumulative effect that can generate long-term negative consequences; the effects of ambiguous loss can be offset by supporting children in care to understand that their losses may not be resolvable, to build tolerance to this ambiguity, to rebuild their identity through forging permanent connections, and to make meaning of their situations. Social workers have a key role in supporting those in care to understand, process and cope with their ambiguous losses but diminishing the burden of loss must also be a systemic focus if meaningful change is to be realised for this community of vulnerable young people.
Leitch J
Practice (09503153)
2022
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<a href="http://doi.org/10.1080/09503153.2022.2051468" target="_blank" rel="noreferrer noopener">10.1080/09503153.2022.2051468</a>
Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)
Bereavement; Cause of Death; Child Pediatricians; Child Welfare; Childhood; Coping; Death; Emergency Service; England; Evaluation; Family; Family Support; Infancy; Parents; Police Home Visits; Psychosocial Factors; Sudden
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, United Kingdom (UK) shows how a number of key service outcomes can be measured and achieved through a raft of actions which are commensurate with and exceed the service level recommended by the UK Government. Annual reports covering the work of the Greater Manchester SUDC team are compiled from audit forms completed by the attending SUDC pediatrician for each case. Data from these reports from April 1, 2015 to March 31, 2020 were analyzed. Most cases happened out of normal working hours, predominantly on Sundays. This supports the need for a 24-hour, 7 days per week SUDC service to enable early investigation and timely support for families. The review demonstrated that the Greater Manchester model is able to deliver this in a rapid response with early attendance in emergency departments and early home visits; effective joint agency working with police, children's social services, and other agencies; and provision of support to families. The proposed instigation of a key worker role in the SUDC team is a welcome development. This is central to ameliorating the experience for parents by providing bereavement support separate from the investigative role of the SUDC team. Research is needed into the role of the key worker, potentially as a dedicated bereavement nurse, and understanding of families' experiences to ensure that support is optimal.
Quinn S; Dierckx E; Long T; Rowland AG
Comprehensive Child & Adolescent Nursing
2022
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<a href="http://doi.org/10.1080/24694193.2022.2047828" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2047828</a>
Palliative and end of life care for a child: understanding parents' coping strategies
child; coping; end of life; parent
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Darlington AS; Randall D; Leppard L; Koh M
Acta Paediatrica
2020
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<a href="http://doi.org/10.1111/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</a>
Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing
Bereavement; Coping; Death and Dying; Infant; Nursing; Qualitative Study; Women’s Health
AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have higher rates of mental distress, loneliness and isolation. While some learn to cope, others remain consumed by grief, unable to function, with persistent affective, cognitive, and physical symptoms. DESIGN: Qualitative design guided by Story Theory. METHODS: In-depth, semi-structured interviews were conducted with mothers 13 to 36 months after the death of their infant. Looking at the present, past, and future mothers were asked to describe the health challenge of losing an infant and approaches used to manage the loss. The COREQ checklist was used. RESULTS: These mothers' experiences were captured in six main themes: "Painful aloneness," "Blemished identity," "Burden of being misunderstood," "Being with and being heard," "Being present and building a future," and "Finding meaning in the tragedy." In sharing their stories, mothers identified positive and negative encounters with healthcare professionals following the death of their infant. CONCLUSION: After losing an infant, mothers experience an array of challenges as they move forward. They describe their approaches used to manage the loss. This included a need to be heard, feel supported, and find meaning in the loss as they try to build a new future. Their stories express a need for health care encounters to be healing, allowing mothers to feel cared for and supported on their unique journeys toward a new sense of wellbeing. RELEVANCE TO CLINICAL PRACTICE: In sharing their stories what matters most to these mothers having lost an infant emerged. The study findings can be used to guide nursing practice, incorporated into healthcare providers bereavement training, increase knowledge and build effective communication skills.
Hawthorne DM; Joyner R; Gaucher E; Liehr P
Journal of Clinical Nursing
2020
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<a href="http://doi.org/10.1111/jocn.15542" target="_blank" rel="noreferrer noopener">10.1111/jocn.15542</a>
Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Weaver MS; Hinds PS; Kellas JK; Hecht ML
Journal of Palliative Medicine
2021
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<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Adaptation; Attitude to Death; Bereavement; Childhood Neoplasms – Mortality; Complicated Grief; Coping; Female; Grief; Interviews; Mothers – Psychosocial Factors; Phenomenological Research; Psychological; Qualitative Studies; Self Concept; Social Environment
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish NJ; Bailey S
Omega
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/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study
Challenges; child; Coping; life-limiting condition; Need; Neurology; Paediatric palliative care
OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. MATERIALS AND METHODS: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. RESULTS: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. CONCLUSION: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
Taib F; Beng KT; Chan LC
Indian Journal of Palliative Care
2021
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<a href="http://doi.org/10.25259/ijpc_3_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_3_21</a>
The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Haylett WJ; Scott Tilley D
Omega: Journal of Death & Dying
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/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Female; Adaptation; Psychological; Attitude to Death; Bereavement; Self Concept; Social Environment; Interviews; Human; Phenomenological Research; Qualitative Studies; Coping; Grief; Complicated Grief; Childhood Neoplasms – Mortality; Mothers – Psychosocial Factors
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish N J; Bailey S
Omega: Journal of Death & Dying
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/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
Analysis of how nurses cope facing the death of a paediatric patient
Afrontamiento; Coping; Death; Enfermera; Muerte; Nurse; Paciente; Paediatrics; Patient; Pediatría
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient. METHODOLOGY: an observational, descriptive and cross-sectional study, carried out from January to June 2018 with nurses from the palliative care area, intensive care unit, neonatology and oncohaematology area of a tertiary paediatric hospital in Barcelona city. An ad hoc questionnaire was applied, divided into three parts: socio-demographic data, the Bugen scale of coping with death and two open questions. RESULTS: 31.37% of the respondents faced the process of death of the paediatric patient adequately, while 33.33% did not cope well. The best coping was in paediatric palliative care, followed by paediatric oncohaematology, neonatology and, finally, the intensive care unit. In addition, the variables related to this coping are the work shift, the death of a loved one in less than 3 years and previous training. On the other hand, the age of the respondents, experience in the unit and having children are not related to coping. Moreover, the professionals surveyed demand more training to improve their coping in this area, as well as interdisciplinary sessions to discuss cases of deceased patients.
Lledó-Morera À; Bosch-Alcaraz A
Enfermeria Intensiva
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.enfi.2020.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.enfi.2020.03.004</a>
Palliative and end of life care for a child: understanding parents' coping strategies
child; coping; end of life; parent
AIM: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. METHODS: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children's hospice. Analysis focused on coping strategies, and mapping these onto the framework. RESULTS: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. CONCLUSION: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Darlington A S; Randall D; Leppard L; Koh M
Acta Paediatrica
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/apa.15429" target="_blank" rel="noreferrer noopener">10.1111/apa.15429</a>
Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Quinn M; Weiss A B; Crist J D; Fortney C A
Advances in Neonatal 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/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000707</a>
Mothers of angels: (re)living the death of the child as a coping strategy
Adult; Attitude to Death; Child; Coping; Data Analysis Software; Death -- In Infancy and Childhood; Descriptive Research; Exploratory Research; Focus Groups; Hardiness; Human; Mother-Child Relations; Mothers -- Psychosocial Factors; Qualitative Studies; Thematic Analysis
Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together mothers who lost their children and share their experiences to spontaneously help other women in the process of mourning. Data collection took place from May to August 2017, through a focus group. The speeches were organized by the Iramuteq® software and analyzed according to Creswell. Results: Age ranged from 28 to 40 years old, and most participants were married and catholic. The categories express the need to strengthen bonds and to create ways in which women can express themselves; the importance of the social network to accommodate mourning; the relevance of ethical and humanized care; and group identity as an element to promote resilience. Conclusion and implications for practice: Describing the potentialities and weaknesses in the process of loss and grief enables a qualifying and humanizing care, overcoming care gaps, stimulating the creation of creative and dialogical spaces in maternal care. These results may guide the professional approach by considering the sociocultural context and the risk factors experienced by the mothers, by supporting the development of resilient skills and enabling a humanized and individualized care. Objetivo: Describir las experiencias vivenciadas por las madres frente a la muerte de sus hijos. Método: Investigación descriptiva, exploratoria y cualitativa realizada en Guarapuava-PR, con seis participantes del grupo "Marías" que reúne a madres que perdieron a sus hijos y comparten sus vivencias además de ayudar a otras mujeres espontáneamente en el proceso de duelo. Los datos se recolectaron entre mayo y agosto de 2017, por medio de un grupo focal. Las conversaciones se organizaron por medio del software Iramuteq® y se analizaron según Creswell. Resultados: La edad varió entre 28 y 40 años, y la mayoría de las participantes estaban casadas y eran católicas. Las categorías expresan la necesidad de fortalecer vínculos y de crear medios con los que las mujeres puedan expresarse; la importancia de la red social para sobrellevar el duelo; la relevancia de una atención ética y humanizada y la identidad grupal como elemento promotor de la resiliencia. Conclusión e implicaciones para la práctica: Describir las potencialidades y debilidades en el proceso de pérdida y duelo permite calificar y humanizar el cuidado, superando las lagunas asistenciales y estimulando la creación de espacios creativos y de diálogo en el cuidado materno. Estos resultados pueden orientar el enfoque profesional al considerar el contexto sociocultural y los factores de riesgo que experimentan las madres, apoyando el desarrollo de habilidades resilientes y haciendo posible un cuidado humanizado e individualizado. Objetivo: Descrever as experiências vivenciadas pelas mães frente à morte do filho. Método: Pesquisa descritiva exploratória qualitativa realizada em Guarapuava-PR, junto a seis participantes do grupo "Marias" que reúne mães que perderam seus filhos e compartilham suas vivências além de ajudar outras mulheres espontaneamente no processo de luto. A coleta de dados ocorreu de maio e agosto/2017, por meio de grupo focal. As falas foram organizadas pelo software Iramuteq® e analisada segundo Creswell. Resultados: Idade variou entre 28 a 40 anos, maioria casadas e católicas. As categorias expressam a necessidade fortalecer vínculos e criar meios em que possam se expressar; importância da rede social para acolher o luto; relevância do atendimento ético e humanizado e a identidade grupal como elemento promotor da resiliência. Conclusão e implicações para a prática: Descrever as potencialidades e fragilidades no processo de perda e luto possibilita qualificar e humanizar o cuidado, com a superação de lacunas assistenciais estimulando a criação de espaços criativos e dialógicos no acolhimento materno. Estes resultados podem orientar a abordagem profissional ao considerar o contexto cultural, social e fatores de risco em que as mães vivenciam, ao apoiar o desenvolvimento de habilidades resilientes e possibilitando um cuidado humanizado e individualizado.
Gramazio Soares L; Kuchla É; de Azevedo Mazza V; Gramazio Soares L; Raimondo Ferraz M I; Padilha Mattei A
Anna Nery School Journal of Nursing / Escola Anna Nery Revista de Enfermagem
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/10.1590/2177-9465-EAN-2019-0030" target="_blank" rel="noreferrer noopener">10.1590/2177-9465-EAN-2019-0030</a>
Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
adaptation; Adaptation; Adolescent; Anthropology; Brain Neoplasms/*psychology; cancer; Child; children; coping; Cultural; enduring; experiences; Female; health; Humans; illness and disease; Infant; lived experience; Male; meta-ethnogrpahy; metasynthesis; Method: interpretive methods; Parents/*psychology; Preschool; Psychological; psychosocial aspects; Qualitative Research; qualitative. Geographic: Taiwan; quality of life; Quality of Life/*psychology; resilience; Resilience; resistance; survivorship; Young Adult
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
Beecham E; Langner R; Hargrave D; Bluebond-Langner M
Qualitative Health Research
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/10.1177/1049732318786484" target="_blank" rel="noreferrer noopener">10.1177/1049732318786484</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>
Spirituality and religious coping are related to cancer-bereaved siblings� long-term grief
bereavement; coping; Bereavement; Grief; Childhood cancer; siblings
Objective Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents� and young adults� ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief. Method This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief (�What has helped you to cope with your grief after your sibling's death?�) and one closed-ended question about siblings� long-term grief (�Do you think you have worked through your grief over your sibling's death?�). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings� long-term grief. Result The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings� experience of having worked through their grief two to nine years after the loss (p = 0.016). Significance of results Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.
Lövgren Malin; Sveen J; Steineck G; Wallin AE; Eilertsen MEB; Kreicbergs U
Palliative and Supportive Care
2017
<a href="http://doi.org/%2010.1017/S1478951517001146" target="_blank" rel="noreferrer noopener">10.1017/S1478951517001146</a>
Grief and coping of parents whose child has a constant life-threatening disability, hypoplastic left heart syndrome with reference to the Dual-Process Model
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents
Cantwell-Bartl A
Death Studies
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/10.1080/07481187.2017.1407380" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1407380</a>
Promoting Resilience in Stress Management: A Pilot Study of a Novel Resilience-Promoting Intervention for Adolescents and Young Adults With Serious Illness
cancer; coping; psychosocial outcomes; health outcomes; adolescent young adult; AYA; Diabetes; Intervention; Resilience
Objective To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer. Methods PRISM consists of two long or four short skills-based modules. English-speaking patients 12–25 years old were eligible if they had T1D for >6 months or cancer for >2 weeks. Feasibility was defined as an 80% completion rate and high satisfaction. Ongoing monitoring shaped iterative refinement of disease-specific approach. Results 12 of 15 patients with T1D (80%) completed the two-session intervention. 3 of 15 patients with cancer declined to complete the two-session version, citing prohibitive length of individual sessions. 12 (80%) completed the four-session version. Patient-reported satisfaction was high across groups. Conclusions The PRISM intervention is feasible and well-accepted by AYAs with cancer or T1D. Differences in patient populations warrant differences in approach.
2015-02
Rosenberg AR; Yi-Frazier JP; Eaton L; Wharton C; Cochrane K; Pihoker C; Baker KS; McCauley E
Journal of Pediatric Psychology
2015
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/10.1093/jpepsy/jsv004" target="_blank" rel="noreferrer">10.1093/jpepsy/jsv004</a>
Narratives And Story Telling In Coping With Grief And Bereavement
Grief; bereavement; coping; loss; Narratives; Stories; Story Telling
She waged the toughest battle of her life, but died of cancer in the middle of her thirteenth year. How does a mother cope with so tragic a loss? I told and retold the story. I talked about how we faced the chemo, the pain, and the fear together, about the fun we had, about the impact on our family, about the final days on the wish trip, about her death, about her friends, about the support of our faith community. I shared with all who would listen and, gradually, the storytelling helped me to make sense of things, to cope with the gaping hole in my world, to find a new normal for myself, to move on. My daughter stills lives--in eternity, in my memory, in the life I live as a result of having been her mom for those thirteen and a half years, and in the stories--hers, mine, ours.
2005
Bosticco C; Thompson TL
Omega
2005
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/10.2190/8tnx-leby-5ejy-b0h6" target="_blank" rel="noreferrer">10.2190/8tnx-leby-5ejy-b0h6</a>
Crisis, trauma, and challenge: a relational resilience approach for healing, transformation, and growth
Growth; Resilience; Traumatic; coping; Crisis; Healing; Transformation; Trauma
2003
Walsh F
Smith College Studies In Social Work
2003
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Journal Article
<a href="http://doi.org/10.1080/00377310309517704" target="_blank" rel="noreferrer">10.1080/00377310309517704</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
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Journal Article
<a href="http://doi.org/10.1080/0887044042000193451" target="_blank" rel="noreferrer">10.1080/0887044042000193451</a>
The use of rituals in grieving for a miscarriage or stillbirth
Grief; Death; bereavement; Therapy; mothers; coping; Stillbirth; Birth Complications; Miscarriage; Rituals
Preparation for their changing roles in family & society, as well as readying their intimate space for the arrival of an infant, totally engage expectant parents. Miscarriage or stillbirth may bring on a grief storm that strips away many tender roots & branches of new life in the community that the parents have been nurturing. Creation & participation in a grief ritual can bring the grieving parents to a healing resolution. This article describes the healing efficacy of ritual, its elements, & how a compassionate therapist can create one in collaboration with grieving clients.
2004
Brin DJ
Women & Therapy
2004
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Journal Article
<a href="http://doi.org/10.1300/j015v27n03_09" target="_blank" rel="noreferrer">10.1300/j015v27n03_09</a>
The Role of Social Support in Coping with Daily Pain among Patients with Rheumatoid Arthritis
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; social support; Chronic Pain; 80 and over; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Arthritis; social support; Social Support and Chronic Pain; coping; Pain/etiology/psychology/therapy; Rheumatoid/complications
Using a daily process methodology, the current study examined the role of social support in coping and pain severity among patients with rheumatoid arthritis (RA). Seventy-three adults with RA completed a structured record twice daily for one week on pain severity, pain coping, satisfaction with support and disappointment in support. Findings suggested that support influenced pain indirectly, by encouraging the use of specific coping strategies, as well as impacting coping effectiveness. Satisfaction with support was associated with adaptive and maladaptive coping, while disappointment was associated with maladaptive coping. Findings highlight the importance of close others in promoting adaptive coping strategies.
2004-09
Holtzman S; Newth S; DeLongis A
Journal Of Health Psychology
2004
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Journal Article
<a href="http://doi.org/10.1177/1359105304045381" target="_blank" rel="noreferrer">10.1177/1359105304045381</a>
Bereaved parents and The Compassionate Friends: affiliation and healing
Grief; Parents; bereavement; coping; Healing; parental bereavement
Examined the function of The Compassionate Friends (TCF), a self-help group for effective intervention in the severe bereavement after the death of a child, using a participant observation research method. Three decisions form the framework of the description: the decision to attend the group, the decision to affiliate, and the decision to transform oneself into a helper within the group. Results indicate that the decision to attend seems to be rooted in a variety of expectations, supported by a variety of experiences with professional interventions or with other self-help groups. Affiliation has a cathectic dimension that entails a unity with those whose lives have also been shattered, an appropriate object on which to attach the energy formerly given to the child, and a sense of family in a supportive community. Affiliation also has an experiential dimension that is an attempt to develop an existential stance in a problematic world based on solutions to concrete problems that are shared among the members. The decision to become a helper is the key to the TCF process, for it is the concept that helping others is the best way to help the self that allows the cathectic dimension to become complete in reinvestment and allows the experiential dimension to change from using the experience of others to sharing one's own experience.
1984
Klass D
Omega
1984
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Journal Article
<a href="http://doi.org/10.2190/k88l-6eag-11ql-7pfg" target="_blank" rel="noreferrer">10.2190/k88l-6eag-11ql-7pfg</a>
Uncertainty and coping in fathers of children with cancer
Fathers; coping
1996
Sterken DJ
Journal Of Pediatric Oncology Nursing
1996
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Journal Article
<a href="http://doi.org/10.1016/s1043-4542(96)90059-4" target="_blank" rel="noreferrer">10.1016/s1043-4542(96)90059-4</a>
Searching for meaning in loss: Are clinical assumptions correct?
Child; Adult; Parents; Death; Research; infant; coping; Meaning
Three assumptions guiding research and clinical intervention strategies for people coping with sudden, traumatic loss are that (a) people confronting such losses inevitably search for meaning, (b) over time most are able to find meaning and put the issues aside, and (c) finding meaning is critical for adjustment or healing. We review existing empirical research that addresses these assumptions and present evidence from a study of 124 parents coping with the death of their infant and a study of 93 adults coping with the loss of their spouse or child to a motor vehicle accident. Results of these studies indicate that (a) a significant subset of individuals do not search for meaning and yet appear relatively well-adjusted to their loss; (b) less than half of the respondents in each of these samples report finding any meaning in their loss, even more than a year after the event; and (c) those who find meaning, although better adjusted than those who search but are unable to find meaning, do not put the issue of meaning aside and move on. Rather, they continue to pursue the issue of meaning as fervently as those who search but do not find meaning. Implications for both research and clinical intervention are discussed.
2000
Davis CG; Wortman CB; Lehman DR; Silver RC
Death Studies
2000
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Journal Article
<a href="http://doi.org/10.1080/07481180050121471" target="_blank" rel="noreferrer">10.1080/07481180050121471</a>
Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit
Child; Death; bereavement; coping
2001
Meert KL; Thurston CS; Thomas R
Pediatric Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00130478-200110000-00007" target="_blank" rel="noreferrer">10.1097/00130478-200110000-00007</a>
Loss and meaning: How do people make sense of loss
Grief; Research; Psychology; bereavement; Support; coping; Meaning
People who have lost a travel one often try to make some meaning of their loss. The authors explore the ways people try to make meaning of loss, the factors that predict difficulty in making meaning, and the emotional outcomes of finding meaning. They also contrast the process of finding meaning with finding some benefit in the loss, even if meaning cannot be found. Our discussion centers on a study of 205 bereaved people who were interviewed before their loss and 1, 6, 13, and 18 months after their loss. The authors draw conclusions from this work not only for bereavement theories but also for general theories of adjustment in social and personality psychology.
2001
Davis CG; Nolen-Hoeksema S
American Behavioral Scientist
2001
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/10.1177/0002764201044005003" target="_blank" rel="noreferrer">10.1177/0002764201044005003</a>
Fathers of children with cancer: A descriptive study of their stressors and coping strategies
Fathers; coping
1994
Cayse LN
Journal Of Pediatric Oncology Nursing
1994
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/10.1177/104345429401100304" target="_blank" rel="noreferrer">10.1177/104345429401100304</a>
Spirituality, resilience, and narrative: coping with parental death
Grief; Parents; Death; Spirituality; Resilience; coping; Parental Death
1998
Angell GB; Dennis BG; Dumain LE
Families In Society
1998
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/10.1606/1044-3894.865" target="_blank" rel="noreferrer">10.1606/1044-3894.865</a>
Future directions for bereavement research
Research; bereavement; coping
Stroebe MS; Hansson RO; Stroebe W; Schut H
Handbook Of Bereavement Research: Consequences, Coping And Care.
2001
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).
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