'A Short Time but a Lovely Little Short Time': Bereaved Parents' Experiences of Having a Child with Spinal Muscular Atrophy Type 1
Bereavement; Genetics; Neuromuscular Disease; Qualitative Research; Spinal Muscular Atrophy
AIM: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies examining the impact of having a family member with a neuromuscular disorder, and none describing parents' experiences of having a child with SMA type 1. This study explored parents' perspectives of having a child with SMA type 1, from diagnosis to bereavement, in order to inform clinical practice by identifying aspects most meaningful to parents and to aid development of support strategies. METHODS: This qualitative study undertook thematic analysis of 11 in-depth interviews with 13 bereaved parents of children with SMA type 1. RESULTS: While individuals' experiences were unique, common themes emerging from the data include: experiencing shock and anticipatory grief, processing feelings of responsibility and helplessness, experiencing multiple losses including the loss of future reproductive freedom, feeling supported, regaining a sense of control by making decisions about the child's life and death, and finding peace in the dying process. CONCLUSION: These findings highlight the importance of a multidisciplinary approach to the care of such families, including psychosocial support beginning from the time of diagnosis and continuing to bereavement. We suggest areas for further exploration, with a goal to develop family-centred and evidence-based psychosocial care guidelines to complement the current Standards of Care for Spinal Muscular Atrophy.
Higgs EJ; McClaren BJ; Sahhar MAR; Ryan MM; Forbes R
Journal Of Paediatrics And Child Health
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://onlinelibrary.wiley.com/doi/10.1111/jpc.12993">10.1111/jpc.12993</a>
'I No Longer Feel Alone': Meeting the Needs of Bereaved Grandparents Through a Children's Hospice Support Group
Bereavement; Grief; Child; Palliative care; Adult; Children; Hospice; Grandparents; Family centred care
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported grandparents in their grief following the death of a grandchild. METHODS: Grandparents attending a group were invited to complete an anonymous questionnaire. Questionnaires from eight groups, run between 2015 and 2019 were collated and interpreted to identify themes. FINDINGS: A total of 121 grandparents attended the groups; 113 returned the questionnaires (93% response). A total of three superordinate themes were identified: environment and space, being with people who understand, and the opportunity to hear the stories of others. Grandparents valued hearing the stories of others, providing an opportunity to reflect on the experience of others. CONCLUSION: Grandparents felt supported and validated by the group. Facilitated sessions increased coping and resilience of participants, enabling grandparents to support their partner, adult children and surviving grandchildren more effectively.
Tatterton M J; Lyon JA
International Journal of Palliative Nursing
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/10.12968/ijpn.2022.28.5.193" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.193</a>
‘Whose Milk Was It, Really? … It Was a Gift, a Savior, a Healer, and a Connector’: Reflections on a Collaborative Autoethnography of Breastmilk Donation after Stillbirth
Collaboration; Bereavement; Grief; Interpersonal Relations; Life Experiences; Infant Death; Perinatal Death; Lactation; Milk Banks; Milk, Human; Donor Milk; Paternal Attitudes; Ethnographic Research; Living Donors; Milk; Milk Ejection
This is the intertwined story of three unique individuals—each of us parents, researchers, givers and takers—who met and changed each other’s lives, whilst simultaneously struggling to comprehend and make meaning out of our own personal losses. After coming to terms with their inability to have another biological child, Shachar and his wife adopted a baby. Ayelet and Alison both gave birth to stillborn babies. Subsequently, Ayelet followed conventional Israeli medical guidelines dictating the drying up of her milk, whilst Alison rejected those regulations and chose to continue lactating, which eventually led to her donating her milk to Shachar’s adopted baby. Our stories are grounded in the patriarchal Israeli context that pressures bereaved individuals to ‘move on’ quickly, silencing loss and grief (Leichtentritt et al., 2016). In this reflective piece, we propose a perspective on our interconnected story of human milk donation as a counter-practice to silencing loss, by allowing shared relational grief. [...]
Timor-Shelvin S; Oreg A; Perez AS
British Journal of Social Work
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/10.1093/bjsw/bcad025" target="_blank" rel="noreferrer noopener">10.1093/bjsw/bcad025</a>
"As if Nothing Happened": Experiences of Bereaved Parents in Romania
bereavement;Grief;Romania;trauma;traumatic stress
Prior research has found high levels of distress in parents who experience the death of a child; however, Romanian parents, whose experiences are influenced by the nation's shared historical trauma, have not been studied. This mixed-methods study found very high levels of distress in a sample of 237 bereaved parents in Romania, primarily women. Specifically, 89% of respondents scored above the clinical cutoff for trauma responses, 66% did so for anxious responses, and 82% did so for depressive responses. Qualitative analyses of respondents' narratives suggest that, through complex interactions between political, social, and medical systems, the lack of care after the death of a child seems to incite additional distress in parents. These findings warrant further exploration of traumatic grief in Romania, especially in the context of historical and political trauma, and of ways in which support can be provided to grieving parents in this unique cultural milieu.
Thieleman K;Cacciatore J
Omega
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818799949" target="_blank" rel="noreferrer noopener">10.1177/0030222818799949</a>
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
death and dying; bereavement; Male; Infant Newborn; Young Adult; Humans; Adult; Female; Infant; Interviews as Topic; Infant Mortality; Adaptation Psychological; Mothers/ psychology; Ghana; perinatal death; qualitative research; infant mortality; Grief; infant loss; low-resource country; Medically Underserved Area
Meyer AC; Opoku C; Gold K J
Omega (Westport)
2018
<a href="http://doi.org/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">10.1177/0030222816629165</a>
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
child; United States; Bereavement; adult; article; human; palliative therapy; grief; young adult; sibling; quality of life; epistemology; qualitative research; language; phenomenology; caregiver; perception; genetic transcription; semi structured interview; ritual; altruism
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6months-18years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. <br/>RESULT(S): Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. <br/>CONCLUSION(S): Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
Jones MT; Albanese E; Boles JC
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/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</a>
"This is the worst that has happened to me in 86 years": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
bereavement; child; death; grandparents; pediatric palliative care
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end-of-life care and after the death of a grandchild. Design and Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Result(s): Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child. Practice Implications: These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family. Copyright © 2020 Wiley Periodicals LLC
Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Journal for Specialists in Pediatric Nursing.
2020
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<a href="http://doi.org/10.1111/jspn.12311" target="_blank" rel="noreferrer noopener">10.1111/jspn.12311</a>
"You are not alone": Connecting through a bereaved parent mentor program for parents whose child died of cancer
bereaved parents; bereavement; grief; pediatric palliative care; peer-to-peer mentorship
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer-to-peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents. METHODS: Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet-based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis. RESULTS: A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee. CONCLUSION: This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well-being of parents.
McNeil MJ; Kiefer A; Woods C; Barnett B; Berry-Carter K; Clark L; Mandrell BN; Snaman J; Kaye EC; Baker JN
Cancer Medicine
2022
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<a href="http://doi.org/10.1002/cam4.4696" target="_blank" rel="noreferrer noopener">10.1002/cam4.4696</a>
“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</a>
“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
Pediatrics; Communication; Bereavement; Education; Residency
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. Methods: A cross-sectional, mixed methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 ACGME-accredited programs representing varying sizes and geographic regions. Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet most had never formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter, 85% had never made a condolence phone call, and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.
Porter AS; Weaver MS; Snaman JM; Chen L; Zhaohua L; Baker JN; Kaye EC
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.05.019</a>
A communication strategy and brochure for relatives of patients dying in the ICU
Female; Humans; Male; Intensive Care Units; Aged; Middle Aged; Professional-Family Relations; Communication; 80 and over; bereavement; Terminally Ill/psychology; Family/psychology; ICU Decision Making; Stress Disorders; Depression/epidemiology; Pamphlets; Anxiety/epidemiology; Post-Traumatic/epidemiology/prevention & control; Visitors to Patients/psychology
BACKGROUND: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of bereavement. METHODS: Family members of 126 patients dying in 22 ICUs in France were randomly assigned to the intervention format or to the customary end-of-life conference. Participants were interviewed by telephone 90 days after the death with the use of the Impact of Event Scale (IES; scores range from 0, indicating no symptoms, to 75, indicating severe symptoms related to post-traumatic stress disorder [PTSD]) and the Hospital Anxiety and Depression Scale (HADS; subscale scores range from 0, indicating no distress, to 21, indicating maximum distress). RESULTS: Participants in the intervention group had longer conferences than those in the control group (median, 30 minutes [interquartile range, 19 to 45] vs. 20 minutes [interquartile range, 15 to 30]; P<0.001) and spent more of the time talking (median, 14 minutes [interquartile range, 8 to 20] vs. 5 minutes [interquartile range, 5 to 10]). On day 90, the 56 participants in the intervention group who responded to the telephone interview had a significantly lower median IES score than the 52 participants in the control group (27 vs. 39, P=0.02) and a lower prevalence of PTSD-related symptoms (45% vs. 69%, P=0.01). The median HADS score was also lower in the intervention group (11, vs. 17 in the control group; P=0.004), and symptoms of both anxiety and depression were less prevalent (anxiety, 45% vs. 67%; P=0.02; depression, 29% vs. 56%; P=0.003). CONCLUSIONS: Providing relatives of patients who are dying in the ICU with a brochure on bereavement and using a proactive communication strategy that includes longer conferences and more time for family members to talk may lessen the burden of bereavement. (ClinicalTrials.gov number, NCT00331877.)
2007
Lautrette A; Darmon M; Megarbane B; Joly LM; Chevret S; Adrie C; Barnoud D; Bleichner G; Bruel C; Choukroun G; Curtis JR; Fieux F; Galliot R; Garrouste-Orgeas M; Georges H; Goldgran-Toledano D; Jourdain M; Loubert G; Reignier J; Saidi F; Souweine B; Vincent F; Barnes NK; Pochard F; Schlemmer B; Azoulay E
The New England Journal Of Medicine
2007
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Journal Article
<a href="http://doi.org/10.1056/NEJMoa063446" target="_blank" rel="noreferrer">10.1056/NEJMoa063446</a>
A comparison of adult bereavement in the death of a spouse, child, and parent
Child; Grief; Adult; Parents; Death; bereavement
The Grief Experience Inventory (GEI) and the MMPI were used to assess bereavement reactions in 102 newly bereaved individuals; 107 controls were also assessed. Intensities of bereavement reactions were compared across three types of deaths experiences, i.e., spouse, child, and parent. Significantly higher intensities of grief were noted in parents surviving their child's death. A distinct number of physiological symptoms were noted in the bereaved group as compared to controls. Frequent church attenders were more likely to respond with higher optimism and social desirability but more repression of bereavement responses than were less frequent church attenders. Income did not appear to contribute negatively to bereavement itself but rather to the constellation of debilitating variables which surrounds those with low income. There were no differences in bereavement intensities between those who survived a chronic-illness death as compared with sudden death situations.
1980
Sanders CM
Omega
1980
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Journal Article
<a href="http://doi.org/10.2190/x565-hw49-chr0-fyb4" target="_blank" rel="noreferrer">10.2190/x565-hw49-chr0-fyb4</a>
A grief ignored: Narratives of pregnancy loss from a male perspective
Male; Grief; Pregnancy; Attitude; Nurses; Fathers; Role; Research; Self-Help Groups; bereavement; Interviews; narrative; Anger; Paper; Support; Meaning; emotion; male grief; pregnancy loss
This paper, utilising a narrative approach, aims to describe the experiences of men whose partner had experienced pregnancy loss, based on data from Northern Ireland. The methodology was based upon observation within pregnancy loss self-help groups and in-depth interviews with 14 men who attended the groups. The study also included interviews with 32 midwives and nurses, with the intention of examining attitudes within the medical context towards bereaved fathers. The impact of pregnancy loss on male partners has been largely overlooked in academic research. When a baby dies before birth the loss can be devastating for fathers yet, very often, the world that surrounds them tends to discount their loss, and emotional support and cultural rituals that are normally available to other bereaved individuals are often absent for this group of men. Previous research has shown that men are expected to be emotionally strong in order to support their partner. The present study will show that the perception that men have only a supportive role in pregnancy loss is unjustified, as it ignores the actual life-world experiences of the men, and the meanings they attach to their loss, in what may be a very personal emotional tragedy for them where they have limited support available. The study uncovered several recurring themes including self-blame; loss of identity; and the need to appear strong and hide feelings of grief and anger. There is consideration of the need for hospital staff and the wider community to acknowledge the male partner's grief as being a valid response to the bereavement suffered.
2004
McCreight BS
Sociology Of Health & Illness
2004
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Journal Article
<a href="http://doi.org/10.1111/j.1467-9566.2004.00393.x" target="_blank" rel="noreferrer">10.1111/j.1467-9566.2004.00393.x</a>
A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
Child; loss; end of life; Only Child; palliative; bereavement; coping with grief
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. RESULTS: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. CONCLUSION: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
Kochen EM; Grootenhuis MA; Teunissen Sccm; Boelen PA; Tataranno ML; Fahner JC; de Jonge RR; Houben ML; Kars MC
Acta Paediatrica
2023
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<a href="http://doi.org/10.1111/apa.16716" target="_blank" rel="noreferrer noopener">10.1111/apa.16716</a>
A linguistic study of Chinese Weibo users who lost their only child
Bereavement; linguistics; parental bereavement
The loss of an only child is one of the most painful life events and creates tremendous change in its parents' lives. Analyzing parents' online language use may help to better understand their loss, especially their psychological process. This study compared the online word use of 228 lost-only-child (LOC) parents to that of their peers. We also tracked the change in word use for a subset of these parents (n = 36) quarterly during the first 2 years following their bereavement. The implications of the word use of Chinese LOC parents for mood, parent-child bond, and lifestyle are then discussed.
Liu M; Liu T; Wang X; Zhao N; Xue J; Zhu T
Death Studies
2019
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<a href="http://doi.org/10.1080/07481187.2019.1686088" target="_blank" rel="noreferrer noopener">10.1080/07481187.2019.1686088</a>
A literature review of western bereavement theory: from decathecting to continuing bonds
Grief; Death; bereavement; SSHRC CURA; Loss (Psychology); CULTURAL policy; Depression; FAMILY counselors; grief work history; Mental; multicultural aspects of grief; MULTICULTURALISM; SADNESS; SOCIAL policy
Theories of bereavement continue to change and develop. This literature review explores the history of Western bereavement theories, beginning with Freud's grief work, moving to the stage theories, and concluding with current constructivist thought of making meaning and continuing bonds with the deceased. Special consideration is given to gender and multicultural aspects of grief and loss. The review concludes with a discussion of the role of couple and family counselors. ABSTRACT FROM AUTHOR Copyright of Family Journal is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts); Theories of bereavement continue to change and develop. This literature review explores the history of Western bereavement theories, beginning with Freud's grief work, moving to the stage theories, and concluding with current constructivist thought of making meaning and continuing bonds with the deceased. Special consideration is given to gender and multicultural aspects of grief and loss. The review concludes with a discussion of the role of couple and family counselors. ABSTRACT FROM AUTHOR Copyright of Family Journal is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts)
2007
Rothaupt JW; Becker K
Family Journal
2007
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 meta-analysis of interventions for bereaved children and adolescents
Child; Female; Male; bereavement; Age Factors; Confidence Intervals; Time Factors; Preschool; Human; systematic review; sibling bereavement; Adolescence; Adolescent Psychiatry; Child Psychiatry; Descriptive Statistics; Meta-Analysis; Music therapy; One-Way Analysis of Variance; P-Value; Psychotherapy -- Evaluation; Regression
The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies and 1 on uncontrolled studies. The 2 meta-analyses were based on a total of 27 treatment studies published before June 2006. Hedges's g and Cohen's d were used as measures of effect size and a random-effects model was applied. Results yielded small to moderate effect sizes. Interventions for symptomatic or impaired participants tended to show larger effect sizes than interventions for bereaved children and adolescents without symptoms. Promising treatment models were music therapy and trauma/grief-focused school based brief psychotherapy.
2010-02
Rosner R; Kruse J; Hagl M
Death Studies
2010
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Journal Article
<a href="http://doi.org/10.1080/07481180903492422" target="_blank" rel="noreferrer">10.1080/07481180903492422</a>
A music therapy model for pre-bereavement resiliency development in informal hospice caregivers: A grounded theory study.
Caregivers; Hospice; Music Therapy; Bereavement
This study was an exploratory inquiry into the role of music therapy for pre-bereaved informal hospice caregivers. Pre-bereavement has been an area of increased scholarly and clinical focus across multiple healthcare fields over the past decade, and a nascent area of interest in music therapy. The purpose of this study was to expand the existing knowledge base of what pre-bereavement needs are present for informal hospice caregivers, which of those needs were addressed in music, and the process by which music therapy addressed those needs. A constructivist grounded theory approach using situational analysis was used to establish an emergent, developing theoretical model about how music therapy can be most effective and meaningful for pre-bereaved caregivers. Fourteen currently bereaved informal caregivers who experienced joint music therapy sessions with the care recipient were interviewed about their pre-bereavement needs, which of those were addressed by music therapy, and how music therapy assisted in those areas of need. Analysis of this data resulted in a model of pre-bereavement resiliency development in informal hospice caregivers. Caregivers are at risk of losing touch with the meaning attached to their pre-illness relationship with the care recipient (e.g., spouse, parent or child), and music therapy is able to facilitate a clinical process whereby caregivers are able to reconnect with being spouse, parent or child. Once this connection is established, caregivers experience increased resilience in the face of daily caregiver responsibilities and challenges. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Potvin N
Dissertation Abstracts International: Section B: The Sciences And Engineering
2017
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n/a; <a href="https://idea.library.drexel.edu/islandora/object/idea%3A7129" target="_blank" rel="noreferrer">link</a>
A new model of grief: bereavement and biography
Grief; bereavement
1996
Walter Tony
Mortality
1996
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Journal Article
<a href="http://doi.org/10.1080/713685822" target="_blank" rel="noreferrer">10.1080/713685822</a>
A paradigm of integrative care: healing with curing throughout life, "being with" and "doing to"
Child; Humans; Palliative Care; Pediatrics; Attitude of Health Personnel; Philosophy; Medical; Psychological; bereavement; Models
We are presenting an integrative paradigm of care. We will review the basis for its evolution from prior series and parallel models. In this paradigm, healing and palliation (when indicated) are introduced in parallel with curative measures as soon as any diagnosis, especially a critical one, is made. Frequently palliative measures address patient symptoms, such as pain, anxiety, delirium, or depression, and are geared towards comfort care at the end of life. Our view of healing care is that it actively addresses the cognitive, emotional and spiritual needs of the patient and family, and includes the elements of palliative care as a complement. Because a loss is often experienced in many conditions, even in the absence of death, bereavement is represented in our model as an ongoing, continual process throughout a disease process. While we will be drawing mainly from experiences with children, the proposed model is applicable to all ages. In order to implement this model most effectively, it will be important to shift from our mindset of "doing to" to one that includes "being with" our patients and their families. The uniqueness of this paradigm, in contrast to other models, is its comprehensiveness and universality. It is appropriate for patients of any age, at any stage of their disease or illness, regardless of the severity or duration of their condition.
2005
Milstein J
Journal Of Perinatology
2005
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Journal Article
<a href="http://doi.org/10.1038/sj.jp.7211358" target="_blank" rel="noreferrer">10.1038/sj.jp.7211358</a>
A photovoice study on the bereavement experience of mothers after the death of a child
bereavement; loss of a child; parental experience; pediatric oncology; photovoice
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child's healthy future, (d) what gave me strength, and (e) fulfilling my child's wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.
Kim MA; Yi J; Sang J; Jung D
Death Studies
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/10.1080/07481187.2019.1648333" target="_blank" rel="noreferrer noopener">10.1080/07481187.2019.1648333</a>
A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.
Child; Female; Humans; Male; Data Collection; Questionnaires; Attitude to Death; Pilot Projects; Attitude; Longitudinal Studies; Sweden; Research; Ethics; Empirical Approach; bereavement; Death and Euthanasia; Interviews; Parents/psychology; Biomedical and Behavioral Research
A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was approved. 95% of parents found the pilot study valuable; thus, we were allowed to proceed with the main study, which consisted of 129 questions about the child's care and death and five about the parents' perceptions of the study. 423 (99%) parents found the investigation valuable, 285 (68%) were positively affected, and 123 (28%) were negatively affected (10 [2%] of whom, very much). Although the numerical data cannot be directly translated to ethical conclusions, they can provide guidance for future ethical decisions.
2004
Kreicbergs U; Valdimarsdottir U; Steineck G; Henter JI
Lancet
2004
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Journal Article
<a href="http://doi.org/10.1016/S0140-6736(04)16939-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(04)16939-0</a>
A short form of the Posttraumatic Growth Inventory
Female; Humans; Male; Young Adult; Adult; Aged; Middle Aged; Life Change Events; Reproducibility of Results; Psychometrics; adolescent; 80 and over; Adaptation; Psychological; bereavement; Statistical; Psychological Tests; Factor Analysis; Domestic Violence/psychology; Leukemia/psychology
A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form includes two items from each of the five subscales of the original PTGI, selected on the basis of loadings on the original factors and breadth of item content. A separate sample of 186 completed the short form of the scale (PTGI-SF). Confirmatory factor analyses on both data sets demonstrated a five-factor structure for the PTGI-short form (PTGI-SF) equivalent to that of the PTGI. Three studies of homogenous clinical samples (bereaved parents, intimate partner violence victims, and acute leukemia patients) demonstrated that the PTGI-SF yields relationships with other variables of interest that are equivalent to those found using the original form of the PTGI. A final study demonstrated that administering the 10 short-form items in a random order, rather than in the fixed context of the original scale, did not impact the performance of the PTGI-SF. Overall, these results indicate that the PTGI-SF could be substituted for the PTGI with little loss of information.
2010
Cann A; Calhoun LG; Tedeschi RG; Taku K; Vishnevsky T; Triplett KN; Danhauer SC
Anxiety, Stress, And Coping
2010
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Journal Article
<a href="http://doi.org/10.1080/10615800903094273" target="_blank" rel="noreferrer">10.1080/10615800903094273</a>
A Sociocultural Approach to Children's Perceptions of Death and Loss.
Death; Prevention; Anxiety; Bereavement; Child Development; Cognition; Content Analysis (communication); Drawing; Emotions (psychology); Fear; Grief; Interviewing; Phenomenology; Attitudes Toward Death; Social Context; Thematic Analysis
Death; Drawings; Loss; Phenomenography; Young Children
By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6. Thematic analysis of children's drawings and open-ended interviews revealed that most children associated death with negative emotions such as fear, anxiety, and sadness. The majority of children used realistic expressions to narrate death. The core themes from their drawings included causes for death, attempts to stop the dying, and situations after death. This study contributes to the literature by targeting young children who have been relatively excluded in death studies and provides evidence in the usefulness of drawings as a developmentally appropriate data collection tool. The findings also enrich our knowledge about children's understanding of death and bereavement, rooted in the inductive analysis of empirical data with children from culturally diverse backgrounds.
Sungeun Y; Soyeon P
Omega: Journal Of Death & Dying
2017
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<a href="http://doi.org/10.1177/0030222817693138" target="_blank" rel="noreferrer">10.1177/0030222817693138</a>
A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents
pediatric palliative care; bereavement; grief; end-of-life; bereavement care; interventions; pediatric bereavement care
AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. RESULTS: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. CONCLUSIONS: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.
Dias N; Hendricks-Ferguson VL; Wei H; Boring E; Sewell K; Haase JE
American Journal of Hospice and Palliative Care
2019
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<a href="http://doi.org/10.1177/1049909119858931" target="_blank" rel="noreferrer noopener">10.1177/1049909119858931</a>
ABC of palliative care. Special problems of children
Child; Humans; Palliative Care; Pain Measurement; Great Britain; Child Health Services; Family Health; Preschool; bereavement; Pain/etiology; social support; Child welfare
1998
Goldman A
Bmj (clinical Research Ed.)
1998
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Journal Article
<a href="http://doi.org/10.1136/bmj.316.7124.49" target="_blank" rel="noreferrer">10.1136/bmj.316.7124.49</a>
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
communication; pediatric palliative care; bereavement; telehealth
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
Weaver MS; Jurgens A; Neumann ML; Schalley SM; Kellas JK; Navaneethan H; Tullis J
Journal of Palliative Medicine
2021
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<a href="http://doi.org/10.1089/jpm.2020.0617" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0617</a>
Adolescent sibling bereavement as a catalyst for spiritual development: a model for understanding.
Female; Humans; Male; Adolescent Psychology; Spirituality; Religion and Psychology; Sibling Relations; adolescent; Psychological; bereavement; Models; sibling bereavement; Interview; T
While our understanding of adolescent bereavement has greatly expanded in recent years, one area yet to be clarified is the relationship between grief following a significant loss and spirituality. This article strengthens our understanding of this connection in two ways. First, the authors present a conceptual model explaining how developmental changes in cognitive capacity during the adolescent life stage make it possible to challenge one's beliefs and search for new meaning. The crisis of experiencing the death of a sibling during this period has the potential, then, of serving as a catalyst for enhanced spirituality--defined as a quest for new meaning. Secondly, interviews with four adolescents following the death of a sibling add more detailed understanding of that quest for meaning. Quotations drawn from these interviews illustrate these young persons' shifting perspective of self, others, the sibling relationship, a higher power, death, and life.
1999-09
Batten M; Oltjenbruns KA
Death Studies
1999
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Journal Article
Advances in pediatric psychooncology
child; human; palliative therapy; adult; childhood cancer; review; young adult; sibling; attention; distress syndrome; outcome assessment; cancer patient; infant; psychosocial care; bereavement; cancer center; psycho-oncology; survivorship; patient reported outcome; chimeric antigen receptor T-cell immunotherapy; evidence based practice center; hereditary tumor syndrome; toddler
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement.Recent findingsAlthough attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy.SummaryThe evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.
Wiener L; Devine K A; Thompson A L
Current Opinion in Pediatrics
2020
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<a href="http://doi.org/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000851</a>
Advancing social work practice in end-of-life care
Humans; United States; Palliative Care; Terminal Care; Health Care Surveys; Education; Focus Groups; bereavement; continuing; New York City; Social Work/education; New Jersey
Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of social work in this substantive area have only recently been explored. This study used a practitioner survey, focus groups, and a survey of faculty of schools of social work to broaden the information base. Results suggested that not unlike the professions of medicine and nursing, social work knowledge and skill development in the care of the dying is uneven and not integrated sufficiently with theoretical concepts and research. Social workers felt unprepared for this work by their master's level training and unsupported by continuing education programs. They recognized few social work scholars who could function as role models by providing comprehensive training, knowledge building, innovation, and advocacy. A program for leadership development was created to test new approaches to professional development in the care of the dying and the bereaved.
1999
Christ GH; Sormanti M
Social Work In Health Care
1999
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Journal Article
<a href="http://doi.org/10.1300/j010v30n02_05" target="_blank" rel="noreferrer">10.1300/j010v30n02_05</a>
African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study
Adult; Anticipatory Grieving; Anxiety; Bereavement; Blacks -- Psychosocial Factors; Comparative Studies; Depression; Descriptive Statistics; Female; Fetal Abnormalities -- Diagnosis; Funding Source; Health Status; Hispanics -- Psychosocial Factors; Human; Interviews; Male; Multimethod Studies; Palliative Care; Parental Attitudes; Patient Satisfaction; Perinatal Care; Perinatal Death -- Psychosocial Factors; Psychological Well-Being; Qualitative Studies; Quantitative Studies; Questionnaires; Scales; Self Report; Summated Rating Scaling; Surveys; Treatment Outcomes
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes. Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed. Parents rated their general health close to good , physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer / stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds. Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC. • The impact of race and ethnicity on response to perinatal loss is not well known. • Perinatal death can have long-lasting, negative effect on the parents' health. • Perinatal palliative care exists for fetal life-limiting conditions. • The majority of parents reported worsening or new health problems after the loss. • Parents found that perinatal palliative care greatly improved their experience.
Côté-Arsenault D; Denney-Koelsch E M; McCoy T P; Kavanaugh K
Applied Nursing Research
2019
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<a href="http://doi.org/10.1016/j.apnr.2019.151200" target="_blank" rel="noreferrer noopener">10.1016/j.apnr.2019.151200</a>
An Analysis of John Bowlby’s Mourning Stages in Family Art Therapy as a Way to Help the Family Mourning Process
Bereavement; Hospice Care; Family; Art Therapy; Pallative care
Purpose: Pediatric palliative care is a rapidly developing multidisciplinary approach that supports children with life-limiting conditions and their families. However, there is limited evidence on how to effectively support bereaved parents and siblings. The purpose of this study is to explore the therapeutic impact of art therapy for bereaved families, in accordance with John Bowlby’s four-stage theory of mourning. Methods: This single-case study employed the consensual qualitative research method. Art therapy records of bereaved families were reviewed individually, and records from one case were selected. Verbal statements made during the art therapy sessions and photocopies of the artworks were analyzed to understand the mourning process of the family. Results: A total of 113 statements and 12 artworks from 19 art therapy sessions were analyzed. As the art therapy progressed, each family member exhibited a pattern of engaging in more positive and healthy conversations in daily life, demonstrating the final stage of mourning: reorganization and recovery. The family dynamics also revealed that they reconstructed their inner world and redefined the meaning of loss, which is the final stage of mourning. The art therapy provided a safe environment for the family, allowing them to fulfill their wishes and regain the strength needed for recovery. Conclusion: This study suggests that art therapy supports bereaved families in alleviating their psychological difficulties, engaging in a healthy mourning process, and functioning as members of society. Further research is needed to better understand the effect of art therapy as a bereavement support tool in pediatric palliative care.
Seon AY; Sung HA; Cho HK; Min-Sun K
Journal of Hospice and Palliative Care
2023
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<a href="http://doi.org/10.14475/jhpc.2023.26.2.27%5C">10.14475/jhpc.2023.26.2.27\</a>"
An assessment of gender differences in the perception of benefit resulting from the loss of a child.
Child; Female; Humans; Male; Grief; Adult; Questionnaires; Aged; Middle Aged; Longitudinal Studies; Sex Factors; Life Change Events; Perception; Growth; Adaptation; Psychological; bereavement; Gender Identity
The current study focused on a sample of adults (N = 67) experiencing bereavement following the loss of a child. The Post Traumatic Growth Inventory (PTGI) was used to assess whether bereaved parents were able to perceive benefit from their trauma, and whether there were gender differences in perception of benefit. The impact of the following variables on the PTGI was also assessed: the nature and length of time since the loss, and the age and marital status of the bereaved. The results indicated that bereaved parents do perceive benefit from their loss. However, there was poor evidence to suggest perception of benefit along gender lines. Results also indicated a potential relation between greater perception of benefit and those bereaved through illness, and more perception of benefit for the longer the time elapsed since the bereavement. Lastly, there was a tendency for younger individuals and married respondents to obtain higher scores on the PTGI.
2000
Polantinsky S; Esprey Y
Journal Of Traumatic Stress
2000
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Journal Article
<a href="http://doi.org/10.1023/a:1007870419116" target="_blank" rel="noreferrer">10.1023/a:1007870419116</a>
An empirical examination of the stage theory of grief
Grief; Family; Death; Physicians; Depression; Time; bereavement; Anger; design
Context The stage theory of grief remains a widely accepted model of bereavement adjustment still taught in medical schools, espoused by physicians, and applied in diverse contexts. Nevertheless, the stage theory of grief has previously not been tested empirically. Objective To examine the relative magnitudes and patterns of change over time post-loss of 5 grief indicators for consistency with the stage theory of grief. Design, Setting, and Participants Longitudinal cohort study (Yale Bereavement Study) of 233 bereaved individuals living in Connecticut, with data collected between January 2000 and January 2003. Main Outcome Measures Five rater-administered items assessing disbelief, yearning, anger, depression, and acceptance of the death from 1 to 24 months postloss. Results Counter to stage theory, disbelief was not the initial, dominant grief indicator. Acceptance was the most frequently endorsed item and yearning was the dominant negative grief indicator from 1 to 24 months postloss. In models that take into account the rise and fall of psychological responses, once rescaled, disbelief decreased from an initial high at 1 month postloss, yearning peaked at 4 months postloss, anger peaked at 5 months postloss, and depression peaked at 6 months postloss. Acceptance increased throughout the study observation period. The 5 grief indicators achieved their respective maximum values in the sequence (disbelief, yearning, anger, depression, and acceptance) predicted by the stage theory of grief. Conclusions Identification of the normal stages of grief following a death from natural causes enhances understanding of how the average person cognitively and emotionally processes the loss of a family member. Given that the negative grief indicators all peak within approximately 6 months postloss, those who score high on these indicators beyond 6 months postloss might benefit from further evaluation.
2007
Maciejewski PK; Zhang B; Block SD; Prigerson HG
Jama
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.297.7.716" target="_blank" rel="noreferrer">10.1001/jama.297.7.716</a>
An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer
child mortality; parents; bereavement; psychosocial support systems; peer group; neoplasm/mortality*
CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalise grief experiences and reduce parents' isolation. It is available free of charge. AIM: This project evaluated the acceptability, relevance, emotional impact and usefulness of By My Side. DESIGN: Bereaved parents and healthcare professionals provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyse the data. SETTING: /participants: We mailed a study invitation and evaluation questionnaire to parents and healthcare professionals who ordered a copy of By My Side. RESULTS: Twenty-four bereaved parents and seven healthcare professionals provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was 'just right'. 75% of parents reported that the book made them feel that their reactions to their child's death were normal/appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and healthcare professionals reported that the book provided useful information about grief. 83.4% of parents and 85.7% of healthcare professionals would recommend it to others. CONCLUSION: By My Side was acceptable and useful to bereaved parents and healthcare professionals. Results suggest that peer support in written form may help normalise aspects of grief and comfort parents bereaved by childhood cancer.
Raharjo C; Hetherington K; Donovan L; Fardell J E; Russell V; Cohn R J; Morgan N; Siddiqui J; Wakefield C E
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.01.013</a>
An Interdisciplinary Hospital-Based Committee to Improve Pediatric Bereavement Care
Bereavement; Hospital care; Interdisciplinary; Pediatric
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children's hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves. Copyright © 2021 by the American Academy of Pediatrics.
Goldberg JM; Duplechain AC; Fraser CE; Boles JC
Hospital Pediatrics
2021
<a href="http://doi.org/10.1542/hpeds.2021-005964" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-005964</a>
Anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses: A Danish nationwide questionnaire survey
adult; article; child; female; human; major clinical study; male; controlled study; education; palliative therapy; anxiety; bereavement; questionnaire; Center for Epidemiological Studies Depression Scale; Denmark; depression; father; mother; single (marital status); young adult
CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and imminent death and three to five years after the loss to target future interventions. METHODS: A Danish nationwide cross-sectional questionnaire survey. From 2012 to 2014, a register-based study identified causes of deaths of 951 children aged zero to 18 years. Potential palliative diagnoses were classified according to previously used classification. A total of 402 families were included. A modified version of the self-administered questionnaire "To lose a child" was used. Non-response surveys identified reasons for lack of response. RESULTS: In all, 136 mothers and 57 fathers completed a questionnaire, representing parents of 152 children (38%). Sixty-five percent of mothers and 63% of fathers reported moderate-to-severe anxiety during the child's illness. However, three to five years after their loss anxiety had decreased markedly. Thirty-five percent of mothers and 39% of fathers reported moderate-to-severe depression during the child's illness; three to five years after the loss they were suffering equivalently from depression. The Center for Epidemiologic Studies Depression Scale indicated that severe depression was significantly associated with lower education and being unmarried. CONCLUSION: The reporting of anxiety during the child's illness and prolonged depression in bereaved parents three to five years after the loss indicates a potential need for psychological interventions. In the process of implementing specialized pediatric palliative care in Denmark, our findings should be considered for future treatment programs.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Journal of pain and symptom management.
2019
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.025</a>
Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.
Child; Female; Humans; Male; Adult; Parent-Child Relations; Aged; Middle Aged; Death; Age Factors; Longitudinal Studies; Risk Factors; Morbidity; Case-Control Studies; Preschool; Non-U.S. Gov't; Research Support; bereavement; Depression/etiology; Psychological; Stress; Neoplasms; Anxiety Disorders/etiology
BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the child. We investigated parental risk of anxiety and depression 4-9 years after the loss of a child owing to a malignancy. METHOD: In 2001, we attempted to contact all parents in Sweden who had lost a child due to a malignancy during 1992--1997. We used an anonymous postal questionnaire and utilized a control group of non-bereaved parents with a living child. RESULTS: Participation among bereaved parents was 449/561 (80 %); among non-bereaved 457/659 (69%). We found an increased risk of anxiety (relative risk 1.5, 95 % confidence interval 1.1-1.9) and depression (relative risk 1.4, 95 % confidence interval 1.1-1.7) among bereaved parents compared with non-bereaved. The risk of anxiety and depression was higher in the period 4-6 years after bereavement than in the 7-9 years period, during which the average excess risks approached zero. Psychological distress was overall higher among bereaved mothers and loss of a child aged 9 years or older implied an increased risk, particularly for fathers. CONCLUSIONS: Psychological morbidity in bereaved parents decreases to levels similar to those among non-bereaved parents 7-9 years after the loss. Bereaved mothers and parents who lose a child 9 years or older have on average an excess risk for long-term psychological distress.
2004
Kreicbergs U; Valdimarsdottir U; Onelov E; Henter JI; Steineck G
Psychological Medicine
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/10.1017/s0033291704002740" target="_blank" rel="noreferrer">10.1017/s0033291704002740</a>
Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents
Child; Female; Humans; infant; Male; Young Adult; Adult; Parent-Child Relations; quality of life; adolescent; Preschool; Adaptation; Psychological; bereavement; Terminally Ill/psychology; infant; Charting the Territory; Newborn; Parents/psychology; Anxiety/epidemiology/etiology/psychology; Depression/epidemiology; Neoplasms/psychology; Sweden/epidemiology
BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being. RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life. CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.
Jalmsell L; Kreicbergs U; Onelov E; Steineck G; Henter JI
Pediatric Blood & Cancer
2010
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/10.1002/pbc.22418" target="_blank" rel="noreferrer">10.1002/pbc.22418</a>
Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions
Childhood Cancer; Bereavement; Cancer Prognosis; Child; Controlled Study; Ethnic Group; Human; Palliative Therapy; Personal Experience; Prevalence; Prognosis; Quality Of Life; Randomized Controlled Trial(topic); Sibling; Voice
Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent-provider concordance with regards to prognosis, as well as the need for bereavement supports. The second decade expanded PPC oncology investigation to include the entire cancer continuum and the voices of patients. Other studies identified the need for support of parents, siblings, and racial and ethnic minority groups. Promising interventions designed to improve outcomes were tested in randomised clinical trials. Future research will build on these findings and pose novel questions about how to continue to reduce the burdens of paediatric cancer.
Rosenberg AR; Wolfe J
The Lancet Child And Adolescent Health
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/10.1016/S2352-4642%252817%252930014-7" target="_blank" rel="noreferrer">10.1016/S2352-4642%252817%252930014-7</a>