Examining the Experiences and Support Needs of Bereaved Parents After the Death of a Child During Early Adulthood From Cancer

Background Parents experience unique grief, which may be experienced differently by mothers and fathers. A lack of knowledge about the particular bereavement experiences of the parents of young adults exists. Objective The aim of this study was to investigate experiences and support needs of parents after the death of a child (aged 16-29 years) from cancer, exploring changes over time. Methods The study used a Charmazian constructivist grounded theory approach. Semistructured interviews were conducted with 11 parents (7 mothers and 4 fathers) purposefully sampled and bereaved between 15 months and 7 years. Data were analyzed inductively using the constant comparative approach for category development. Results “Living with continual loss” emerged as the core category central to parents’ experiences of bereavement. Feelings of continual loss were compounded by parents’ lack of information (“grieving in the dark”) and a perceived lack of understanding from families and friends (“grieving alone”). Parents discovered strategies to manage the feeling of loss: “changing routines,” “preserving the meaning of home,” “maintaining memories and presence,” and “sharing experiences.” Conclusions This is the first study focusing solely on the experiences and support needs of bereaved parents of young adults who have died of cancer. Parents live with a continual sense of loss irrespective of the length of bereavement, and a lack of bereavement information and empathetic emotional support can exist. Implications for Practice The need for improved information giving and development of peer support for bereaved parents has been identified. Cancer centers have a continuing role in developing and providing this support.

[1]  J. Sveen,et al.  Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss—A nationwide study , 2019, Psycho-oncology.

[2]  O. Hjemdal,et al.  Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer , 2019, PloS one.

[3]  Dana Zarhin Conducting Joint Interviews With Couples: Ethical and Methodological Challenges , 2018, Qualitative health research.

[4]  S. Liben,et al.  Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them , 2017, Qualitative health research.

[5]  J. Baker,et al.  Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program. , 2017, Journal of pain and symptom management.

[6]  D. Brandon,et al.  Parental bereavement: Looking beyond grief , 2017, Death studies.

[7]  Kina Hammarlund,et al.  Like being covered in a wet and dark blanket - Parents' lived experiences of losing a child to cancer. , 2016, European journal of oncology nursing : the official journal of European Oncology Nursing Society.

[8]  Louisa Polak,et al.  Using Joint Interviews to Add Analytic Value , 2016, Qualitative health research.

[9]  J. Baker,et al.  Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey , 2016, Pediatric blood & cancer.

[10]  H. Prigerson,et al.  Mental Health Services for Parents Who Lost a Child to Cancer: If We Build Them, Will They Come? , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  M. Landolt,et al.  Dyadic Coping of Parents After the Death of a Child , 2015, Death studies.

[12]  C. Wakefield,et al.  Hospital-based bereavement services following the death of a child: A mixed study review , 2015, Palliative medicine.

[13]  K. Charmaz,et al.  Constructing Grounded Theory , 2014 .

[14]  Suzanne L. Nuss Redefining Parenthood: Surviving the Death of a Child , 2014, Cancer nursing.

[15]  R. Malkinson,et al.  Bereaved Jewish Mothers of Children Who Died of Cancer: The Relationship Between the Mother and the Deceased Child and the Mother’s Perceived Functioning , 2013, Cancer nursing.

[16]  M. Barrera,et al.  Bereaved Parents and Siblings Offer Advice to Health Care Providers and Researchers , 2013, Journal of pediatric hematology/oncology.

[17]  A. Grinyer A bereavement group for parents whose son or daughter died from cancer: how shared experience can lessen isolation , 2012 .

[18]  M. Dietrich,et al.  Changes in parents after the death of a child from cancer. , 2012, Journal of pain and symptom management.

[19]  D. Nicholas,et al.  Bereavement Experiences of Mothers and Fathers Over Time After the Death of a Child Due to Cancer , 2012, Death studies.

[20]  L. Prior,et al.  Living through the death of a child: a qualitative study of bereaved parents' experiences. , 2011, International journal of nursing studies.

[21]  M. Barrera,et al.  A Qualitative Study of Advice From Bereaved Parents and Siblings , 2011, Journal of social work in end-of-life & palliative care.

[22]  P. Åstedt‐Kurki,et al.  Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research. , 2011, Journal of clinical nursing.

[23]  M. Barrera,et al.  Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer , 2009, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[24]  D. Nicholas,et al.  Early Parental Adjustment and Bereavement After Childhood Cancer Death , 2009, Death studies.

[25]  J. Coebergh,et al.  Survival of European children and young adults with cancer diagnosed 1995-2002. , 2009, European journal of cancer.

[26]  H. Prigerson,et al.  Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[27]  M. Barrera,et al.  Bereaved parents' perspectives on their needs , 2008, Palliative and Supportive Care.

[28]  M. Barrera,et al.  Patterns of Parental Bereavement following the Loss of a Child and Related Factors , 2007, Omega.

[29]  Scott A. Baldwin,et al.  Continuing Bonds and Reconstructing Meaning: Mitigating Complications in Bereavement , 2006, Death studies.

[30]  J. Creed,et al.  A weekend camp for bereaved siblings. , 2001, Cancer practice.

[31]  E. Menke,et al.  Evaluating a Support Group for Perinatal Loss , 2001, MCN. The American journal of maternal child nursing.