My PhD focuses on how the experience and understanding of bereaved grandparents is affected by the context of the family in which they exist.
My research interests surround palliative care for children and young people, in particular nursing practice, family centred care, hospice provision, outcome measurement, interdisciplinary working and symptom management.
How grandparents experience the death of a grandchild following a life limiting condition.
Traditionally, bereavement support for families extends to parents and siblings of children who have died following a life limiting condition (LLC). Few research studies have focused on the needs of bereaved grandparents, who play an increasing role in the care of children with LLCs and their families.
Family-centered care is a core principle of children's palliative care and therefore understanding of ‘family’ should be congruent with contemporary society. This study aimed to explore how grandparents experience the death of a grandchild from a LLC.
Literature review:
A meta-ethnography was undertaken, using six qualitative studies, from a total of 92 papers that were reduced using COREQ guidelines.
Eight common themes were identified, which were divided into three superordinate themes. Pain was the most frequently reported and multifactorial element of the experience, where grandparents discussed the cumulative effect of pain. The grandparent and grandchild relationship in life and during death affected bereavement experiences, as did the relationship between grandparent and their family, where role and family dynamics affected experience and understanding of bereaved grandparents.
Aim:
To explore the context of individual experience, and how the grandchild’s death and family relationships affect understanding and meaning making on bereaved grandparents.
Method:
Research ethics approval was granted by Lancaster University REC.
A purposive sampling technique was used to recruit bereaved grandparents through children’s hospices in the North of England.
Those eligible for inclusion in the research:
- identified themselves as fulfilling a grandparenting role;
- were bereaved for between six and 24 months;
- had a grandchild that died following a LLC3;
- were able to speak English.
Grandparents who were the principal carers of the deceased grandchild were excluded.
Data collection and analysis:
Seven individuals participated in this study, comprising four females and three males aged between 64 - 70 years. At the time of the interview participants had been bereaved for between ten and 23 months.
Semi-structured, individual, face-to-face interviews were conducted in participant’s own homes. Field notes were taken during and immediately following the interviews.
Interpretative phenomenological analysis4 was used to analyse the data. Coding was completed using NVivo software.
Findings:
Emerging themes indicated a number of contextual factors that affect the experience of bereaved grandparents, including intergenerational bonds, identity and perceived changes in role following the death of their grandchild.
Bearing witness to the suffering of their child (the deceased child’s parent) and an inability to ‘make things better’ was a recurrent theme. The essence of grandparents’ experiences was interpreted as being driven by and focused on fulfilling a parenting role to their child.
Conclusions and implications:
The research identified that in the present study, the primary motivation of grandparental support stems from their role as a parent, and not as a grandparent.
The breath of pain experienced by grandparents is complicated by the multigenerational positions they occupy within the family. The transition from before to after death exacerbated the experience of pain. Grandparents discussed a duty to maintain a of a sense of hope, owing to their perception as an elder in the family.
Implications for practice and research:
The findings from this study should assist the development of practice to better understand, and therefore support, grandparents of children with a LLC during life, in addition to bereavement support.
In order to meet the needs of grandparents, we must acknowledge and enable their dual, simultaneous multigenerational roles of both a parent and grandparent.
Further research should focus on the experiences of grandparents from other ethnic backgrounds, and where their grandchildren did not had a diagnosis.
I am a registered children’s nurse and health visitor with extensive experience in a variety of clinical and leadership roles in the field of paediatric palliative and complex care. I am currently working as a senior manager and consultant nurse in children’s palliative and end of life care at a regional children’s hospice. I chair the Education and Workforce subcommittee and is a member of the executive board of the Yorkshire and Humber Paediatric Palliative Care Network. I am also a specialist advisor to the Care Quality Commission.
My current role involves managing palliative caring for neonates, children and young adults with life-shortening conditions. I provide clinical leadership to a range of staff, including the supervision of nurses and allied health professionals. I lecture in palliative and complex care and advanced nursing practice at both pre-registration and postgraduate levels and has written about non-medical prescribing in children’s palliative care.
Previously I have practiced in a regional paediatric intensive care, focusing particularly on caring for children with cancers and metabolic disorders, including organ failure and transplant. As a community specialist practitioner, I have cared for children with a range conditions and complex needs in the community – this included children requiring long-term ventilation and those with complex health needs. I have also worked in specialist commissioning where I set up a new service for children with specialist care needs, assessing, commissioning and evaluating NHS continuing care packages for children and young people.
In 2010, I was awarded the Queen’s Nurse title in recognition of commitment to high quality, patient-focused care.
