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Learning modules

Activity 11: Psychosocial and spiritual support for families and community

Family structures and households today are diverse. Health professionals need to understand circumstances unique to each family. Parents need to feel they can trust and access the health care team, be able to ask questions and be kept informed about their child’s progress. [1] Parents can also have different perspectives and needs from each other, so it is important to respond to individual needs.

Caring for a child with life-limiting conditions can be physically and emotionally exhausting, often for an extended period of time. Strategies should be offered to assist parents and carers to deal with this level of stress, including:

  • psycho-educational programs highlighting the positive aspects of caring
  • education for pain and symptom management
  • counselling and support group involvement
  • behavioural sleep intervention
  • involvement in group educational programs
  • telephone support service
  • psychosocial support [2]
  • educational programs to teach parents and carers how to assist with physical aspects of care
  • environmental adaptations and home modifications to assist with care
  • respite services
  • continued contact with friends, community and interest groups.

Psychosocial support for parents involves recognising the meaning and impact of their impending loss. It also involves engaging with parents about their thoughts and feelings as they provide end of life care to their child. Parents who have lost a child have described valuing health professionals who:

  • approached them on a human level
  • acknowledged their impending loss
  • initiated conversations that enabled parents to share their thoughts and feelings
  • if desired, enabled social support from other parents who shared similar experiences. [3]

Guilt can be experienced and acting out, attention seeking and becoming withdrawn are behaviours that can be displayed by siblings of children with a life-limiting illness. Stress in siblings can be reduced if they are supported, prepared for their sibling’s death and have close family relationships. [4]

Grandparents can be a supportive lifeline for families. Strategies to assist grandparents include:

  • providing access to education and information regarding their grandchild’s condition
  • supporting communication between grandparents and their adult children
  • referral to support groups or workshops specifically tailored to grandparent perspectives. [5]

Respite or short breaks can be beneficial for both children and their families by assisting to prevent carer burden. [6] Respite can be provided in the form of direct respite where children are cared for either at or away from home, or indirect respite where support workers assist with domestic chores and babysitting of siblings. [7] Respite services for children often meet specific needs such as education, play and social interaction that assists to reach developmental milestones. For adolescents transitioning to adult respite services, extra activities required for development need to be identified.

Community support

Bereaved parents can become quite isolated as other families with children may inadvertently avoid them and avoid discussing the deceased child - sometimes because they don’t know what to say. Communities and schools can offer much needed support to families. Communities as a collective can experience grief both privately and publically [8], which may require support on a larger scale. Myths and inaccurate information can be passed around a school or community. Leaders and teachers should be supported, with permission from the family. Education and support can assist with developing an appropriate awareness and understanding within a specific community setting. [9]

Follow up after a child’s death

Parents are at an increased risk of psychological distress and complicated grief following the death of their child. [4] As well as careful communication during a child’s palliative care, it is useful to arrange professional bereavement follow up after a child’s death to allow parents to:

  • ask questions
  • talk about illness, death, coping
  • talk about events around time of death
  • discuss post mortem findings if warranted
  • discuss further support.

Thinking points


REFERENCES

Monterosso, L., Kristjanson, L., and Phillips, M. (2009). The supportive and palliative care needs of Australian families of children who die from cancer. Palliative Medicine, 23, 526-536.

2. Hudson, P., Remedios, C., and Thomas, K. (2010). A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care, 9(1), 17.

3. Forster, E.M. (2012). Parent and staff perceptions of bereavement support surrounding loss of a child, Brisbane, QLD: The University of Queensland.

4. McSherry, M., Kehoe, K., Carroll, J.M., Kang, T.I., and Rourke, M.T.(2007). Psychosocial and Spiritual Needs of Children Living with a Life-Limiting Illness. Pediatric Clinics of North America, 54(5), 609-629.

5. Lee, M. and Gardner, J.E. (2010). Grandparents' Involvement and Support in Families with Children with Disabilities. Educational Gerontology, 36(6), 467-499.

6. Association for Children's Palliative Care (ACT). (2009). A Guide to the Development of Children's Palliative Care Services, Bristol, UK: Author.

7. WA Cancer & Palliative Care Network: Paediatric Palliative Care Reference Group. (2010). About Respite: information for families, Paediatric Palliative Care Program, Princess Margaret Hospital. Retrieved January 16, 2012.

8. National Association for Loss and Grief (Vic). (2010). Living with life's losses, Victoria:, National Association for Loss and Grief (Vic) Inc. Retrieved March 22, 2012, from www.nalagvic.org.au/documents/NALAG_LivingwithLifesLosses.pdf.

9. Holland, J. (2008). How schools can support children who experience loss and death. British Journal of Guidance & Counselling, 36(4), 411-424.