1. Women’s Perceptions of Nurses’ Caring Behaviours during Perinatal Loss in Lilongwe, Malawi: An Exploratory Study. Andrew Simwaka, Winnie Chilemba Kamuzu College of Nursing, University of Malawi

2. Background Perinatal loss, including early (between 20 and 28 weeks gestation) and late (after 28 weeks) fetal deaths and neonatal deaths within 28 days after birth (Miller, 2009) is a devastating but common experience. Malawi’s perinatal mortality rate is amongst the highest in the world; it was at 36 per 1,000 in 2004, down from 46 in 2000 (NSO and ORC Macro, 2005). Perinatal loss involves the loss of the hoped for, planned for, and anticipated child, and a sense of failure to become a parent ( Callister 2006; Capitulo, 2005; Hutti, 2005). This makes perinatal loss particularly traumatic.

3. Objective The study examined women’s perceptions of and satisfaction with nursing care they received following stillbirth and neonatal death in Malawi

4. Methods a qualitative, exploratory study 20 women who had lost a child through stillbirth or neonatal death in the past 2 years recruited through a mixture of purposive and snowball sampling in 10 villages around a community hospital in Lilongwe, Malawi

5. semi-structured interviews Interviews tape-recorded and transcribed verbatim Data analyzed using thematic analysis

6. Results Characteristics of women Age: ranged from 17 to 33 years (Mean = 20.4 years) Educational: from standard 2 (primary) to form 3 (n=2) Marital status: 19 married and one was single. Six had unplanned pregnancies. Parity: one to nine (Mean = 3.5, Mode = 3). Most women in petty trade like selling small scale farm produce

7. Women’s experience of care received Women referred to both positive and negative episodes in terms of physical and psychological aspects of care. Physical aspects of care received Women’s interpretation of the quality of the care received depended in part on the kind of physical or medical care received. They took good care of me because they gave me some medicine and blood after I gave birth to a dead child. (Interview 15)

8. Psychological impact of physical care If women felt that their physical needs were looked after, this was likely to be beneficial for their psychological well-being and overall experience.

9. Responding to the Loss Perinatal loss is a traumatic experience because it thwarts expectations; the hoped for, planned for, and anticipated child is lost. I was filled with sorrow because I was expecting something, I was eagerly waiting, and I was also happy that I would have a baby. I was heart-broken……. (interview 3)

10. Three other women blamed it on the nurses’ negligence: it is the nurse’s negligence because if she had attended to me a way could have been found to save my baby (interview 9) several women described feelings of abandonment or not being supported (Interview 11)

11. Lack of empathy and attention. Several women found that nurses lacked warmth and sensitivity they felt they were cared for in a business- like manner. nurses did not show any empathy by saying words of encouragement or counselling them following their stillbirth or neonatal death.

12. All participants wanted the nurse’s attention soon after experiencing perinatal loss and they were disappointed when they were not adequately attended to. There is nothing that they were doing, when the child died, they were just walking about. (Interview 6)

13. Lack of explanations Twelve women said that the nurses did not explain to them the possible causes of their stillbirths and newborn deaths. Some mothers gave their own explanations as to what may have caused their child’s death, such as suffocation, God’s will or witchcraft and these explanations themselves (e.g. witchcraft) may have caused additional stress.

14. nurses did not take their complaints seriously and neglected them and their babies. However, five participants said that the death of their (unborn) baby was God’s wish (Interview 1)

15. Coping strategies in dealing with the loss belief in God and fate support received from significant others like their spouse, parents, relatives, and members of their (religious) community

16. Discussion The importance women attach to bearing children in Malawi may have aggravated their sense of loss Providing explanations to women Patient-centred care

17. Medicalisation of perinatal death: health professionals view perinatal death from a medical perspective focusing on the physiological factors only. - loss as an emotional and symbolical event (Frost et al 2007). - institutionalized norms of dealing with bereaved women - depersonalisation and ‘mechanical’ interactions

18. nurses’ attitudes and professional negligence, reluctant to critique health professionals

19. Limitations The sample was fairly homogenous; most participants in this study had relatively little education, were poor and belong to the Chewa ethnic group predominantly found in central Malawi. Use of other methods of data-collection such as observations would have enabled triangulation of findings and provide a more holistic perspective of the child loss experience.

20. Nevertheless, the findings add to a body of knowledge about womens’ perceptions of nursing care following perinatal loss previously unexplored in Malawi.

21. Implications for practice Although follow-up research is desirable, nurses must attend to the physical and medical needs of women physically being with the bereaved woman conveys emotional presence and connectedness acknowledge the meaning which women attach to their pregnancies and the significance of the baby to them in a society that highly values childbearing.

22. provision of explanations is likely to facilitate coping as well as future use of maternity services.

23. Conclusion Nurses in Malawi work in an environment with limited human and financial resources, structural interventions are needed to improve this need for nurses to change the way they care for women experiencing perinatal loss. Well-thought through training and programmes focused on promoting awareness and attitudinal and institutional change need to be developed.

24. more research of a larger scale to inform development of effective strategies for responding to such women. Research investigating health professionals’ and mens’ perspective of child loss will be essential too as their views may differ from those of women but will affect their loss experience and the way it is dealt with.

25. References Frost J, Harriet B, Levitas R, Smith L,& Garcia 2007. The loss of possibility: scientisation of death and the special case of early miscarriage Sociology of Health& Illness.29, 1003 – 1022 Hutti, M.H.,2005 Social and professional support needs of families after perinatal loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing 34; 630 - 638. Kok, B. C.de, Hussein, J. & Jeffery, P. 2010. Introduction: Loss in childbearing in resource-poor settings. Social Science and Medicine, 71(10), 1703- 1710.

26. Smith L, Frost J, Levitas R, Bradley H & Garcia J 2006 Women’s experiences of three early miscarriage management options: a qualitative study. British Journal of General Practice. 198 - 205

27. Acknowledgement KCN for funding the research De kok Bregje for her useful comments