Understanding home, homeland and family at the end of life: a qualitative study of older South Asians in East London

Personal Author: Venkatasalu, Munikumar 
Year: 2011.
Dissertation: Thesis (Ph.D.) -- University of Nottingham, 2011. 

Background

Research demonstrates that older people from ethnic minorities who are living with chronic diseases, particularly South Asians, tend to under-use available palliative and end of life care services (Fountain, 1999, Elkan et al., 2007). Some argue that there is a lack of `cultural transferability` in existing western palliative service models (Gunaratnam, 2001, Owens, 2004). Previous studies have highlighted the impact of immigration, socio cultural factors on palliative needs (Spruyt, 1999), beliefs around death and dying (Sheikh et al., 2003, Rashid and Sheikh, 2002) lack of knowledge about existing service provision (Gunaratnam, 2001, Owens, 2004) and communication barriers (Somerville, 2001), among the South Asian population. However, little is known about experiences, preferences and attitudes towards end of life care among this population.

Aim

To explore and critically examine views and perceptions about end of life issues among older South Asians living in East London.

Methodology and methods

After gaining ethical approval, five focus groups and 29 in-depth, semi-structured interviews were conducted with a total of 55 older adults (24 men and 31 women) aged between 52 to 78 years. Using purposive sampling, participants from six South Asian ethnic groups were recruited through 11 local community organisations. Where possible the focus groups and interviews were conducted in the participants' preferred language. Tape recorded multilingual data were translated and transcribed into English. Using a constructive grounded theory approach, data analysis resulted in the development of a substantive theory of “continuity and reconstruction” that captured three categories of ‘home’; ‘family’ and ‘trust’ at end of life.

Findings

The theory of “continuity and reconstruction” is explored in three ways. Firstly, the theory is explored through examination of beliefs, attitudes and expectations about the place of ‘home’ and ‘homeland’ in care of the dying. Secondly, the theory is explored as accounts of “family” in terms of how family are bound towards caring for their dying relatives at end of life and the importance of support from social networks in family care giving. Finally, the theory is explored in terms of how participants place “trust” in their family and medical professionals to lead any related discussion and to make decisions related to their death and dying.

Discussion

The findings have resonance with recent literature that has paid much attention to the valuing of family care giving during end of life (Aoun et al., 2005, Grande et al., 2009, Hudson and Payne, 2009). This study adds insights into this body of research by drawing attention to two distinctive family values that are associated with end of life care giving among South Asian communities: spousal care giving, and filial responsibility. Furthermore, despite having smaller social networks (Kahana et al., 2004, Blakemore, 2000), this study suggested that social support from community members and peer groups has a positive role in family care giving at the end of life.

Existing research shows that people from ethnic minorities often mistrust the health care system and its related policies which may underpin health disparities among ethnic minorities (Jones, 2005, Blakemore, 2000, Randhawa and Owens, 2004, Elkan et al., 2007). However, this study reports that acceptance of healthcare professionals, was conditional on having a trust in their medical knowledge and in these circumstances the involvement of health professionals in related discussions was valued.

This study innovatively used a multilingual, multicultural and multi-religious approach and importantly, using an ‘insider’ approach. However, the scope of these findings is clearly dependent on the methodological limitations of this study. This includes exploring such a sensitive topic by a novice qualitative interviewer; identity and gender of the researcher, and influence of `others` (community leaders and family members) in the interviews.

Implications for practice

Research has already explored the issues for the health professionals who are responsible for caring for older South Asian ethnic minorities in hospital and elsewhere (Vydelingum, 2000, Gunaratnam, 2001). This study’s implications for practice lie in their contribution for insights into issues related to caring for older South Asians at the end of their lives. In particular, this study made recommendations about creating better physical environments for death and dying that include environments and facilities for religious rituals and space for this population. Furthermore, while the majority of deaths still occur at the hospital (Gatrell et al., 2003, ONS, 2009) , this study also offered various recommendations for caring for older South Asians at hospitals during end of their lives. In addition, this study also offered some practical implications that includes when to discuss, with whom to discuss, who is the appropriate person to initiate discussions and how and what to discuss while holding any end of life discussions with older South Asians.

Implications for policy

Several strands of national end of life care policy for example work of Dying Matters Collation (DH, 2009) focus on raising awareness about death and dying at societal level. However, this research suggests a need for identifying effective means of improving knowledge about end of life care services among this population. Furthermore, the importance of supporting family carers is widely accepted as one of the prerequisites to achieve quality of end of life care (DH, 2008). However, this study found that despite participants’ values concerning family care giving at end of life, difficulties around caring at home were often magnified by their communication problems, and family circumstances led many of them to report that dying in hospital was a more practical choice.

Conclusion

This thesis posits two key conclusions. Firstly, while keeping their vivid memories of home, homeland and family at end of life, older South Asians were repositioning their values regarding their death and dying in the new social context (living in the East London). Secondly, existing stereotyped assumptions about home as a place of death, family care, and autonomy-focused models of decision making approaches may have limited application for wider South Asian communities. This study recommends the need for further exploration of family care giving needs and attitudes of second generation children towards end of life care issues among these South Asian populations.

Access the full e-thesis

Venkatasalu M (2011) Understanding home, homeland, and family at the end of life: a qualitative study of older South Asians in East London (PDF 4.47MB), PH.D., University of Nottingham.

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