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“You either need help…you feel you don't need help…or you don't feel worthy of asking for it:” Receptivity to bereavement support

Published online by Cambridge University Press:  21 January 2018

Pippa Blackburn Open the ORCID record for Pippa Blackburn [Opens in a new window]  and
Caroline Bulsara
Pippa Blackburn*
Affiliation:
Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Innovation Campus, Wollongong, NSW, Australia
Caroline Bulsara
Affiliation:
School of Nursing and Midwifery The University of Notre Dame Australia Fremantle, Western Australia
*
Author for correspondence: Pippa Blackburn, Palliative Care Outcomes Collaboration (PCOC), Australian Health Services Research Institute (AHSRI); University of Wollongong, Innovation Campus, Building 234 (iC Enterprise 1), NSW, 2522. E-mail: [email protected]
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Abstract

Objective

Although the needs of the bereaved have been identified widely in the literature, how these needs translate into meaningful, appropriate, and client-centered programs needs further exploration. The application of receptivity to support is a critical factor in participation by the bereaved in palliative care bereavement programs. Receptivity is a complex multifactorial phenomenon influenced by internal and external factors that ultimately influences engagement in psychosocial support in bereavement. This study explored factors that influence receptivity to bereavement support from palliative care services in rural, regional, and remote Western Australia.

Method

The study comprised a qualitative descriptive research design using semistructured interviews with 24 bereaved individuals, nine palliative care health professionals, and four Aboriginal Health Professionals. Participants were recruited via palliative care services in country Western Australia. Interviews were transcribed verbatim and thematically analyzed.

Result

Findings revealed that a range of individual, social, and geographical factors influence receptivity to bereavement support and can impact on utilization of bereavement support services.

Significance of results

Receptivity provides a frame of reference to enhance understanding of factors influencing engagement in psychosocial support in bereavement. Receptivity promotes a shift of service provider perspectives of effective supportive care to consumer-centric reasons for engagement.

Keywords

Receptivitybereavementpalliative carerural
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 2 , April 2019 , pp. 172 - 185
Copyright
Copyright © Cambridge University Press 2018 

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References

Agger, B (1991) Critical theory, Poststructuralism, postmodernism: Their sociological relevance. Annual Review of Sociology, 17(1), 105–131.Google Scholar
Alston, M and Bowles, W (1998) Research for social workers: An introduction to methods. NSW: Allen & Unwin.Google Scholar
Anderson, R and Newman, J (2005) Societal and individual determinants of medical care utilisation in the United States. The Milbank Memorial Fund Quarterly Health and Society 51(1), 95–124.Google Scholar
Australian Commission on Safety and Quality in Health Care (ACSQHC) (2017) Patient and consumer centred care. Available from https://www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care/Google Scholar
Australian Institute of Health & Welfare (AIHW) (2004) Rural, regional and remote health: A guide to remoteness classifications. (AIHW catalog number PHE 53). Canberra, ACT, Australia: AIHW. Available from http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=6442459567Google Scholar
Basen-Engquist, K, Carmack, C, Blalock, J, et al. (2012) Predictors of cancer survivors’ receptivity to life-style behavior change interventions. Abstract: American Society of Preventative Oncology (ASPO) 36th Annual Meeting. Washington, DC. Cancer Epidemiology Biomarkers Prevention 21(3), 559–560.Google Scholar
Benkel, I, Wijk, H, and Molander, U (2009) Family and friends provide most social support for the bereaved. Palliative Medicine 23(2), 141–149.Google Scholar
Bergman, E and Haley, W (2009) Depressive symptoms, social network and bereavement service utilisation and preferences among spouses of former hospice patients. Journal of Palliative Medicine 12(2): 170–176.Google Scholar
Blackburn, P, McGrath, P, and Bulsara, C (2015) Looking through the lens of receptivity and its role in bereavement support: A review of the literature. American Journal of Hospice and Palliative Medicine 33(10), 989–995.Google Scholar
Breen, L and O'Connor, M (2011) Family and social networks after bereavement: Experiences of support, change and isolation. Journal of Family Therapy 33(1), 98–120.Google Scholar
Breen, L, Aoun, S, O'Connor, M, et al. (2014) Bridging the gaps in palliative care bereavement support: An international perspective. Death Studies 38(1), 54–61.Google Scholar
Breitkopf, C, Asiedu, G, Egginton, J, et al. (2014) An investigation of the colorectal cancer experience and receptivity to family-based cancer prevention programs. Support Care Cancer, 22(9), 2517–2525.Google Scholar
Brown, B (2006) Shame resilience theory: A grounded theory study on women and shame. Families in Society: The Journal of Contemporary Social Sciences 87(1), 43–52.Google Scholar
Castleden, H, Crooks, V, Schuurman, N, et al. (2010) “It's not necessarily the distance on the map…”: Using place as an analytic tool to elucidate geographic issues central to rural palliative care. Health & Place 16(2), 284–290.Google Scholar
Chang, E, Bidewell, J, Hancock, K, et al. (2012) Community palliative care nurse experiences and perceptions of follow-up bereavement support visits to carers. International Journal of Nursing Practice 18(4), 332–339.Google Scholar
Cheers, B, Darracott, R, and Lonne, B (2007) Social care practice in rural communities. Sydney, NSW: The Federation Press.Google Scholar
Cherlin, E, Barry, C.Prigerson, H, et al. (2007) Bereavement services for family caregivers: How often used, why and why not. Journal of Palliative Medicine 10(1), 148–159.Google Scholar
Coyne, I (1997) Sampling in qualitative research. Purposeful and theoretical sampling; Merging or clear boundaries? Journal of Advanced Nursing 26(3), 623–630.Google Scholar
Davidson, B, Gillies, R, and Pelletier, A (2015). Introversion and medical student education: Challenges for both students and educators. Teaching and Learning in Medicine 27(1), 99–104.Google Scholar
Dekel, R (2010) Mental health practitioners’ experiences during the shared trauma of the forced relocation from Gush Katif. Clinical Social Work Journal 38(4), 388–396.Google Scholar
Dicicco-Bloom, B and Crabtree, B (2006) The qualitative research interview. Medical Education 40(4). 314–321.Google Scholar
Dwyer, S, and Buckle, J (2009) The space between: On being an insider-outsider in qualitative research. International Journal of Qualitative Methods 8(1), 54–63. Retrieved from https://ejournals.library.ualberta.ca/index.php/IJQM/article/view/2981.5198.Google Scholar
Dyregrov, K (2008) What types of bereavement support do the bereaved encounter and what do they want? (Chapter 3). In Dyregrov, K (ed.). Effective Grief and Bereavement Support: The Role of Family, Friends, Colleagues, Schools and Support Professionals. USA: Jessica Kingsley Publishers.Google Scholar
Erby, L, Rushto, C, and Geller, G (2006) “My son is still walking”: Stages of receptivity to discussions of advance care planning among patients of sons with Duchenne muscular dystrophy. Seminars in Pediatric Neurology 13(2), 132–140.Google Scholar
Falk, I and Kilpatrick, S (2000) What is social capital? A study of interaction in a rural community. Sociologica Ruralis 40(1), 87–110.Google Scholar
Fallowfield, L, Jenkins, V, and Beveridge, H (2002) Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine 16(4), 297–303.Google Scholar
Filmer, A (2002) The development and validation of a bereavement support program as used by remote, rural bush nursing centre. Conference Presentation: World Rural Health: International Conference: Melbourne, Australia, 1–3 May.Google Scholar
Finlay, L (2002) ‘Outing the researcher: The provenance, process, and practice of reflexivity.’ Qualitative Health Research 12(4), 531–532.Google Scholar
Gana, K and K'Delant, P (2011) The effects of temperament, character and defense mechanisms on grief severity among the elderly. Journal of Affective Disorders 128(1–2), 128–134.Google Scholar
Gergen, K (2001) Psychological science in a postmodern context. American Psychologist 56(10), 803–813.Google Scholar
Giljohann, A, Brabazon, S, Chittleborough, E, et al. (2008) Emerging challenges for rural specialist bereavement counsellors. Grief Matters: The Australian Journal of Grief and Bereavement 11(3), 84–87.Google Scholar
Gilles, M, Wakerman, J, and Durey, A (2008) “If it wasn't for OTDs, there would be no AMS”: Overseas-trained doctors working in rural and remote Aboriginal health settings. Australian Health Review 32(4), 655–663.Google Scholar
Goldberg, R and Stephenson, J (2016) Staying with the metaphor: Applying reality therapy's use of metaphors to grief counselling. Journal of Creativity in Mental Health 11(1), 105–117.Google Scholar
Goodridge, D, Quinlan, E, Venne, R, et al. (2013) Planning for serious illness by the general public: A population-based survey. ISRN Family Medicine 2013(4), 1–8.Google Scholar
Gray, S and Wilker, H (2008) Another look at bereavement groups in rural communities: Using solution-focussed brief therapy to foster resiliency. Grief Matters: The Australian Journal of Grief and Bereavement 11(3), 88–96.Google Scholar
Gray, S, Zide, M, and Wilker, H (2000) Using the solution focused brief therapy model with bereavement groups in rural communities: Resiliency at its best. Hospice Journal 15(3): 13–30.Google Scholar
Halpern, J (2014) From idealized clinical empathy to empathic communication in medical care. Medicine Health Care and Philosophy 17(2), 301–311.Google Scholar
Hancock, K, Clayton, J, Parker, S, et al. (2007). Truth-telling in discussing prognosis in advanced life-limiting illnesses: A systematic review. Palliative Medicine 21(6), 507–517.Google Scholar
Henry, G (1990) Practical sampling: Sample selection approaches. SAGE Research Methods. University of Michigan: SAGE Publications Inc.Google Scholar
Hinchman, E (2009) Receptivity and the Will. NOUS 43(3), 395–427.Google Scholar
Holdsworth, L (2015) Bereaved carers’ accounts of the end of life and the role of care providers in a ‘good death’: A qualitative study. Palliative Medicine 29(9), 834–841.Google Scholar
Holtslander, L and Duggleby, W (2010) The psychosocial context of bereavement for older women who were caregivers for a spouse with advanced cancer. Journal of Women & Aging 22(2), 109–124.Google Scholar
Hooghe, A, Neimeyer, R, and Rober, P (2011) The complexity of couple communication in bereavement: An illustrative case study. Death Studies 35(10), 905–924.Google Scholar
Howell, L, Sinicrope, P, Brockman, T, et al. (2013) Receptivity and preferences of pancreatic cancer family members for participating in lifestyle programs to reduce cancer risk. Hereditary Cancer in Clinical Practice 11(1):3, 1–9.Google Scholar
Hudson, P (2006). How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? Journal of Palliative Medicine 9(3), 694–703.Google Scholar
Kakhnovets, R (2011) Relationships among personality, expectations about counselling and help seeking attitudes. Journal of Counselling & Development 89, 11–19.Google Scholar
Kaufman, S (2014) Will the real introverts please stand up? Available from https://blogs.scientificamerican.com/beautiful-minds/will-the-real-introverts-please-stand-up/Google Scholar
Khalil, R (2016) Loud words or loud minds: A qualitative study about introverts. Advance Research Journal of Multi-Disciplinary Discoveries 2(1), 34–38.Google Scholar
Kosteniuk, J, Morgan, D, Bracken, J, et al. (2014). Adventures in rural and remoted health services innovation: The role of researcher as collaborator. Rural and Remote Health 14, 1–6.Google Scholar
Kuper, A, Lingard, L, and Levinson, W (2008) Critically appraising qualitative research. BMJ 337(7671), 687–692.Google Scholar
Lewandowski, G, Ciarocco, N, Pattenato, M, et al. (2012). Pick me up: Ego depletion and receptivity to relationship initiation. Journal of Social and Personal Relationships 29(8), 1071–1084.Google Scholar
Leys, R (2009) From Guilt to Shame: Auschwitz and After. Princeton, NJ: Princeton University Press. Retrieved from ProQuest Ebook Central, https://ebookcentral-proquest-com.ezproxy.uow.edu.au/lib/uow/detail.action?docID=483565Google Scholar
Masel, E, Kitta, A, Huber, P, et al. (2016). What makes a good palliative care physician? A qualitative study about the patient's expectations and needs when being admitted to a palliative care unit. PLOS ONE 11(7), 1–15.Google Scholar
McGrath, P, Corcoran, V, O'Malia, A, et al. (2000). An assessment of the needs of oncology outpatients for the development of allied health services. Australian Health Review 23(2), 134–151.Google Scholar
McGrath, P and Phillips, E (2008) Australian findings on Aboriginal cultural practices associated with clothing, hair, possessions and use of name of deceased persons. International Journal of Nursing Practice 14(1), 57–66.Google Scholar
McGrath, P (2013) “Receptivity”: An important factor affecting supportive care provision. Journal of Psychosocial Oncology 31(1), 30–50.Google Scholar
Milberg, A, Olsson, E, Jakobsson, M, Olsson, M and Friedrichsen, M, (2008) Family members perceived needs for bereavement follow up. Journal of Pain and Symptom Management 35(1), 58–69.Google Scholar
Mok, E and Chiu, P (2004) Nurse-patient relationships in palliative care. Journal of Advanced Nursing 48(5), 475–483.Google Scholar
Morse, J, Barrett, M, Mayan, M, et al. (2002). Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods 1(2), 13–22.Google Scholar
Namey, E, Guest, G, Thairu, L, et al. (2008) Data reduction techniques for large qualitative data sets. In Handbook for team-based qualitative research. Guest, G and MacQueen, K (eds.). AltaMira Press (pp. 137–162).Google Scholar
Neergaard, M, Olesen, F, Anderson, R, et al. (2009) Qualitative description – the poor cousin of health research? BMC Medical Research Methodology 9(52), 1–5.Google Scholar
O'Brien, A, Bloomer, M, McGrath, P, et al. (2013) Considering Aboriginal palliative care models: the challenges for mainstream services. Rural and Remote Health 13 2339, 1–10.Google Scholar
O'Connor, M, Abbot, J, Payne, S, et al. (2009) A comparison of bereavement services provided in hospice & palliative care settings in Australia, UK & USA. Progress in Palliative Care 17(2), 69–74.Google Scholar
Olsson, M (2008) Postmodernism. The SAGE Encyclopaedia of Qualitative Research. 655–659. Available from: http://dx.doi.org.ipacez.nd.edu.au/10.4135/9781412963909.n331Google Scholar
Parsons, C (1995) The impact of postmodernism on research methodology: Implications for nursing. Nursing Inquiry 2(1), 22–28.Google Scholar
Pascal, J, Johnson, N, Dickson-Swift, V, et al. (2016) Understanding receptivity to informal supportive cancer care in regional and rural Australia: A Heideggaerian analysis. European Journal of Cancer Care 25(3), 381–390.Google Scholar
Patterson, P (2009) The needs of young people who have lost a sibling or parent to cancer. CanTeen: Research Snapshot 1–7. Available from https://www.canteen.org.au/wp-content/uploads/2015/06/Research_Snapshot_Bereaved1.pdfGoogle Scholar
Phillips, M (2015) Assets and affect in the study of social capital in rural communities. Sociologica Ruralis 56(2), 220–247.Google Scholar
Polkinghorne, D (2005) Language and meaning: Data collection in qualitative research. Journal of Counselling Psychology 52(2), 137–145.Google Scholar
Prosser-Dodds, L (2013) The relationship between grief and personality: A quantitative study. (doctoral dissertation). Availalbe from https://www.researchgate.net/publication/260081247Google Scholar
Remedios, C, Thomas, K, and Hudson, P (2011) Psychosocial and bereavement support for family caregivers of palliative care patients: A review of the empirical literature. Melbourne, Australia: Centre for Palliative Care, University of Melbourne.Google Scholar
Riches, G and Dawson, P (2000) An intimate loneliness: Supporting bereaved parents and siblings. Buckingham, UK: Open University PressGoogle Scholar
Robinson, W (2006) Doubts about receptivity. Psyche 12(5).Google Scholar
Sandelowski, M (2000) Focus on research methods: Whatever happened to qualitative description? Research in Nursing & Health 23(4), 334–340.Google Scholar
Schoolman, M (2011) Situating receptivity: From critique to ‘reflective disclosure’. Philosophy & Social Criticism 37(9), 1034–1041.Google Scholar
Stark, S, Hollingsworth, H, Morgan, K, et al. (2007). Development of a measure of receptivity of the physical environment. Disability and Rehabilitation 29(2), 123–137.Google Scholar
Sullivan, G (2002) Reflexivity and subjectivity in qualitative research: The utility of a Wittgensteinian framework. Forum: Qualitative Social Research 3(3), article 20.Google Scholar
Tosone, C, Bauwens, J, and Glassman, M (2016) The shared traumatic and professional posttraumatic growth inventory. Research on Social Work Practice 26(3), 286–294.Google Scholar
Tosone, C, Lee, M, Bialkin, L, et al. (2003). Shared trauma. Psychoanalytic Social Work 10(1), 57–77.Google Scholar
Tosone, C, Nuttman-Shwartz, O, Stephens, T (2012) Shared trauma: When the professional is personal. Clinical Social Work Journal 40(2), 231–239.Google Scholar
Tomso, G (2009) On the ‘failure’ of postmodernism in medical sociology. Social Theory & Health 7(1), 55–73.Google Scholar
Trevino, K, Maciejewski, P, Epstein, A, et al. (2015) The lasting impact of the therapeutic alliance: Patient-oncologist alliance as a predictor of caregiver bereavement adjustment. Cancer 121(19), 3534–3542.Google Scholar
Whittlemore, R, Chase, S, and Mandle, C (2001) Validity in qualitative research. Qualitative Health Research 11(4), 522–537.Google Scholar
Wilkinson, S, Croy, P, King, M, et al. (2007) Are we getting it right? Parents’ perceptions of hospice child bereavement support services. Palliative Medicine 21(5), 401–407.Google Scholar
Wojnar, D and Swanson, K (2007) Phenomenology: An exploration. Journal of Holistic Nursing 25(3), 172–180.Google Scholar
Zimmer, Z and Chappell, N (1999) Receptivity to new technology among older adults. Disability and Rehabilitation 21(5–6), 222–230.Google Scholar