Health and social care professionals’ experiences of supporting parents and their dependent children during,and following,the death of a parent: A qualitative review and thematic synthesis
Restricted accessReview articleFirst published online January, 2019
Health and social care professionals’ experiences of supporting parents and their dependent children during,and following,the death of a parent: A qualitative review and thematic synthesis
Children need to be prepared for the death of a parent and supported afterwards. Parents seek support from health and social care professionals to prepare their children. Support is not always forthcoming.
Aim:
To systematically identify, analyse and synthesise literature reporting of the experiences of health and social care professionals when supporting parents and children during, and following, the death of a parent.
Design:
A systematically constructed qualitative review and thematic synthesis. Registered on Prospero (CRD42017076345).
Data sources:
MEDLINE, CINAHL, Embase, PsycINFO, PsycARTICLES and PROSPERO, searched from January 1996 to July 2018 for qualitative studies in English, containing verbatim reporting of health and social care professionals’ experiences of supporting parents and children during, and following, the death of a parent. Qualitative data were appraised using a modified Critical Appraisal Skills Programme qualitative appraisal checklist.
Results:
The search yielded 15,758 articles. Of which, 15 met the inclusion criteria. A total of 13 included professionals’ experiences of supporting parents and children before parental death. Two included experiences of supporting surviving parents and children afterwards. Three analytical themes identified as follows: (1) aspiring to deliver family-focussed care, (2) health and social care professionals’ behaviours and emotions and (3) improving connections with parents and children. Connecting empathically with parents and children to prepare and support children entails significant emotional labour. Professionals seek to enhance their confidence to connect.
Conclusion:
Professionals struggle to connect empathically with parents and their children to prepare and to support children when a parent is dying and afterwards. Awareness of professionals’ needs would enable provision of appropriate support for parents and children.
FearnleyRBolandJW.Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: a systematic review. Palliat Med2017; 31: 212–222.
2.
ClaytonJMHancockKMButowPN, et al. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust2007; 186: S77, S79, S83–S108.
AbelJKellehearA.Palliative care reimagined: a needed shift. BMJ Support Palliat Care. Epub ahead of print 31 January 2016. DOI: 10.1136/bmjspcare-2015-001009.
7.
GolsäterMHenricsonMEnskärK, et al. Are children as relatives our responsibility? How nurses perceive their role in caring for children as relatives of seriously ill patients. Eur J Oncol Nurs2016; 25: 33–39.
8.
KaridarHÅkessonHGlasdamS.A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology – the perspective of nurses. Eur J Oncol Nurs2016; 22: 23–29.
9.
KaupJHöögLCarlssonME.Care for dying patients at midlife. J Hosp Palliat Nurs2016; 18: 564–571.
10.
IranmaneshSHäggströmTAxelssonK, et al. Swedish nurses’ experiences of caring for dying people: a holistic approach. Holistic Nursing Practice2009; 23: 243–252.
11.
NICE. Improving supportive and palliative care for adults with cancer. London: NICE, 2004.
12.
OsbornT.The psychosocial impact of parental cancer on children and adolescents: a systematic review. Psycho-Oncol2007; 16: 101–126.
13.
NiemeläMPaananenRHakkoH, et al. Mental disorder diagnoses of offspring affected by parental cancer before early adulthood: the 1987 Finnish Birth Cohort study. Psycho-Oncol2016; 25: 1477–1484.
14.
ForrestGPlumbCZieblandS, et al. Breast cancer in the family – children’s perceptions of their mother’s cancer and its initial treatment: qualitative study. BMJ2006; 332: 998–1003.
15.
ForrestGPlumbCZieblandS, et al. Breast cancer in young families: a qualitative interview study of fathers and their role and communication with their children following the diagnosis of maternal breast cancer. Psycho-oncol2009; 18: 96–103.
16.
MorrisJNMartiniAPreenD.The well-being of children impacted by a parent with cancer: an integrative review. Support Care Cancer2016; 24: 3235–3251.
17.
MacPhersonC.Telling children their ill parent is dying: a study of the factors influencing the well parent. Mortality2005; 10: 113–126.
18.
ElmbergerEBolundCLützénK.Experience of dealing with moral responsibility as a mother with cancer. Nurs Ethics2005; 12: 253–262.
19.
FearnleyR.Supporting children when a parent has a life-threatening illness: the role of the community practitioner. Community Practitioner2012; 85: 22–25.
20.
ClipshamLIslamZFaullC.Experiences of hospice inpatient nurses in supporting children before the death of a parent. Int J Palliat Nurs2015; 21: 453–459.
21.
TurnerJClavarinoAYatesP, et al. Oncology nurses’ perceptions of their supportive care for parents with advanced cancer: challenges and educational needs. Psycho-Oncol2007; 16: 149–157.
22.
PunzianoACPireddaMMastroianniC, et al. Health professional’s experiences of supporting teenagers who have lost a parent. J Hosp Palliat Nurs2017; 19: 415–423.
23.
VisserAHuizingaGAvan der GraafWTA, et al. The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev2004; 30: 683–694.
24.
EllisSJWakefieldCEAntillG, et al. Supporting children facing a parent’s cancer diagnosis: a systematic review of children’s psychosocial needs and existing interventions. Eur J Cancer Care2016; 26: e12432.
25.
InhesternLHallerA-CWlodarczykO, et al. Psychosocial interventions for families with parental cancer and barriers and facilitators to implementation and use – a systematic review. PLoS One2016; 11: e0156967.
26.
DunneKSullivanKKernohanG.Palliative care for patients with cancer: district nurses’ experiences. J Adv Nurs2005; 50: 372–380.
27.
ArberAOdeliusA.Experiences of oncology and palliative care nurses when supporting parents who have cancer and dependent children. Cancer Nurs2018; 41: 248–254.
28.
DavisSKristjansonLJBlightJ.Communicating with families of patients in an acute hospital with advanced cancer: problems and strategies identified by nurses. Cancer Nurs2003; 26: 337–345.
29.
TongAFlemmingKMcInnesE, et al. Enhancing Transparency in Reporting the Synthesis of Qualitative Research: ENTREQ. BMC Med Res Methodol2012; 12: 181.
30.
FranklinPArberAReedL.The experiences of Health and Social Care Professionals when supporting parents, and dependent children, during and following, the death of a parent: a qualitative review an thematic synthesis. PROSPERO, CRD420107076345. https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=76345. York: University of York, 2017.
31.
PapadopoulouCJohnstonBThemessl-HuberM.The experience of acute leukaemia in adult patients: a qualitative thematic synthesis. Eur J Oncol Nurs2013; 17: 640–648.
32.
ThomasJHardenA.Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol2008; 8: 45.
WordenJW.Children and grief: when a parent dies. New York: Guilford Press, 1996.
36.
ChristGHSiegelKFreundB, et al. Impact of parental terminal cancer on latency-age children. Am J Orthopsychiatry1993; 63: 417–425.
37.
ChristGSiegelK.Parental death: a preventive intervention. In: SennH-JGlausA (eds) Supportive care in cancer patients II. New York: Springer, 1991, pp. 426–431.
38.
BealeEASivesindDBrueraE.Parents dying of cancer and their children. Palliat Support Care2004; 2: 387–393.
39.
ChristGHChristAE.Current approaches to helping children cope with a parent’s terminal illness. CA Cancer J Clin2006; 56: 197–212.
40.
SaldingerACainAPorterfieldK.Managing traumatic stress in children anticipating parental death. Psychiatry2003; 66: 168–181.
41.
ChownsG.‘No, you don’t know how we feel’: groupwork with children facing parental loss. Groupwork2008; 18: 14–37.
Dixon-WoodsMSuttonAShawR, et al. Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J Health Serv Res Policy2007; 12: 42–47.
47.
CarrollCBoothALloyd-JonesM.Should we exclude inadequately reported studies from qualitative systematic reviews? An evaluation of sensitivity analyses in two case study reviews. Qual Health Res2012; 22: 1425–1434.
48.
BoothA.Searching for qualitative research for inclusion in systematic reviews: a structured methodological review. Syst Rev2016; 5: 74.
49.
WilkesLMBealeB.Palliative care at home: stress for nurses in urban and rural New South Wales, Australia. Int J Nurs Pract2001; 7: 306–313.
50.
QuinnB.Exploring nurses’ experiences of supporting a cancer patient in their search for meaning. Eur J Oncol Nurs2003; 7: 164–171.
51.
DenckerARixBABøgeP, et al. A qualitative study of doctors’ and nurses’ barriers to communicating with seriously ill patients about their dependent children. Psycho-Oncol2017; 26: 2162–2167.
52.
StajduharKMartinWCairnsM.What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients. Palliat Support Care2010; 8: 277–289.
53.
FearnleyRF. A lonely place to be: children’s experiences of living with a parent who is dying. Derby: University of Derby.
54.
BaillieL.A phenomenological study of the nature of empathy. J Adv Nurs1996; 24: 1300–1308.
55.
GelsoCJHayesJA.The psychotherapy relationship: theory, research, and practice. Hoboken, NJ: John Wiley & Sons, 1998.
56.
StevensonAT.Compassion and patient centred care. Aust Fam Physician2002; 31: 1103–1106.
57.
StevensonFACoxKBrittenN, et al. A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance. Health Expect2004; 7: 235–245.
58.
ReevesA.Emotional intelligence: recognizing and regulating emotions. AAOHN J2005; 53: 172–176.
59.
HochschildAR.The managed heart (eds A Jaggar and P Rothenburg). Berkeley, CA: University of California Press, 1983, p. 3.
60.
HochschildAR.The managed heart: commercialization of human feeling. Berkeley, CA: University of California Press, 2012.
61.
SmithP. The emotional labour of nursing revisited: can nurses still care?Hoboken, NJ: Palgrave Macmillan, 2011.
62.
SmithP. 1992The emotional labour of nursing: its impact on interpersonal relations, management and the educational environment in nursing. Basingstoke: Macmillan Education.
63.
MenziesIE.A case-study in the functioning of social systems as a defence against anxiety: a report on a study of the nursing service of a general hospital. Hum Relat1960; 13: 95–121.
64.
SöderbergAGiljeFNorbergA.Transforming desolation into consolation: the meaning of being in situations of ethical difficulty in intensive care. Nurs Ethics1999; 6: 357–373.
65.
RankinJM.The rhetoric of patient and family centred care: an institutional ethnography into what actually happens. J Adv Nurs2015; 71: 526–534.
66.
BridgesJNicholsonCMabenJ, et al. Capacity for care: meta-ethnography of acute care nurses’ experiences of the nurse-patient relationship. J Adv Nurs2013; 69: 760–772.
67.
TurnerJClavarinoAYatesP, et al. Enhancing the supportive care of parents with advanced cancer: development of a self-directed educational manual. Eur J Cancer2008; 44: 1625–1631.
68.
GrantLSanghaAListerS, et al. Cancer and the family: assessment, communication and brief interventions – the development of an educational programme for healthcare professionals when a parent has cancer. BMJ Support Palliat Care2016; 6: 493–499.
69.
TurnerJClavarinoAButowP, et al. Enhancing the capacity of oncology nurses to provide supportive care for parents with advanced cancer: evaluation of an educational intervention. Eur J Cancer2009; 45: 1798–1806.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
