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Self-perceived Burden for People With Life-threatening Illness: A Qualitative Systematic Review

      Abstract

      Context

      The perception of being a burden to others is a significant concern for people with life-threatening illness. It is unclear what underpins the concept of “self-perceived burden”.

      Objectives

      To appraise and integrate primary evidence underpinning the concept of self-perceived burden (SPB) with respect to their informal caregivers among adult patients with life-threatening illness.

      Methods

      This is a systematic review and a thematic synthesis of qualitative primary data. MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science were searched in September 2021, supplemented by hand searching of textbooks and web search engines, peer-review journals, and contact with experts. Qualitative studies were included if they provided primary data of adult patients’ (with life-limiting illness) SPB toward their informal caregivers. Studies were appraised using the Critical Appraisal Skills Programme checklist.

      Results

      Nine studies were included, reporting on 219 patients who mostly had advanced life-threatening illness and needed physical assistance for daily activities. SPB is a highly subjective perception contrasting self and/or informal caregivers in the past, present, and future. Patients develop SPB feeling uncertain about caregivers’ perceptions and increasing future burden. SPB interacts with other factors of surrounding complex balances (such as care needs, reality, and identity) which would change over time, and patients’ reactions to SPB at the sacrifice of their wishes may conversely increase the total suffering.

      Conclusion

      SPB is not a static perception but a fluctuating and complex ‘process’ based on uncertainty. More diverse understandings and following interventions to achieve a better balance of care should be sought.

      Key Words

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      References

        • Chochinov HM
        • Kristjanson LJ
        • Hack TF
        • et al.
        Burden to others and the terminally ill.
        J Pain Symptom Manage. 2007; 34: 463-471
        • Bausewein C
        • Calanzani N
        • Daveson BA
        • et al.
        “Burden to others” as a public concern in advanced cancer: a comparative survey in seven European countries.
        BMC Cancer. 2013; 13105
        • Adelman RD
        • Tmanova LL
        • Delgado D
        • et al.
        Caregiver burden: a clinical review.
        JAMA - J Am Med Assoc. 2014; 311: 1052-1059
        • Ullrich A
        • Ascherfeld L
        • Marx G
        • et al.
        Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients.
        BMC Palliat Care. 2017; 16: 1-10
        • Sheehy-Skeffington B
        • McLean S
        • Bramwell M
        • et al.
        Caregivers experiences of managing medications for palliative care patients at the end of life: a qualitative study.
        Am J Hosp Palliat Med. 2014; 31: 148-154
        • Leroy T
        • Fournier E
        • Penel N
        • et al.
        Crossed views of burden and emotional distress of cancer patients and family caregivers during palliative care.
        Psychooncology. 2016; 25: 1278-1285
        • Cousineau N
        • McDowell I
        • Hotz S
        • et al.
        Measuring chronic patients’ feelings of being a burden to their caregivers.
        Med Care. 2003; 41: 110-118
        • McPherson CJ
        • Wilson KG
        • Murray MA.
        Feeling like a burden: exploring the perspectives of patients at the end of life.
        Soc Sci Med. 2007; 64: 417-427
        • Wilson KG
        • Curran D
        • McPherson CJ.
        A burden to others: a common source of distress for the terminally ill.
        Cogn Behav Ther. 2005; 34: 115-123
        • McPherson CJ
        • Wilson KG
        • Lobchuk MM
        • et al.
        Self-perceived burden to others: patient and family caregiver correlates.
        J Palliat Care. 2007; 23: 135-142
        • Ting CY
        • Teh GC
        • Yu KL
        • et al.
        Self-perceived burden and its associations with health-related quality of life among urologic cancer patients.
        Eur J Cancer Care (Engl). 2020; 29: 1-12
        • Ren H
        • Liu C
        • Li J
        • et al.
        Self-perceived burden in the young and middle-aged inpatients with stroke: a cross-sectional survey.
        Rehabil Nurs. 2016; 41: 101-111
        • Wei Y
        • Ren X
        • Su X
        • et al.
        Predictors and changes of self-perceived burden among stroke survivors: a 3-month follow-up study.
        Front Neurol. 2020; 11: 1-7
        • McPherson CJ
        • Wilson KG
        • Leclerc C
        • et al.
        The balance of give and take in caregiver-partner relationships: an examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.
        Rehabil Psychol. 2010; 55: 194-203
        • Geng D
        • Ou R
        • Miao X
        • et al.
        Patients’ self-perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.
        J Clin Nurs. 2017; 26: 3188-3199
        • Tang ST
        • Hsieh CH
        • Chiang MC
        • et al.
        Impact of high self-perceived burden to others with preferences for end-of-life care and its determinants for terminally ill cancer patients: a prospective cohort study.
        Psychooncology. 2017; 26: 102-108
        • Tang ST
        • Hsieh CH
        • Chiang MC
        • et al.
        Impact of high self-perceived burden to others with preferences for end-of-life care and its determinants for terminally ill cancer patients: a prospective cohort study.
        Psychooncology. 2016; 26: 102-108
        • McPherson CJ
        • Wilson KG
        • Murray MA.
        Feeling like a burden to others: a systematic review focusing on the end of life.
        Palliat Med. 2007; 21: 115-128
        • Rodríguez-prat A
        • Balaguer A
        • Crespo I
        • et al.
        Feeling like a burden to others and the wish to hasten death in patients with advanced illness: a systematic review.
        Bioethics. 2019; 33: 411-420
        • Tong A
        • Flemming K
        • McInnes E
        • et al.
        Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.
        BMC Med Res Methodol. 2012; 12: 1-8
        • Thomas J
        • Harden A
        Methods for the thematic synthesis of qualitative research in systematic reviews.
        BMC Med Res Methodol. 2008; 8: 1-10
        • Flemming K
        • Noyes J.
        Qualitative evidence synthesis: where are we at?.
        Int J Qual Methods. 2021; 20: 1-13
        • Cooke A
        • Smith D
        • Booth A.
        Beyond PICO: The SPIDER tool for qualitative evidence synthesis.
        Qual Health Res. 2012; 22: 1435-1443
        • Sleeman KE
        • de Brito M
        • Etkind S
        • et al.
        The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions.
        Lancet Glob Heal. 2019; 7: e883-e892
        • Harding R.
        Informal caregivers in home palliative care.
        Prog Palliat Care. 2013; 21: 229-231
      1. CASP CHECKLISTS. Critical appraisal skills program (CASP). Available at: https://casp-uk.net/casp-tools-checklists/. Accessed October 20, 2021.

        • Long HA
        • French DP
        • Brooks JM.
        Optimising the value of the critical appraisal skills programme (CASP) tool for quality appraisal in qualitative evidence synthesis.
        Res Methods Med Heal Sci. 2020; 1: 31-42
        • Ando H
        • Cousins R
        • Young CA
        Exploring and addressing “concerns” for significant others to extend the understanding of quality of life with amyotrophic lateral sclerosis: a qualitative study.
        J Cent Nerv Syst Dis. 2019; 11: 1-10
        • Ashby M
        • C op't H
        • Kellehear A
        • et al.
        Renal dialysis abatement: lessons from a social study.
        Palliat Med. 2005; 19: 389-396
        • Broom A
        • Kirby E.
        The end of life and the family: hospice patients’ views on dying as relational.
        Sociol Heal Ill. 2013; 35: 499-513
        • Foley G
        • Timonen V
        • Hardiman O.
        “I hate being a burden”: the patient perspective on carer burden in amyotrophic lateral sclerosis.
        Amyotroph Lateral Scler Frontotemporal Degener. 2016; 17: 351-357
        • Foley G
        • Timonen V
        • Hardiman O.
        Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective.
        Qual Health Res. 2014; 24: 67-77
        • Gudat H
        • Ohnsorge K
        • Streeck N
        • et al.
        How palliative care patients’ feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families.
        Bioethics. 2019; 33: 421-430
        • MacArtney JI
        • Broom A
        • Kirby E
        • et al.
        Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying.
        Sociol Health Illn. 2016; 38: 479-492
        • Oeki M
        • Takase M.
        Coping strategies for self-perceived burden among advanced cancer patients.
        Cancer Nurs. 2020; 43: E349-E355
        • McKechnie R
        • MacLeod R
        • McKechnie R
        • MacLeod R
        • Keeling S.
        Facing uncertainty: the lived experience of palliative care.
        Palliat Support Care. 2007; 5: 255-264
        • Plsek PE
        • Greenhalgh T
        The challenge of complexity in health care.
        Br Med J. 2001; 323: 625-628
        • Tuca A
        • Gómez-Martínez M
        • Prat A.
        Predictive model of complexity in early palliative care: a cohort of advanced cancer patients (PALCOM study).
        Support Care Cancer. 2018; 26: 241-249
        • Pask S
        • Pinto C
        • Bristowe K
        • et al.
        A framework for complexity in palliative care: a qualitative study with patients, family carers and professionals.
        Palliat Med. 2018; 32: 1078-1090
        • Khan S
        • Vandermorris A
        • Shepherd J
        • et al.
        Embracing uncertainty, managing complexity: applying complexity thinking principles to transformation efforts in healthcare systems.
        BMC Health Serv Res. 2018; 18: 1-8