Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-13T03:03:37.542Z Has data issue: false hasContentIssue false
  • English
  • Français

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Published online by Cambridge University Press:  03 November 2020

Laurie McKibben Open the ORCID record for Laurie McKibben [Opens in a new window] ,
Kevin Brazil ,
Dorry McLaughlin  and
Peter Hudson
Laurie McKibben*
Affiliation:
School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK
Kevin Brazil
Affiliation:
School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK
Dorry McLaughlin
Affiliation:
School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK
Peter Hudson
Affiliation:
Centre for Palliative Care, St Vincent's Hospital and the University of Melbourne, Melbourne, Australia
*
Author for correspondence: Laurie McKibben, School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK. E-mail: lturner12@qub.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.

Methods

A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6).

Results

Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.

Significance of results

New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

Keywords

Family caregiversInformation needsIntellectual disabilityPalliative careQualitative study
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 4 , August 2021 , pp. 405 - 414
Check for updates
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Beaver, K and Witham, G (2007) Information needs of the informal carers of women treated for breast cancer. European Journal of Oncology Nursing 11, 16–25.CrossRefGoogle ScholarPubMed
Beck, AM and Konnert, CA (2007) Ethical issues in the study of bereavement: The opinions of bereaved adults. Death Studies 31, 783–799.CrossRefGoogle Scholar
Bee, PE, Barnes, P and Luker, KA (2009) A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing 18, 1379–1393.CrossRefGoogle ScholarPubMed
Bekkema, N, de Veer, AJE, Hertogh, CMPM, et al. (2015) “From activating towards caring”: Shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians. BMC Palliative Care 14, 1–10.CrossRefGoogle Scholar
Bentley, B and O'Connor, M (2014) Conducting research interviews with bereaved family carers: When do we ask?’ Journal of Palliative Medicine 18, 241–245.CrossRefGoogle Scholar
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.CrossRefGoogle Scholar
Carers UK (2012) 2011 Census Figures England, Wales and Northern Ireland. Available at: https://www.carersuk.org/for-professionals/policy/policy-library/2011-census-figures-england-and-walesGoogle Scholar
Carers UK (2019) Facts about Carers. Available at: https://www.carersuk.org/images/Facts_about_Carers_2019.pdfGoogle Scholar
Carlander, I, Sahlberg-Blom, E, Hellström, I, et al. (2011) The modified self: Family caregivers’ experiences of caring for a dying family member at home. Journal of Clinical Nursing 20, 1097–1105.CrossRefGoogle ScholarPubMed
Department of Health (2008) Carers at the Heart of 21st-Century Families and Communities: “A Caring System on Your Side. A Life of Your Own”. London: Department of Health and HM Government.Google Scholar
Department of Health, Social Services and Public Safety (2010) Living Matters: Dying Matters. A Palliative and End of Life Care Strategy for Adults in Northern Ireland. Northern Ireland Supportive and Palliative Care Network. London: DHSSPS.Google Scholar
Dikkers, MF, Dunning, T and Savage, S (2013) Information needs of family carers of people with diabetes at the end of life: A literature review. Journal of Palliative Medicine 16, 1617–1623.CrossRefGoogle Scholar
Docherty, A, Owens, A, Asadi-Lari, M, et al. (2008) Knowledge and information needs of informal caregivers in palliative care: A qualitative systematic review. Palliative Medicine 22, 153–171.CrossRefGoogle ScholarPubMed
Donetto, S, Tsianakas, V and Robert, G (2014) Using Experience- Based Co-Design (EBCD) to Improve the Quality of Healthcare: Mapping Where We Are Now and Establishing Future Directions (Final Report). London: National Nursing Research Unit.Google Scholar
Eysenbach, G (2000) Consumer health informatics. British Medical Journal 320, 1713–1716.CrossRefGoogle ScholarPubMed
Fukui, S (2002) Information needs and the related characteristics of Japanese family caregivers of newly diagnosed patients with cancer. Cancer Nursing 25, 181–186.CrossRefGoogle ScholarPubMed
Grant, M, Sun, V, Fujinami, R, et al. (2013) Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer. Oncology Nursing Forum 40, 337–346.CrossRefGoogle ScholarPubMed
Harrop, E, Byrne, A and Nelson, A (2014) “It's alright to ask for help”: Findings from a qualitative study exploring the information and support needs of family carers at the end of life. BMC Palliative Care 13, 1–22.CrossRefGoogle Scholar
Hudson, P, Trauer, T, Kelly, B, et al. (2013) Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomised controlled trial. Psycho-Oncology 22, 1987–1993.CrossRefGoogle ScholarPubMed
Janze, A and Henriksson, A (2014) Preparing for palliative caregiving as a transition in the awareness of death: Family carer experiences. International Journal of Palliative Nursing 20, 494–501.CrossRefGoogle ScholarPubMed
Kaltenbaugh, DJ, Klem, ML, Hu, L, et al. (2015) Using web-based interventions to support caregivers of patients with cancer: A systematic review. Oncology Nursing Forum 42, 156–164.CrossRefGoogle ScholarPubMed
Kirkendall, AM, Waldrop, D and Moone, R (2012) Caring for people with intellectual disabilities and life-limiting illness: Merging person-centered planning and patient-centered. Family-Focused Care. Journal of Social Work in End-of-Life and Palliative Care 8, 135–150.CrossRefGoogle ScholarPubMed
Koffman, J, Higginson, IJ, Hall, S, et al. (2012) Bereaved relatives’ views about participating in cancer research. Palliative Medicine 26, 379–383.CrossRefGoogle ScholarPubMed
Lazarus, RS and Folkman, S (1984) Stress, Appraisal, and Coping. New York: Springer Publishing Company.Google Scholar
Leadership Alliance for the Care of Dying People (LACDP) (2014) One Chance to Get it Right. London, UK: LACDP.Google Scholar
Lewis, LF (2014) Caregivers’ experiences seeking hospice care for loved ones with dementia. Qualitative Health Research 24, 1221–1231.CrossRefGoogle ScholarPubMed
Lin, WC and Tsao, CJ (2004) Information needs of family caregivers of terminal cancer patients in Taiwan. American Journal of Hospice & Palliative Medicine 21, 438–444.CrossRefGoogle ScholarPubMed
Mackenzie, N and Knipe, S (2006) Research dilemmas: Paradigms, methods and methodology. Issues in Educational Research 16, 1–10.Google Scholar
McKibben, L (2019) Exploring the value of reflexivity in learning disability research. Learning Disability Practice. doi: 10.7748/ldp.2019.e1977CrossRefGoogle Scholar
McKibben, L, Brazil, K, Hudson, P, et al. (2019) Informational needs of family caregivers of people with intellectual disability who require palliative care: A two phase integrative review of the literature. International Journal of Palliative Nursing 25, 4–18.CrossRefGoogle ScholarPubMed
McLaughlin, D, Barr, O, McIlfatrick, S, et al. (2014a) Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities. BMJ Supportive & Palliative Care 5, 1–7.Google Scholar
McLaughlin, D, Barr, O, McIlfatrick, S, et al. (2014b) Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: A mixed methods study. Palliative Medicine 28, 1213–1221.CrossRefGoogle Scholar
Mertens, D (2005) Research and Evaluation in Education and Psychology, 2nd ed. Thousand Oaks, CA: Sage.Google Scholar
Mertens, D (2009) Transformative Research and Evaluation. New York: Guildford Press.Google Scholar
Michael, J (2008) Healthcare for all: Report of the independent inquiry into access to healthcare for people with learning disabilities. London: NHS.CrossRefGoogle Scholar
Parker, SM, Clayton, JM, Hancock, K, et al. (2007) A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content. Style, and Timing of Information. Journal of Pain & Symptom Management 34, 81–93.CrossRefGoogle ScholarPubMed
Philip, J, Gold, M, Brand, C, et al. (2014) Facilitating change and adaption: The experiences of current and bereaved carers of patients with severe chronic obstructive pulmonary disease. Journal of Palliative Medicine 17, 421–427.CrossRefGoogle Scholar
Reiss, S, Levitan, GW and Szyszko, J (1982) Emotional disturbance and mental retardation: diagnostic overshadowing. American Journal of Mental Deficiency 87, 369–402.Google Scholar
Rose, KE (1999) A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing 8, 81–88.CrossRefGoogle ScholarPubMed
St Oswald's Hospice (2015) Disability Distress Assessment Tool (DisDAT). Newcastle upon Tyne: St Oswald's Hospital and Northumberland Tyne and Wear NHS Trust. Available at: https://www.stoswaldsuk.org/how-we-help/we-educate/education/resources/disability-distress-assessment-tool-disdat/Google Scholar
Sunderland People First (2008) When I Die. Available at: https://www.pcpld.org/wp-content/uploads/when_i_die_2_0.pdfGoogle Scholar
The Learning Disability Mortality Review (LeDeR) and University of Bristol (2019) Annual Report 2018. Available at: https://www.bristol.ac.uk/media-library/sites/sps/leder/LeDeR_Annual_Report_2018%20published%20May%202019.pdfGoogle Scholar
Tong, A, Sainsbury, P and Craig, J (2007) Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19, 349–357.CrossRefGoogle ScholarPubMed
Towers, C and Glover, C (2015) Talking Together: Facilitating Peer Support Activities to Help People With Learning Disabilities Understand About Growing Older and Living With Dementia. London: Foundation for People with Learning Disabilities, pp. 1–56.Google Scholar
Tuffrey-Wijne, I and Mclaughlin, D (2015) Consensus Norms for Palliative Care of People with Intellectual Disabilities in Europe EAPC White Paper Taskforce on People with Intellectual Disabilities Consensus Norms for Palliative Care of People with. London: EAPC.Google Scholar
Tuffrey-Wijne, I, McLaughlin, D, Curfs, L, et al. (2016) Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A white paper from the European association of palliative care. Palliative Medicine 30, 446–455.CrossRefGoogle Scholar
University of Wisconsin-Extension (2003) Enhancing Programme Performance with Logic Models. Available at: https://fyi.uwex.edu/programdevelopment/files/2016/03/lmcourseall.pdfGoogle Scholar
University of Wisconsin-Extension (2016) Program Development and Evaluation: Logic Models. http://fyi.uwex.edu/programdevelopment/logic-models/Google Scholar
Vrijmoeth, C, Barten, P, Assendelft, WJJ, et al. (2016) Physicians’ identification of the need for palliative care in people with intellectual disabilities. Research in Developmental Disabilities 59, 55–64.CrossRefGoogle ScholarPubMed
Supplementary material: File

McKibben et al. supplementary material

Appendix 1

Download McKibben et al. supplementary material(File)
File 14.8 KB
Supplementary material: File

McKibben et al. supplementary material

Appendix 2

Download McKibben et al. supplementary material(File)
File 39 KB