Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-27T12:42:48.112Z Has data issue: false hasContentIssue false
  • English
  • Français

Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention

Published online by Cambridge University Press:  03 May 2017

Anette Alvariza ,
Kristofer Årestedt ,
Kurt Boman  and
Margareta Brännström
Anette Alvariza*
Affiliation:
Department of Health Care Sciences and Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden Capio Palliative Care, Dalen Hospital, Stockholm, Sweden
Kristofer Årestedt
Affiliation:
Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden Department of Research, Kalmar County Hospital, Kalmar, Sweden
Kurt Boman
Affiliation:
Research Unit Skellefteå, Department of Medicine, Umeå University, Sweden Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden The Arctic Research Centre, Umeå University, Umeå, Sweden
Margareta Brännström
Affiliation:
The Arctic Research Centre, Umeå University, Umeå, Sweden Department of Nursing, Campus Skellefteå, Umeå University, Sweden
*
Address correspondence and reprint requests to: Anette Alvariza, Ersta Sköndal University College/Palliative Research Centre/Department of Health Care Sciences, Box 11189, 10061 Stockholm, Sweden. E-mail: anette.alvariza@esh.se.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III–IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

Method:

This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

Results:

Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

Significance of results:

Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

Keywords

Family membersHeart failureInterventionPalliative careQualitative
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 3 , June 2018 , pp. 278 - 285
Copyright
Copyright © Cambridge University Press 2017 

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

Brännström, M. & Boman, K. (2014). Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: A randomized controlled study. European Journal of Heart Failure, 16(10), 1142–1151.Google Scholar
Brännström, M., Ekman, I., Boman, K., et al. (2007). Being a close relative of a person with severe, chronic heart failure in palliative advanced home care: A comfort but also a strain. Scandinavian Journal of Caring Sciences, 21(3), 338–344.CrossRefGoogle ScholarPubMed
Cleland, J.G., Mcdonagh, T., Rigby, A.S., et al. (2011). The National Heart Failure Audit for England and Wales 2008–2009. Heart, 97(11), 876–886. Epub ahead of print Dec 20, 2011.Google Scholar
Dracup, K., Evangelista, L.S., Doering, L., et al. (2004). Emotional well-being in spouses of patients with advanced heart failure. Heart & Lung, 33(5), 354–361.Google Scholar
Evangelista, L.S., Lombardo, D., Malik, S., et al. (2012). Examining the effects of an outpatient palliative care consultation on symptom burden, depression, and quality of life in patients with symptomatic heart failure. Journal of Cardiac Failure, 18(12), 894–899. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3931304/.Google Scholar
Evangelista, L.S., Liao, S., Motie, M., et al. (2014). On-going palliative care enhances perceived control and patient activation and reduces symptom distress in patients with symptomatic heart failure: A pilot study. European Journal of Cardiovascular Nursing, 13(2), 116–123. Epub ahead of print Jan 17. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455924/.Google Scholar
Evangelista, L.S., Stromberg, A. & Dionne-Odom, J.N. (2016). An integrated review of interventions to improve psychological outcomes in caregivers of patients with heart failure. Current Opinion in Supportive and Palliative Care, 10(1), 24–31. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760617/.CrossRefGoogle ScholarPubMed
Gadoud, A., Jenkins, S.M. & Hogg, K.J. (2013). Palliative care for people with heart failure: Summary of current evidence and future direction. Palliative Medicine, 27(9), 822–828.Google Scholar
Henriksson, A. & Andershed, B. (2007). A support group programme for relatives during the late palliative phase. International Journal of Palliative Nursing, 13(4), 175–183.CrossRefGoogle ScholarPubMed
Henriksson, A., Arestedt, K., Benzein, E., et al. (2013). Effects of a support group programme for patients with life-threatening illness during ongoing palliative care. Palliative Medicine, 27(3), 257–264. Epub ahead of print May 4, 2012.Google Scholar
Holm, M., Arestedt, K., Carlander, I., et al. (2015 a). Short-term and long-term effects of a psychoeducational group intervention for family caregivers in palliative home care: Results from a randomized control trial. Psycho-Oncology, 25(7), 795–802. Epub ahead of print Oct 9.Google Scholar
Holm, M., Carlander, I., Fürst, C.J., et al. (2015 b). Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspectives of health professionals and family caregivers. BMC Palliative Care, 14, 16.CrossRefGoogle Scholar
Hopp, F.P., Zalenski, R.J., Waselewsky, D., et al. (2016). Results of a hospital-based palliative care intervention for patients with an acute exacerbation of chronic heart failure. Journal of Cardiac Failure, 22(12), 1033–1036. Epub ahead of print Apr 11.Google Scholar
Hudson, P., Quinn, K., Kristjanson, L., et al. (2008). Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care. Palliative Medicine, 22(3), 270–280.Google Scholar
Jaarsma, T., Beattie, J.M., Ryder, M., et al. (2009). Palliative care in heart failure: A position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. European Journal of Heart Failure, 11(5), 433–443. Available from http://onlinelibrary.wiley.com/doi/10.1093/eurjhf/hfp041/full.CrossRefGoogle ScholarPubMed
Janssen, D.J., Spruit, M.A., Uszko-Lencer, N.H., et al. (2011). Symptoms, comorbidities, and health care in advanced chronic obstructive pulmonary disease or chronic heart failure. Journal of Palliative Medicine, 14(6), 735–743. Epub ahead of print Apr 21.Google Scholar
Kavalieratos, D., Mitchell, E.M., Carey, T.S., et al. (2014). “Not the ‘grim reaper service’ ”: An assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. Journal of the American Heart Association, 3(1), e000544. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959712/.Google Scholar
Luttik, M.L., Jaarsma, T., Veeger, N.J., et al. (2005). For better and for worse: Quality of life impaired in HF patients as well as in their partners. European Journal of Cardiovascular Nursing, 4(1), 11–14.Google Scholar
Luttik, M.L., Jaarsma, T., Veeger, N., et al. (2007). Caregiver burden in partners of heart failure patients: Limited influence of disease severity. European Journal of Heart Failure, 9(6–7), 695–701. Epub ahead of print Mar 7. Available from http://onlinelibrary.wiley.com/doi/10.1016/j.ejheart.2007.01.006/full.Google Scholar
Markgren, R., Brännström, M., Lundgren, C., et al. (2016). Impacts of person-centred integrated chronic heart failure and palliative home care on pharmacological heart failure treatment: A substudy of a randomised trial. BMJ Supportive & Palliative Care, 20, pii: bmjspcare-2015-000894. Epub ahead of print.Google Scholar
Morrison, R.S. & Meier, D.E. (2011). The National Palliative Care Research Center and the Center to Advance Palliative Care: A partnership to improve care for persons with serious illness and their families. Journal of Pediatric Hematology/Oncology, 33(Suppl. 2), S126–S131.Google Scholar
Öhlen, J., Andershed, B., Berg, C., et al. (2007). Relatives in end-of-life care, part 2: A theory for enabling safety. Journal of Clinical Nursing, 16(2), 382–390.Google Scholar
Patton, M.Q. (2002). Qualitative Research and Evaluation Methods. Thousand Oaks, CA: Sage Publications.Google Scholar
Pressler, S.J., Gradus-Pizlo, I., Chubinski, S.D., et al. (2013). Family caregivers of patients with heart failure: A longitudinal study. The Journal of Cardiovascular Nursing, 28(5), 417–428.CrossRefGoogle ScholarPubMed
Sahlen, K.G., Boman, K. & Brännström, M. (2016). A cost-effectiveness study of person-centered integrated heart failure and palliative home care: Based on a randomized controlled trial. Palliative Medicine, 30(3), 296–302. Epub ahead of print Nov 24, 2015.Google Scholar
Siouta, N., Van Beek, K., Preston, N., et al. (2016). Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: A systematic literature review of European guidelines and pathways. BMC Palliative Care, 15, 18.Google Scholar
Stromberg, A. & Luttik, M.L. (2015). Burden of caring: Risks and consequences imposed on caregivers of those living and dying with advanced heart failure. Current Opinion in Supportive and Palliative Care, 9(1), 26–30.CrossRefGoogle ScholarPubMed
Sullivan, B.J., Marcuccilli, L., Sloan, R., et al. (2016). Competence, compassion, and care of the self: Family caregiving needs and concerns in heart failure. Journal of Cardiovascular Nursing, 31(3), 209–214.Google Scholar
World Health Organization (2002). National Cancer Control Programmes: Policies and Managerial Guidelines, 2nd ed. Geneva: World Health Organization. Available from http://www.who.int/cancer/media/en/408.pdf.Google Scholar
Wong, F.K., Ng, A.Y., Lee, P.H., et al. (2016). Effects of a transitional palliative care model on patients with end-stage heart failure: A randomized controlled trial. Heart, 17, 173. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4815195/.Google Scholar