Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review

Abstract

Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.

Appendix

PubMed (1809-present)

“psychosocial need” [tiab] or “psychosocial needs” [tiab] or anxiety [Mesh] or anxiety [tiab] or distress [tiab] or depression [Mesh] or depression [tiab] or social isolation [Mesh] or isolation [tiab] or loneliness [tiab] or lonely [tiab] or fatigue [Mesh] or fatigue [tiab] or tired [tiab] or tiredness [tiab] or pain [Mesh] or pain [tiab] or “spiritual wellbeing” [tiab] or “spiritual well-being” [tiab] or wellbeing [tiab] or well-being [tiab] or nervous* [tiab] or worr* [tiab] or post- traumatic stress disorders [Mesh] or PTSD [tiab] “post-traumatic stress” [tiab] or agitat* [tiab] or trauma [Mesh] or trauma [tiab] or “social participation” [tiab] or relationship*[tiab] or interaction* [tiab] or “social support” [tiab] or communication* [tiab] or grief [Mesh] or grief [tiab] or grieving [tiab] or loss [tiab] or “informal caregiving” [tiab] or “informal caregivers” [tiab] or “family caregiving” [tiab] or “family caregivers” [tiab] or “informal carer” [tiab] or “informal carers” [tiab] or “family carer” [tiab] or “family carers” [tiab] or “caregiving network” [tiab] or “caregiving networks” [tiab] or “carer network” [tiab] or “carer networks” [tiab]

AND

Palliative care [Mesh] or “palliative care” [tiab] or “palliative therapy” [tiab] or “palliative treatment”[tiab] or “end of life care” [tiab] or terminal care [Mesh] or terminal care [tiab] or hospice care [Mesh] or hospice [tiab]

AND

Heart failure [Mesh] or “heart failure” [tiab] or “cardiac failure” [tiab] or “congestive heart failure” [tiab] or “terminal heart disease” [tiab] or “end stage heart disease” [tiab] or “advanced heart failure” [tiab] or “chronic heart failure” [tiab] or LVAD [tiab] or “left ventricular assistance device” [tiab]

EBSCO CINAHL (1981-present)

TI “psychosocial need*” or AB “psychosocial need*” or MH “Anxiety+” or TI anxiety or AB anxiety or TI distress or AB distress or MH “Depression+” or TI depression or AB depression or MH “Social Isolation+” or TI isolation or AB isolation or TI (loneliness or lonely) or AB (loneliness or lonely) or MH “Fatigue+” or TI fatigue or AB fatigue or TI tired or AB tired or TI tiredness or AB tiredness or MH “Pain+” or TI pain or AB pain or TI “spiritual wellbeing” or AB “spiritual wellbeing” or TI “spiritual well-being” or AB “spiritual well-being” or TI wellbeing or AB wellbeing or TI well-being or AB well-being or TI nervous* or AB nervous* or TI worr* or AB worr* or MH “Post-traumatic stress disorders” or TI PTSD or AB PTSD or TI “post-traumatic stress” or AB “post-traumatic stress” or TI agitat* or AB agitat* or MH “Trauma+” or TI trauma or AB trauma or TI “social participation” or AB “social participation” or TI relationship* or AB relationship* or TI “social support” or AB “social support” or TI communication or AB communication or MH “grief+” or TI grief or AB grief or TI grieving or AB grieving or TI loss or AB loss or TI “informal caregiv*” or AB “informal caregiv*” or TI “family caregiv*” or AB “family caregiv*” or TI “informal carer*” or AB “informal carer*” or TI “family carer*” or AB “family carer*” or TI “caregiving network*” or AB “caregiving network*” or TI “carer network*” or AB “carer network*”

AND

MH “Palliative Care” or MH “Terminal Care+” or TI “palliative therapy” or AB “palliative therapy” or TI “palliative treatment” or AB “palliative treatment” or TI “end of life care” or AB “end of life care” or TI “terminal care” or AB “terminal care” or TI hospice or AB hospice

AND

MH “Heart Failure+” or TI “heart failure” or AB “heart failure” or TI “congestive heart failure” or AB “congestive heart failure” or TI “terminal heart failure” or AB “terminal heart failure” or TI “end stage heart disease” or AB “end stage heart disease” or TI “advanced heart failure” or AB “advanced heart failure” or TI “chronic heart failure” or AB “chronic heart failure” or TI LVAD or AB LVAD or TI “left ventricular heart device” or AB “left ventricular heart device”

Search ran 6/6/16

228 results

EBSCO AgeLine (1923-present)

TI “psychosocial need*” or AB “psychosocial need*” or SU “psychosocial needs” or TI anxiety or AB anxiety or SU anxiety or TI distress or AB distress or TI depression or AB depression or SU depression or TI isolation or AB isolation or SU isolation or TI loneliness or AB loneliness or SU loneliness or TI lonely or AB lonely or TI fatigue or AB fatigue or SU fatigue or TI tired or AB tired or TI tiredness or AB tiredness or TI pain or AB pain or SU pain or TI “spiritual wellbeing” or AB “spiritual wellbeing” or TI “spiritual well-being” or AB “spiritual well-being” or SU spirituality or TI wellbeing or AB wellbeing or TI well-being or AB well-being or TI nervous* or AB nervous* or TI worr* or AB worr* or SU worry or TI PTSD or AB PTSD or TI “post-traumatic stress” or AB “post-traumatic stress” or SU posttraumatic stress disorder or TI agitat* or AB agitat* or SU agitation or TI trauma or AB trauma or TI “social participation or AB “social participation or TI relationship* or AB relationship* or SU social interaction or TI “social support” or AB “social support or TI communication or AB communication or SU communication or TI grief or AB grief or SU grief or TI grieving or AB grieving or TI loss or AB loss or TI “informal caregiv*” or AB “informal caregiv*” or SU informal support systems or TI “family caregiv*” or AB “family caregiv*” or SU caregivers or TI “informal carer*” or AB “informal carer*” or TI “family carer* or AB “family carer*” or TI “caregiving network*” or AB “caregiving network*” or TI “carer network*” or AB “carer network*”

AND

TI “Palliative care” or AB “Palliative care” or SU Palliative Care or AB “palliative therapy” or TI “palliative therapy” or TI “palliative treatment” or AB “palliative treatment” or TI “end of life care” or AB “end of life care” or TI “terminal care” or AB “terminal care” or SU terminal care or TI hospice or AB hospice or SU hospice

AND

TI “heart failure” or AB “heart failure” or SU Heart failure or TI “congestive heart failure” or AB “congestive heart failure” or TI “terminal heart failure” or AB “terminal heart failure” or TI “end stage heart disease” or AB “end stage heart disease” or TI “advanced heart failure” or AB “advanced heart failure” or TI “chronic heart failure” or AB “chronic heart failure” or TI LVAD or AB LVAD or TI “left ventricular heart device” or AB “left ventricular heart device”

Search ran 6/10

31 results

EBSCO PsycInfo (1597-present)

TI “psychosocial need*” or AB “psychosocial need*” or TI anxiety or AB anxiety or SU anxiety or TI distress or AB distress or SU distress or TI depression or AB depression or SU major depression or SU depression (emotion) or TI isolation or AB isolation or SU social isolation or TI loneliness or AB loneliness or SU loneliness or TI lonely or AB lonely or TI fatigue or AB fatigue or SU fatigue or TI tired or AB tired or TI tiredness or AB tiredness or TI pain or AB pain or SU pain or TI “spiritual wellbeing” or AB “spiritual wellbeing” or TI “spiritual well-being” or AB “spiritual well-being” or SU spirituality or TI wellbeing or AB wellbeing or TI well-being or AB well-being or SU well being or TI nervous* or AB nervous* or SU nervousness or TI worr* or AB worr* or SU anxiety or TI PTSD or AB PTSD or TI “post-traumatic stress” or AB “post-traumatic stress” or SU posttraumatic stress disorder or TI agitat* or AB agitat* or SU agitation or TI trauma or AB trauma or SU trauma or TI “social participation or AB “social participation or TI relationship* or AB relationship* or SU social interaction or TI “social support” or AB “social support or SU social support or TI communication or AB communication or SU communication or TI grief or AB grief or SU grief or TI grieving or AB grieving or TI loss or AB loss or TI “informal caregiv*” or AB “informal caregiv*” or TI “family caregiv*” or AB “family caregiv*” or SU caregivers or TI “informal carer*” or AB “informal carer*” or TI “family carer* or AB “family carer*” or TI “caregiving network*” or AB “caregiving network*” or TI “carer network*” or AB “carer network*”

AND

TI “Palliative care” or AB “Palliative care” or SU Palliative Care or AB “palliative therapy” or TI “palliative therapy” or TI “palliative treatment” or AB “palliative treatment” or TI “end of life care” or AB “end of life care” or TI “terminal care” or AB “terminal care” or TI hospice or AB hospice or SU hospice

AND

TI “heart failure” or AB “heart failure” or TI “congestive heart failure” or AB “congestive heart failure” or TI “terminal heart failure” or AB “terminal heart failure” or TI “end stage heart disease” or AB “end stage heart disease” or TI “advanced heart failure” or AB “advanced heart failure” or TI “chronic heart failure” or AB “chronic heart failure” or TI LVAD or AB LVAD or TI “left ventricular heart device” or AB “left ventricular heart device”

Search ran 6/10

106 results

EBSCO SocIndex (1895-present)

TI “psychosocial need*” or AB “psychosocial need*” or TI anxiety or AB anxiety or SU anxiety or TI distress or AB distress or distress (psychology) or TI depression or AB depression or SU mental depression or TI isolation or AB isolation or SU social isolation or TI loneliness or AB loneliness or SU loneliness or TI lonely or AB lonely or TI fatigue or AB fatigue or TI tired or AB tired or TI tiredness or AB tiredness or TI pain or AB pain or SU pain or TI “spiritual wellbeing” or AB “spiritual wellbeing” or TI “spiritual well-being” or AB “spiritual well-being” or SU spirituality or TI wellbeing or AB wellbeing or TI well-being or AB well-being or SU well-being or TI nervous* or AB nervous* or TI worr* or AB worr* or TI PTSD or AB PTSD or TI “post-traumatic stress” or AB “post-traumatic stress” or SU post-traumatic stress disorder or TI agitat* or AB agitat* or SU agitation (psychology) or TI trauma or AB trauma or TI “social participation or AB “social participation or SU social participation or TI relationship* or AB relationship* or TI “social support” or SU social interaction or AB “social support or SU social support or TI communication or AB communication or SU communication or TI grief or AB grief or SU grief or TI grieving or AB grieving or TI loss or AB loss or SU loss (psychology) or TI “informal caregiv*” or AB “informal caregiv*” or TI “family caregiv*” or AB “family caregiv*” or SU caregivers or TI “informal carer*” or AB “informal carer*” or TI “family carer* or AB “family carer*” or TI “caregiving network*” or AB “caregiving network*” or TI “carer network*” or AB “carer network*” or SU social networks.

AND

TI “Palliative care” or AB “Palliative care” or SU Palliative Treatment or AB “palliative therapy” or TI “palliative therapy” or TI “palliative treatment” or AB “palliative treatment” or TI “end of life care” or AB “end of life care” or SU terminal care or TI “terminal care” or AB “terminal care” or TI hospice or AB hospice or SU hospice care

AND

TI “heart failure” or AB “heart failure” or TI “congestive heart failure” or AB “congestive heart failure” or TI “terminal heart failure” or AB “terminal heart failure” or TI “end stage heart disease” or AB “end stage heart disease” or TI “advanced heart failure” or AB “advanced heart failure” or TI “chronic heart failure” or AB “chronic heart failure” or TI LVAD or AB LVAD or TI “left ventricular heart device” or AB “left ventricular heart device”

Seach ran 6/10.

19 results.

Scopus (1823-present)

Title search or abstract search:

“psychosocial need*” OR anxiety OR distress OR depression OR “social isolation” OR isolation OR loneliness OR lonely OR fatigue OR tired* OR pain OR “spiritual wellbeing” OR “spiritual well-being” OR wellbeing OR well-being OR nervous* OR worr* OR “post traumatic stress disorders” OR ptsd OR “post traumatic stress” OR agitat* OR trauma OR “social participation” OR relationship* OR interaction* OR “social support” OR communication* OR grief OR grieving OR loss OR “informal caregiv*” or “family caregiv*” OR “informal carer*” OR “family carer*” OR “caregiving network*” OR “carer network*”

AND

Title search or abstract search

“palliative care” OR “palliative therap*” OR “palliative treatment*” OR “end of life care” OR “terminal care” OR “hospice care” OR hospice

AND

Title search or abstract search

”heart failure” OR “cardiac failure” OR “congestive heart failure” OR “terminal heart disease” OR “end stage heart disease” OR “advanced heart failure” OR “chronic heart failure” OR lvad OR “left ventricular assistance device”