| Focusing on the Patient’s Illness Needs |
Learning |
Learning about the patient’s health condition |
Acquiring information about the health condition (Fujinami et al., 2012; Pappa et al., 2017; Retrum et al., 2013; Savage et al., 2015) |
| Learning to perform health care tasks with or for the patient |
Performing health care tasks safely, skillfully, and confidently (Fex et al., 2011; Fujinami et al., 2012; Golla et al., 2015; Nguyen et al., 2017; Savage et al., 2015; Ward et al., 2011; Wingham et al., 2015)
Managing medications (Cameron et al., 2015; Gysels & Higginson, 2009; Holden et al., 2015; Kanter et al., 2014; Mason et al., 2016; Wingham et al., 2015)
Supporting activities of daily living (Cameron et al., 2015; Johnston et al., 2012; Keesing, & Rosenwax, 2011; Kutner et al., 2009; Masters et al., 2013; Morales-Asencio et al., 2014; Ward et al., 2011; Wingham et al., 2015) |
| Learning to manage fluctuations in the patient’s illness |
Managing symptoms and acute exacerbations (Fex et al., 2011; Golla et al., 2015; Gysels & Higginson, 2009; Holden et al., 2015; Johnston et al., 2012; Kanter et al., 2014; Lo et al., 2016; Lockie et al., 2010; Mason et al., 2016; Masters et al., 2013; Wingham et al., 2015)
Planning in the presence of uncertainty (Fex et al., 2011; Golla et al., 2015; Gysels & Higginson, 2009; Mason et al., 2016; Johnston et al., 2012) |
| Activating Health Care Resources for the Patient |
Identifying health care resources to support patient care |
Obtaining information and support from health care professionals (Fex et al., 2011; Fujinami et al., 2012; Kutner, et al., 2009; Lilly et al., 2011; Lo et al., 2016; Lockie et al., 2010; Morales-Asencio et al., 2014; Nguyen et al., 2017; Rolley et al., 2011; Wingham et al., 2015)
Communicating clearly with health care professionals (Lockie et al., 2010)
Adapting the home environment/procuring and managing assistive devices (Fex et al., 2011; Fujinami et al., 2012; Golla et al., 2015; Gysels & Higginson, 2009; Masters et al., 2013)
Using a home health aide or sitter (Holden et al., 2015; Keesing & Rosenwax, 2011; Lo et al., 2016; Mason et al. 2016; Wingham et al., 2015)
Accessing transportation services (Fujinami et al., 2012; Golla et al., 2015; Lo et al., 2016) |
| Supporting the Patient |
Supporting the patient’s physical health |
Identifying the patient’s health care needs (Perzynski et al., 2017; Wingham et al., 2015)
Encouraging patient self-management (Retrum et al., 2013)
Taking on more responsibilities when the patient becomes unwell/unable (Gysels & Higginson, 2009; Savage et al., 2015)
Identifying and keeping vigilant about the patient’s health care needs/keeping records (Mason et al., 2016; Wingham et al., 2015) |
| Supporting the patient’s emotional health |
Assisting the patient to cope with the diagnosis (Cameron et al., 2015; Sussman et al., 2016)
Being present with positivity/motivation/perspective (Fex et al., 2011; Lo et al., 2016; Rolley et al., 2011) |
| Advocating for the patient |
Promoting the patient’s comfort/being protective/serving as proxy (Masters et al., 2013; Rolley et al., 2011; Savage et al., 2015; Ward et al., 2011; Wingham et al., 2015)
Advocating for resources to meet patient needs (e.g., financial, disabled-friendly environments; Fujinami et al., 2012; Lilly et al., 2011; Lockie et al., 2010; Rolley et al., 2011) |
| Performing everyday tasks |
Providing transportation (Kanter et al., 2014; Keesing & Rosenwax, 2011; Kutner et al., 2009; Masters et al., 2013; Williams et al., 2013)
Maintaining the household (Fex et al., 2011; Johnston et al., 2012; Kutner et al., 2009)
Managing finances and insurance (Keesing & Rosenwax. 2011; Lo et al., 2016; Lockie et al., 2010; Masters et al., 2013; Wingham et al., 2015) |
| Activating Resources to Support Oneself as the Family Caregiver |
Psychosocial Resources |
Identifying and benefiting from psychological and social resources |
Seeking emotional support from other caregivers (Lilly et al., 2011; Lo et al.,2016; Masters et al., 2013; Pappa et al., 2017; Perzynski et al., 2017; Rolley et al., 2011)
Asking for information and practical support from family/friends (Applebaum et al, 2015; Fex et al., 2011; Gysels & Higginson, 2009; Lockie et al., 2010; Martinez-Marcos & De la Cuesta-Benjumea, 2014; Morales-Asencio et al., 2014; Wingham et al., 2015)
Arranging pleasant/relaxing activities for self (Martinez-Marcos & De la Cuesta-Benjumea, 2014; Williams et al., 2013; Wingham et al., 2015)
Prioritizing and shifting tasks (Gysels & Higginson, 2009; Lockie et al., 2010; Martinez-Marcos & De la Cuesta-Benjumea, 2014; Pappa et al., 2017)
Using respite care services (Holden et al., 2015; Keesing & Rosenwax, 2011; Lilly et al., 2011; Lo et al., 2016; Wingham et al., 2015) |
| Spiritual Resources |
Sustaining spiritual self |
Praying (Williams et al., 2013)
Accessing faith organizations (Wingham et al., 2015) |
| Supporting a Patient Living with a Chronic, Life-Limiting Illness |
Paying Attention to Caregiver’s Health |
Managing one’s own emotions |
Addressing:
Anxiety/fear/panic/shock (Applebaum et al., 2015; Golla et al., 2015; Gysels & Higginson, 2009; Kanter et al., 2014; Lockie et al., 2010; Martinez-Marcos & De la Cuesta-Benjumea, 2014; Pappa et al., 2017; Retrum et al., 2013; Rolley et al., 2011; Savage et al., 2015; Williams et al., 2013)
Burden/burnout/being overwhelmed (Kanter et al., 2014; Keesing & Rosenwax, 2011; Pappa et al., 2017; Savage et al., 2015; Williams et al., 2013; Wingham et al., 2015)
Depression/grief/hopelessness/helplessness (Applebaum et al., 2015; Fex et al., 2011; Fujinami et al., 2012; Golla et al., 2015; Gysels & Higginson, 2009; Holden et al., 2015; Kanter et al., 2014; Kutner et al., 2009; Lockie et al., 2010; Rolley et al., 2011; Williams et al., 2013)
Disempowerment/discouragement/inadequacy (Gysels & Higginson, 2009; Keesing & Rosenwax, 2011; Martinez-Marcos & De la Cuesta-Bejumea, 2014)
Distress/worry/emotional exhaustion (Applebaum et al., 2015; Fex et al., 2011; Fujinami et al., 2012; Golla et al., 2015; Gysels & Higginson, 2009; Kanter et al., 2014; Lockie et al., 2010; Masters et al., 2013; Retrum et al., 2013; Rolley et al., 2011; Savage et al., 2015; Sussman et al., 2016; Ward et al., 2011; Williams et al., 2013; Wingham et al., 2015)
Guilt/selfishness (Gysels & Higginson, 2009; Kanter et al., 2014; Keesing & Rosenwax, 2011; Kutner et al., 2009; Williams et al., 2013)
Lack of/need for control (Fujinami et al., 2012; Golla et al., 2015; Kutner et al., 2009; Martinez-Marcos & De la Cuesta-Benjumea, 2014; Rolley et al., 2011; Sussman et al., 2016; Wingham et al., 2015)
Loneliness/isolation/abandonment/vulnerability (Applebaum et al., 2015; Fex et al., 2011; Kanter et al., 2014; Kutner et al., 2009; Lilly et al., 2011; Williams et al., 2013; Wingham et al., 2015)
Numbness/stoicism (Gysels & Higginson, 2009; Lockie et al., 2010; Wingham et al., 2015)
Regret/resentment/anger/frustration (Applebaum et al., 2015; Fex et al., 2011; Golla et al., 2015; Gysels & Higginson, 2009; Kanter et al., 2014; Kutner et al., 2009; Lilly et al., 2011; Perzynski et al., 2017; Rolley et al., 2011; Williams et al., 2013; Wingham et al., 2015)
Stress/strain/tension (Holden et al., 2015; Lilly et al., 2011; Masters et al., 2013; Retrum et al., 2013; Rolley et al., 2011; Williams et al., 2013; Wingham et al., 2015)
Uncertainty/doubt (Golla et al., 2015; Gysels & Higginson, 2009; Kutner et al., 2009; Mason et al., 2016; Rolley et al., 2011; Williams et al., 2013; Wingham et al., 2015)
Not wanting to share feelings and distress the patient/others don’t understand (Golla et al., 2015; Gysels & Higginson, 2009) |
| Managing one’s own physical health |
Addressing own health care needs (Martinez-Marcos & De la Cuesta-Benjumea, 2014)
Acquiring health information for own health needs (Lo et al., 2016; Morales-Asencio et al., 2014; Wingham et al., 2015) |
| Adjusting |
Adjusting to being a caregiver |
Adjusting to new role(s) (Fex et al., 2011; Fujinami et al., 2012)
Setting expectations (Fex et al., 2011; Fujinami et al., 2012)
Planning/managing time (Gysels & Higginson, 2009; Lockie et al., 2010; Martinez-Marcos & De la Cuesta-Benjumea, 2014) |
| Adjusting to prognosis |
Acknowledging the patient’s prognosis (Golla et al., 2015; Johnston et al., 2012; Lilly et al., 2011; Lockie et al., 2010; Mason et al., 2016; Wingham et al., 2015) |
| Meaning-Making |
Identifying positive aspects of caregiving/Sublimating |
Exploring/expressing positive aspects of caregiving (e.g., privilege, devotion, love, gratitude; Kutner et al., 2009; Perzynski et al., 2017; Sussman et al., 2016; Williams et al., 2013)
Accepting the situation/making the best of it (Gysels & Higginson, 2009; Lockie et al., 2010; Morales-Asencio et al., 2014; Sussman et al., 2016; Williams et al., 2013) |
| Personal growth |
Developing confidence (Pappa et al., 2017)
Increasing empathy (Williams et al., 2013)
Persevering (Lilly et al., 2011) |
