Table 2

Characteristics of the included studies

Methodology Participants Service characteristics
Study referenceAimData collectionSamplingAnalysisNumber and typeClinical characteristicsSociodemographics24/7Specialist levelHands-on
1. Brannstrom 2007(a), 2006 SwedenExplore meanings of living with severe chronic heart failure (CHF)Face-to-face interviews with open-ended questionsConveniencePhenomeno-logical-hermeneutic4 patients and 3 current caregiversSevere CHF (NYHA III/IV). Experience with team: 3 months–2 yearsPatients: 72–81 years old, 3 men, 2 living with wife, 2 alone
Carers: 50–75 years old
Yes, home visitUnknownYes
2.Brannstrom 2007 (b) SwedenIlluminate meanings of being cared for a palliative advanced home care team26 interviews with open-ended questions, 3–5 months intervals, over 4.5 yearsConveniencePhenomenological- hermeneutic1 patient and his caregiverSevere CHF (NYHA IV). Home palliative care for 2 yearsPatient and wife about 70 years old, with children and grandchildrenYes, home visitUnknownYes
3. Ewing 2013 UKExplore perspectives of carers on support needed during the last months9 focus groups with 1.5–2 hours duration, 22 individual telephone interviewsConvenienceThematic analysis75 bereaved caregivers (6–9 months)70 patients with cancer, other: MND, Parkinson, COPDCarers: 35–82 years old, 45 women, 59 spouses, 13 sons
PoD: 51 home, 17 hospice
4. Exley 2005 UKExplore views and experiences of a Hospice at Home service.Semistructured interviewsConvenienceFramework approach12 bereaved carers (3–6 months)All cancerCarers: 3 husbands, 6 wives, 2 daughters, 1 daughter-in-law. PoD: all homeNoUnknownYes, advanced support
5.Goldschmid 2006 DenmarkInvestigate expectations and evaluations of a palliative home-care teamSemistructured interviews, patients and their caregivers, 2–4 weeks after referralConvenienceTemplate analysis6 patients and 5 current caregiversAll cancer, diagnosed for 1–79 months, PoD: 5 home, 1 hospitalPatients: 55–88 years old 4 men, 5 women, 3 lived alone
Carers: 3 wives, 1 husband, 2 daughters; all >30 years old
YesSpecialistYes by District Nurse
6. Harding 2001 UKExplore development of appropriate and acceptable services for caregiversFace-to-face semistructured interviews, using a topic guidePurposiveGrounded theory14 current caregivers, 4 bereaved caregivers16 patients with cancer, 2 with non-malignant diseasesCarers: 23–72 years old, 12 women, 13 FT caregivers, 5 working, caring for 2 h–24 hours a day for 2–7 monthsYesUnknown (team not described)Yes
7. Harding 2012, Epiphaniou 2012, UKUnderstand caregivers support needs to provide informal home palliative careFace-to-face open-ended semistructured interviews, 30–90 min of durationPurposive samplingThematic analysis20 current caregiversAll patients with cancer diagnosisPatients: 27–79 years old Carers: 25–79 years old, 11 women, 13 spouses, 10 retired, 4 FT workers, caring for 2–24 hours/dayUnknownSpecialistUnknown visiting team
8. Holley 2009 USAUnderstand definition of a successful home palliative care experienceIndepth face-to-face guided interviews for 25–60 minConvenienceThematic analysis13 bereaved caregiversDiagnosis: dementia, cancer, failure to thriveAll patients >65 years old
All carers >18 years old
9. Holmberg 2006 SwedenDescribe and analyse communication between a dying son and his motherCase study, analysis of a mothers' diaryNo samplingContent analysis1 caregiverCancerPatient: a man aged 36 years, married, 1 child; Caregiver: motherUnknownUnknown (team not described)Yes, advanced support
10. Hudson 2004 AustraliaExplore experiences of supporting a patient dying of cancer at home.Face-to-face semistructured interviews, as part of an RCT interventionRandomisationContent and thematic analysisCurrent caregiversAdvanced cancer (prognosis<12 months), independentCarers: all living with patient, 2/3 women, 2/3 spouses, 42% retiredYesUnknownUnknown
11. Hull 1989–1993 Ohio, USAUnderstand family experiences caring for relative under hospice supported home careSemistructured interviews and participant observation every 3–4 weeks (55 visits in 16 months)Theoretical samplingContent analysis14 current caregivers of 10 different familiesAll patients with cancer. Total time enrolled in hospice 2.5–31 months (prior study 1–26 months)Patients: 41–90 years old Family members: 26–78 years old, 5 spouses, 4 daughters, 4 sons, 1 nieceYes, home visitUnknownYes
12. Melin-Johansson 2008, SwedenElucidate meaning of quality-of-life as narrated by patients with cancerNarrative interviewsConvenience samplingContent analysis, hermeneutic8 patientsAll metastatic, mean survival time after interview 3 monthsPatients: 35–83 years old, 6 men, 7 married, 2 lived with children, 1 singleNoSpecialistYes, advanced support
13. Milberg 2012 SwedenExplore patients and families’ experiences of palliative home care as a ‘secure base’Guided interviews with open-ended questions (30–90 min)Maximum variation sampleDeductive content analysis12 patients 14 caregiversPatients: 9 cancer
Caregivers: 12 caring for cancer patient
Patients: 35–79 years old, 4 women, 10 married (2 living alone) Caregivers: 53–79 years old, 11 women, 13 spousesYes, home visitSpecialistYes
14. Milberg 2011, 2004, SwedenIlluminate experience of powerlessness and helplessness in a palliative home care contextCross-sectional posted survey with piloted open-ended questionsConventional sample. (RR 72%)Qualitative+quantitative content analysis233 NoK, 99 current carers 134 bereavedPatients: all cancerPatients: 23–94 years old, 108 women
NoK: 31–91 years old, 148 women 157 spouse, 51 child
Yes, home visitSpecialistYes
15 Milberg 2004, 2003 SwedenDescribe construct of meaningfulness, comprehensibility and manageability of carers30 interviews (saturation) during hospital-based home palliative careMaximum variation samplingHermeneutic meaning interpretation19 current caregiversAll patients with cancerPatients: 57–86 years old, 8 men
Caregivers: 45–78 years old, 9 men, 7 employed, 15 spouses, 16 living with patient
16. Milberg 2003 SwedenInvestigate NoK lasting impression of home palliative care.Posted or personally delivered questionnaires.Representative sampling (RR 86%)Qualitative content analysis217 bereaved caregivers (3–7 months after)189 (87%) cared for patients with cancerCarers: 121 womenYes, home visitSpecialistYes, advanced support
17. Milberg 2007 SwedenDevelop theory about family members’ experience of home palliative careAnalytic expansion of studies 14, 15, 16 with statement analysis and theory synthesis469 family
members: 118 current, 351 bereaved
Patients: 441 with cancer279 womenYesSpecialistYes
18. Milberg 2000 SwedenTo investigate NoK satisfaction with serviceQuestionnaire with 3 open-ended questionsConvenience sampleContent analysis72 bereaved NoKAll adults, all cancerAll adultsYes, home visitSpecialistYes
19. Nasstrom 2013 SwedenExamine chronic heart failure patients descriptions of participation in careFace-to-face interviewsQuota samplingContent analysis19 patientsAll patients with chronic heart failure NYHA III/IV (18/1)Patients: 13 men, 63–90 years old, 11 living aloneYesIntermediateYes
  • CHF, chronic heart failure; COPD, chronic obstructive pulmonary disease; MND, motoneuron disease; NoK, next-of-kin; PoD, place of death; RR, response rate.