Characteristics of the included studies
| Methodology | Participants | Service characteristics | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Study reference | Aim | Data collection | Sampling | Analysis | Number and type | Clinical characteristics | Sociodemographics | 24/7 | Specialist level | Hands-on |
| 1. Brannstrom 2007(a), 2006 Sweden | Explore meanings of living with severe chronic heart failure (CHF) | Face-to-face interviews with open-ended questions | Convenience | Phenomeno-logical-hermeneutic | 4 patients and 3 current caregivers | Severe CHF (NYHA III/IV). Experience with team: 3 months–2 years | Patients: 72–81 years old, 3 men, 2 living with wife, 2 alone Carers: 50–75 years old | Yes, home visit | Unknown | Yes |
| 2.Brannstrom 2007 (b) Sweden | Illuminate meanings of being cared for a palliative advanced home care team | 26 interviews with open-ended questions, 3–5 months intervals, over 4.5 years | Convenience | Phenomenological- hermeneutic | 1 patient and his caregiver | Severe CHF (NYHA IV). Home palliative care for 2 years | Patient and wife about 70 years old, with children and grandchildren | Yes, home visit | Unknown | Yes |
| 3. Ewing 2013 UK | Explore perspectives of carers on support needed during the last months | 9 focus groups with 1.5–2 hours duration, 22 individual telephone interviews | Convenience | Thematic analysis | 75 bereaved caregivers (6–9 months) | 70 patients with cancer, other: MND, Parkinson, COPD | Carers: 35–82 years old, 45 women, 59 spouses, 13 sons PoD: 51 home, 17 hospice | Yes | Unknown | Yes |
| 4. Exley 2005 UK | Explore views and experiences of a Hospice at Home service. | Semistructured interviews | Convenience | Framework approach | 12 bereaved carers (3–6 months) | All cancer | Carers: 3 husbands, 6 wives, 2 daughters, 1 daughter-in-law. PoD: all home | No | Unknown | Yes, advanced support |
| 5.Goldschmid 2006 Denmark | Investigate expectations and evaluations of a palliative home-care team | Semistructured interviews, patients and their caregivers, 2–4 weeks after referral | Convenience | Template analysis | 6 patients and 5 current caregivers | All cancer, diagnosed for 1–79 months, PoD: 5 home, 1 hospital | Patients: 55–88 years old 4 men, 5 women, 3 lived alone Carers: 3 wives, 1 husband, 2 daughters; all >30 years old | Yes | Specialist | Yes by District Nurse |
| 6. Harding 2001 UK | Explore development of appropriate and acceptable services for caregivers | Face-to-face semistructured interviews, using a topic guide | Purposive | Grounded theory | 14 current caregivers, 4 bereaved caregivers | 16 patients with cancer, 2 with non-malignant diseases | Carers: 23–72 years old, 12 women, 13 FT caregivers, 5 working, caring for 2 h–24 hours a day for 2–7 months | Yes | Unknown (team not described) | Yes |
| 7. Harding 2012, Epiphaniou 2012, UK | Understand caregivers support needs to provide informal home palliative care | Face-to-face open-ended semistructured interviews, 30–90 min of duration | Purposive sampling | Thematic analysis | 20 current caregivers | All patients with cancer diagnosis | Patients: 27–79 years old Carers: 25–79 years old, 11 women, 13 spouses, 10 retired, 4 FT workers, caring for 2–24 hours/day | Unknown | Specialist | Unknown visiting team |
| 8. Holley 2009 USA | Understand definition of a successful home palliative care experience | Indepth face-to-face guided interviews for 25–60 min | Convenience | Thematic analysis | 13 bereaved caregivers | Diagnosis: dementia, cancer, failure to thrive | All patients >65 years old All carers >18 years old | Yes | Intermediate | Yes |
| 9. Holmberg 2006 Sweden | Describe and analyse communication between a dying son and his mother | Case study, analysis of a mothers' diary | No sampling | Content analysis | 1 caregiver | Cancer | Patient: a man aged 36 years, married, 1 child; Caregiver: mother | Unknown | Unknown (team not described) | Yes, advanced support |
| 10. Hudson 2004 Australia | Explore experiences of supporting a patient dying of cancer at home. | Face-to-face semistructured interviews, as part of an RCT intervention | Randomisation | Content and thematic analysis | Current caregivers | Advanced cancer (prognosis<12 months), independent | Carers: all living with patient, 2/3 women, 2/3 spouses, 42% retired | Yes | Unknown | Unknown |
| 11. Hull 1989–1993 Ohio, USA | Understand family experiences caring for relative under hospice supported home care | Semistructured interviews and participant observation every 3–4 weeks (55 visits in 16 months) | Theoretical sampling | Content analysis | 14 current caregivers of 10 different families | All 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 niece | Yes, home visit | Unknown | Yes |
| 12. Melin-Johansson 2008, Sweden | Elucidate meaning of quality-of-life as narrated by patients with cancer | Narrative interviews | Convenience sampling | Content analysis, hermeneutic | 8 patients | All metastatic, mean survival time after interview 3 months | Patients: 35–83 years old, 6 men, 7 married, 2 lived with children, 1 single | No | Specialist | Yes, advanced support |
| 13. Milberg 2012 Sweden | Explore patients and families’ experiences of palliative home care as a ‘secure base’ | Guided interviews with open-ended questions (30–90 min) | Maximum variation sample | Deductive content analysis | 12 patients 14 caregivers | Patients: 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 spouses | Yes, home visit | Specialist | Yes |
| 14. Milberg 2011, 2004, Sweden | Illuminate experience of powerlessness and helplessness in a palliative home care context | Cross-sectional posted survey with piloted open-ended questions | Conventional sample. (RR 72%) | Qualitative+quantitative content analysis | 233 NoK, 99 current carers 134 bereaved | Patients: all cancer | Patients: 23–94 years old, 108 women NoK: 31–91 years old, 148 women 157 spouse, 51 child | Yes, home visit | Specialist | Yes |
| 15 Milberg 2004, 2003 Sweden | Describe construct of meaningfulness, comprehensibility and manageability of carers | 30 interviews (saturation) during hospital-based home palliative care | Maximum variation sampling | Hermeneutic meaning interpretation | 19 current caregivers | All patients with cancer | Patients: 57–86 years old, 8 men Caregivers: 45–78 years old, 9 men, 7 employed, 15 spouses, 16 living with patient | Yes | Specialist | Yes |
| 16. Milberg 2003 Sweden | Investigate NoK lasting impression of home palliative care. | Posted or personally delivered questionnaires. | Representative sampling (RR 86%) | Qualitative content analysis | 217 bereaved caregivers (3–7 months after) | 189 (87%) cared for patients with cancer | Carers: 121 women | Yes, home visit | Specialist | Yes, advanced support |
| 17. Milberg 2007 Sweden | Develop theory about family members’ experience of home palliative care | Analytic expansion of studies 14, 15, 16 with statement analysis and theory synthesis | 469 family members: 118 current, 351 bereaved | Patients: 441 with cancer | 279 women | Yes | Specialist | Yes | ||
| 18. Milberg 2000 Sweden | To investigate NoK satisfaction with service | Questionnaire with 3 open-ended questions | Convenience sample | Content analysis | 72 bereaved NoK | All adults, all cancer | All adults | Yes, home visit | Specialist | Yes |
| 19. Nasstrom 2013 Sweden | Examine chronic heart failure patients descriptions of participation in care | Face-to-face interviews | Quota sampling | Content analysis | 19 patients | All patients with chronic heart failure NYHA III/IV (18/1) | Patients: 13 men, 63–90 years old, 11 living alone | Yes | Intermediate | Yes |
CHF, chronic heart failure; COPD, chronic obstructive pulmonary disease; MND, motoneuron disease; NoK, next-of-kin; PoD, place of death; RR, response rate.