Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Abstract

Background:

End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.

Aims:

To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.

Design:

A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Data sources:

Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors.

Results:

A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and ‘country’.

Conclusion:

Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers’ experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

Keywords

Palliative care end-of-life care rural family patient caregiver systematic review

What is already known about the topic?

Quality end-of-life care is the right of every person regardless of where they live.

Rural areas are distinct and as such need to have special consideration.

Gaps exist in rural end-of-life care research including studies reporting the experiences and perspectives of rural patients and their family caregivers.

What this paper adds?

Rural patients and family caregivers experience unique challenges and benefits of rural living.

The greatest needs of patients and family caregivers were informational (developed countries) and medications (developing countries).

Influences of rural location on end-of-life care included distances, inaccessibility to end-of-life care services, strong community support and importance of home and ‘country’.

Articulation of the rural voice is increasing, especially in North America.

Implications for practice, theory or policy

Further research is encouraged to gain the experiences and perspectives of rural patients and family caregivers, especially through national and international collaborative work.

Introduction

Quality end-of-life care is considered the right of every dying person regardless of where they live.¹ Quality end-of-life care is patient-centred care where patients and their primary carer, often a family member, are encouraged to participate, if not direct, care decisions as ‘to remain socially relevant, end-of-life care ideally must reflect the needs of the dying individual …. within diverse cultural and geographic areas (p. 26)’.² Rural areas are distinct and as such need to have special consideration. It is imperative to take full account of the rural experiences and perspectives of those persons and families receiving care to ensure optimal rural end-of-life care.³

Wilson et al.^4,5 suggest rural people define themselves as ‘rural’ and as different from urbanites; however, gaining the rural voice is challenging. One significant obstacle in finding a common ‘rural’ voice is the lack of an internationally agreed rurality index, meaning that results across studies and across countries are not necessarily comparable. Hart et al.⁶ report ‘rural’ to be a ‘multifaceted concept (p. 1149)’⁶ dependent on context. As such, there are inconsistencies in definitions of ‘rural’ based on population size, density or demographics; or distance from urban centres and services; or as a specific ‘culture’.⁶ An additional research challenge is the difficulty of recruiting terminally ill patients and their family caregivers to research⁷ which is magnified by the often small cohort of such patients within small rural communities.

Previous rural palliative care reviews^3,8 report that rural research is focused on programme planning, integration and evaluation; education; finances; and needs assessments,⁹ with professional providers or administrators as the prime informants. In 2009, Robinson et al.⁸ published a systematic review (studies published from 1996 through 2007) identifying major gaps in the literature including a lack of studies describing end-of-life care through the experiences and perspectives of rural patients and family caregivers and the influence of rural culture on these experiences. Future researchers were encouraged to seek these perspectives in order to provide ‘strong evidence to inform palliative care policy and service development in rural settings (p. 253)’.⁸

The objectives of our systematic review were to search the literature since January 2006 and to (1) explore the end-of-life care experiences and perspectives of rural patients and their family caregivers, (2) identify facilitators and barriers to receiving end-of-life care in rural/remote settings and (3) describe the influence of rural place and culture on end-of-life care experiences. This information will add to the general knowledge on rural/remote end-of-life care and may further assist rural policymakers and healthcare professionals (HCPs) in ensuring that rural palliative care services are relevant to those receiving such care.

Method

This systematic review was undertaken utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.¹⁰

Literature search

In January 2016, four electronic databases (PubMed, CINAHL, Scopus and Web of Science) were searched using the following keywords and Medical Subject Heading (MeSH) terms: (‘palliative care’ OR hospice OR ‘terminal care’ OR end-of-life OR ‘end-of-life care’) AND (Rural OR Remote) AND (patient OR family OR carer OR caregiver) AND (perspective OR experience OR opinion OR view). A date filter of January 2006 through January 2016 was applied with this including an overlap with the 2009 systematic review⁸ to ensure that previously submitted but unpublished studies were included. Two articles (2006 and 2007¹¹) were identified and considered; however, as the 2006 article was included in the previous review, it was excluded.

The reference lists of all included studies were scanned for additional articles. Recent issues (July 2014–May 2016) of six relevant journals (Palliative Medicine, Journal of Palliative Medicine, Journal of Pain and Symptom Management, Palliative and Supportive Care, Australian Journal of Rural Health and Journal of Rural Health) were handsearched by the first author (S.R.).

Selection criteria

Studies were assessed against predetermined inclusion criteria and included rural or remote residents (no standardised definition of rurality was used); participants were receiving palliative or end-of-life care for malignant or non-malignant illnesses; data pertained to patient or family caregivers’ experiences or perspectives on end-of-life care collected from interviews or surveys. Both qualitative and quantitative studies were included. No age filter was applied. Only published international English language, peer-reviewed research articles were considered. Articles that included urban and rural data were included providing the rural data were clearly identifiable. One author¹¹ of a retained study was contacted to verify participants were rural.

Rejected studies were either clearly irrelevant or those that addressed the topic in general but failed in one or more of the inclusion criteria. Ethics approval was not required for this review of published literature.

Screening of papers

The search identified 450 potential papers. After duplicates were removed, 220 titles were screened independently by S.R. and second author (R.D.M.) against the inclusion criteria. This identified 105 papers for consideration. At least two authors screened each abstract, and when necessary, full texts. Differences were discussed via email and resolved by consensus.

Appraisal and data extraction

Quality assessment of each retained article was made by S.R. with verification shared independently among the five co-authors. Quality was determined on aspects relevant to rural patient/family caregiver perspectives on end-of-life care and was not necessarily an assessment of the study per se, which resulted in some high-quality studies receiving a lower score. All studies were rated to be of low, medium or high quality based on a simple scoring system described by Gomes et al.¹² and modified by S.R. to account for the rural patient/family caregiver focus. As such, two additional items were included as follows: (1) clarity of rural definition and (2) validity of informant (first hand/prospective = 2, retrospective family caregiver = 1). Only studies rated high or medium were included in this literature review.¹³

Data from each retained article were extracted and tabled by S.R., according to pre-defined categories (see Table 1). Critical review of full texts against data extraction was shared and undertaken independently among the five co-authors.

Table 1.

Summary of included studies.

	Purpose	Informants/recruitment	Rural definition	Methodology	Findings	Limitations/bias	Quality
Brazil et al.^14,15 Canada	To compare experiences and support needs of urban and rural FCG, to determine importance of and degree of unmet needs Mixed geographical study	140 FCGs (included 70 rural FCGs: 44 active + 26 bereaved) Recruitment: identified by single PC service RR: 29%	Rural = area outside urban (communities ⩾30,000 residents); rural and isolated communities in Northeastern Ontario	Cross-sectional telephone survey; demographics; modified validated instruments: CBS-EoL, MSPSS, ECOG, catalogue services available, 25-item carer support need instrument +5 questions relating to service delivery; analysis–descriptive and inferential statistics; evaluation by location (urban vs rural)	Most important needs for urban (U) + rural (R) were informational; rural FCG: greater unmet tangible needs (z = −2.59, p = 0.01); emotional support U = R; care perceived as largely accessible to patients’ changing needs for U + R respondents (mean accessibility score: 1.7, SD = 0.7 and 1.9, SD = 0.09, respectively, t80 = 1.31, p = 0.20, 95% CI: 0.12–0.58, d = 0.29)	Low response rate, recruitment through palliative care service, rural residency diverse, evaluation of single service, bias as over-burdened carers may not have participated, survey directed towards existing service delivery	High
Dale and Johnston¹⁶ Scotland	To explore and interpret the concerns of patients with inoperable lung cancer, to inform specialist palliative care nursing practice Rural study	Six patients Recruitment: purposive sample; identified by lung cancer nurse specialist Disease: lung cancer	Rural community in Scotland	Qualitative, interpretative constructivist approach, semi-structured exploratory ITVs, thematic analysis Interviewer: researcher nurse, unknown to participants	Themes: 1. Steadfastly living life; making most of time available, maintaining normality, take life as it comes, not giving up, not becoming a burden on family, maintaining identity and value; one participant indicated no other choice but carry on as normal 2. Family support and separation: support of and concern for family, planning so no unfinished business, anticipated loss, preparation for separation 3. Trust in professionals: some wanted information to make decisions, others content to follow advice without questioning, knowing who to contact for support	Small sample size, single service recruitment	High
Darer et al.¹⁷ USA	To assess quality of the dying process, identify opportunities for improvement and support strategies for targeting at-risk families Rural study	672 NOK (bereaved) Recruitment: identified from single integrated rural health data, mailed survey, opt-out Diagnosis: All; ESRD, CHF, COPD oversampled RR: 25%	Central and NE rural Pennsylvania	Written survey contained QoDD instrument, GAD-7, PHQ-8, modified Toolkit of Instruments to measure EoLC Quantitative analysis–descriptive, comparisons (chi square, linear regression, p values)	In general, high satisfaction with care teams and providers, lower QoDD experience associated with dying in hospital, receipt of conflicting information, poor co-ordination between HCPs and confusion around which doctor is in charge, NOK depression and anxiety, prolonged illness	Poor response rate, single integrated health system, limited diversity of participating NOK, up to 12 months bereavement (potential recall bias), predominantly White females ⩾60 years, NOK not necessarily rural	Medium
Dembinsky¹⁸ Australia	To explore perceptions and use of palliative care services by examining lived experiences of women with breast cancer Rural/remote study	10 patients; 4 FCG, 6 non-carer family members, 5 HCPs Recruitment: Regional Medical Services and Indigenous Women’s Support Network Diagnosis: breast cancer	Yamatji country, mid-west region of Western Australia; scarcely populated with few small towns	Medical anthropology, informal ITVs, grounded theory and ethnographic immersion, coded, thematic analysis Interviewer: non-treating researcher	Preparation – to gather family, distribute possessions, set affairs in order, say goodbye To die in country – if one dies outside their country, the spirit is doomed to roam eternally, preventing completion of life–death–life continuum Specific ceremonies and practices surrounding death, for example, ritual cleansing of physical death place inhibits uptake of inpatient care Opportunity for family to remain close to the dying member is important for the surviving family Hospital environment not culturally appropriate Home-based PC limited due to distances, mobile service visit 1–2 times/months	Small sample size, specific cultural issues, only female participants with breast cancer, recruited through single health service, snowballing of participants	High
Devik et al.¹⁹ Wiik et al.²⁰ Norway	To explore and understand lived experience of older cancer patients living alone Rural study	5 older patients, living alone; (3 women, 2 men, aged 71-79); receiving outpatient and life-prolonging chemotherapy Recruitment: identified through oncology polyclinic; initial contact by nurse Diagnosis: incurable cancer RR: 50%	Communities (mountain and coastal), low population density, population: 920–7775	Qualitative; phenomenological hermeneutical approach; narrative ITVs Interviewer: Non treating researcher	Enduring by keeping hope alive, becoming aware that you are on your own, living up to expectations of being a good patient and being at risk of losing one’s identity and value Rural distance requires commuting (stressful commuting, being exhausted)	Small sample, recruitment bias (polyclinic), cancer	High
Devik et al.²¹ Norway	To illuminate and interpret the meaning of receiving home nursing care when being old and living with advanced cancer Rural study	9 older patients (5 women, 4 men); 71–92 years Identified by oncology and cancer care nurses Diagnosis: cancer	A territorial area with scattered settlements, some distance from a densely populated area and where natural resources are the basis for industry and outdoor activity; participants resided where population: 268–5089 (mean 5 inhabitants/km²)	Qualitative, phenomenological hermeneutical approach, narrative ITVs Interviewer: researcher	Receiving HNC means to continue a familiar and meaningful life Three themes: being content with what one gets (a wish to age in place), falling into place and losing one’s place Strong place attachment (physical, social, autobiographical); suggests rural advantageous healthcare environment (comfort, security, identity)	Small sample, cancer, recruitment by home care nurses Strength: researcher reflexivity acknowledged	High
Duggleby et al.^22,23 Canada	To explore the context and experience of significant transitions experienced by older rural persons receiving palliative home care and their families and to develop a substantive theory of transitions in this population Rural study	6 older patients; 10 bereaved FCGs Recruitment: purposive sample, identified by PC co-ordinator Diagnosis: advanced cancer	3 rural health regions in a western Canadian province classified as one of the most ‘rural’ Canadian provinces	Grounded theory, open-ended individual audio-taped ITVs (patients – face-to-face; FCG – telephone) Interviewer: researcher	‘Navigating Unknown Waters’ describes transitions faced by older rural palliative patients and their families due to rural isolation, lack of information, limited accessibility to services, individual values and community connectedness FCGs experienced multiple significant transitions including significant changes in their own physical and mental health	Small sample, cross-sectional survey so point in time data, variable geographic location, cancer only	High
Duggleby et al.²⁴ Canada	To determine factors influencing the hope of rural women caregivers Rural study	122 FCG (active) Recruitment: survey and invitation mailed to cancer patients (to forward to primary female carer) Identified by cancer registry with 60% not receiving services Diagnosis: cancer RR: 15.6%	Home address with a rural post code, Saskatchewan ⩽ 9999 residents, Alberta <55,000	A cross-sectional prospective correlational design, written survey, quantitative analysis (SPSS)	Mental health, well-being and self-efficacy were predictors of hope; physical health was not significant Guilt lessens hope and increases burden, depression and family distress Higher hope scores associated with higher mental health scores, lower perceptions of loss and grief scores and higher scores in their ability to deal with difficult situations Rural women caregivers had low physical and mental health scores compared to US population norms (<25th percentile)	No measure of hope over time, small sample, small response rate, bias in recruitment – self-accepted invitation, cancer	Medium
Grant et al.²⁵ Uganda, Kenya, Malawi	To describe patient, family (and local community) perspectives on the impact of three community-based PC interventions in sub-Saharan Africa Rural study	33 patients; 27 FCGs (17 active, 10 bereaved); also 29 leaders + 61 staff Recruitment: identified by PC team Diagnosis: advanced illness	Uganda: mobile PC service 120 km from Kampala includes fishing communities on Lake Victoria Kenya: rural, 240 km from Nairobi Malawi: peri-urban districts of Blantyre	Rapid assessment evaluation, qualitative, photographic ethnography, rapid evaluation field studies, ITVs with key informants, direct observations of clinical encounters, (review of local PC information), data triangulation, thematic analysis Interviewer: researcher, interpreter, PC worker present	Patients valued being treated with respect, maintaining dignity, integration of symptom control with practical, emotional, financial and spiritual care assisted patients to remain home, mobile phones enabled rapid access to clinical and social support networks, PC service (nurses and volunteers) important	Service evaluation, selection bias, small samples Palliative care worker present → may inhibit honest responses	Medium
Hansen et al.²⁶ USA	To describe the experiences of FCGs with formal and informal care at the end-of-life for dying older adults Rural study	23 FCG (bereaved) Recruitment: purposive sample, identified by funeral director and hospice staff. Invitation mailed 2–12 months after the death Diagnosis: cancer and chronic illness	Rural, agricultural Pacific Northwest county; average of 11.2 people per square mile	Generic, qualitative, exploratory design; semi-structured, open-ended ITVs; purposive sampling; thematic analysis Interviewer: researcher	Rural setting: Benefits Neighbours, friends, volunteers offered household help and respite care Formal care providers often known personally Flexibility in organisational support, more creative Support from church members Challenges Limited resources for continuity of care Geographical service boundaries → limited availability, greater travel distances Lack of knowledge about EoLC by paid caregivers FCG stress	Small sample	High
Hatcher et al.²⁷ Australia	To document carer perceptions of patients’ transitions from community to hospital-based palliative care Rural study	6 FCGs (active) Recruitment: on admission to PC service Diagnosis: cancer	Rural community; not described	Qualitative, semi-structured ITVs, first ITV at time patient transferred to hospital, second ITV 3 months later, coding, thematic analysis Interviewer: non-treating PC service staff	Transfer to hospital occurred at a crisis point and not dissatisfaction with home-care service, experiences mostly positive Decision to transfer initiated and led by FCG – inability to provide optimal care; physical difficulties, patient pain and anxiety Smooth transition to community hospital due to good communication and continuity of care by PC nurse Hospital care – mostly satisfied; personal, treated as individuals, compassionate, safe and convenient to visit Negative aspects related to pain, interventions, communication and sense that hospital inferred impending death	Small sample, single PC service, self-selection, cancer, distance to hospital not reported	Medium
Herce et al.²⁸ Malawi	To evaluate PC programme outcomes, to understand PC needs, knowledge and preferences with the aim of service improvement Rural study	36 patients (included 9 dyads), 11 FCGs (active) Recruitment: on admission to PC programme treatment clinics Diagnosis: Kaposi sarcoma, HIV, cancer	Neno district, (population 130,612) isolated rural area	Rapid evaluation method (REM); chart review Structured and open-ended ITVs, thematic analysis 9 joint ITVs Interviewer: Study investigators, interpreter and HW present	Greatest needs were financial (income and food), high prevalence of pain (64% moderate to severe), 75% of patients received psychosocial support from family Patients’ preferred place of care home 46%, community facility 30%, hospital 24%, FCG: 46 %, 46%, 36% FCG: felt obligated, some volunteered. Time commitment – ADLs, medication, emotional support, symptom care, transport	Small study, specific cultural issues (while this study is generalisable to sub-Saharan Africa, it is not necessarily generalisable in the context of this review)	Medium
Johnston et al.²⁹ Scotland	To understand patient and carer experiences of EoLC, to explore self-care coping strategies Rural and remote study	20 patients, their main carer (and their HCP) Recruitment: purposive sample, PC community nurse Diagnosis: advanced cancer	Rural and remote areas in Highlands and West of Scotland	Qualitative; 53 in-depth, unstructured serial ITVs (2 weeks apart), triangulation, thematic analysis 4 joint ITVs Interviewer: not specified	Patient self-care coping strategies included Maintaining normality (goal setting, taking a break, independence, remain home) Preparing for death (what to expect, funeral planning, saying goodbye) Support from family and friends (physical and emotional), support for family often lacking Physical (symptoms, financial, aids to house) Emotional (acceptance, being positive, control, choice, hope, religion, peers) Support from HCP (home help, out of hours care)	Small sample, recruitment bias, cancer only	Medium
Kelly et al.³⁰ Canada	To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members Rural study	10 recently bereaved aboriginal family members Recruitment: convenience sample, lived near health centre where family member died Diagnosis: not specified	A rural town in Northern Ontario with a catchment of 23,000 Ojibway and Cree aboriginal patients	Phenomenological semi-structured ITVs, crystallisation and immersion techniques, triangulation and member-checking methods Interviewer: nurses + research assistant, not involved in care	Cross-cultural care at the time of death is challenging Service delivery and communication strategies must meet cultural and family needs Respect (respectful directness), communication, appropriate environments (e.g. space to accommodate a larger number of visitors) and caregiving were important to participants for culturally appropriate palliative care First Nations family members described palliative care as a community and extended family experience Generally, relationships with nurses and the care the nurses provided were positive experiences	Small sample, single service, specific culture, only English-speaking families recruited	Medium
Lockie et al.³¹ Pesut et al.³²	To investigate the experiences of rural cancer patients and their FCGs, who commute to an urban cancer centre for palliative care Rural study	15 patients and their FCGs Recruitment: attending regional cancer centre, identified by researcher, approached by volunteer Diagnosis: advanced cancer	South central region of British Columbia, rural and remote communities, outside a major urban centre, population <10,000, mountains with winter snow and ice Population density 3.4 people/km², average length of commute 177 km (one way)	Mixed methods: semi-structured ITVs and written questionnaire, coding, iterative process, themes and subthemes Interviewer: research assistant	Benefits of rural living: environment, privacy, community support, friends, fundraisers. Intangibles of good health-happiness, contentment, peace Challenges of commuting long distances (weather, road conditions, break downs, access to mobile phone coverage), costs of fuel and accommodation, travel was added financial burden (costs) and time lost (work, family and community responsibilities) Positives of attending cancer centre – compassionate care, encouragement Commuting: ‘making it work’ Planning and preparation, well organised, sufficient pain medication, routine, timing of appointments Dealing with unfamiliar territory The toll of commuting – financial, time, FCGs’ own health Making the best of it – utilising time well (errands, shopping, visit friends)	Small sample size, cancer patients	High
Mixer et al.³³ USA	To describe generic (folk) factors that healthcare workers can apply to provide culturally congruent end of life care Rural study	6 key informants (patients with life-limiting illness and/or their FCG (active + bereaved)) = 11 participants in total (9 general informants (HCP/pastor)) Recruitment: hospice workers and pastors Diagnosis: Life-limiting illness	Rural setting – East Tennessee region of rural Appalachia – a region medically underserviced, with 19% living below the poverty line	Qualitative ethnonursing methodology, semi-structured open-ended ITVs, thematic analysis Interviewer: principal investigator and/or trained students	Dignity through respect of folk custom, beliefs and faith and integration of folk care (e.g. folk remedies) into EoLC Spiritual care highly valued, faith fundamental to transition through EOL Diversity in support provided by church members Family care at EOL essential for culturally congruent care – at home, quality family time, however, burden of care → family cohesion or conflict Expect HCP to demonstrate trusting and caring behaviour No paediatric palliative care service Palliative care often misunderstood Symptom management accepted, however, service often declined due to belief PC is contrary to continuing curative care or associated with stigma of death Some patients preferred to stay in hospital than return home	Small sample size, specific cultural group within specified region, self-reported as Christian, selection bias	Medium
Ostertag and Foreman³⁴ USA	To describe baseline community demographics and resources, to start a community inquiry into concerns at EoL by exploring the opinions and experiences of community members and HCPs Rural study	19 family members of patients who had died with (13) or without (6) hospice services. (53 HCPs, 9 hospice volunteers) Disease: >50% cancer or heart disease	Hancock county, rural community	Focus groups, transcribed, thematic analysis	Family member’s pain, physical symptoms and anxieties well-managed regardless of hospice or non-hospice status Poor physician communication common Many non-hospice FCG expressed the wish that hospice-type services had been offered to them, for example, assistance to facilitate a home death Those not enrolled were mainly chronic non-cancer patients; families were unprepared for terminal phase and death Appreciated primary care physicians who maintained a presence until the end, some were ‘invisible’ once cure no longer possible Those who had used hospice were appreciative and would recommend it to others	Small sample, single county	Medium
Payne et al.¹¹ UK	To describe the experiences of patients and carers of EoLC in community hospitals Mixed geographical study	18 elderly patients (⩾65 years) and their FCGs (n = 11) Recruitment: hospital nurses Diagnosis: cancer or advanced condition	4/6 sites were rural 3 small GP-led and 1 medium shared – care hospitals in small towns or rural areas	Semi-structured ITVs (8 joint ITVs), grounded theory, open coding, thematic analysis 8 joint ITVs (5 at home after respite, 3 in hospital) Interviewer: researcher, relationship to participants not specified	Rural community hospitals Flexibility Local (easy visiting) Personal care Community hospitals are acceptable for EoLC	Small sample, recruitment bias, 8 joint ITVs, 2/3 were retirees not ‘rural locals’	High
Pesut et al.^35,36 Canada	To gain understanding of the values informing and responsibilities that support good palliative care from rural participants’ perspectives Rural study	95 rural residents including 25 FCGs identified by ‘champions’ Recruitment: purposive /snowballing, identified by community PC champions Diagnosis: not specified	4 rural communities in Western Canada population <10,000, located at least 3 h by car from specialist palliative care treatment centre	Ethnography 51 days of field work, over 2 years, 95 semi-structured ITVs and 74 h of direct participant observation. Thematic analysis Interviewer: university students	Core values of Families experienced meaning in caring with satisfaction outweighing the burden; responsibilities include providing, managing and co-ordinating care and advocacy Pain and symptom management a priority with expectation professional support available. The degree of symptom control shaped perception of quality of dying Knowing and being known – advantages and disadvantages as illness trajectory and grief were public events with loss of anonymity Being present and available – FCG needed on-site support not just a phone call Community and mutuality especially tangible support such as fundraising, home renovations, meals. Often those participants who were ‘givers’ to the community received the highest amount of support Families, HCP and administrators need to work together Remote healthcare decisions can severely undermine local capacity causing fragmentation in already underserviced communities	Single region, snowballing recruitment bias, no indication if FCGs are active or length of bereavement	High
Revier et al.³⁷ USA	To explore the meaning of hope for the FCG in the context of end-of-life care, identify which nursing actions influence hope Rural study	FCG (n = 6); currently caring or had cared within previous 6 weeks Recruitment: identified by hospice programme nurses return consent by mail to researcher Diagnosis: not specified	Rural, Midwest USA	Phenomenological; two time-point dialogical engagement (hospice enrolment and 4–6 weeks bereavement); data analysis: extraction-synthesis, heuristic interpretation Interviewer: researcher	Four interconnecting themes as follows: Engaging, strengthening and maintaining connections Easing of self Finding meaning in the situation Acceptance Hope for FCG assists navigation through the caregiving experience, finding positive meaning within the situation and moving towards acceptance of the situation and healing Hope supported through relationship with nurses and information	Small sample, gatekeeping, recruited by nurses	Medium
Tamannai et al.³⁸ Cameroon	To understand the needs of patients and their families visited by a children’s PC nurse in Cameroon and to identify aspects of the service that can be improved Rural study	3 patients (14, 9 and 10 years); 7 FCGs (3 mothers, 2 fathers, 1 grandmother, 1 grandfather) Recruitment: not reported Diagnosis: paediatric Burkitt lymphoma	FGC occupation – ‘farmer’	Qualitative, semi-structured ITVs with open-ended Q, predesigned topic guide, thematically analysed Interviewer: not specified	Needs identified: financial aid, general disease improvement and prayers Carers did not know what to expect at home and how to manage preventable problems Incongruence in FCGs’ and patients’ views on clinical status and needs Open communication between FCGs and patients was challenging Failure to cure → acceptance outcome was in God’s hands The disease greatly influenced QoL of patients and FCGs	Small sample, single service recruitment, programme evaluation, RR not provided, bias as all receiving free PC (interviewee courtesy bias), limited to lymphoma	High
Williams et al.³⁹ Canada	To share, in the form of a story, the experiences of rural female FCGs focusing on what fosters their hope (Living with Hope Program) Rural study	23 female FCGs (active) Recruitment: convenience sample, initial contact by PC service via mail Diagnosis: advanced cancer	Living outside major population areas in Saskatchewan and Alberta, rural areas designated by provincial postal codes	Daily 5-min journal entry on challenges and hopes faced and what fosters hope; 2-week period. Narrative enquiry approach – journal entries transcribed into narrative, thematic analysis, reported as a narrative story ‘Hope against hope’	342 journal entries, 4 themes: Hope ‘I hope tomorrow is better’ ‘Hoping against hope’ → tension between hoping for and recognising there is no cure Hope is a choice and a mindset Hope influenced by temporal circumstances (travelling, finances mood and health of patient), social support; faith and spirituality Practical and emotional challenges (fear, worry, sadness, guilt, helplessness, anger, loneliness, empathy, love and gratitude) Multiple self-care strategies The emotional journey	Programme evaluation, small sample size, no randomisation or control group; cancer only Descriptive stories from only female FCGs	Medium

FCG: family caregiver; PC(S): palliative care (service); RR: response rate; CBS-EoL: Caregiver’s Burden Scale in End-of-Life Care; MSPSS: Multidimensional Scale of Perceived Social Support; ECOG: Eastern Collaborative Oncology Group performance scale; NOK: next of kin; QoDD: quality of death and dying; GAD-7: general anxiety disorder 7-item scale; PHQ-8: patient health questionnaire 8-item depression scale; EoL(C): end of life (care); HCP: healthcare professional; ESRD: end-stage renal disease; CHF chronic heart failure; COPD: chronic obstructive pulmonary disease; ITV: interview; HNC: home nursing care; ADLs: activities of daily living; HW: health worker; QoL: quality of life; SD: standard deviation; CI: confidence interval.

Data synthesis

Study findings were coded into four categories: (1) patient perspectives, (2) family caregivers’ perspectives, (3) facilitators and barriers and (4) influence of rural place and culture. Each category was analysed thematically and reported descriptively. Due to heterogeneity, a meta-analysis was not possible. Differences in quality assessment, data extraction and synthesis were discussed by email and resolved by consensus.

Results

Overview of findings

Of the initial 450 articles identified and screened, a total of 27 articles^11,14–39 reporting on 22 separate studies met our inclusion criteria (see Figure 1 for PRISMA flowchart⁴⁰). In total, 19 studies (86%) were conducted in developed countries: Canada (7),^{14,15,22–24,30–32,35,36} United States (5),^{17,26,33,34,37} Australia (2),^18,27 Scotland (2),^16,29 Norway (2),^19–21 and England (1);¹¹ and 3 in sub-Saharan Africa including Malawi (1),²⁸ Cameroon (1)³⁸ and one multi-nation study (Malawi, Kenya, Uganda).²⁵ Three studies focused on indigenous populations (Australia,¹⁸ Canada³⁰ and United States³³). Rural definitions, locations and degree of isolation between studies were heterogeneous; four studies^{18,25,29,31,37} included remote locations. Studies were published between 2007 and 2015; no published articles were identified in 2016. In all, 18 studies were qualitative, 3 quantitative,^14,15,17,24 and 1 mixed-methods.^31,32 Qualitative methods were described as ethnographic (4),^{18,25,33,35,36} phenomenological (4),^{19–21,30,37} grounded theory (1),¹¹ and non-specified (9). Studies collected data from interviews (face-to-face (17), phone (1)^22,23); surveys (written (3),^17,24,31,32 phone (1)^14,15); focus groups (1),³⁴ and analysis of personal daily journals (1).³⁹ Sample size ranged from 5^19,20 to 672.¹⁷

Figure 1.

PRISMA flowchart.

Participants included those with cancer and non-cancer diagnoses; active and bereaved family caregivers. A cross section of participant ages was found, with one paediatric study³⁸ and eight studies where all patients (participants or deceased) were elderly (⩾60 years).^{11,16,17,19
–23,26,33} Patient and family caregiver characteristics are reported in Tables 2 and 3.

Table 2.

Characteristics of patients.

Patient (n=)	167
Studies including patients (n=)	12
Gender
Female	81
Male	53
Not specified	33
Age (n studies; range)
Range	9–93 years
Paediatrics	1 (9–14 years)
Adults	5 (30–93 years)
All >65 years	4
Age not reported	2
Diagnosis (n studies)
Cancer only	8
Non-cancer only	0
Cancer + non-cancer	3
Not specified	1
Receiving PC (n studies)
Yes	10
Interviewed at time of enrolment into PC service	1
Not specified; attending oncology outpatients	1

PC: palliative/hospice care.

Table 3.

Characteristics of FCGs.

Studies including FCG (n=)	19
FCG (n=)	1086
Active	280 (26%)
Bereaved	770 (71%)
Not specified	36 (3%)
Gender
Female	762 (70%)
Male	227 (21%)
Not specified	97 (9%)
Age
Range	27–90 years
Mean age >60 years	4 studies
Age not reported	9 studies
Relationship to patient
Spouse/partner	422 (39%)
Parent	12 (1%)
Adult child	402 (37%)
Sibling	5 (0.4%)
Other family	237 (22%)
Friend	8 (0.6%)
Recipient enrolled in PC
Yes	17 studies
Not specified	1 study
Interview at time of enrolment in PC service	1 study

FCG: family caregiver; PC: palliative/hospice care.

Three studies explored the experiences and perspectives of patients only;^16,19–21 eight of family caregivers only;^{14,15,17,24,26,27,30,37,39} eight of both patients and family caregivers;^{11,18,22,23,28,29,31,32,38} and three were community-focused studies including family caregivers.^25,34–36 One study compared urban and rural perspectives,^14,15 one the congruence between patient and family caregiver views,³⁸ and one study included family caregivers of patients receiving or not receiving hospice care.³⁴ Length of end-of-life care by family caregivers ranged from 2 weeks to 120 months;^26,28 11 studies did not report length of care.

Patient experiences and perspectives

In total, 11 studies described the end-of-life care experiences and perspectives of rural patients and emphasised the importance of not giving up,^16,19–21 finding meaning in life,²¹ ‘steadfastly living life’,¹⁶ maintaining dignity,^16,19,25,29 independence,^{16,19,21–24,29} and normality.^16,19,29 This required patients to redefine normal,^{16,19,20,23,29} come to terms with change,^21,23,29 (with resignation¹⁶ or struggle¹⁹) and make the most of everyday.¹⁶ Patients lived with exhaustion and stress,^19,20,22,23 ‘in conflicting states of hope and despair (p. 783)’,¹⁹ and balanced independence with an awareness of their deterioration and increasing dependence on others;^22,29 talked about impending death while holding onto hopes and dreams for the future;^19,20,29 and endured life bravely while having no energy left to enjoy life.^19,20

Dignity was maintained by refusing to be defined by illness^{16,19,22,23,29} and finding hope^{19,21,23,25,29} as ‘hope is the key to enduring distress (p. 785)’.¹⁹ Awareness of increasing dependence on family and friends was associated with fear of becoming a burden^{16,19,22,23,29} and/or losing independence, so often they did not ask for help.^19,22 One Norwegian patient found hope in pursing life-prolonging chemotherapy despite losing dignity through side effects,¹⁹ while others refused chemotherapy in order to maintain their quality of life.²⁹

Preparing for death, ‘without loss of hope or the desire to keep living (p. 1622)’²⁹ was important for many patients. Patients engaged in funeral planning,²⁹ completing wills,^16,29 preparing self and family for impending separation,^16,29 and setting affairs in order.^16,18

In sub-Saharan Africa, pain dominated the lives of patients^25,28 with 31 (86% of patients) in Malawi reporting pain to be moderate to severe.²⁸ Pain issues were reported in four studies from developed countries.^20,21,29,32 with participating patients describing pain management as important,²¹ essential for self-care,²⁹ and the importance of anticipating medication requirements when commuting long distances.^31,32

Support of family, friends, community,^22,28 and HCPs²³ was seen as essential and valued; however, despite this connection, the message from two studies was that patients felt isolated as their disease progressed, ‘I’m part of the community but I feel alone (p. 2)’²² and having to ‘walk the palliative path alone (p. 12)’.²⁰

Family caregiver experiences and perspectives

Rural family caregivers spoke of taking on the responsibility of providing ‘direct care, managing and coordinating care, and advocacy (p. 127)’³⁶ for their family member; however, the care provided was ‘not only about the dying person, but also about the living relatives (p. 392)’.¹⁸ Some family caregivers reported lacking knowledge²⁹ and with ‘few [being] physically, emotionally, or educationally prepared for the tasks and responsibilities of caregiving (p. 5)’³⁷ especially as the illness progressed.²² Family caregivers experienced a broad spectrum of negative emotions.³⁹ ‘Participants were very concerned with ensuring the dignity and comfort of their loved ones during their final days and experienced distress, guilt, and anger if they were unable to fulfil these self-designated responsibilities (p. 6)’.³⁷ If family caregivers could find meaning in the situation by focusing hope on the day-to-day moments,³⁷ redefining normal,^23,39 connecting and separating,³⁷ they were better positioned to cope with the responsibilities, burden of care and transitions in roles.²³ Self-care and maintaining their own quality of life were important; however, Williams reported that family caregivers often lacked the ‘time and energy to do everything they needed and to care for themselves (p. 6)’.³⁹

To fulfil their caregiver responsibilities, family caregivers required support^{14,15,22,28,35,36} from family, friends, neighbours and HCPs and they ‘identified the need of having someone to talk to and being appreciated by the care recipient (p. 15)’.¹⁴ Some family caregivers accepted the role out of ‘familial obligation’;²⁸ however, many found meaning in caring for their loved ones^36,37 with the burden of care ‘outweighed by … the satisfaction they derived from having made a meaningful contribution (p. 130)’.³⁶

Facilitators and barriers to receiving end-of-life care in rural/remote settings

Communication; accurate and timely information

The greatest support need of participating rural patients and family caregivers in developed countries was informational; however, the need for accurate information was stated or implied in all included studies from both developed and developing countries. Effective communication between HCPs and patients/family caregivers and within families³⁸ reduced pain and distress,²⁵ empowered carers to fulfil their responsibilities,³⁷ facilitated smooth transitions of care,²⁷ and allowed patients and families to prepare for death.^18,29 Most, but not all¹⁹ participants were satisfied with the standard of communication by rural HCPs. Participants in nine studies^{11,14,15,17,19,20,22,23,27,29,34,38} reported one or more communication difficulties such as receiving conflicting or untimely information,^34,36 uncertainty as to ‘which physician was in charge’,¹⁷ and not receiving information from the person they considered to be the expert.^23,36 While some patients accepted medical advice without questioning,¹⁶ others considered false hope³⁰ or poor communication a lack of respect for the patient and their family^22,23,30 and that ‘not knowing was worse than knowing (p. 1623)’.²⁹ One study revealed that primary care physicians were highly praised for honesty and presence at the time of death.³⁴

Formal services

Brazil et al.¹⁴ reported 82.6% of participating rural family caregivers indicated that formal palliative care services were readily available, with 68.6% having access to services after hours. While another study³⁵ reported a HCP was always available, these results were not universal with four qualitative studies reporting inadequate accessibility to care and continuity of care^{19,20,22,26,29} especially after hours.^22,23,26,29 Access to HCPs with palliative care training,^23,26 paid qualified in-home carers,²⁶ after-hours pharmacies or morphine,^25,26 respite care^14,15 and paediatric hospice³³ was limited or unavailable.

Features of care that facilitated quality end-of-life care included personalised care;^23,26 knowing and being known by the HCPs;³⁵ and a willingness of HCPs to go beyond their professional care.³⁵ However, loss of privacy and anonymity³⁵ and an expectation that friends will always be available³⁵ were perceived as barriers. Five studies^{19–23,26,32} reported that the quality of care provided was dependent on the personality of the HCP with difficulties arising if personality conflicts arose as often no alternative provider was available.¹⁹

In three studies, when care at home was not possible, the local community hospital was an acceptable alternative^26,28,33 and were considered safe,²⁶ small, convenient, personal, welcoming and the nursing staff described as caring and compassionate. However, rural hospitals were not viewed positively by Indigenous participants in Australia¹⁸ and Canada,³⁰ mainly due to cultural insensitivity.

Informal social support – family, friends and neighbours

A total of 19 studies reported on the informal support provided by family, friends, neighbours and the community with some participants stating that family is the ‘most important’ factor^19,21 and essential for ‘culturally congruent care’.³³ Brazil et al.^14,15 reported that the greatest unmet needs identified by rural family caregivers were the tangible or practical needs. Community support was reported to have a positive influence on rural end-of-life care with one participant describing a sense of solidarity as ‘[we] take care of each other … That’s just the way it is! (p. 5)’²¹ It was acknowledged in two studies that not all patients have happy family relationships^33,39 and in another that community support could not be taken for granted and was highly reciprocal in that those participants who had been involved in giving to their rural community also received the highest amount of support from that community.³⁵ Despite the strong sense of community, studies reported that as disease progressed and patients lost mobility and independence, there was a sense of isolation as quoted from a study participant: ‘I am part of my community but I feel alone. Family and friends come to visit me, but I feel isolated as they are unable to understand what is happening to me and my wife (p. 2)’.²²

Emotional support

Strong emotional support was identified as a facilitator of quality rural end-of-life care and was dependent on good communication, information, the presence of HCPs, support of other patients,²⁹ faith and hope. Hope was maintained through connection with family,¹⁹ friends and being linked to something outside the illness.³⁷

Spiritual support

Spiritual connection and faith fostered hope,^30,33,37,39 with faith seen as an enabler to persevering in life as death drew near. Faith was reported to be fundamental to rural Appalachians and their transition through end-of-life care.³³ In many rural communities, church support was not limited to spiritual issues as congregations also provided physical and financial support.³⁸

Sub-Saharan Africa

Support needs across the studies were similar; however, contexts varied and the experiences of patients and family caregivers were dependent on where they lived. Three studies^25,28,38 were conducted in four developing countries in sub-Saharan Africa where ‘poverty shaped how people died (p. 5)’.²⁵ The greatest needs of patients and family caregivers in sub-Saharan Africa were pain relief and access to basic medications,²⁸ practical support, funds to purchase even the basics of life (food, clothing),^25,28,38 information regarding the diagnosis and what to expect,^25,38 and access to trained HCPs. These three studies were all programme evaluations, and they described how the implementation of palliative care services improved the quality of life of both patients and family caregivers by restoring dignity through ‘transforming a life of pain and hopelessness’.²⁵

Influence of rural place and culture

The rural location of participants was important as a cultural dimension and ‘participants spoke eloquently of the benefits of their rural lifestyle including physical beauty, privacy and accessibility of recreational activities. The level of support provided by community members was an important factor in why individuals valued rural life (p. 190)’.³²

Despite diversity in rural settings each was seen as having positive and negative influences on rural end-of-life care for both patients and family caregivers with distance identified as the greatest negative influence. One study^31,32 focused on the issues surrounding commuting for treatment, with another seven studies^{18–23,25,26,35,36} reporting the experiences relating to travel distances, not only to access outpatient care but also for HCPs in providing home care. Commuting for treatment was mostly seen as stressful and exhausting;^19,22,31 inconvenient¹⁹ and expensive;^25,26,31,32 impacting negatively on the health of family caregivers³¹ and resulting in fragmented care.²² Some accepted commuting²¹ as ‘one of the compromises they have to make for living at home, that is, to live in a place that contributed to their overall health (p. 12)’.²⁰

Geographical distance or ‘living off the beaten track’²¹ limited accessibility to home-based services as some patients lived outside the boundary for home visits,²⁶ visits were less frequent especially in bad weather^18,31,32 and were often not available at short notice or after hours.^22,23,26 However, opinions regarding the effect of distance on the quality of care were divided with some seeing it as a ‘major obstacle in providing adequate home-based palliative care (p. 391)’¹⁸ and others not viewing rural living as a disadvantage.²¹ However, with advanced illness, the participants’ sense of solitude became one of isolation.²² Geographic isolation also explained the greater unmet emotional needs of rural caregivers as they lacked ‘having the support of a group of people who are experiencing the same thing (p. 16)’.¹⁴

Three studies reported that mobile phones,²⁵ computers and Internet access^21,32 helped reduce the sense of rural isolation by maintaining contact with distant family and improving access to HCPs; however, these technologies are not available everywhere^31,32 and for some patients a phone call was not sufficient, as there was a preference for the physical presence of HCPs.^26,35

Meaning of home or home country. In one study, 46% of patients and family caregivers reported their preferred place of care to be ‘home’,²⁸ as ‘being at home is like a brick being in the right place: this is my land and these are my people (p. 7)’.²¹ Many of the rural participants were entrenched in their community and had ‘memories of the landscape, environment, and people they once knew (p. 5)’²¹ resulting in a strong place attachment (physical, social and autobiographical). It was suggested,

that the rural context may provide an advantageous healthcare environment. Its potential to be a source of comfort, security, and identity concurs with cancer patients’ strong desire for being seen as unique persons … [and a] confidence ‘this place and these people will be there for me’.²¹ (p. 8)

For indigenous rural residents, ‘home’ or ‘country’ had special cultural significance.¹⁸ The biggest barrier to using hospital-based palliative care services for these participants was not being able to die ‘in country’.¹⁸ The lack of cultural awareness by HCPs and misperceptions of the concept of palliative care were barriers to accepting palliative care.^18,25

Discussion

This systematic literature review describes rural end-of-life care through the experiences and perspectives of rural patients and their family caregivers and illustrates the importance of listening ‘to those experiencing terminal illness and [to] hear what they emphasise as they reflect on their lives (p. 782)’.¹⁹ Rural residents clearly hold ‘distinct views’⁴¹ on the realities of rural life and rural dying, including benefits and challenges. The voice of rural patients and family caregivers helps ensure services are ‘relevant to [and] embraced by community members (p. 462)’.³ Consistent with previous reports⁹ rural participants in this literature review were mostly satisfied with the end-of-life care provided to them; however, most were realistic and openly acknowledged their unmet needs which were often ‘related to context … and shaped by reduced access and availability of services’.⁴² While palliative care was available in all the countries included in this systematic review, the development and integration of palliative care into mainstream health service provision within each location were variable. A global mapping study by Lynch et al.⁴³ reported that the provision of palliative care in 2011 remained localised in Cameroon while becoming increasingly integrated in Kenya and Malawi. On a country level, palliative care was at an advanced stage of integration in Uganda and the developed world; however, participants in this systematic review indicated that access remained limited especially in remote areas.

The over-riding themes for most patients and family caregivers in all locations were ‘living life’; holding onto hope, dignity and meaning; receiving personalised care; being known; and for HCPs to demonstrate ‘presence, reassurance and honouring choices’.⁴⁴ In sub-Saharan Africa, this was possible once pain was managed. The importance of family and dying within one’s community was expressed by most participants; however, this was more significant for indigenous participants who considered cultural sensitivity and respect for their rituals¹⁸ and ‘folk culture’³³ to be essential for end-of-life care. The end of life issues faced in general by all patients and family caregivers, regardless of where they live,^45–47 were raised by the rural participants in this review; however, there are differences, facilitators and barriers, unique to rural settings that significantly impact rural end of life care.

Barriers to providing rural end of life care, such as the hardship of distance and isolation, are not only just the concerns of rural patients and family caregivers but also acknowledged in the literature by rural palliative and community nurses.^48,49 While there is no expectation that resources in rural areas should be equivalent to those available in urban settings,⁵⁰ some rural HCPs lament their lack of palliative skills, training and mentoring.^51,52 This insufficiency is especially significant in the hospital setting as end-of-life services need to be integrated into rural hospitals⁵³ as they often act as substitute inpatient hospices.^54,55

It was frequently reported in the literature that effective communication between the patient/family caregiver and HCPs and within multidisciplinary teams is essential but often lacking.^9,56 Patients and family caregivers expressed poor communication as a barrier to receiving quality end-of-life care especially when care was fragmented due to distance and the need to commute between different locations and HCPs. Few studies in the literature reported on information and communication technologies for end-of-life care⁵⁷ and while mobile phones and the Internet^21,25,32 enabled some participants to stay connected, no rural studies were identified reporting on the use of communication technology in rural settings or if terminally ill patients would accept this as an alternative to physical contact.^3,26,35

An additional challenge faced by rural communities is the ageing population^4,58 with many rural elderly living on their own²⁰ as families disperse. While the elderly are less likely to complain and demand little, they bear significant stress.²⁰ Participants in this review were reliant on support from neighbours and the community with informal networks being an untapped resource⁵⁹ and the focus for future research. Rural communities are endowed with an ‘incredible volunteer base’ and many ‘very generous people … who are really genuinely concerned about the community’.⁴⁸

In contrast to the literature which places a high priority on pain and symptom control,^50,53 very few participants in developed countries indicated that this was a high priority. This is possibly due to the aims and specific focus of the included studies, and with most participants enrolled in palliative/hospice care, it is also possible these services were delivering satisfactory symptom management.⁵⁶ By comparison, in Kenya and Malawi, where palliative care is becoming more integrated into mainstream health services,⁴³ pain management remains a high priority. Effective palliative/hospice care also increases the chance of patients receiving care and dying in their preferred place, usually home,^28,53 however, with the exception of Indigenous participants,^18,30 and consistent with previous studies,⁵³ many participants in this review were accepting of the transition to the community hospital.^11,27,33

The results of this review show that while researchers continue to seek out the end-of-life care experiences and perspectives of rural patients and family caregivers, this research has mainly occurred in North America and mainly with elderly, Caucasian and cancer patients. More work is required on all aspects of end-of-life care from patient and family caregiver perspectives, especially those living in remote areas or indigenous communities within developed nations where formal HCP support is either very limited or absent; the experiences of patients with advanced chronic non-cancer disease; paediatric patients and their family caregivers; from other developing countries in Asia, the Pacific and South America; patients and family caregivers who have to relocate; the evaluation of technology in enhancing information and communication; and longitudinal studies examining changes in experiences and perspectives over time.

This review affirms that recruiting patients and their family caregivers at end-of-life is difficult,^7,60 and even more so in rural regions, resulting in small sample sizes. However, it cannot be assumed that the findings from small sample studies are irrelevant and that the rural voice can be added in unison with urbanites. The risk here is that universal models of care may develop and ignore the specific attributes of the rural psyche (‘stoicism, fatalism … self- reliance and rugged independence, coupled with a lessened sense of confidentiality and increased pressure to conform due to the smaller, more intimate nature of smaller rural environments’⁴¹) or the specific rural challenges such as distance and isolation. Collaborative, multi-site or multi-national research may address this issue.

Limitations

This systematic literature review had limitations in relation to the quality of the identified studies and completeness of the review. Studies where titles, abstracts or keywords omitted the selection criteria wording may have been overlooked; however, electronic searching was augmented by handsearching journals and reference lists. Some excluded studies included rural participants; however, rural data were not identified, and so, this exclusion meant that some potentially informative perspectives were not gained. Generalisability of results is limited by small sample size; heterogeneity and inconsistency in rural/remote definition meaning studies reported on a variety of rural locations, populations and proximity to health services; recruitment bias (single-service recruitment with most participants receiving formal end-of-life care); predominance of elderly participants who may be more accepting of their circumstances than young patients; high proportion of cancer patients; and North American bias.

Conclusion

It is necessary to explore end-of-life care experiences and perspectives of rural patients and their family caregivers, as valuable insights will be lost and rural patients/family caregivers’ care may be compromised if their voices and needs are ignored. Common themes such as hardship of distance reduced access to palliative care, community support and importance of home and ‘country’ highlight the influence of rural location on end-of-life care. While the number of studies has increased since 2009,⁸ especially in North America, there still remains limited published rural studies reporting on patient and family caregivers’ experiences and perspectives on rural end-of-life care and further research is encouraged. The development of national and international collaborative work using a universal definition of ‘rural’ may begin to more clearly articulate the ‘rural’ voice.

Footnotes

Acknowledgements

S.R. was responsible for conception; design; acquisition, analysis and interpretation of data; drafting, revising and final manuscript. All co-authors contributed to review of titles and/or abstracts/full texts; analysis, quality assessment and interpretation of data; revising the article critically for important intellectual content; and approval of the near final version to be published.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

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