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Table 2 Characteristics of included studies

From: Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review

First author (year)

General study aim

Study design/ methods

Setting (Country)

Main feeding methods being studied

Population of the study

Number of participants (staff:surrogate)

Quality rating

Quantitative studies

Hodges MO (1994) [24]

Examine internists’ attitudes and decision-making regarding tube feeding for older patients including people living with dementia (PLWD) with unknown patient and family’s preferences

Self-administered, structured questionnaire with case scenarios

Nursing home (USA)

Tube feeding in general

Physician: Board-certified Internal Medicine (99%), subspecialty (55%) (no raw number of the subgroups)

326 (326:0)

Good

Kuehlmeyer K (2015) [25]

Explore how nursing staff evaluate the nonverbal feeding related behaviors of PLWD

Self-administered, structured questionnaire

Nursing home (Germany)

Unspecified: nonverbal feeding-related behaviors towards tube feeding and hand feeding

Mixed: certificated nurse (65%), nursing assistant (23%) (no raw number of the subgroups)

131 (131:0)

Good

Teno JM (2011) [26]

Examine tube feeding decision-making based on interviews with bereaved family carers

Telephone interviews with structured questionnaire

Mixed- PLWD died in nursing home (76.4%), hospital (15.6%) (USA)

Tube feeding in general

Family member: child of the decedent = 66.6%, spouse = 8.4%, sibling = 3.5%, other = 21.5%

486 (0:486)

Good

Chen PR (2019) [27]

Explore perceptions of hospital staff regarding reducing tube feeding use of patients with advanced dementia

Self-administered, structured questionnaire

Acute Hospital (Taiwan)

Tube feeding in general

Mixed: Physician (101), Nurse (278), dietician (42), paramedial staff (pharmacists, speech therapists, occupational therapists, physical therapists, psychologists, and respiratory therapists) (103), administrative staff/ social worker (44), attendant/ volunteer (56)

624 (624:0)

Moderate

Gieniusz M (2018) [28]

Evaluate physician knowledge and perceptions regarding the use of percutaneous endoscopic gastrostomy (PEG) tubes in PLWD

Self-administered, structured questionnaire

Acute hospital, outpatient (USA)

PEG

Physician: attending physician (82), resident physician (50), fellow (11), others (3); no information of the rest

168 (168:0)

Moderate

Kwok T (2007) [29]

Examine attitudes of family carers of PLWD regarding life sustaining treatment including tube feeding

Interview with structured questionnaire

Mixed- nursing home (84% of PLWD under their care), psychogeriatric ward, long-term care ward (Hong Kong)

Nasogastric (NG) intubation, PEG

Family member: spouse (9), offspring (32), other (10)

51 (0:51)

Moderate

Modi SC (2007) [30]

Examine the relationship between race of patient/ physician and recommendation for PEG placement

Self-administered, structured questionnaire with case scenarios

Acute hospital, follow-up clinic in hospital (USA)

PEG

Physician: Family Medicine (457), Internal Medicine (479), Geriatrics (44), unknown (103)

1083 (1083:0)

Moderate

Norberg A (1994) [31]

Compare nurses’ reasons to feed or not to feed PLWD within six countries

Interview with structured questionnaire and case scenarios

Mixed- institutions considered providing high quality care (Australia, Canada, China, Finland, Israel, Sweden, USA)

Unspecified: hand feeding, forced feeding, tube feeding

Nurse: ward sister (67), staff nurse (82); participants from USA (39), Australia (20), Canada (20), China (8), Finland (20), Israel (20), Sweden (20)

149 (149:0)

Moderate

Pasman HRW (2004) [32]

Examine characteristics of PLWD for whom it is decided to forgo artificial nutrition and hydration (ANH) and characteristics of decision-making process

Self-administered, structured questionnaire

Nursing home (Netherlands)

ANH in general: PEG, NG, intravenous (IV) infusion, subcutaneous hydration (hypodermoclysis)

Patient: 178 cases (PLWD) in whom ANH was forgone; questionnaire about the cases filled by nursing home physician (178 cases), nurse (128), family member (128) - filled by all (116 cases)

178 (0:0) (178 PLWD) *unit of analysis is PLWD

Moderate

Pengo V (2017) [33]

Examine physicians and nurses’ opinions regarding antibiotics, artificial nutrition and hydration for PLWD with different life expectancies

Self-administered, structured questionnaire

Mixed- hospital, geriatric clinic, residential and semi- residential facilities (Italy)

ANH in general

Mixed: physician (288), nurse (763)

1051 (1051:0)

Moderate

Shega JW (2003) [34]

Examine factors that affect physician recommendations of PEG for PLWD

Self-administered, structured questionnaire with case scenarios

Acute hospital: case scenarios of PLWD admitted to an acute hospital (USA)

PEG

Physician: General Internal Medicine = 50.8%, Family practice = 49.2%

195 (195:0)

Moderate

Valentini E (2014) [35]

Examine physicians and nurses’ opinions regarding ANH for terminally ill PLWD

Self-administered, structured questionnaire

Mixed- hospital, Geriatric clinic, residential and semi- residential facilities (Italy)

ANH in general

Mixed: physician (288), nurse (763)

1051 (1051:0)

Moderate

van Wigcheren PT (2007) [36]

Examine incidence of ANH in PLWD and characteristics of ANH decision-making process for PLWD

Self-administered, structured questionnaire

Nursing home (Netherlands)

ANH in general: food and fluids (NG, PEG) and fluids only or hydration (IV infusion, hypodermoclysis)

Physician: nursing home physician

704 (704:0)

Moderate

Babiarczyk B (2014) [37]

Explore attitudes and experiences of caring staff about feeing problems

Self -administered, structured questionnaire

Nursing Home (Norway, Poland)

Unspecified: feeding difficulties, forced feeding

Mixed: professional staff (nurses (19), certificated nurse assistant (10), healthcare assistant (8) nursing student (2), Dietician (1), physiotherapist (1)), Unprofessional (student (3), assistant (8)); participants from Norway (28), Poland (24)

52 (52:0)

Poor

Golan I (2007) [38]

Evaluate decision-making process of family members and physicians regarding PEG insertion for PLWD referred for PEG

Interview with structured questionnaire

Acute hospital (Israel)

PEG

Mixed: physician referring for PEG (72), family member or guardian (126), gastroenterologist (34)

232 (106:126)

Poor

Qualitative studies

Aita K (2007) [39]

Explore why Japanese physicians feel bound to provide ANH, particularly PEG, to PLWD

Semi-structured interviews

Mixed- acute hospital, long-term care hospital (Japan)

ANH in general: particularly to PEG

Physician: Internal Medicine (11), Surgery (2), Neurology (4), Neurosurgery (3), Palliative care (1), Psychiatry (3), Geriatrics (1), GI surgery (1), GI Internal Medicine (1), Family physician (2), General Medicine (1)

30 (30:0)

Good

Bryon E (2010) [40]

Explore nurses’ involvement in ANH decision-making for hospitalized PLWD

Semi-structured interviews

Acute hospital ward- Geriatrics, Geriatric Psychiatry, Palliative support team, Internal Medicine (Belgium)

Tube feeding, gastrostomy

Nurse: registered nurse (17) Master’s in Nursing Science (2), undergraduate nurse (2)

21 (21:0)

Good

Bryon E (2012) [41]

Explore nurses’ experiences in ANH decision-making for hospitalized PLWD

Semi-structured interviews

Acute hospital ward- Geriatrics, Geriatric Psychiatry, Palliative support team, Internal Medicine (Belgium)

Tube feeding, gastrostomy

Nurse: registered nurse (17) Master’s in Nursing Science (2), undergraduate nurse (2)

21 (21:0)

Good

Bryon E (2012) [42]

Explore nurses’ experiences with nurse-physician communication during ANH decision-making for hospitalized PLWD

Semi-structured interviews

Acute hospital ward- Geriatrics, Geriatric Psychiatry, Palliative support team, Internal Medicine (Belgium)

Tube feeding, gastrostomy

Nurse: registered nurse (17) Master’s in Nursing Science (2), undergraduate nurse (2)

21 (21:0)

Good

Jox RJ (2012) [43]

Explore experiences of family and professional surrogates regarding medical decisions including tube feeding for PLWD

Think aloud with case scenarios

Unspecified (Germany)

PEG

Mixed: family surrogate (16), professional surrogate (16)

32 (0:32)

Good

Lopez RP (2010) [44]

Explore organizational influence on practice of tube feeding for PLWD in nursing homes

Focused ethnographic; observations, semi-structured interviews, abstraction of publicly available material

Nursing home- two nursing homes with high and low use rate of tube feeding (USA)

Unspecified: feeding practice regarding both tube feeding and hand feeding

Mixed: observations of all nursing home staff and residents (no number); semi-structured interviews of staff including director of nursing (2), senior administrator (2), speech and language pathologist (2), licensed nurse (11), certified nurse assistant (6), social worker (2), diet technician (2), recreational therapist (2)

At least 29 (29:0)

Good

Luhnen J (2017) [45]

Explore values and experiences of legal representatives of PLWD regarding healthcare decisions including PEG

Semi-structured interviews

Mixed- associations related to legal representatives and nursing homes (Germany)

PEG

Mixed: family surrogate (12), professional surrogate (12)

24 (0:24)

Good

Pasman HRW (2003) [46]

Explore nurses’ experiences and responses to feeding problems of PLWD in daily practice

Observations, semi-structured interviews

Nursing home (Netherlands)

Unspecified: hand feeding, forced feeding, ANH

Mixed: observations of 94 PLWD needed help with meals; more depth for those 60 PLWD having feeding problems and 15 having aversive behavior; including their family and 46 nurses helping them

At least 140 (46:0) (94 PLWD)

Good

Pasman HRW (2004) [47]

Explore role and influence of participants (family and professionals) in the decision making to start or forgo ANH for PLWD

Observations, semi-structured interviews

Nursing home (Netherlands)

ANH in general: to start or forgo ANH

Mixed: observations of decision-making process for 35 PLWD; involving nursing home physician (8), family members (32), nurses (43)

83 (51:32)

Good

The AM (2002) [48]

Explore decision-making process behind withholding ANH from PLWD in nursing home

Observations, semi-structured interviews

Nursing home (Netherlands)

ANH in general: withholding ANH

Mixed: observations of 35 candidates (PLWD) for the withholding of ANH; involving Nursing home physician (8), family members (32), nurses (43)

83 (51:32)

Good

Buiting HM (2011) [49]

Explore Dutch and Australian doctors’ experiences of decision-making of ANH for PLWD

Semi-structured interviews

Mixed- nursing home, hospital (Australia, Netherlands)

ANH defined by the participants themselves

Physician: nursing home physician (14), geriatrician (6) GP (9) palliative care specialists (1); participants from Netherlands (15), Australia (15)

30 (30:0)

Moderate

Gil E (2018) [50]

Explore family guardians’ attitudes and cultural considerations of decision-making of tube feedings for PLWD

Observations, follow-up semi-structured interviews

Acute hospital- Gastroenterology outpatient unit (Israel)

PEG

Family member: descent (15), sibling (2)

17 (0:17)

Moderate

Lopez RP (2010) [51]

Explore nurses’ beliefs, knowledge, and roles in feeding decisions for PLWD

Semi-structured interviews

Nursing home (USA)

Unspecified: feeding decisions towards both tube feeding and hand feeding

Nurse: licensed practical nurse (6) Registered nurse (5)

11 (11:0)

Moderate

Jansson L (1992) [52]

Elucidate nurses’ ethical reasoning and decision-making of forced feeding for PLWD with refusing-like behaviors

Semi-structured interviews with case scenarios

Mixed- nursing home, psychogeriatric clinics, somatic long-term clinic (Sweden)

Forced feeding for PLWD with refusal-like behaviors

Nurse: all registered nurses

20 (20:0)

Poor

Nagao N (2008) [53]

Explore American and Japanese experts’ ethics consultation focusing nutritional management for PLWD

Semi-structured interviews with case scenarios

Acute hospital (Japan, USA)

ANH in general: NG, PEG, IV

Mixed: US psychiatrist (1), Japanese Internal Medicine (1), US and Japanese ethicist (2); participants from USA (2), Japan (2)

4 (4:0)

Poor

Norberg A (1987) [54]

Explore nurses’ experiences of withdrawing and withholding nutrients and fluids from PLWD and interpret their reasons regarding ethical principles

Semi-structured interviews with case scenarios

Nursing home (Sweden)

Unspecified: forced feeding, tube feeding, infusion, active euthanasia

Nurse: registered nurse (14), practical nurse (17), mental nurse (10), nurses’ aid (19)

60 (60:0)

Poor

Norberg A (1987) [55]

Explore healthcare professionals’ attitudes towards feeding of PLWD

Semi-structured interviews, focused group

Mixed- long-term care institutional services, nursing home, psychogeriatric hospital (Israel)

Unspecified: forced feeding, tube feeding, infusion, active euthanasia

Mixed: individual interviews of physician (10), social worker (1), nurse (16), nurses’ aid (3); Group interviews of 4–15 people each group (no exact number) including psychologist; at least 60 participants

60 (60:0)

Poor

Pang MCS (2007) [56]

Explore cultural influence on tube feeding decisions for PLWD in USA and Hong Kong

Observations

Specialized long-term care unit in hospital (Hong Kong, USA)

Tube feeding in general: to or not to forgoing tube feeding

Mixed: observations of PLWD, family member, healthcare professional

No information about number of participants

Poor

Smith L (2016) [57]

Explore nurses’ perceptions and beliefs about suffering regarding ANH for PLWD

Focused group with case scenarios

Home care for people with late stage dementia (USA)

ANH in general: suffering from ANH

Nurse: home healthcare nurse

17 (17:0)

Poor

Wilmot S (2002) [58]

Explore how nursing staff apply ethical principles in feeding problems of PLWD

Focused group with case scenarios

Acute hospital: wards in a psychiatric hospital (UK)

Unspecified: feeding problems with a spectrum of methods (ANH and hand feeding)

Mixed: nurse, health care assistant staff

12 (12:0)

Poor

Case studies

Berger JT (1996) [59]

Describe conflict between staff and family over differing assessments of resident’s quality of life and the cultural context of illness

Case study

Nursing home (USA)

ANH in general: NG, permanent gastrostomy

Case study involved daughter, physician, nursing staff

NA

Good

Christenson J (2019) [60]

Describe ethical dilemma concerning stop hand feeding in people with advanced dementia

Case study

Hospice (USA)

Hand feeding in general; assisted hand feeding, presumed wishes of ‘voluntary stopping eating and drinking’ (VSED), consider comfort feeding only (CFO)

Case study involved wife, physician, nurse, unlicensed assistive personnel, hospice’s administration, partner organization of the hospice

NA

Good

Meier CA (2015) [61]

Describe ethical dilemma of withholding food and drink in a patient with advanced dementia.

Case study

Hospice, nursing home (USA)

Hand feeding in general: fully assisted hand-feeding, verbally expressed of VSED, CFO

Case study involved daughter, nurse, social worker, chaplain, hospice medical director, nursing home director

NA

Good

Orr RD (1991) [62]

Describe clinical and ethical analysis of decision-making regarding tube feeding for PLWD

Case study

Acute hospital, nursing home (USA)

Surgical placement of gastrostomy

Case study involved daughter, nursing home staff, attending physician, director and administrator of nursing home, ethics consultant

NA

Good

Orr RD (2002) [63]

Describe the ethics consultation and decision-making process regarding tube feeding for PLWD

Case study

Acute hospital, nursing home (USA)

Unspecified: tube feeding, gastrostomy, IV, total parenteral nutrition (TPN), time-trial, CFO

Case study involved daughter, physician, bedside nurse, ethics consultant

NA

Good

Tapley M (2014) [64]

Describe decision-making process regarding tube feeding for PLWD in the best interests meeting

Case study

Nursing home (UK)

Tube feeding: radiologically inserted gastrostomy (RIG) tube

Case study involved husband, two daughters with conflicting opinions, specialist dementia nurse, GP, nursing home manager, staff nurse, dietician

NA

Good

Back AL (2005) [65]

Describe conflicts between physicians and family and a step-wise approach to deal with the conflicts

Case study

Nursing home (USA)

ANH in general: NG, IV, considering PEG

Case study involved husband, medical director of nursing home (physician)

NA

Moderate

Clibbens R (1996) [66]

Describe a situation where the patient’s difficulties in swallowing became an ethical dilemma for family and the author

Case study

Acute hospital, nursing home (UK)

NG

Case study involved daughter, nurse, hospital team

NA

Poor

Hodges MO (1994) [67]

Describe and discuss ethical issues in tube feeding decisions for older people including the case of PLWD

Case study

Nursing home (USA)

NG with considering soft patient restraints

Case study involved sorority friend, nursing home physician, nurse, dietician

NA

Poor

Scarpinato N (2000) [68]

Describe the author’s decision making and uncertainty

Case study

Acute hospital, nursing home (USA)

PEG

Case study involved attending physician, nurse, niece (never contact before)

NA

Poor