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Table 1 Characteristics of included papers examining family involvement for managing medications of older patients across transitions of care (N = 23)

From: Family involvement in managing medications of older patients across transitions of care: a systematic review

Author, year, country, MMAT result Design and setting Description of study Participants Key Findings
Allen et al. 2017 [13] Australia*** Design: Qualitative exploratory.
Setting: metropolitan public health-care network
Data collection: interviews.
Transition points involved: acute ward setting and rehabilitation setting in hospital, home.
Medication management process involved: admission instruction, discharge instruction.
Patients n = 19.
78.9 years (age range 45–94 years for patients and families).
Gender: not stated.
Family n = 7.
Gender: not stated.
Caring relationships with health professionals:
- Nurses in rehabilitation attended to follow-up phone calls to check on discharge management.
- Lack of continuity of medical practitioners and interactions with multiple medical practitioners.
- Medical decision making about discharge medications without understanding about medications prescribed by other medical practitioners.
Seeking information:
- If patients was too unwell to seek information during their acute illness, family wanted to have medication information on their behalf.
- Expectation that doctors would share medication information with them during the hospital admission. This did not always occur.
- Family members were well informed about changes to medications in rehabilitation ward setting.
- General practitioner (GP) relied on accurate and timely discharge summary to explain medication information to family.
Coleman et al. 2006 [15] United States** Design: Randomised controlled trial.
Setting: one hospital, eight skilled nursing facilities, one home health care agency.
Data collection: rates of rehospitalisation measured at 30, 90, and 180 days.
Transition points involved: community; skilled nursing facility; rehospitalisation.
Medication management processes involved: medication self-management.
Intervention – four pillars.
- Support patients and family with medication self-management, medication reconciliation.
- Patient-centred record to assist with site transitions.
- Timely follow-up with care.
- Supply patients and family with list of “red flags” for worsening condition.
Patients:
n = 379 intervention group,
n = 371 control group.
Age for intervention group: mean 76.0 years (SD 7.1 years).
Age for control group: mean 76.4 years (SD 6.8 years).
Gender: 48% female for intervention group.
52% female for control group.
Medical condition: at least 1 of 11 selected acute or chronic conditions.
Family recruited with patients:
n = not specified.
Relationship with patient: not specified.
Outcomes:
Rehospitalisation rates at 30 days –
Intervention group = 8.3%
Control group = 11.9%, p = 0.048.
Rehospitalisation rates at 90 days –
Intervention group = 16.7%
Control group = 22.5%, p = 0.040.
Rehospitalisation rates for the same condition that precipitated the index hospitalisation at 90 days –
Intervention group = 5.3%
Control group = 9.8%, p = 0.04.
Rehospitalisation rates for the same condition that precipitated the index hospitalisation at 180 days -
Intervention patients: 8.6%
Control patients: 13.9%, p = 0.046.
Mean hospital costs at 180 days -
Intervention patients: $2058
Control patients: $2546, log-transformed p = 0.049.
Coleman et al. 2004 [14] United States*** Design: Quasi experimental study with intervention and control groups.
Setting: one community, hospital.
Data collection: rates of rehospitalisation at 30, 90 and 180 days; care transition measure
Transition points involved: hospital, community residence facility, home.
Medication management process involved: medication self-management.
Intervention – four pillars.
- Support patients and family with medication self-management, medication reconciliation.
- Patient-centred record to assist with site transitions.
- Timely follow-up with care.
- Supply patients and family with list of “red flags” for worsening condition.
Intervention involved: meetings with transitions coach; communication tool (personalised medical record, role plays), follow up phone calls.
Patients:
n = 158 intervention group,
n = 1235 control group from administrative data.
Age for intervention group: mean 75.1 years (SD 6.4 years).
Age for control group: mean 78.5 years (SD 7.5 years).
54% female for intervention group.
55% female for control group.
Medical condition: at least one or more of 9 medical conditions.
Family recruited with patients:
n = not specified.
Relationship with patient: not specified.
Outcomes:
Rehospitalisation at 30 days –
Intervention group compared with control group: 0.52 (95% confidence interval (CI) 0.25, 0.96)
Rehospitalisation at 90 days –
Intervention group compared with control group: 0.57 (95% CI 0.25, 0.72)
Rehospitalisation at 180 days –
Intervention group compared with control group: 0.57 (95% CI 0.36, 0.92).
Intervention group - patients reported: high level of confidence in obtaining information, communicating with health care team, and understanding their medication regimen.
Quality of care transitions taxonomy –
Intervention group: 9.5% of posthospital transitions were complicated.
Control group: 14.9% of transitions, P = 0.35.
Crawford et al. 2015 [16] Australia*** Design: Qualitative, exploratory.
Setting: one aged rehabilitation and geriatric evaluation and management facility
Data collection:
Semi-structured interviews.
Transition points involved: acute hospital setting, aged rehabilitation and geriatric evaluation and management facility
Medication management process involved: discharge planning.
Family n = 20.
Relationship with patient: husbands, wives, daughters, son, daughter-in-law, close friends of people with dementia.
Themes:
Adjusting to new role from caregiver to visitor –
- Difficulty in relinquishing role.
- Desire to continue to be involved in decisions.
- Felt ongoing responsibility to communicate medication needs.
- Belief about specialised knowledge about relative’s care.
- Staying informed helped caregivers to cope with move to facility.
Deeks et al. (2016) [17] Australia** Design: Qualitative, exploratory.
Setting: three urban primary and acute sites, one rural primary and acute site.
Data collection: semi-structured interviews.
Medication management process involved: hospital admission and discharge for patients with dementia.
51 participants comprising doctors, nurses, pharmacists, occupational therapists, general practitioners, Alzheimer’s Australia staff, and family.
Family n = not specified.
Relationship with patient: not specified.
Themes:
Medication reconciliation –
- Verifying accurate list on admission was difficult if family members not present or medications not brought to hospital.
Lack of modified planning for care transitions –
- Lack of identification that patient had cognitive problems as they moved across settings.
- Inadequate information about medication changes at discharge.
- Carers’ support for use of dose administration aids by patients, but potential problems with errors. Lack of assessment of patients’ ability to use aid.
- Desire for once-daily dosing if paid carer required to visit at home after discharge.
Multiple prescribers –
- Little information shared between private and public hospitals.
- Treatment delays between specialist and general practitioner as communication by letter.
Residential aged care facilities –
- Lack of accurate and complete information from hospital.
Medication reviews by pharmacists –
- Patients with dementia trusted and built rapport with community pharmacists and general practitioners. Patients not receptive to home medicine reviews.
Dyrstad et al. (2015) [18] Norway** Design: Qualitative, exploratory.
Setting: two hospitals
Data collection: observations, conversations, observational field notes.
Transition points involved: two emergency departments (EDs), seven hospital wards; including admissions from home based care or nursing homes, and discharge.
Medication management process involved: admission instruction, discharge instruction.
Patients n = 41.
Age: mean 86.0 years, range 73–97 years.
Gender: 46% female.
Medical condition: an orthopaedic diagnosis or chronic condition, and poly-pharmacy (> 5 medications daily).
Family n = 28.
Relationship with patient: son, daughter, wife.
Health professionals n = not specified.
Disciplines involved: paramedics, nurses, doctors.
Themes:
Information dissemination and decision-making –
- No scheduled discharge planning meetings with patient and family.
- Nurse phoned family to inform them of doctors’ decisions.
Next of kin important advocates –
- In ED, provided valuable information about medications taken before admission.
- Family administered medications in ED during busy times.
- In wards, no routines to invite family to participate on doctor’s rounds.
- Informed on day of discharge about ward round decisions.
- Some families had to seek information about medication decisions at discharge.
Georgiadis & Corrigan 2017 [19] United Kingdom*** Design: Phenomenological.
Setting: three hospitals.
Data collection: Interview, audio diary, written diary.
Transition points involved: clinical settings (not described), home.
Medication management process involved: medication counselling at discharge.
18 participants
Patients n = 12.
Age: 65.9 years (SD 17.2 years).
Gender: Mixed, not stated.
Medical condition: not mentioned. Patients with non-medical complex conditions, which were not defined.
Family n = 6.
Relationship with patient: not specified.
Themes:
Limited involvement in discharge-care preparations –
- Premature discharges meant lack of planning in medication counselling.
- Unexpected and delayed discharges meant that family unable to be present.
Weak service interface –
- Expected organisation of appointments for outpatient clinic or home visits did not happen. Reliance on family for medication administration.
- Family arranged primary clinic to assess medications.
Hagedoorn et al. 2017 [20] The Netherlands*** Design: Qualitative exploratory.
Setting: Four general hospitals,
Data collection: non-participant observations, audio-recordings of planned discussions for admission and discharge discussions and family meetings.
Transition points involved: admission to ward, 13 clinical wards comprising neurology, pulmonary, internal medicine, cardiology, geriatrics. Discharge from ward.
Medication management process involved: administration, monitoring.
Patients n = 62.
Age: 76 years (SD 7.2 years).
Gender: 48% female.
Medical condition: 22 patients (36%) had 3 or more chronic diseases.
Family n = 107 at planned discussions.
Relationship with patient: husband, wife, son, daughter.
Themes:
Social network support –
- Support by family caregivers assisting with or monitoring medication intake at home. Not addressed by nurses in hospital assessment sessions.
Coordination of care –
- During discharge discussions nurses reviewed home medication list with patients and family.
- Family asked specific questions about changes in the patients’ home medications.
Hvalvik & Reierson, 2015 [21] Norway*** Design: Phenomenological hermeneutic design.
Setting: hospital.
Data collection: in-depth interviews.
Transition points involved: hospital, municipal rehabilitation, short-term care facility, home.
Medication management process involved: discharge planning, self-management at home.
Family n = 11.
Relationship with patient: son, spouse, daughter.
Themes:
Balancing vulnerability and strength –
- Enduring emotional stress with discharge.
- Family expected to be involved in discharge, but were not included.
- Worry about being discharged too early and lack of medication information.
- Lack of communication about medications during stay.
- Sense of responsibility in managing medications.
- Lack of communication between hospital and community services. Prescription of medications that should have been ceased due to adverse effects or allergies.
Coping with an altered everyday life –
- Dealing with changes to family routines.
- Anticipating possible problems if patients discharged early.
- Comprehensive understanding about older person’s vulnerability, and fragility.
Jeffs et al. 2017 Canada*** Design: Qualitative exploratory.
Setting: orthopedic inpatient units in two acute care hospitals and one orthopedic unit at a complex continuing care rehabilitation hospital.
Data collection: semi-structured interviews.
Medication management process involved: care involving transfer from an acute care hospital to a rehabilitation hospital.
Patients n = 13.
Age: 82.9 years (range: 68–91 years).
Gender: 69% female.
Medical condition: non-elective patients who had fallen or sustained a fracture though an accident.
Family n = 9.
Relationship with patient: child, spouse, partner, sibling.
Health professionals n = 50.
Themes:
Watching –
- Alert to medication administration and changes in patients’ status.
- Patients’ lack of understanding about medication changes.
Being an active care provider –
- Responsibility for providing care that health care providers performed.
- Administering medication was easier for family to do than the nurses, as nurses experienced challenges with the patient taking medication.
- Lack of engagement by health care providers about involving family.
Advocating –
- Being supportive of patients’ needs such as changing medication times to suit patients’ routines.
Navigating the health care system –
- Asking questions and coordinating follow-up care.
- Arranging appointments with various members of interdisciplinary team.
- Lack of availability of health care providers to ask questions about transitions plan.
King et al. 2013 [23] United States*** Design: Qualitative study using grounded dimensional
Analysis.
Setting: five non-profit religious and government skilled nursing facilities (SNF)
Data collection: focus group and individual interviews
Transition points involved: skilled nursing facilities, hospital.
Medication management process involved: hospital discharge.
Health professionals n = 27.
Disciplines involved: nurses.
Themes:
Reconciling hospital information-
- Seeking medication details from families was problematic as sometimes not adequately informed about family members contact details.
- Asking families about medication details created a poor first impression of SNF staff.
Consequences of poor-quality discharge communication –
- Care delays and implementation of an inappropriate medication plan.
- Inaccurate hospital information produced family dissatisfaction.
- Made the SNF appear unorganised.
Knight et al. 2013 [24] United Kingdom** Design: Qualitative exploratory.
Setting: participants’ home
Data collection: semi-structured interviews, medication diary.
Transition points involved: hospital, home
Medication management process involved: discharge process.
Patients n = 7.
Age: > 75 years.
Gender: 43% female.
Medical condition: not stated.
Family n = 12.
Relationship with patient: wife, husband.
Themes:
Discharge in general –
- Long delays till discharge or abrupt notification about discharge.
Obtaining medication for discharge-
- Waiting for medications to be prepared at hospital pharmacy.
Information regarding discharge medication –
- Carer belief that it was their responsibility to check understanding on individual medicines.
- Carer satisfaction about information provided but not detailed.
- Medication changes in hospital not conveyed to carers.
- Inadequate explanations of new medicines and associated risks for the patient.
Medication lists –
- Lack of written guide available or had never received a list.
Communication about medication in hospital and following discharge –
- Carers detected medication omissions after careful examination.
- Needed to feel better prepared with medications post-discharge.
Lowson et al. 2012 United Kingdom*** Design: Qualitative exploratory.
Setting: participants’ home
Data collection: semi-structured interviews.
Transition points involved: hospital, home.
Medication management process involved: medication information at admission.
Patients n = 27.
Age: mean = 79.0 years (SD 4.25 years).
Gender: 52% female.
Medical condition: heart failure or cancer in the last year of life.
Family n = 12.
Relationship with patient: wife, husband, daughter, sister, neighbour, friend.
Themes:
Conductors –
- Strong contributions to maintaining good care throughout illness trajectory.
- Detailed knowledge about medications.
- Alerted health professionals about potential medication errors.
Second fiddle –
- Following hospital admission, ability to work with health professionals to influence decisions vastly reduced.
- Carers invested effort in maintaining continuity of relationship.
- Advocated on patients’ behalf to affect beneficial change.
Nazarath et al. 2001 United Kingdom*** Design: Randomised controlled trial.
Setting: three general hospitals, one long-stay hospital
Data collection:
Transition points involved: general hospital wards, home.
Medication management process involved: discharge information.
Intervention: (for intervention studies) Discharge plans developed by pharmacists, home visit by community pharmacist, counselling patients and family on appropriate doses and purpose.
Control group: discharge letter to general practitioner.
Patients:
n = 181 intervention group,
n = 181 control group.
Age for intervention group: mean 84 years (SD 5.2 years).
Age for control group: mean 84 years (SD 5.4 years).
Gender:
62% female for intervention group.
66% female for control group.
Medical condition: had a mean of three chronic conditions.
Family (n = not specified)
Included in intervention but not stated.
Outcomes:
Hospital readmission at 3 months –
Intervention group: 64 (39%)
Control group: 69 (39.2%), p > 0.05.
Hospital readmission at 6 months –
Intervention group: 38 (27.9%)
Control group: 43 (28.4%), p > 0.05
No differences between groups: Patients’ general well-being, satisfaction with the service and knowledge of and adherence to prescribed medication (p > 0.05).
Neiterman et al. 2015 [25] Canada** Design: Qualitative exploratory.
Setting: participants’ home
Data collection: interviews
Transition points involved: hospital, home
Medication management process involved: medication management at home
Patients n = 17.
Age: 70–89 years, mean = 79 years.
Gender: 41% female.
Medical condition: diverse chronic illnesses.
Family n = 19.
Relationship with patient: husband, wife, mother, father, daughter, son, daughter-in-law, son-in-law.
Themes:
Dealing with medical confusion –
- Post-discharge medication management was difficult because of medication changes.
Facilitators for recovery: social capital and social support -
- Family members made sure that medications schedules were followed.
- Family was overwhelmed and exhausted due to constant need to coordinate care and ensure patients’ needs met.
Targeted nurse practitioner initiative -
- Some caregivers did not fully understand the nurse practitioner (NP) role but relied on NPs to oversee the management of medications.
Palagyi et al. 2016 [26] Australia*** Design: Qualitative exploratory.
Setting: three long-term care facilities
Data collection: Focus groups and interviews
Transition points involved: long-term care facilities, hospital, community care.
Medication management process involved: deprescribing medications.
Patients n = 25.
Age: mean = 87.6 years, range 75–100.
Gender: 77% female.
Medical condition: not stated.
Family n = 16.
Relationship with patient: not mentioned.
Health professionals n = 27.
Disciplines involved: general practitioners, long-term care facilities staff.
Themes:
Pitfalls of coordinated care -
- Lack of review of acute medication after condition was treated.
Negotiating a complex system -
- Family concerned that compulsory two-year residential medication management review schedule was too long. Many changes occur in two years.
Medication knowledge -
- Family were unfamiliar with specific medication indications.-
Minimal recognition of adverse drug reactions.
Whatever the GP says goes -
- Complete trust in the care and decisions of the GP.
- Number of specialists involved in residents’ care.
Need for realistic expectations-
- Relatives viewed long-term care facilities as active providers of medical care. GPs regarded it as a palliative care environment.
Ploeg et al. 2017 [31] Canada*** Design: Interpretive descriptive.
Setting: participants’ home
Data collection: semi-structured interviews.
Transition points involved: home, primary care settings, hospital.
Medication management process involved: managing medications for multiple comorbidities.
Patients n = 41.
Age: 17% aged 85 years and over.
Gender: 44% female.
Medical condition: three or more chronic conditions.
Family n = 47.
Relationship with patient: wife, husband, grandfather, mother-in-law, friends.
Health professionals n = 42.
Disciplines involved: registered nurse, registered/licensed practical nurse, personal support worker/healthcare aide
Themes:
Experience of managing multiple chronic conditions -
- Emotionally draining.
Organising pills and appointments -
- Managing changes to medications that frequently occurred after an acute care hospitalization.
- Abrupt discharge, without input from caregivers about preferences.
- Organising appointments to discuss blood results and scans affecting medications.
Being split –
- Receiving services from multiple providers who focus on a single disease
- Lack of communication between family doctor and specialists.
Doing what the doctor says -
- Family believed decision making was physician-directed. Providers perceived their approach involved shared decision-making.
Popejoy 2011 [32] United States*** Design: Qualitative exploratory.
Setting: tertiary care hospital
Data collection: semi-structured interviews.
Transition points involved: hospital, home, residential aged care facility.
Medication management process involved: Discharge planning.
Patients n = 13.
Age: mean = 84 years, range = 72–89 years.
Gender: 62% female.
Medical condition: no cognitive impairment, at least pre-clinically frail.
Family n = 12.
Relationship with patient: spouses.
Health professionals n = 7.
Disciplines involved: registered nurses, social workers.
Themes:
Changing the discharge plan -
- Patients and caregivers were adamant about going home (not to residential care).
- Health professionals were worried when family had trouble understanding about medications.
- Family were sometimes old with health problems themselves, and had difficulties coping with and remembering to offer patients’ medications at home.
Tjia et al. 2014 [27] United States*** Design: qualitative exploratory.
Setting: Three hospice agencies.
Data collection: semi-structured interviews
Transition points involved: hospice, outpatient oncology, primary care settings.
Medication management process involved: medication prescribing across transitions.
Patients n = 18.
Age: mean = 80 years (SD 10 years).
Gender: 42% female.
Medical condition: advanced cancer.
Family n = 8.
Relationship with patient: not stated.
Health professionals n = 17.
Disciplines involved: nurses, physicians.
Themes:
Medication coordination and communication -
- Families were keen to have comprehensive medication reviews upon transition to hospice that assessed ongoing use of longstanding medications for comorbid illness.
- Family were receptive to reducing harmful and non-essential medications.
Towle et al. 2012 [12] Singapore* Design: Prospective observational, cross-sectional.
Setting: one tertiary hospital
Data collection: survey questionnaire
Transition points involved: hospital, home.
Medication management process involved: Discharge process.
Intervention: (for intervention studies) BOOST (Better Outcome for Older adults through Safe Transitions); an evidence-based quality improvement initiative to enhance care transition in improving patient/family preparedness for discharge.
Patients n = 40.
Age: not stated.
Gender: not stated.
Medical condition: > 1 chronic condition.
Family n = not stated.
Relationship with patient: not stated.
Outcomes:
Patient and caregiver understanding of medical condition -
- Improvement by 70%.
Patient and caregiver understanding of medications-
- Improvement by 67%.
Patient and caregiver understanding of treatment plan -
- Improvement by 81%.Patient and caregiver understanding of follow-up -
- Improvement by 41%.
Trollor 1997 [28] Australia**** Design: Cross-sectional.
Setting: Community palliative care service.
Data collection: questionnaire.
Transition points involved: palliative care services, home, primary care services.
Medication management process involved: symptom management.
Patients n = 26.
Age: not stated.
Gender: 31% female.
Medical condition: patients with palliative care needs.
Family n = 26.
Relationship with patient: wives, daughters, husbands.
Themes:
- 13 out of 26 family members were in charge of patients’ medication.
- Role in dealing with general practitioners and palliative care specialists, to administer medication for pain, sleeping difficulty and loss of appetite were most challenging.
White et al. 2015 [29] United States*** Design: Qualitative exploratory.
Setting: Two hospitals.
Data collection: semi-structured interviews.
Transition points involved: hospital, home.
Medication management process involved: Discharge planning.
Patients n = 20.
Age: mean = 77 years (SD 8.8 years).
Gender: 47% female.
Medical condition: stroke survivors.
Family n = 9.
Relationship with patient: husband, wife, son, daughter.
Themes:
Preparing to go home after the stroke -
- Importance of health professionals understanding family’s needs following discharge so that specific situation could be addressed.
- Wrong family member targeted for providing information.
Complexity of medication management-
- some family were confident about their knowledge.
- Some family lacked understanding about the purpose of medication.
- Usually family member who managed medications.
- Difficulties in managing medications for patients with swallowing problems. Random decisions about which medications should be crushed.
White et al. 2014 [33] United States** Design: Mixed methods.
Setting: Two hospitals.
Data collection: semi-structured interviews, electronic medical record review.
Transition points involved: hospital, home.
Medication management process involved: Discharge planning.
Patients n = 310.
Age: mean = 76 years (SD 9.8 years).
Gender: Not stated.
Medical condition: stroke survivors.
Family n = 20 combined with patients.
Relationship with patient: not stated.
Themes:
Within one month of discharge, 10% were readmitted and 25% within 6 months.
Reasons for readmission were recurrent stroke/transient ischaemic attack (19%), pneumonia and urinary tract infection (19%), swallowing problems and dehydration (9%), and cardiac causes (7%).
- Need for guidance on what to expect at home.
- Need follow-up in community about early identification of problems.
- Complexity of medication management sometimes led to lack of understanding.
  1. Note: The symbols *, **, *** and **** refer to scores of 25, 50, 75 and 100% respectively obtained on the Mixed Methods Appraisal Tool (MMAT)