Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Social Psychiatry and Psychiatric Epidemiology
Published in: Social Psychiatry and Psychiatric Epidemiology 3/2006

01-03-2006 | ORIGINAL PAPER

Patient and carer perceptions of need and associations with care-giving burden in an integrated adult mental health service

Authors: Michelle Cleary, Adele Freeman, Glenn E. Hunt, Garry Walter

Published in: Social Psychiatry and Psychiatric Epidemiology | Issue 3/2006

Login to get access

Abstract

Objective

To identify patients’ and carers’ perceptions of need in inpatient and community settings and investigate the relationship between need and caregiver burden.

Method

The study was conducted across a metropolitan mental health service in Sydney, Australia. Patients (n = 407) and carers (n = 50) completed the Camberwell Assessment of Need Short Appraisal Schedule. Carers also completed a shortened version of the Involvement Evaluation Questionnaire to assess caregiver burden.

Results

When completing the assessment tools, patients and carers in hospital settings were asked to consider the 4 weeks preceding hospitalisation; in the community, patients and carers were asked to consider the previous 4 weeks. These data show a high percentage of patients in hospital and community settings have unmet needs for company, daytime activities and intimate relationships. Inpatients had more unmet needs than community based patients. Agreement between patients’ and carers ratings’ of need ranged from ‘poor’ to ‘moderate’. There was a strong relationship between unmet need and burden from the carer’s perspective. Patients with and without carers had similar numbers of needs. Carers of patients recently admitted to hospital reported a significantly higher burden.

Conclusions

Carers of inpatients experienced significantly more burden than carers of outpatients. Opportunities to access support, information and education should be readily available and not contingent upon demonstrating a close familial relationship to the patient. We found that unmet need was significantly related to burden, suggesting that meeting patient needs could reduce carer burden.
Literature
1.
Boye B, Bentsen H, Ulstein I, Notland TH, Lersbryggen A, Lingjaerde O, Malt UF (2001) Relatives’ distress and patients’ symptoms and behaviours: a prospective study of patients with schizophrenia and their relatives. Acta Psychiatr Scand 104:42–50CrossRefPubMed
2.
Meijer K, Schene A, Koeter M, Knudsen HC, Becker T, Thornicroft G, Vazquez-Barquero JL, Tansella M, EPSILON Multi Centre Study on Schizophrenia (2004) Needs for care of patients with schizophrenia and the consequences for their informal caregivers – results from the EPSILON multi centre study on schizophrenia. Soc Psychiatry Psychiatr Epidemiol 39: 251–258CrossRefPubMed
3.
Noble LM, Douglas BC (2004) What users and relatives want from mental health services. Curr Opin Psychiatry 17:289–296CrossRef
4.
Freeman A, Malone J, Hunt GE (2004) A statewide survey of high-support services for people with chronic mental illness: assessment of needs for care, level of functioning and satisfaction. Aust N Z J Psychiatry 38:811–818CrossRefPubMed
5.
Phelan M, Slade M, Thornicroft G, Dunn G, Holloway F, Wykes T, Strathdee G, Loftus L, McCrone P, Hayward P (1995) The Camberwell Assessment of Need: the validity and reliability of an instrument to assess the needs of people with severe mental illness. Br J Psychiatry 167:589–595PubMed
6.
Slade M, Phelan M, Thornicroft G, Parkman S (1996) The Camberwell Assessment of Need (CAN): comparison of assessments by staff and patients of the needs of the severely mentally ill. Soc Psychiatry Psychiatr Epidemiol 31:109–113CrossRefPubMed
7.
Issakidis C, Teesson M (1999) Measurement of need for care: a trial of the Camberwell Assessment of Need and the Health of the Nation Outcome Scales. Aust N Z J Psychiatry 33:754–759CrossRefPubMed
8.
Slade M, Leese M, Taylor R, Thornicroft G (1999) The association between needs and quality of life in an epidemiologically representative sample of people with psychosis. Acta Psychiatr Scand 100:149–157PubMed
9.
Macpherson R, Varah M, Summerfield L, Foy C, Slade M (2003) Staff and patient assessments of need in an epidemiologically representative sample of patients with psychosis – staff and patient assessments of need. Soc Psychiatry Psychiatr Epidemiol 38:662–667PubMed
10.
Foldemo A, Ek AC, Bogren L (2004) Needs in outpatients with schizophrenia, assessed by the patients themselves and their parents and staff. Soc Psychiatry Psychiatr Epidemiol 39:381–385CrossRefPubMed
11.
Reynolds T, Thornicroft G, Abas M, Woods B, Hoe J, Leese M, Orrell M (2000) Camberwell Assessment of Need for the Elderly (CANE). Development, validity and reliability. Br J Psychiatry 176:444–452CrossRefPubMed
12.
Lelliott P, Beevor A, Hogman G, Hyslop J, Lathlean J, Ward M (2001) Carers’ and Users’ Expectations of Services-User version (CUES-U): a new instrument to measure the experience of users of mental health services. Br J Psychiatry 179:67–72CrossRefPubMed
13.
Baronet AM (1999) Factors associated with caregiver burden in mental illness: a critical review of the research literature. Clin Psychol Rev 19:819–841CrossRefPubMed
14.
Guberman N, Nicholas E, Nolan M, Rembicki D, Lundh U, Keefe J (2003) Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia. Health Soc Care Community 11:345–355CrossRefPubMed
15.
Addington J, Coldham EL, Jones B, Ko T, Addington D (2003) The first episode of psychosis: the experience of relatives. Acta Psychiatr Scand 108:285–289CrossRefPubMed
16.
Cleary M, Freeman A, Hunt GE, Walter G (2005) What patients and carers want to know: an exploration of information and resource needs in adult mental health services. Aust N Z J Psychiatry 39:507–513CrossRefPubMed
17.
Gallagher J, Teesson M (2000) Measuring disability, need and outcome in Australian community mental health services. Aust N Z J Psychiatry 34:850–855CrossRefPubMed
18.
Slade M (1994) Needs assessment. Involvement of staff and users will help to meet needs. Br J Psychiatry 165:293–296PubMed
19.
Schene AH, van Wijngaarden B, Koeter MW (1998) Family caregiving in schizophrenia: domains and distress. Schizophr Bull 24:609–618PubMed
20.
van Wijngaarden B, Schene AH, Koeter M, Vazquez-Barquero JL, Knudsen HC, Lasalvia A, McCrone P (2000) Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire – European Version. EPSILON Study 4. Br J Psychiatry 177(Suppl 39):s21–s27
21.
Landis J, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174PubMed
22.
Lasalvia A, Ruggeri M, Mazzi MA, Dall’Agnola RB (2000) The perception of needs for care in staff and patients in community-based mental health services. The South-Verona Outcome Project 3. Acta Psychiatr Scand 102:366–375CrossRefPubMed
23.
Hansson L, Sandlund M, Bengtsson-Tops A, Bjarnason O, Karlsson H, Mackeprang T, Merinder L, Nilsson L, Sorgaard K, Vinding H, Middelboe T (2003) The relationship of needs and quality of life in persons with schizophrenia living in the community. A Nordic multi-center study. Nord J Psychiatry 57:5–11PubMed
24.
Slade M, Leese M, Ruggeri M, Kuipers E, Tansella M, Thornicroft G (2004) Does meeting needs improve quality of life? Psychother Psychosom 73:183–189CrossRefPubMed
25.
Hancock GA, Reynolds T, Woods B, Thornicroft G, Orrell M (2003) The needs of older people with mental health problems according to the user, the carer, and the staff. Int J Geriatr Psychiatry 18:803–811CrossRefPubMed
26.
Pejlert A (2001) Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents’ narratives. Health Soc Care Community 9:194–204CrossRefPubMed
27.
Thornicroft G, Leese M, Tansella M, Howard L, Toulmin H, Herran A, Schene A (2002) Gender differences in living with schizophrenia. A cross-sectional European multi-site study. Schizophr Res 57:191–200CrossRefPubMed
28.
Wolthaus JE, Dingemans PM, Schene AH, Linszen DH, Wiersma D, Van Den Bosch RJ, Cahn W, Hijman R (2002) Caregiver burden in recent-onset schizophrenia and spectrum disorders: the influence of symptoms and personality traits. J Nerv Ment Dis 190:241–247CrossRefPubMed
29.
Szmukler GI, Burgess P, Herrman H, Benson A, Colusa S, Bloch S (1996) Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol 31:137–148PubMed
30.
Tsang HW, Tam PK, Chan F, Chang WM (2003) Sources of burdens on families of individuals with mental illness. Inter J Rehabil Res 26:123–130
31.
Foldemo A, Gullberg M, Ek AC, Bogren L (2005) Quality of life and burden in parents of outpatients with schizophrenia. Soc Psychiatry Psychiatr Epidemiol 40:133–138CrossRefPubMed
32.
Tucker C, Barker A, Gregoire A (1998) Living with schizophrenia: caring for a person with a severe mental illness. Soc Psychiatry Psychiatr Epidemiol 33:305–309CrossRefPubMed
33.
Joyce J, Leese M, Kuipers E, Szmukler G, Harris T, Staples E (2003) Evaluating a model of caregiving for people with psychosis. Soc Psychiatry Psychiatr Epidemiol 38:189–195CrossRefPubMed
Metadata
Title
Patient and carer perceptions of need and associations with care-giving burden in an integrated adult mental health service
Authors
Michelle Cleary
Adele Freeman
Glenn E. Hunt
Garry Walter
Publication date
01-03-2006
Publisher
Steinkopff-Verlag
Published in
Social Psychiatry and Psychiatric Epidemiology / Issue 3/2006
Print ISSN: 0933-7954
Electronic ISSN: 1433-9285
DOI
https://doi.org/10.1007/s00127-005-0017-z

Other articles of this Issue 3/2006

Social Psychiatry and Psychiatric Epidemiology 3/2006 Go to the issue

ORIGINAL PAPER

Psychotic-like experiences and interpersonal violence in the general population

ORIGINAL PAPER

The “Carers’ needs assessment for Schizophrenia”

ORIGINAL PAPER

Was there unmet mental health need after the September 11, 2001 terrorist attacks?

ORIGINAL PAPER

Early predictors of parent- and self-reported perceived global psychological difficulties among adolescents

ORIGINAL PAPER

Feasibility of mental health screening and intervention in the HUNT population study

ORIGINAL PAPER

Patterns of inpatient care for immigrants in Switzerland