Parkinson’s caregiver burden

J Pain Symptom Manage. 2016 Oct 31. pii: S0885-3924(16)30761-8. doi: 10.1016/j.jpainsymman.2016.09.007. [Epub ahead of print]

Assessment of burden among family caregivers of people with Parkinson‘s disease using the Zarit Burden Interview.

Abstract

CONTEXT:

Previous studies have supported the psychometric properties of the 22-item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson´s disease (PD). However, its short-forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data.

OBJECTIVES:

To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data.

METHODS:

Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women; mean age, 69.6 years) of a local Swedish PD society branch were analysed according to classical test theory methods based on polychoric/polyserial correlations.

RESULTS:

Missing item responses were ≤5%. Corrected item-total correlations were ≥0.42 and floor-/ceiling effects were <20%, besides for the briefest (4- and 1-item) short-forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha, 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short-forms demonstrated good criterion-related validity (rs0.87-0.99) and discriminative ability (AUC, 0.91-0.98) relative to the full ZBI-22.

CONCLUSION:

This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or -12 is suggested for use; other short-forms can be used when caregiver burden is of less central focus or for clinical screening.

Aging Ment Health. 2016 Nov 2:1-10. [Epub ahead of print]

Experiences of caring for a family member with Parkinson‘s disease: a meta-synthesis.

Author information

  • 1a Division of Health Research , Lancaster University , Lancaster , United Kingdom.

Abstract

OBJECTIVE:

The aim of this qualitative meta-synthesis was to search and then synthesise family caregivers‘ experiences of providing care to individuals with Parkinson‘s disease (PD).

METHOD:

A systematic search resulted in the identification of 11 qualitative studies. Noblit and Hare’s seven-stage approach was used to provide a higher-order interpretation of how family caregivers‘ experienced the effects of taking on a caregiving role.

RESULTS:

The process of reciprocal translation resulted in four overarching themes: (1) the need to carry on as usual – ‘the caregiver must continue with his life’; (2) the importance of support in facilitating coping – ‘I’m still going back to the support group’; (3) the difficult balancing act between caregiving and caregiver needs – ‘I cannot get sick because I’m a caregiver‘; (4) conflicts in seeking information and knowledge – ‘maybe better not to know’.

CONCLUSION:

The themes reflected different aspects of family caregivers‘ lives that were affected as a result of caring for a relative diagnosed with PD and these raise challenges for more simplistic theories of family caring and appropriate support structures. The findings also highlight several recommendations for clinical practice.

KEYWORDS:

Parkinson‘s disease; caregiver; caregiving; family

PMID:
27802771
DOI:
10.1080/13607863.2016.1247414
Neurodegener Dis Manag. 2016 Oct;6(5):399-415. doi: 10.2217/nmt-2016-0020. Epub 2016 Sep 7.

Strategies to maintain quality of life among people with Parkinson‘s disease: what works?

Abstract

Among chronic neurodegenerative disorders, Parkinson‘s disease (PD) is one of the most difficult and challenging to tackle as several motor and nonmotor features influence the patients’ quality of life (QoL) and daily activities. Assessing patients QoL with valid instruments and gathering knowledge about the determinants that affect QoL in individuals with PD are the basis of an efficient caring strategy. In addition to the known motor symptoms, nonmotor disorders must also be comprehensively tracked and targeted for treatment to enhance QoL. A holistic strategy to maintain QoL in people with PD should consist of a multidisciplinary, personalized and patient-centered approach with timely administration of palliative care and efficient involvement of caregivers and family members.

KEYWORDS:

Parkinson‘s disease; management strategy; multidisciplinary care; nonmotor symptoms; personalized care; quality of life

PMID:
27600287
DOI:
10.2217/nmt-2016-0020