Review question/objective

The overall objective of this systematic review is to identify and synthesize the best available qualitative evidence of how older persons go about making decisions regarding their own health care.

Background

Decision making refers to a person considering a range of options pertaining to their health care and selecting from these the course of action or belief they wish to adopt.1 Health care decision making for older adults is influenced by a range of factors such as their right to making choices, their capacity for decision making,2 cultural perspectives and beliefs,3 financial circumstance,4 and access to health information and services.5

Older people have the right to make choices regarding their health care.1 Their choices relate to whether or not they will seek, accept, refuse or discontinue health care.1 The right to make these choices is enshrined in law.1 This arises from the ethical principles of autonomy and self-determination.1 A corollary to this principle is the requirement for health professionals to obtain informed consent for patient care. This assumes that adults have the capacity to give informed consent, that is, they understand the benefits and risks associated with the proposed care and alternate options available to them.6 Health care decisions requiring informed consent may include treatments, advance care planning and issues regarding end of life care.

A diminished decision making capacity refers to a person's impaired ability to make an informed choice or consent about their health care.7 Their capacity may be diminished due to: impaired cognition, communication, or understanding of the decision they may be making and the implications of that decision.7 Adults can lose their decision making capacity necessitating others to make decisions on their behalf. This is known as surrogate decision making.2 Commonly this may occur as people age or as a consequence of chronic illness or co-morbidities.8

As people age and their circumstances change, they are required to make increasingly complex decisions about their health care. Older adults experience higher rates of co-morbidities further influencing the likelihood of needing to make decisions regarding their health care.10 Given ageing is a risk factor for dementia, the prevalence of dementia will increase and the capacity for decision making of these adults will diminish.11 Decision making may also be influenced by the older persons' personal attitudes and characteristics about assuming responsibility for their health and health care decisions,3 as well as their social, economic4 and health circumstances.

Health care decision making in older adults is a global issue scantily addressed in literature. There is a paucity of research on older persons' experiences of decision making about their care. Following a review of databases listed in the search strategy, no systematic reviews on this topic were identified. Therefore it is important to conduct a systematic review of older persons' experiences of their decision making about their own health care. The findings from this systematic review may be used to inform health care policy makers, health care providers and health care practice, so as to best understand and support older people in their decision making about their health care.

Inclusion criteria

Types of participants

This review will consider studies that include people 65 years or over who are living in the community. Studies that include participants under 65 years of age will be excluded. Studies focusing on decision making with participants with dementia, who are cognitively impaired; who are undergoing palliative care or who are terminally ill will be excluded.

Phenomena of interest

This review will consider studies where the phenomena of interest are the experiences of older people in regards to decision making about their health care.

Context

The review will consider studies that investigate the experiences of older persons' living in community based settings. These settings may include: the older persons' home, a community living environment and a retirement village setting, but exclude residential aged care facilities.

Types of studies

This review will consider qualitative studies included (but not limited to) phenomenological and grounded theory, and ethnographic and thematic analysis studies of older persons' experiences of their decision making about their health care. It may also include qualitative aspects of mixed methods studies that focus upon the older persons' experiences of their decision making about their care.

Search strategy

The search strategy will utilize a three-staged process to identify published studies. (1) An initial search of MEDLINE and CINAHL will be undertaken to identify qualitative studies. This process will allow for additional search terms to be identified as well as using filters for identifying additional qualitative studies. (2) A further search using identified keywords and terms across all included databases will follow. (3) The reference lists of all identified articles will be searched for additional studies. Only more contemporary studies in English conducted between 2000 and 2015 will be considered for inclusion in this review, given the increased focus on primary health care and that decision making is the responsibility of the individual older person.3,4

The databases to be searched for published studies will include:

CINAHL

EMBASE

PubMed

SCOPUS

Web of Science.

The search for unpublished studies will include:

MedNar

Networked Digital Library of Theses and Dissertations

ProQuest Dissertations and Theses

CareSearch Grey Literature.

Initial keywords to be used will be: older (i.e. aged, elderly) and persons (i.e. people, adults), adults, elderly, decision making; health care; experiences.

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument (JBI-QARI) (Appendix 1). Any disagreements that arise between the reviewers will be resolved through discussion, or by a third reviewer.

Data extraction

Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix 1). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives.

Data synthesis

Qualitative research findings will, where possible, be pooled in JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent aggregation, through assembling of findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories will be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidenced-based practice. Where textual pooling is not possible, the findings will be presented in a narrative form.

Conflicts of interest

The authors have no conflict of interest to declare.

References