| Literature DB >> 28680696 |
Sean Glenton Dicks1, Kristen Ranse1, Frank Mp van Haren2, Douglas P Boer1.
Abstract
Information and compassion assist families of potential organ donors to make informed decisions. However, psychological implications of the in-hospital process are not well described with past research focusing on decision-making. To enhance understanding and improve service delivery, a systematic review was conducted. Inductive analysis and synthesis utilised Grounded Theory Methodology within a systems theory framework and contributed to a model proposing that family and staff form a System of Systems with shared responsibility for process outcomes. This model can guide evaluation and improvement of care and will be tested by means of a longitudinal study of family experiences.Entities:
Keywords: acute grief; family empowerment; family-centred care; health care systems; making a decision about donation; organ donation; perseverance; systematic review
Year: 2017 PMID: 28680696 PMCID: PMC5444581 DOI: 10.1177/2055102917709375
Source DB: PubMed Journal: Health Psychol Open ISSN: 2055-1029
Details of electronic search.
| Line | Search string |
|---|---|
| 1 | (psychological or social or option or grief or grieve or grieving or bereaved or needs or bereavement or support or consent or decide or decision or experience$) |
| 2 | (brain or brainstem or circulatory or cardiac) AND (death) |
| 3 | (palliative or allocation or intervention or process or procure or procurement or procuring or transplant or transplantation or DCD or BD or post-mortem or cadaver or pre-mortem or posthumous or deceased or potential) |
| 4 | (family or families or relative or relatives or parent or parents or parental) AND (organ) AND (donation or donor or donate or donors) |
| 5 | (databases or Cochrane or Medline or Pubmed or Cinhal or Cinahl or Psyc$info or Embase or Elsevier) |
| 6 | TI (systematic* or narrative or integrative or ethical or theoretical or literature or comprehensive or review or overview) |
| 7 | (1 OR 2 OR 3) AND 4 AND (5 OR 6) |
| 8 | Date: 2005–2016 Language: English |
BD: brain death; DCD: donation after circulatory death.
Figure 1.Data selection – identifying and screening relevant reviews.
Summary of the features of the selected reviews.
| First author (year) | Aim (role players) | Search strategy described? (delimitations) | No. of studies | Method (PRISMA/AMSTAR) |
|---|---|---|---|---|
|
| Describe and compare approach strategies (organ procurement coordinators) | Not described (chapter in book – usual journal reporting format not followed) | 15 | Narrative synthesis (14/5) |
|
| Describe decision-making and decision evaluation (families of brain dead patients) | Yes; (English, Dutch and German studies published from January 1996 to February 2011) | 70 | Integrative review (22/9) |
|
| Identify determinants of donation (public and families of potential donors) | Yes; (English, French and Spanish languages) | 131 | Integrated framework (18/8) |
|
| Summarise evidence about nurses’ support (nurses and family of potential organ donors) | Yes; (English language) | 23 | Qualitative coding (21/8) |
|
| Describe family perspectives on deceased donation (donor families) | Yes; (English studies published before October 2012) | 34 | Inductive thematic synthesis (24/10) |
|
| Identify modifiable factors influencing decisions (family of potential organ donors) | Yes; (studies published before May 2008) | 20 | Thematic; narrative (23/11) |
|
| Understand factors influencing decisions (families of potential organ donors) | Yes; (research from Western countries published between 2001 and 2011) | 20 | Integrative review; thematic analysis (24/9) |
PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses; AMSTAR: assessment of multiple systematic reviews.
Summary of the main findings of reviews.
| First author (year) | Main findings |
|---|---|
|
| A family-centred approach incorporating support and information fosters trust and assists families to decide. Trained requesters build positive relationships, balancing the needs of bereaved families and patients awaiting transplants. |
|
| Most studies focus on consent rates, rather than family satisfaction. Skilled requesters exploring family values and deceased’s wishes contribute to stable decisions; respect is vital; providing choices fosters empowerment. |
|
| Explored how one’s attitude towards donation develops, and the communication of donation preferences by family conversation or registration. This influences family decision-making after a death. Social inclusion, interaction, self-efficacy and emotion were identified as important factors. |
|
| Identified two themes: (1) clarity of communication and understanding and (2) nurse’s competency. Support, understanding and care contribute to a supportive environment, enabling acceptance of death and consideration of donation. |
|
| Described emotional and cognitive struggle in an unfamiliar environment. Timely information and opportunities for participation improve satisfaction and assist families to find meaning. |
|
| Requester skills, timing, information, high quality care of patient and family, understanding of brain death and a private setting are modifiable factors influencing family experience. |
|
| Families focus on past (e.g. will of the deceased), present (e.g. comprehending the situation) and future (e.g. hopes and expectations) factors. Many consenting families find meaning in donation. |
Multi-dimensional nature of the in-hospital process.
| Features | Cognition | Emotion | Future orientation | Behaviour | Relationships |
|---|---|---|---|---|---|
| Resources and risks | Understanding vs confusion | Trust vs doubt | Hope vs despair | Efficacy vs helplessness | Closeness vs distance |
| Mechanism | Information | Sensitivity | New goals | Choices | Interaction |
| Delivery of care | Consistency; clarity | Patient and family care | Facilitate shift of hope focus | Acknowledge family roles | Encourage participation |
| Influencing factors | Pre-existing beliefs | Trust in system | Independent counsellor | Family resources | Available time |
| Factor modified | Information in various forms | Meet needs efficiently | Develop view of future | Adjust tasks to fit family | Family involvement |
The factors described above are not intended to be exhaustive but rather to illustrate themes identified by the review process. Each family’s experience is different and complex.
Facilitative tasks of the in-hospital process.
| Features | Adapt to environment | Acute stress | Roles and responsibilities | Active participation | Meaning-making | Anticipatory grief |
|---|---|---|---|---|---|---|
| Delivery of care | Staff support and guide | Normalise symptoms | Adjusting of tasks | Providing choices | Opportunities to share stories | Encourage family involvement |
| Influenced by | Past experiences | Traumatic event | Role of deceased | Medical trust | Global meaning | Hospital stay |
| Factor modified | Understanding environment | Understanding of acute stress | Family members take on new tasks | Level of family activity | Sense and significance | Meaningful ‘goodbye’ |
| Outcomes | Endurance vs exhaustion | Change symptom tolerance | Self-confidence vs self-doubt | Sense of agency vs anxiety | Meaning made vs dissonance | Purpose vs unclear direction |
Main tasks of the in-hospital process.
| Features | Accepting death | Acute grief | Post-death identity | Post-death bond | Decision-making | Family narrative |
|---|---|---|---|---|---|---|
| Delivery of care | Provide time of death | Care; understanding | Encourage sharing of memories | Facilitate family time with deceased | Clarity; adjust timing; setting | Opportunities to share stories |
| Influenced by | Hope for recovery | Family roles; prior losses | Openness in family | Nature of pre-death attachment | Family values; knowledge | Existing narrative and meanings |
| Factor modified | Family understanding | Family feel supported | Rich descriptions of deceased | Psychological connection | Family informed and ready | Finding links and patterns |
| Outcomes | Acceptance vs denial | Managing pain of grief vs avoidance | Shared view of identity vs diffusion | Secure vs anxious attachment | Satisfied with stable decision vs uncertainty | Co-created narrative vs lack of coherence |
Figure 2.Diagram showing family and staff systems, pre-existing factors and in-hospital resources, risks and tasks.
Figure 3.Systemic map of the psycho-social features of the in-hospital process at the time of a potential organ donation.
Figure 4.The diagram shows the in-hospital process as being related to developing capacity for action (on the left), which is vital later when searching for closure (on the right).